Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Jun 06, 2022
Monday Jun 06, 2022
When sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things.
Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives.
Here's my stab at it.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday May 23, 2022
Monday May 23, 2022
Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is a web-generated transcript of my interview with Garrie. Please excuse any spelling or punctuation errors. jc
Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc survivor. Garrie, welcome to the podcast.
Garrie Farrow: Thank you. Thank you. So much for having me today.
John Carlin: So you said it's 15 years plus almost 16 years. And you knew the anniversary date, didn't you?
Garrie Farrow: It's actually uh August. I started getting my appointments in April. So for me, April is the anniversary. But I didn't get the official diagnosis until August 16 years ago.
John Carlin: 16 years. That's a long time. And I want to hear about when did you first know something was wrong?
Garrie Farrow: Honestly, I knew something was wrong 20 years ago. Um uh I have a thing that I love, cute shoes and purses, and I have these fantastic boots that I love to wear. They were the greatest thing ever. And my feet and ankle started to swell. And um I used to play basketball in high school, so I'm used to ankle Springs. I know what my feet and ankles will do, but this was not normal. So probably uh about four or four and a half years in total going to different primary care doctors. And I am um a taller, larger woman. And so I've always been told, well, you need to lose weight. Like, I exercise every day. I'm not losing any more weight. But they're saying the reason my feet and ankles were swelling was because of the weight. So I went and lost more weight. Still couldn't wear the shoes, moved to uh a different city, found a uh new primary care position. Actually, my second one here in Tallahassee was the one who went, this is not normal. You are uh about 30, 31 at the point. This is not normal. Let's send you for a chest Xray. And that's how my journey officially started.
John Carlin: Wow. Chest X. You ankles hurt. So the first thing they do is send you for a chest X ray, which wouldn't seem intuitive, but I guess the doctor must have been thinking pulmonary sarcoidosis.
Garrie Farrow: Then she kind of mentioned she goes, It could be your lungs, it could be your heart. She goes for your feet and ankles be swelling. There's something vascular going on, and we don't know why. She goes, I'm listening to just using. I'm listening to your lungs. It sounded fine. You're exercising, um you're uh not complaining. You have any shortness of breath. So let's figure out what's happening with you.
John Carlin: Okay? Was that conclusive or was that just the next clue?
Garrie Farrow: The chest X ray was the next clue. They um realized at that point because you could see my lymph nodes on X ray and the lungs looked suspicious. And at that point, I was sent for a media style oscopy. Basically, biopsy ended up with a brand uh new scarf. And that's where they definitely confirmed that, yes, this was circadosis because after the chest X ray, they said this could be leukemia or Sarcodosis. The way I remember it was, I heard leukemia and possibly sarkidosis. And the leukemia scared me because I hadn't uh heard of soccer doses before in any major detail other than burning Mac.
John Carlin: Right. So after they figured out it's sarcoidosis with the lymph node biopsy then. Did they start with the normal prednisone routine?
Garrie Farrow: No. I um was seeing a pulmonologist local to my city, and I was told stage one, that four stages. And since I was at stage one, I had no other symptoms happening. There was no reason for me to go on any medications. And that if I ever started coughing or becoming short of breath while exercising, to basically come back. And I had one appointment a year later, just everything's still the same. But at no point was medication even talked about. I did go back to my um primary and asked, okay, now I've been diagnosed with Psychnosis. What does that mean? And she told me she didn't know. She goes, I could tell you this much of what I remember from medical school. I can't answer any of your questions. Go back to the surgeon and went back to him. And it was, yeah, you have stage one, but that's good because four is horrible. You're at one, so there's nothing to do. My um current pulmonologist, who specializes in Sarcodosis, uh she said, no, stage one is no better uh than stage four. You had symptoms, you just weren't coughing. She goes, Your lungs did not look good. There should have been some treatment started then, but that took um another shoot. I think it probably was probably about another three to four years before I started any official treatment.
John Carlin: That just amazes me. And I'm curious about the um stage one, stage two, stage three, stage four, which is the terminology that we're used to hearing for cancer patients. And I've heard other patients that I've interviewed on the podcast talk about it a little bit. No one has ever uh used that term with me. Can you describe the difference between stage one and stage four? Other than that, it's worse.
Garrie Farrow: Yeah. What I was told originally was that, yes, my lungs um were cloudy, but they were not completely infiltrated. And you could see my lymph nodes on Xray. Stage four is pretty much you're on oxygen. The lungs are completely Gray uh and looks like um ground glass completely covers the entire lungs. At stage four is how it was described um to me initially, that each stage, your lungs get a little cloudier, a little bit more ground glass until it gets to the point where you're not able to breathe. What I've been told uh recently and confirmed with more research is that, yes, the um stages do impact how the lungs appear, but you could be on oxygen at stage two. You could be um walking around not fine, but without oxygen uh at stage four, it's just showing what the impact on your loans looks like when you're just trying to look at the X ray or the MRI or CT. Go um ahead and actually, stage one, I believe, only includes the link notes and um any of the others only impact just what the ones look like.
John Carlin: So you and I are both on a number of committees with the foundation for Sarcodosis Research. And uh what I'm hearing and maybe, you know, maybe you don't. But what I'm hearing is this stage one through 4 may be just reserved for pulmonary patients because everything you've described is lung involvement. Whereas with cancer, my understanding is when you have stage four cancer, let's say it starts in your kidneys or whatever, it then has spread to other parts of your body and it's metastasized. So when we talk about stage four with sarcoidosis, we're not talking about it spreading to other parts of your body, even though that can happen. But that's not what the stages describe exactly.
Garrie Farrow: Which I find interesting because it would make more sense that they actually classified it that way as they do in cancer, because technically, thankfully, due to one medication, my lungs are clear. My lymph nodes have shrunk in size from being really big to not being outfit. But I had other um organs being impacted by sarcotosis. So to me, following the cancer way of being, I'm probably more of a stage three just because I uh have multiple organs impacted by sarcosis. But currently it's only for lungs.
John Carlin: Got it. All right. And is it still currently after almost 16 years, is it still just in your lungs or has it spread?
Garrie Farrow: It's spread. And it actually took about ten years um to spread.
John Carlin: Um.
Garrie Farrow: I noticed some skin issues, went to my local dermatologist. And first I was told Eczema, then I was told Psoriasis, then I was told I had both went to sarcosis. Um dermatologist. No, this is sarcoid. That's what this is. And so, yeah, the past five years. So past five years, skin, eyes, bones. And now um I lost hearing in the left ear. Um and that's on immune suppressors. Um.
John Carlin: You said after about four years, a doctor said, oh, no, you need treatment.
Garrie Farrow: Yes.
John Carlin: What treatment did they come at you with first? And how has that progressed?
Garrie Farrow: The lovely steroids. The lovely steroids. I was on 60 milligrams for um about a year and a half. A little under. And um that, of course, weight gain, prediabetic, hypertension, um you name it. The moon face. All of it was taken off of that because of the impact. But at that point, there still was not a lot of discussion about new medications. And it was pretty much okay, your lapse look good. We're just going to kind of watch you. Then the eyes started, well, the skin. So then it was steroid injections directly into the skin and steroid creams, which thankfully um no over whole body and past. Then when the eyes and the bones kicked off, that's when I was put on methotrexate. No steroids at that point, thankfully. But then when the um bones kicked off, that's when they said, okay, I started low dose steroids and about five milligrams for three years. That pushed me over the edge with the diabetes. And let's see, um at that point, I think it was year two is when I went back, because by that point, I'm taking metformin and even though they said five um milligrams of steroids you shouldn't be gaining weight. I probably took uh 60 mg. I gained £80. Finally, after not being on steroids for a while, I had lost about 40 started the low um dose and they said you should be fine. Five milligrams is not going to impact you. I probably ended up gaining back 30. And so after year two, I said, okay, look, I need to switch because steroids and I are not working out. You're telling me I need to lose weight? I'm doing the things I need to do and yet my weight is not going in the right direction. It's still keeping up. So that's when I was taking off the steroids and put on the flutter mine, I think I believe I'm saying that correctly, but yeah, and I had to take off methotrexate and switch to uh Humera, which didn't work because of the bones. And I'm now doing rimicate infusions um or Influx map infusions with the Lip global cage.
John Carlin: Is that working so far?
Garrie Farrow: Actually uh going June to get repeat X rays of my fingers. Uh they showed no further damage is what it was last year. So we're hoping it remains the same now.
John Carlin: We've kind of just jumped right to I want to hear more about your eyes and your bones. Sure. When you have sarcoidosis uh in your bones, what does that look or feel like? How do you know it's there? What is the deal?
Garrie Farrow: I know it's kind of hard to see on uh camera, but the fingertips of these three fingers are actually about now only about two times the size of the fingers on this hand. And uh what started off as just a finger swelling then turned into I would go to pick up a pen or I'd go to pick up my purse or anything and um I could literally feel something crunching in my fingertips. And I was just like weird um because every once in a while your fingers might pop or you crack something. But I went, no, that is literally in the fingertips. I went to my local PCP and he told me it was finger clubbing due to socketosis and lack of oxygen. My sister actually has or has finger clubbing. She was diagnosed after I did because I pushed her. And so I've seen what finger um clubbing looks like and all her fingers were impacted.
John Carlin: I've never heard that word before. Finger clubbing. Fingers look like little clubs.
Garrie Farrow: Yes. I don't know if you can kind of tell on camera. You see how this one's more rounded than the other?
John Carlin: Yeah.
Garrie Farrow: It becomes very bulbous is the other word that they like to use. And your nail bed actually changes shape where instead of being just if you look at your hands, just regular nail bed, they actually expand because since the tip of your finger is getting bulbous, your nail bed has to go with it. And it actually started splitting because my nail bed couldn't keep up with the growth of the finger. So it was splitting. And as I initially pushed um back because I told him that every time I come to see you or see my specialist, my oxygen gets recorded at 98%. 99%. I'm not wheezing that I'm uh aware of, and nobody's told me otherwise. And I've had breathing tests. And if that was the case, all of these should be bulbusy and look funny. It is literally. These three went to see my Pomodologist, and I was on methotrexate. And so they were really concerned about any of the other side effects that method track state could have. And she goes, okay, is there anything else going wrong with you? Because your loans look great. I don't normally see patients like you because phenomenologist. So I'm not used to seeing healthy loans anymore. Anything else going on? And I went, look. Uh and she goes, that is not normal. And I haven't seen that with methotrexate patients. Let's send you for a hand Xray, which then worked into a whole body bone scan. And I now have a Rheumatologist because they realize that uh on Xray, my um fingertips, all of them, actually. But these three are the worst. My body has attached the bones um to the point to where it is broken down and my body is reabsorbing the bone. So the reason they're swelling is because um there's fluid, and that's what causes the swelling. And I actually have four toes involved as well. But all of them, you can tell all of them have been attacked. It's just these three were hit the worst because I dropped a box on them while moving.
John Carlin: Sorry, is it painful? Not dropping the box, but I'm just walking around every day with your toes. And does it hurt?
Garrie Farrow: Yes, it depends upon what I've done that day. Um some days are worse than others. I am a trainer, so I constantly um typing. And I love playing video games. So playing video games, typing certain things. Um there are days where I don't want to use my fingers. It's not worth it. Or I have become very adept at using my thumb and my ring finger on the right hand because um it's not sensitive to touch per se, because doing this does not hurt. But actually going to grab something unless I can um figure out a way to grab it down here. Think of the worst bruise um that you've ever had. You'll get that you hit it just right, and it doesn't really hurt until you get it in the right place. That's what it feels like.
John Carlin: Okay, let's talk about your eye.
Garrie Farrow: Yes.
John Carlin: What were your symptoms initially?
Garrie Farrow: Just a lot of redness. Tallahassee knowns for pollen. Uh and so I just put it off that it's the pollen. Um it is the green season, and it's uh a lot of redness. And then the conjunctive not conjunctivitis, but outside of your eyes were constantly inflamed, like, felt like I had dirt in them. And again, pollen. I just pushed that off. It wasn't until I have glasses that actually with a tent. I just lost the name of it that you go outside. The sunlight and your lenses.
John Carlin: Yeah, they get darker. Yeah.
Garrie Farrow: I walked outside. Even with that on, literally stopped in my tracks, uh shut my eyes, and was like, oh, my God, the Sun's too bright. My eyes literally hurt. The only way I could um describe it is like a shooting pain through my eye. And I stood there just going, oh, my. Okay, this isn't normal.
John Carlin: When was that? How long ago was that?
Garrie Farrow: That was probably about uh six years ago. Yeah, about six years ago. Um and again, I went to my local Icare uh provider, and it was like, yeah, this is arthritis. And was um prescribed steroid drops. Then it continued, and I was diagnosed with Uvitis and ended up getting referred to an ophthalmologist uh because I kept going to my optometrist because, of course, my glasses. And they were like, yeah, this is a Sarcodosis issue, not just, you know, you have recurring eye infection. And so that's how the eyes joined up.
John Carlin: Wow. Is that controlled?
Garrie Farrow: Currently, yes. Thankfully, with the eyedrops, uh uh I think I was on the eyedrops for about a year, and I go back in right now, thankfully, because the last test, uh my last exam came back fine. I'm set to not have to see them for a year, but when my eyes are unhappy, I probably see the ophthalmologist about every three months. And drops and tests I do because of the last one, has a beginning of a glaucoma in one eye because of the recurrent flares in my eyes. So we're kind of watching that.
John Carlin: You said the magic word flare, which is what a lot of Sarcodosis patients fear.
Garrie Farrow: Yes.
John Carlin: You get everything under control, and then all of a sudden you wake up one day and things aren't right, and the Sarcodosis has become active wherever it is in somebody's body. When you just use the word flare, are you talking about flare, as in bright light hitting your eye or a flare up of the Sarcodosis in your eye?
Garrie Farrow: Flare of the sarcidosis in my eye. Uh for me, the paint, it feels like a flare of a light in my eye, but my body has um flared itself. There's something in my immune system that has gone into overdrive and done its attack like it usually likes to do.
John Carlin: You mentioned Humera, and that didn't work. You said, because of the bones, I think, is what you said. What is the connection between Humera and bones?
Garrie Farrow: Actually, none. The only reason I was put on humor was an experiment because um the methotrexate obviously worked perfect for the lungs. But because my bones were starting to go, she was like, okay, we can't put you back on steroids, obviously. So what can we do? And at that point, um Humera. Uh it wasn't officially approved for off label use, but it was showing some impact on the immune system with patients that had Crohn's disease um and really severe, I believe IBS, um and I apologize if I'm incorrect on that one, but it was definitely used in Chrome's. She said, okay, let's try something, because obviously your body is still in overdrive. Let's find a different method to shut off uh your immune system. Humera was picked because there uh was another medication, and I'm blanking on it right now that again, it was another off label cancer medication, but there were so many other side effects, and one of them because of uh where my weight and my diabetes were. Uh she was really hesitant to use that one. So that's why Humor was used. And it was just a test to see. Would it help with my fingers? Because at this point, my options were limited.
John Carlin: And uh you ran it, what, for six months?
Garrie Farrow: I've been on actually a year because they said it's six months just to figure out if things are going left or right. And the first six months was to make sure my loans did not reengage, for lack of a better word, be changed in how they were going. The bones, after um six months at least, didn't show further damage. They were like this, and I'm never going to regrow the bone, but at least it didn't look like it had uh gotten worse. The reason I had to switch from Humera to the influx of Infusions is the bones remained where they were, but then I lost um the hearing in the left ear, and they're like, okay, so obviously something is not quite right again. So Humor kind of stable things, um or at least shut up my immune system enough, but not enough. So that's why I'm on infusions.
John Carlin: Let's talk about your ear. What happened there.
Garrie Farrow: Again? My wife and I woke up one Sunday morning with a sinus infection. I'm sorry. Through all of this with the whole eye things, I've had problems with my sinuses um um for quite a while, but it was after the eyes I ended up Sarcodosis caused me to have polyps um inside my nose and in the back of my throat had the polyps removed. They're like, yes, this is definitely sarcoidosis, but you're already on all these other medications. That's um what we would have prescribed for you. So call us back if something changes. I woke up one Sunday with a very bad sinus infection. Um the usual signs and symptoms. And that's um when I woke up that Sunday morning and my boyfriend asked me something, but he was on this side of me and I did not um hear him at all. And he thought I was mad at him. So it was later on the day, um throughout the day, he was like, okay, what did I do to make her mad at me that she wouldn't respond to me? And it wasn't until later on that day that he um asked, I said, I didn't hear you. And so he went over to that site and said something I'm like, I literally can't hear you. I had the same day appointment Monday. And they were like, oh, that's um your sinus infection. Once your sinus is clear, here's an antibiotic. Your hearing will return three weeks later. Found out um my ear hairs are fine. I have no tumor pressing on the nerve. Further research. It's just one of the uh symptoms that you get. Single sided hearing loss caused by sarcosis.
John Carlin: That is just amazing to me.
Garrie Farrow: Yeah.
John Carlin: So you're walking around your job is you are a trainer. What kind of training do you do?
Garrie Farrow: Software. Technically, the official Titles application is Trainer. Well, the full name is Electronic Health Record System. I focus more on the practice management side, but when we do major upgrades and releases, both of us end up training the doctors, the nurses uh and receptionists on how to use our system and what changes come into being.
John Carlin: You have the sarcoidosis all over your body. How does that impact your ability to just live your life day to day?
Garrie Farrow: It has an impact. And of course, the medication side effects play a greater role in how far I do things. The pain, like I said, it's preventing um me from I used to knit as well. I don't do that anymore because my fingers get in the way. And then eventually after time, it really hurts too. Nit I saved my typing for work so I don't play online um video games as much as I used to. Just because I need to be able to type at work. Just anything, to be honest with you, um gripping a jar to try and open it. So I bought a jar opener hearing AIDS so that I can hear on the left side. Um because the other part I realized with me not hearing, I was starting to lose how well I was enunciating words. Uh i won't call it slowing my words, but I was losing just um how well I was speaking. I parse um out my time, to be honest with you, if I know I'm going to take a trip, I don't do much before the trip and I'm definitely not doing a lot after it because I'm just that tired. And when I say trip, my doctors are in Gainesville, which is about a two and a half hour drive from where I am. And going to see a doctor is a trip. Because if I do it in a day, uh when I come back, I'm not going out to eat. I'm not doing what I usually do.
John Carlin: You're not talking about going to Paris?
Garrie Farrow: Yeah, I wish. I really wish. No, I'm just going to see my doctor. My father lives two and a half hours in the other uh direction. So even just that most people it's just a day trip. No, just a day trip is a lot of energy.
John Carlin: The fatigue is real. Then. Do you take a lot of naps? Do you need the naps? Do you need extra sleep at night?
Garrie Farrow: Yes. Problem is, you get to that point where you're so tired. Even though you lay down, you can't fall asleep certain days. I'm like that I've laid down. I would uh love to go to sleep, and I'm just that tired of where I can't. But yeah, naps are real. Naps are required.
John Carlin: Wow. Um sorry. Something's going on with Zoom on. My end used to be if there's just two people, you could talk as long as you wanted. And it's now telling me that I've got that 40 minutes time limit that you used to only get when there were more than two people. And I'm afraid it's going to time out on me. I've still got a lot more things I want to ask you.
Speaker UNK: Sure.
John Carlin: Let's end this meeting and go back um and click that same link again and see if it'll let us start another one.
Speaker UNK: Absolutely.
John Carlin: And if it doesn't, I'll go in and I'll get another link and send um it to you. Just watch your email.
Speaker UNK: Okay.
John Carlin: All right. So I'm going to end it and then let's click the link and see if we can rejoin.
Speaker UNK: Okay. Perfect.
Garrie Farrow: Okay.
John Carlin: All um right. Garrett, you're doing a lot of work with the foundation for Sarcoidosis Research, as we mentioned just a moment ago. And one of them is you're on the Women of Color committee. For people who aren't up to speed on that, what is that? Committee's responsibility?
Garrie Farrow: Sarcasm actually impacts the African American women. I was going to African American community, and it does. Uh but women are more impacted by the disease that if there's going to be a higher hospitalization rate, higher mortality rate, it impacts African American women about up to 13 times more often than African uh American men, even though they are impacted by the disease. Unfortunately, my sister died um from her circuit is three years ago. That's um what made me um join FSR.
John Carlin: We buried the lead. I'm so sorry.
Garrie Farrow: That's um okay. No, actually, it's not that I don't talk about it, but it's really uh the reason I joined FSR and why I applied in the first place, because um of her experience, um the difference between her experience and mine. When I saw the Women of Color committee come up, that really made me go, okay, I need to be a part of this because of her experience and mine and just in general uh and talking with different African American people and some of our residents and going um to see a physician, I don't want to say it's lack of exposure um to certain diseases and a lot of us are more prone to I'm always tired. I don't feel well. I don't have time to go to the doctor. So he's just going to tell me or she's just going to tell me what I already know. So I'm just not going to go. And I wanted to be a part of that committee to help get more word out there that this is not a disease, that you can just be like, oh, it'll be fine. I'm tired. I'll be tired tomorrow. I'll be tired next week. Let's just wait it out. Um and it's this disease. You cannot just wait. The longer you wait, the more damage that's done. And you can't recover from that damage. Once it's damaged, it is damaged. So that's what made me decide to join up.
John Carlin: What was your sister's name?
Garrie Farrow: Sharon. Sharon.
John Carlin: And she had pulmonary sarcoidosis.
Garrie Farrow: Pulmonary and skin. She never went in and got diagnosed for skin, but the spots on her face, um like you have the exact same thing. Go see a dermatologist. Don't have time, don't feel good. From the city that we were from. Um and her doctor uh only used prednisone. Steroids was their fallback. Even when with my methodrest state, when I realized what it was doing for uh me, I was on the road from Gainesville back home, calling her. Go see your doctor, get methotrexy. I promise you, it impacted her lungs away. I'm not sure if it was just due to time. She was a year and a half older than I was, so I'm not sure if it's just due to age, just due to um if Sarcodosis had been passing or a whole lot longer. Um so, yeah, by the time they caught it, by the time with steroids, her lungs couldn't take it literally. At the end, they said that we could um not use any more medication to get any of the fluid off of her lungs. Her lungs are filling up faster than we can get it off of her. And that's what actually killed her.
John Carlin: Oh, that must have been so sad.
Garrie Farrow: It was devastating on the family, because that's not what's supposed to happen. As my father said, you're not supposed to bury your children. So it was hard.
John Carlin: So you stepped up and reached out to the foundation for Sarcodosis Research, even though you had been dealing with Sark yourself for a good long time at that point, yes. And so now you are a fellow advocate, and our role as advocates is to help other Sarcidosis patients.
Garrie Farrow: Yes.
John Carlin: You're on the Women of Color committee. You're on the patient advisory committee with me. And are uh you a Navigator as well?
Garrie Farrow: I've um applied to be a Navigator. The application is uh closed in a couple of weeks, I believe.
John Carlin: Okay, so what does it feel like these days when your job is outreach and counseling other people with Sarcoidosis, and what do you say to them?
Garrie Farrow: It's a weird sensation, to be honest, because um it's not where I saw my life going. Even though I'm a trainer, I'm an introvert. And training for me is easy because I'm talking about the software. It's not talking about me in working with FSR, doing the advocacy. Um it's a different place for me to be because I'm talking about yes, I'm talking about the disease, but I'm talking about my experience with it. So it's pushing me outside myself in ways that I'm not usually used to, even though I do speak publicly for a living. So it's a different place. But I have to um admit that I do like it because getting the word out about psychedosis helps. Unfortunately, my coworker, I think she's okay with it because um I was so vocal about it at work. She was running into some health issues and was diagnosed with pulmonary psychnosis end of last year. Yeah. And it was just like, oh, okay. I'm sad that you're part of my club, but I'm glad you got diagnosed. Right. Because otherwise she was having some interesting things that kept coming and um went and had a biopsy.
John Carlin: So many people say they don't know anybody else that has sarcidosis. You had a sister and now you got a coworker.
Garrie Farrow: Yes.
John Carlin: It's amazing. So your coworker is doing okay?
Garrie Farrow: Yes. She's currently on methotrexate, and I think the last time they did uh the CT scan, things were looking good and they were going to keep her on the same dose. But she's in the first six months. I believe so, yeah. She's got that the milestones to hit before you can really say things are going well.
John Carlin: Is she also an African American woman?
Garrie Farrow: No.
John Carlin: Okay. So it uh just keeps on coming then. But I'm sure that she was curious because she had you as a resource.
Garrie Farrow: Yes. And it was one of those kind of different um conversations because it's not like she works in my Department, but she's not like a close coworker. So it was one of these we had to kind of talk to you for a second. And she goes, yeah, I'm going in. And I don't know quite what to do or what to expect. So I put on the FSR hat. So the first thing you need to do is go out to the FSR website, go to stocksoccervices.org, have your husband go out there as well, because your life is going to change, even though you haven't been feeling well and it's already been changing. If any medications are involved, then please don't do steroids. Do some, see what you can do. Your life is going to change and how it impacts you and your family. And she's got grandchildren. Um and you need to do this research now and don't think it can only stay within the loans. You need to think whole uh body. Don't just discount. Well, I'm older. This must be arthritis pain. It's like maybe it is, maybe it isn't.
John Carlin: Uh are you doing support groups or anything like that?
Garrie Farrow: I'm not. I thought about it, and my introvert little Gremlin was like.
John Carlin: Um.
Garrie Farrow: Uh I thought about it and looked and um I think this is the introvert part. There's nothing local to me. And so I was just like, okay, I never um done the next step.
John Carlin: I was down the road a little bit with starting. We were going to have an event and maybe have a support group grow out of that here in my region in Roanoke, Virginia. And then the pandemic hit and everything got canceled. And that was also about the time I started the podcast for me. I kind of feel like the podcast is my support group because people are listening to you right now, and they're hearing what you're saying. They're hearing what you're going through. And at least if they're looking for answers, they're hearing some of what is normal if there is such a thing with Sarca Dosis. So they may have similar symptoms or similar issues with the prednisone or with the methytrexate or with the ramicade you've mentioned all these things are things that I've been on as uh well. Initially. I'm just curious because you um said for a long time you didn't reach out to FSR and you wrote an op Ed for your local paper, and you said you didn't really research Sarquidosis at first. Was it because you just didn't want to know? Or you just kind of trusted your doctors to know what needed to be known and you were going to take your medication and go on with your life, go back to that time and think what was going on with you then?
Garrie Farrow: I trusted my doctor in that stage one. And again, my problem was I was so focused in on leukemia. That was my fear. And I had come home, and I found one dot Gov website that mentioned sarcoidosis and lung involvement. I was like, okay, but leukemia was huge. So once I got that diagnosis of sarcoidosis, I was so relieved that it wasn't leukemia that uh I didn't push further on myself or the doctor. Because, of course, now hindsight being 2020, even stage one, I um should have said, Excuse me, are we sure I don't need to do something else? Anything else. I didn't even think about getting um a second opinion. And even the only thing I will say, thankfully, when I went back to um my primary and she told me she didn't know anything about Psychro dosage and couldn't answer any of my questions and go see the surgeon, I ended up switching to an internist who knew about Sarcodosis. Uh but even then again, I put that trust in the physicians, um didn't educate myself on it until things started changing.
John Carlin: Yeah. And then all of a sudden, you jump in. I hear the same thing from people that and it can be kind of scary. I've been on some of the online threads where people just say such terrible, awful things about what's going on with Sarcodosis, but they're not saying it in a reasonable, thoughtful way, which isn't their job to do that. But I just didn't want to see it, and I didn't want to know. Terrible disease, terrible medication, blah, blah, blah, blah, blah. And then it would just stop. There wasn't any further explanation because people were just typing responses to one another, almost like reading a Facebook thread on a controversial issue, and people were just going after each other.
Garrie Farrow: And nobody's talking about that. Okay, yes, sarcoidosis is not a fun disease, but there are ways to function that yes, your life has changed, but this is not this is not the end of it. There's other things that you can do. Nobody likes to put that on the thread. That's not as interesting when you're looking at posts, right?
John Carlin: Yeah. People just have to be so sensational with their posts, but they're probably on that thread because they're either bored or mad or both. And so you're seeing the worst of I just stopped looking, honestly. But I found that I probably should have looked further faster. And I'm hearing you say the same thing.
Garrie Farrow: Absolutely. And I'll admit because I was surprised that I didn't know how long um FSR had been around. That when I started searching for sarcoidosis. Originally, I only got the Gov um sites, Medline, WebMD, and I just lost the name of the other one that has a symptom um checker on it that no doctor loves. And uh I did not start finding out about FSR until I probably was starting to search. Every week I would go out and just um Sarcodosis, pulmonary Sarcodosis. Let me see what I can find, because this is ridiculous, that I know it's rare. And at that time, I think it was 200,000 in the US were being affected. But there has to be more. There has to be more that this um can't be just this couple of sites. And luck was on my side and FSR popped up because I was starting to get to that point to where I think I've been doing that for about a couple of months. Uh i was starting to get frustrated because the information was always the same short little info or like you said, the posts that were just depressing me, making feel like, okay, I'm not going to die tomorrow, but I'm going to pass soon. I don't want to hear this anymore, uh but I found that it's our site.
John Carlin: Right. Is there anything else you want to add to this conversation? I appreciate you kind of bearing your soul here with our listeners.
Garrie Farrow: Honestly, if one person okay, not one. But if um more people would, if you're ever finding yourself going, okay, this is discounting your own symptoms and you're thinking, well, it must just be allergies, oh, I'm just tired. And I'm always tired. Sarcoidosis doesn't just impact the lungs. The um heart can be impacted. Your eyes, the skin, bones, you name it. It can um impact the body. And even with I don't have time, I don't have the energy. Just go to that one appointment and talk to your physician, um even if you're not the one having the symptoms. Everybody talks to their friends, everybody talks to their family. And you always hear that common issue with that family member, with that friend, talk to them, get them to go. Because even if it's not Sarcodosis, it could be anything and everything else they need to go in and be seen. And it's not to say that don't trust your doctors, um but if they tell you, okay, we think you have this or we have confirmed this diagnosis. Do your research go out there? The internet is huge. Yes. You're going to run into some information that's when you do more research just because you found one answer, you found one source you don't stick with just that one source. You look at everything as much as you can and get that knowledge for yourself so you know what you're going to have to live with and that helps better prepare you for your next office visit.
John Carlin: Find a doctor that is a specialist in sarcoidosis. Yes, there are lots of doctors who may have one or two Sarcoidosis patients. That's not the same thing.
Garrie Farrow: No, not even close to it. As you are well aware, Sarcidosis is so varied that there's a commonality amongst all of us. But how sarcadosis impacts you is different than how it impacts me and yes, it is a disease of granuloma but how your body takes that granuloma you really need someone who has a breadth of knowledge not just like you said, one or two Z is not enough knowledge for this disease, right?
John Carlin: thank you for joining me on the Sarfighter podcast.
Garrie Farrow: Thank you thank you for having me. I love listening to you. I've watched your podcast before so this is fantastic. This was fun.
John Carlin: Great. Thanks.
Garrie Farrow: Thanks. Bye.
Monday May 09, 2022
Monday May 09, 2022
Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there.
Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling.
In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives -- and their expectations.
(Be sure to listen at the end for the Full version of Zombie - The official song of the Sarc Fighter Podcast!)
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Apr 25, 2022
Monday Apr 25, 2022
Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests.
Jack Cardioversion image
Show Notes:
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Below is a web generated text version of my interview with Jack Boepple. Please excuse any spelling errors.
Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast.
Thank you. Glad you to have me.
So you reached out to me after listening a little bit because, • • uh, you have cardiac sarcoidosis. How did you first find out that something was not right with your heart? • • • • • •
Um, actually, it was the event itself. So three years ago, March, • • um, I'm sitting on a couch • • • and I could feel • • some palpitations going on. And I put my hand on my chest and it felt like my heart was just rolling. • • So I asked my wife, can you just check my pulse? So she did, that looks fine. Then she put her hand on my chest and she's like, we got to go to the emergency room now because it was just doing all these flip flops.
She could tell.
She could tell there was something wrong. And I'm like, uh, • • I've had palpitations before. I'm fine. I'm just going to play through • • • • um. • • And so I didn't do anything. That was a Friday. • • And I woke up the next morning and I was still off. • • So I took a baby aspirin I sent a note to my primary, uh, provider, realizing through the portal, realizing she would not see it or address it until Monday. • • And then that day, we went for a long walk. We had friends over, smoked a cigar, had some wine, sundae, went for another long walk, came home, got on the rowing machine, rode for 45 minutes, and by rowing, actually felt better. Um, but I got a phone call on • • • • Monday morning from, um, the primary nurse. And she said • • everything you just described to me, you need to be in the emergency room right now. And I said, I don't want to go to the emergency room. So she made an appointment for to see the primary. And I saw her in the afternoon and, • • • um, she took an EKG • • and she used this very technical term • to tell me what she saw. It looks funky. I'm like, what does funky mean? Uh, so she's like, I think you need to go. I want you in the Ed. I mean, right now. • • And • • • • her office was like a 20 minutes ride from • • • • the, um, hospital. And I'm like, • I want to send you an ambulance. But you're not going to go, are you? I'm like, no, • • • • • I drove to the Ed, • • they checked me in, they did another EKG, and when I got to the Ed, they fast line me. Usually you have to wait forever. I got right in. They did another EKG, they said something's funky. Then they brought in a cardiac specialist. He said the same thing. So they kept me for observation. • • • And the next day, they • • • • • • • did an EKG and they said, based upon those results, we either going to send you to stress, uh, test, or we're going to do an angio on you, uh, angiogram. And I'm like, come on, • • • • • bring on the stress test, because, • • • • um, • I work out quite a bit. • • • • • • • Um, • • • • • • • • • • • • • • • • • • • • I'm losing the term, but all my blood numbers come back great. • I mean, there's nothing wrong with cholesterol. My cholesterol numbers are off the scale. Great. • • • • • • • • • • • I'm like, come on. There's nothing wrong. So then they • • • decided, um, they're working to do a stress test. They're going to do the angio. And I got someone asked me, are you ready to have stents put in your heart? Like, what are you talking about? • • And I'm like, sure, but you're not going to find anything. And so they, • • • • • um, • • • bring me in, I do the angio, and I come out of it, and they're like, yeah, you're right. There was no blockage. Nothing. I'm like, yeah, I told you that, right? But we still want to hold you. And now it's about 400 in the afternoon, and my wife's been there all day. And • • • • I say, go home. Go get some lunch, go take a shower, go feel better. • • And • • • • • in the room talking to a nurse, and next thing, there's four more nurses flying in the room, • and they're saying, we got to go to ICU. I'm like, what? We got to go to ICU now.
Wait, you're feeling fine? They've done the angio. • • • • • • • • • I know, but the listeners don't know yet. • • • But you and I live, uh, in a parallel • • • • lifestyle, uh, with respect to the way we work out. You were biking 120 miles a week. You've done a half iron man. You are on, uh, your rower all the time. So you're not just, like, a kind of standard walking around fit guy. Fitness is your lifestyle. • • •
Absolutely. • • • • • • • • Not only is it done for physically, but you probably can relate to this, that it's a mental release. And so when you're doing you're on your bike or you're working out, all of sudden a you're solving all the problems you're trying to work through.
Yeah. So the nurses come rushing into the room, you're sitting up saying, okay, something's funky, but I'm killing it on all these tests. And they keep accelerating the level of care, • • • • • right?
All these nurses are running around me, and I have one nurse just staring at me, and I'm staring at her, and she goes, hello. And I say, hello back. And she jumps backwards. • • So apparently I found out later that • • • • I think my heart rate is, like, • • • • 100 and $8200 something very high. • And apparently, when it's that high, um, you're coding. And so they're not used to anybody • • being conscious when this happens. And so • • • • they're willing me down to ICU. I'm fully conscious of what's going on. They get me in there, they hook me up, and, • • • • • • • um, • • • they're pumping me full of all these • • • drugs, um, to try to get the heart rate down, Amyotarone. They just give me an IV of it. They're just trying to do this. • • • And after about 8 hours of my heart at this elevated rate, they come in and say, • • we're going to have, uh, to shock you. I'm like, really? And • • • • • • • • • • • I'm like, in the morning now, • • • • • • • • • • • • • • • • • like, wow, this is real. All of a sudden, this is real. • • My wife is with me, and I'm like, I want her with me. But I'm like, that's selfish. I don't want her to see me be shocked. So I asked her, do you want to be here for this? And she's like, no. • So she leaves the room, and they give me, • • • um, a Twilight drug and said, you won't remember anything. • • Uh huh. So they hit me. I remembered, no way, • • • really.
And this is to get your heart rhythm back into a normal range, right?
It's a • • • reset. So they were trying to reset my heart. And it • • did. • • • • • • And, • um, they said most people, just after it happened, the nurse said, you did so well. I'm like, what does that • • • • mean? They said, you didn't swear. I'm • • • • • • • • • • • • • like, I got through that. • • • • • And, • • um, they described it like being hit by a truck. And I said, I don't know what that means, but I played football, and I feel like I just got hit by a professional linebacker, and I didn't have any pads on. I mean, it just wax the hell out of • • • • • • you. • • Uh, so the rest of the night and when you're nice to • you, you're watching your • • • monitors. • • • • • • • • • • And I said a prayer that • • • night, and I said I would never, ever talk about it to • • • anybody. • • And a few days later, we had someone visiting us, a good friend of ours, and she was on a spiritual journey long before I was. And she asked the one question where I had to tell what • happened. And she asked, how does this change your relationship with God? And I looked at her, and I'm like. I said, it didn't. I said, when I'm sitting there and I'm watching those monitors and I'm watching my heart, trying to get back to where it was, this abnormal • • • state. I said a prayer of thanks. I said, thank you for the great life I • • • had. Please watch my offer. My wife. Please watch over my • girls. I'm not the type of person to sit there and beg and plead. So I said a prayer of • • thanks, • • • mhm, because I've been thankful for all the great opportunities I've had. Sure. • • • So the thing I said I would never talk about. I talked about. • • • • • • And it's been a real journey since then. • So then the doctors are trying to figure out what caused all this. So they went down the Lyme disease • • route. • • • • They did, um, all these different things. I did a cardiac MRI. I don't know if you ever had to do one of those. That's not one of those MRIs where you can just put in the tube. I fall asleep in those things.
Mri I do, too. That doesn't bother • • me.
Yeah, so they put me in, but you got to hold your • • • • • breath throughout, um, the test so your chest isn't moving up and • • down. And so they can isolate what's going on the • • chest. And after that cardiac MRI, they sort, uh, of had an idea that maybe it was sarcodosis. So that was their working theory at that • • time. And they would not let me leave the hospital until I had an • • • • ICD and, um, pacemaker installed on my • chest. So from the time I entered the hospital, the time I left, it was eight • • days. Went through all these • • • tests. It wasn't • • • • • • • • • until several, um, weeks later that I actually did a Pet scan. And that was basically their • • confirmation • • • that it looks like sarcastosis. As you probably know, they never can say it is sarcodosis unless they do a • • biopsy and they can actually confirm it. Well, Pet is noninvasive, • • • so, • • • uh, they figured out it looks. • • • • • • • • • • •
Like where in your heart, Jack, is it on a valve. • • • • • • • • • • • •
Or the way it was described to me, it's both on the • • • inside and the external of the heart. And that's the tricky part is the external part of the • • heart. The internal part of the • • • • • • heart. • Um, you can eventually address through ablazion. But if it's also on the external part of the heart, the external ablaze procedure is much different. They have to go underneath your ribcage and • • • up and then break the sac around the heart, then try to do the blazing that way, which is a much more tricky operation. Yeah, but I went from being on no medications whatsoever to being on. I can't tell you how many • • • • • • pills. One of the reasons I reached out to you is a lot of the folks talk about how the sarcmens just beat them up. And I've been fortunate. • The methotrexate I'm • • • • on and, um, the pregnantone I'm • • on, they really didn't, um, beat me up too bad. But the cardiac meds just wailed on me. Amy odorone. One of the side effects of amioterone • • • • • • • is, • • um, sun. But if you get in the • • • • • • sun, you just start burning up rather quickly. Like I could literally, on a sunny day, walk across a sunny parking lot when my wife would pick me up from the train station and I'd be beat • red. So it turned me into a • • • • • vampire. And you're an outdoors guy, right? • • So, nine, 09:00 the morning to four, 04:00 the afternoon. I just stayed in the • • shadows, and it • • just killed me. Just. • • Absolutely. I wanted to be. • • • • • • • • •
Outside. Are you retired • • • or what is your job? Were you not working? What was going on then?
So I'm still working. Uh, • I work for, um, Blue Cross. Blue Shield of • • Illinois. I don't know if you've ever, um, heard of Lean or Six Sigma, but that's sort of my gig. Basically it's process improvement type of work. I go in and look at • • • • • • things. • • • • Um, yes, but in the summer months, I like to be outside. I love the • • • • • • • • fish and do all that stuff. So that was really a Downer trying to get addressed to those drugs. And there's other drugs that they keep on wanting to slow your heart down. So lisinopril is one of • • them. It just slows everything down. And I was being lethargic, and I'm like, this is not how I want to • • • • • • be. And so that sort of started the journey towards getting off. How do I get off? Uh, these cardiac meds. So they transitioned me about a year later to this drug called Soda • • • • • Law, which doesn't have any side effects. Amy, odorone, but it has different side effects, which is more • • lethargy. And I'm • like, I can't do • • • • • • • • • this. I started, um, exploring • • • Ablation and • • • • • my, • • • • • um, um, electrical cardiologist. He's done a bunch of Ablations, but the fact that it might have to be both internal and • external, he said, I want to give you • • to refer you to one of the experts in the field to do this, because if it's external, I don't have experience doing that.
Tell us all what Ablazion actually • • • • is.
So my understanding, I'm going to get this wrong, and you get people. Okay.
I won't correct you, that's for sure.
So it's basically the same approach as an angio. They come in • • • through the leg, • • and when they find a • • • • • • • • • • • spot, • • um, they believe is • • Sark, they try to poke it and figure out, is this causing the heart to go crazy or not? Yeah. And if it • does, then • • • • • they do, um, some type of cauterization or some type of way • • • to remove that tissue.
The granuloma.
Yes.
Right.
Okay. • • • • • • So I, um, talked to two different experts. • • • • One guy said, you just might have to live this way the rest of your life. And I talked to another guy like, you're too young to be living like • this. This is what we can do for you. And it • • • was considered a high risk procedure. But I'm like, I can't continue to live like • • • • this is like.
You can't pass a couch without taking a nap.
Right.
With talking about the lethargy and all • • • that.
It wasn't that, um, bad. • But for me not to be able to work • • • • • out, that was my • • • • release. I needed to be able to work out, • • • • and it • • just beat me to the point I couldn't do anything. Got it. So eventually actually did this • ablasian. And before you do the Ablasion, they stopped you on all cardiac meds because they want the SARC to be • • • active. So what does that mean? When the sarcas is active in the heart, that means you can go into V TAC. And • • so two • • days before the procedure, I'm off all cardiac meds. I'm sitting at my desk upstairs, my wife's downstairs, and my device • • • fires. And so I • scream and she comes running up and she finds me basically in a fetal • • • • • • • position, um, • • • because I wanted to be tack. And so the device did what it was supposed to do. They've called an insurance policy, and • • • it reset the heart. And • • • • • • so the guy doing the um, Ablaze like, yeah, we want your heart to be active so we can find it. And after he did the procedure, he came in and visited with me, and he • • • • • • said he was all amped up, all excited. He's like, we found five spots, and we got him. • • • • And he's like, no more um restrictions, no more cardiac men. You can start going back and doing your normal • • activities. • • And they were in there for five, 5 hours. And they said, we still see stuff on the external part of the heart. But you know what? We had you under for five, 5 hours, see what this • • • does. And here I am, a year later, I haven't had • • • • events, and I'm off cardiac meds, which is good. I'm working out again, but I always have to watch my heart rate because you don't want this little device to fire.
And so you still have • • • • • the um, pacemaker. Is that essentially what it is? Pacemaker and ICD ICD, which is basically shocks your • • • • heart. So if that thing fires, that means you're • • • • • • having laypersons from heart • • • attack.
Correct. And the technology in the ICD is nothing but amazing. They can set the levels as to when it goes into pacing • • • • • mode, when it, um, will fire a warning to your heart to say, Knock it off and then to the full • • • • • • • • • • • • • reset. It's just rather amazing. The other thing about the • Ablazion • is the device was pasted me, like, seventy, 70% of • • the. So instead of my heart working on its own device had to keep on helping it. And I'm like, that doesn't sound right to • • • me. And so after the um, Ablasian, I'm being paced less than one 1% of the which is just • • • • huge. My heart's • • • working by itself now, which is what I • wanted.
You're still taking a very small amount of prednisone, right?
Yeah. • • So when I did all this started, they had me at twenty, 20, and then they stepped it down. I'm at two, 2.5 • • now. • • • • • And • • the Maxwellsight, I'm on • • fifteen, 15 once a • • • • • • • • • • • • • • • week. I know that's • • • • low, • • • • but it's still a drug. Also, they throw in • • • the Alanronite and • • • • • the • • • um, looking for the other drug. I'm on folic acid. So the allndronate to try to help • • • alleviate bone loss. Um, I think the folic acid does something else to counter one of the side effects of the • • methotrexide. Okay. By Sark Dock, actually. Who's one of the docs has been on your • • podcast, Dr. • • • • • • Sparn. He's, uh, my Doc. • • • • • Wow. Listening to your podcast has started connecting a bunch of dots for • • me. I think one of the podcasts you talked about, what's the most important factor in dealing with Sarcodosis? I'm listening to this, and I'm trying to • guess, and I like health. And I was wrong. It was zip code. And I'm like, okay, I'm very fortunate to be where I • • am. One of the leading guys in Sark research is • • here. He's my Doc. So I got very lucky. • • • And my cardiologist, um, at Northwestern, have been nothing but outstanding. • • • • And the guy to do the Ablation, um, was out of the University of Chicago, who was considered a leading expert in doing Ablasians. • • • And I feel very fortunate. • • • • • • So I guess when I wrote you just like three years. • • • • • • Wow. I know a lot of this discussion on this is • • about the people that hits the most is the pulmonary people. • • • • • But there's a small population of cardiac people out here, too, • • that there's additional level of complexity that goes into it.
And even rarer is those of us who are neurosark people. • • • • • • • • So, • • • um, it is a lot. So, uh, let's back up a little bit. Thank you for sharing the story of your • • incident, but you mentioned your wife and your daughters, and you are my age, so I'm assuming that your daughters are grown or nearly grown. So tell us about your family • • • • life.
Yeah. So my wife and I, next year, will be married. Forty, 40. We were high school • • sweethearts. I was a football player. She was a • • cheerleader. Cute.
You got me by a couple of years on the marriage. I think we were on thirty 38th year, but, yeah, go ahead.
All right. • • • • • • • • And with, um, the Air Force Academy. So, uh, I was in the Air Force, and both daughters were born • • while we were in the Air Force. Uh, so the oldest, Christine, • is, • uh, thirty 35. The Madeline is thirty 31 • • • and is an occupational therapist. • • Uh, and she loves what she does. And she • • welcomed a son into the, uh, world a year ago. So it's our first grandchild. And my daughter Madeline is in marketing, um, living downtown Chicago, having a blast. • • • • • • • • • • So it's been a lot of fun with the girls raising them. They're, uh, both University of Iowa grads, and they had a lot of fun • there and learned a lot, and they made a lot of friends. In • • • fact, my wife's, um, husband is also she met him at the University of • • • • • • • • • • • • • • • • • Iowa. Again, both of, um, them are very close to us. • • So we're staying here for a while. Yeah.
Your daughter's husband, I • • • believe. Yeah. • • Right. Well, that's, um, • • • • • • • • • • • cool. So you've led an active life. You were a football • • • • • • • • • player. I've got to talk a little bit about the bicycling and so • • • • forth. So you, uh, were riding one 120 miles • • • a prior to this. And I consider myself pretty avid cyclists. But for me, one 100 miles a week is a week that I put a star next to in my logs. Like, this was a really good week. And you were doing that • • regularly. Yeah.
That was several years ago when I was really, just really into • • • • • it. And, • • • um, my baseline is jogging. So that's where I started. And I've • done four • • • • marathons, including the Boston Marathon, which was joy to Drew. Congrats. Thank you. • • • • • • And three of the four marathons, um, I did under four, 4 hours was my goal. And • • • • so I was training for this, um, one • marathon. And I usually never signed up in advance • • because if the weather was bad in Chicago, I didn't want to be running in nasty weather. And so I went to sign up the day before, and they were like, • • • no, it's, um, all full. I'm like, But I trained for a marathon. I'm ready to go. So someone then told me about triathlons. And I swam in high school, too. So I'm like, okay, I can do the swimming part. So I got on a bike and it was one of these old swim • bikes. And I realized, all right, I got to do something better than this. And so I started upgrading the • • bikes. • • And my very first Triathlon, um, I did was a half Iron Man because I trained • • • for a marathon. I'm like, uh, I can do this stuff. And I'm like, after I did it, I'm like, oh, I can do a full Iron Man. And my wife's • • like, not happening. • •
Uh, so a full Iron Man for people that don't know is you start out with • • • • a two, 2.4 miles, I • • • • • think. And then you ride your bike. One 112 miles, you run a marathon, correct. All back to back to back, correct?
Yeah. So I did a half version of. • • • • • • • • • •
That. So we • • • host an Ironman event here, uh, in Roanoke, Virginia, where I live, and it's a half. And I just did the bike part last • • • year. Not as part of the event, uh, but just to do it. And of course, here we live in the mountains, • • • • • so it's a very • • difficult. Fifty 50 it is. • • • Fifty, 56 miles. • • Uh, • • right. I can't imagine doing, um, all those other things on either side of it yet. Lots of. Lots of people do. Or to double it. That's. • • • • • • • • •
Crazy. But it's something I really enjoyed. I just enjoyed the feeling of being outside and in • • • • • shape again. That's part, uh, of the journey. I'm trying to what's my • • new exercise normal. So last • • • • • • • • summer I was only, um, able to get forty, 40 miles a on the • • • • • • • • • • • bike. I think I even wrote this to you. I'm pedaling, I'm pedaling. I'm like, I know I'm going fast. And I look down the speedometer and I'm like, no, you're • • • • • • • • • • • not. That's part of getting older, too. I understand that. • • • • But just the energy doesn't seem to be close to what I've expected on the trajectory of getting • • • • • older.
Now, the ablation that you had done, uh, when was that?
That was March of last year.
So you're still basically recovering from that, would you • • • • • • • • • • • • say? • • • • • •
Um, • • • • • again, I don't think so. • • • • • Because it's a year out and I had no cardiac events. So should I start having cardiac events • • • • again then? Maybe I need to go back and get another • • one. And I've heard there's been people that have to go back and get repeated ablations, but I think if I go back again, they're going to play with the external part of the heart because there's still the scarring there on • that. • • • • • • • But otherwise, I, um, feel pretty good.
So you're walking around feeling good, • • but your fitness level hasn't returned to the fitness level that you had pre ablaze and • precise.
No, not even close, right?
It might not. • •
Right. I will never run seven and a half miles every other day ever again. It just won't happen. Right. So I now do • • intervals. I was told that's mhm even better for me. So I get my heart rate to a certain, um, • • point, and then I walk until it gets to a certain point. And I keep on bouncing up, back and forth.
Right?
Because • • • • • • • • • again, I don't want this device to. • • • • • • • • • •
Fire. Um, it seems to me like you're living right on the edge. So you're doing intervals, which is where you run really hard and you watch your heart rate get jacked up. And then when it gets to a certain point, you walk until it comes back down. And then you do it • again. And, uh, then you walk until it comes back down. Then you do it again. And I've done this on the bike, and I've done it running as • • • • well. And the word, um, when you're running is, • • • • uh, Norwegian word • • • • • fartlek, which is not what it is. I think it's F-A-R-T-L-E-K. • Fartlek. It's named after the guy that developed. So, um, you're doing that. So you're really pushing the boundaries, right?
Yeah, I'm trying to get back to feeling fit. So I guess to answer your early • • • question, I'm better than where I was before the Ablaze, but I'm not preparedak event. Uh, so not even • • • close.
So how have you reimagined your life now since you've had to go through. • • • • • • • • • • • • • •
Sarcodosis? • • • • • • • Um, I think I take things more in stride now. • • • • • • Maybe it's just, um, everything I just look at, • • like, thankful for every moment I have now. Because, again, I thought this could have been it. I can't tell you how many times my wife and I have been told that if I had not been in • • • shape, no way. There's just no way I would have made it. So the fact • • • • • • • • • that I just, um, did a stress test, and the nurse looked at my record and she's like, I've never seen anyone be in V tag that long and come out of it. • Okay. • • • • • • So I feel very blessed. Um, so I try to look at that. I do a lot of volunteer • • • • work. I refocused my energies, um, and doing volunteer work again with the skill set I have, it's very specialized. • • • So I work with a group called Catch a Fire, which • • is basically a clearing house for, um, nonprofits to find volunteers. So over the last three years, I've done about over ninety 90 with • them, ranging • • • • • • • from, um, helping do Mission Vision value statements to Excel training, • • to doing data analysis to doing all these different • • things. And I've met all these different non profits across the United States. I've actually worked with some guy in Australia, worked with a couple of folks in • • • • • • Africa. It • • really seemed to be focusing more on • • that, hoping to get to retirement, um, at some point. Right. Because I think that • • • • will keep my mind • • active.
Right. And when you go outside and so you ride your bicycle • • • • • • now on the trails and paths, um, around Chicago, trying to stay off the road so you don't have to fight with the cars.
Right. So they converted old rail lines around here a long time ago. So there's a whole network. The one near me is called the Prairie Path. • And it's limestone paved • • • • • • and it's just a much safer • • ride. Back in my heyday, when I was really, um, going at it, I would ride on the streets, but I usually drive a half hour west of where I am to get more towards the countryside where there is less • • • • traffic. All it takes is one guy not paying attention • • and you're in a world of hurt.
Yeah, no, it's • • true. I'm riding more and more offroad myself, but I still do get out on the roads. We're very fortunate • • • that you can be rural very quickly when you're outside Roanoke, Virginia, as opposed to Chicago. • • • • Right. We're a small • • • • city. Virginia's Blue Ridge is how, um, we're now marketing this. • • • • • • • •
Region.
And you've got a grandchild. • • • • • • • • • • Um, four years ago I had none. Now I have six.
Holy cow.
So, grandchildren changed the way I, uh, look at • • • • life, that's for • • sure. And, um, I'm sure that that's the same for • • • you. • • • • •
Absolutely. He just turned one. And so, • • • • • • • • • • • • um, we've actually, uh, made going over the last three weekends. We're looking around, it's snowing outside. Let's see if our daughter wants to visit her. So we go over • • • • there, we eat lunch, and then we play for a couple hours until he's ready for a nap. So that's just really refocus what's going on. • • • • And he's at an age • • • where he's very active, like my oldest daughter was. And • • so it's like playing with my daughter again. He wants to fly around the room. And so it's just a lot of fun doing that. • • So it's the point. Now he recognizes me and as soon as he sees me again, he wants to start flying around the room. So it's a lot of fun. But I will tell you, making that little kid fly around the room, I'm gassed after it's over. Right. • • • So I think again, that's part • of dealing with how my body reacts to stuff. Now, before I could do anything, • • • • and I'd be • • • • • • fine. • • • • •
Yeah, it's frustrating. You, uh, can't do what you once did. So they call sarcaidosis the Snowflake disease because it impacts each of us • • • • differently. I've also run the Boston Marathon.
Um, Congratulations.
Thank • • • • you. I just always thought of myself as, uh, the guy that would always be fit and would always be healthier • • • • • than a certain large percentage of the people walking around beside me. • • • And I guess now I think I was arrogant to think that because sarcodosis just knocks you back a step. Two steps, three steps. • And it's hard to realize that • • • • • while playing with my grandchild tires me • • • • out.
Yeah, • • • • • • • • • • absolutely. Again, your form of, um, it is • • • much. I think each form is so unique, and I was so lucky to have my aspect of it addressed through the Ablasian. So it's sort of like. But every time I go out, I am looking at that watch going, Is my heart gonna play nice today or not? So it's always in the back of your mind, is what's going to • • • • • • • • • • • • • • • • • happen? To answer, I think, your earlier • • • • • question, it's always there in being thought of.
So your doctor, Dr. • • Spoon, said that your sarcoidosis is not active, but he described it as simmering. Can you tell us what that is? Because I hadn't heard that before, but I think there are times when that's been my • • case.
Right. So the last Pet scan I • • • • • • • had, he said, um, great • • • • • • news. There's no stark activity, uh, in the • • heart. There's no stark activity in the • • lungs. But as I look at your lymph nodes, they're • • glowing. And he said, it's not • • active. So let's just call simmering. It's • • there. • And let's not mess with your current medication • • regime, because ideally, they would love to taper you off. But I've had more than a few doctors tell me that if • • • you let the Sark flare again as you taper your meds, it comes back with a vengeance. And I really don't want vengeance, because vengeance, in my case, means I get more scarring on my • • heart. And then I got to rinse and repeat the medications, the ablaze again. So if I have to live with the • • medication regime I live on right • • now, so be it. And I think I've heard a couple of people on your • • • • podcast. I've just got to learn to live with what's being done. But in my choice with the cardiac Mans, I had another alternative, which was the ablasian. • Right.
But you don't want to have to do another ablaze, • • • • • because even if that works, your heart will never • • be what it once. • • • • • • • • •
Was.
Every time they do that, it hurts your heart a little bit more. Right. And every flare you get hurt your heart a little bit more • • • permanently. • •
And the phrase heart transplant has been used in front of me before, and that • • • • just scares me. • • • • • • • • • • • • • • • • • And again, I don't want to ever get there, • • • • but it's out • • • • • • • there so whenever they do an Echo cardiogram, they're looking to ejection fraction. And I'm like, • • • • • • borderline. Okay. And they're like, if it drops to a certain point, then, • • uh, the next consideration • • • • • is heart transplant. I'm like, let's not go there • • • • • • yet. Let's see what we can do without before we get there. • • •
Right. So you get up in the morning • • • • • • and do you work from • • • • home? What do you do? Do you go to work?
I'm in a hybrid schedule. So two days at home, three • • • • • • • • • days at work. • Um, and, • um, three days are downtown Chicago. Uh, so if you ever been to • • • • Chicago, the Blue Cross building is right across from Millennium Park. If you ever went and saw the • • bean. I can see that from my office. Wow. • • • • • • • • • • • And the Metro, which is the, um, commuter training. You take that in • • • • there. We actually have a bus that runs from this train station, um, to the building. But I walk. I walk every time. So it's about twenty, 25 minutes. And again, I like being • outside.
Yeah, I love the bean. The bean is so • • • • • • • cool. It's a sculpture that's shaped like a bean, and it's about the size of a small house. Is that fair?
Yeah, that's fair.
And it's just you see a mirror reflection no matter where you walk around it or under it or • • • • • • whatever. I love the bean. That's so cool. Um, and so you're, uh, walking twenty, • • • • • • 25, um, three days a week, and you're feeling fine, right?
Yeah, they're back. So I'm walking fifty, 50 • • • • • • minutes. It's feeling okay. • •
Um, • • • • • • • • • • • • • • awesome. You mentioned your relationship with God before we were talking, and other people have brought that up. Have you become more or less religious, or do you look at things in a more philosophical way? • • • • • • • •
Now I'm going to go • • • towards no. But I also will say I continued, I'm continuing my spiritual journey. I'm continuing to try to • • • • • • • • • • • understand my faith, • • • um, about that. So right now I'm reading something • • that's • • where there was a group • • • • • • • • of priests, um, that actually did a critical evaluation of, • um, the four Gospels, trying, uh, to say, is this something that Jesus really would have said? And it's • • • • • really in depth. So I keep on exploring things. They might not be popular topics to talk about, but I'm just trying to • • • explore my • • • • • • • • • • faith. If you think about the volunteer work, I • • • • • • do think Christianity, a lot of it is about giving • • • • • • • • • • back. So, yes, I've been doing more and more and more of • • • • • • that. • • • • • But, • • • um, it's something I continue to explore, and it's just to • • me, it's fascinating. I think the underlying • • message • • • of Jesus, • • • • again, • • • • uh, love your • • neighbors • • • • • and love God above all. I think that's a great message, and it's hard to practice it sometimes loving your neighbors, but it's great to aspire to that. • • • • So I'm really interested in understanding about • • • that.
Got you, Jack. Is there anything else you want to add at this. • • • • • • • • • • •
Point. • • So this is an um aside. • • • • • • • • So after I had this cardiac • • • • • • • • • event every year since, two, um, thousand and one, I've gone on a canoe • • • trip. I don't know if you heard of • • • • • • • • • • • • Quetico.
Yes, I've been there three times.
Okay. • So for the • • • • • listeners, if you've heard of Boundary Waters in • • Minnesota, it's a place where there's no motor boats. It's canoes only quadico is the Canadian version of that. It has bigger in • • size and it may allow fewer people • • in. So I've been doing quadico trips, eight day, seven night trips since two 2001. And when nine • • • 911, we were in the • • • • • • • field. Nine 911, I what happened • • • on • • Tuesday? And, • • uh, uh, we were in the field. We had no • • idea. And when we came out of the field, we were • • • • • • • • • • told they like playing jokes. And you come back like, there's something like the camp ran out of hot water and the guy that picks us up • • • • says they • • • bombed the towers in the Twin Cities. • • • Um, I'm like, who's going to bomb Minneapolis St. Paul, right? Yeah. And so we thought it was a joke. We didn't believe it. And it took a phone call • • • home and for my seven year old daughter at that time to say, yes, they bombed New York to make it • • • • • real. • • Anyway, I go up to quitaco every year. And after this cardiac event, I said, I'm going. And my wife is like, you're not. I'm going. • • • • • • • • • • • • • • And two months before a • • trip, I got a blood clot. So with • • • • • this device, the ICD pacemaker, um, they run wires, uh, through your veins, down to your • • • heart. And typically, if a blood clot shows, it shows up • • • early. But mine showed up late. So now I'm on blood • • thinners. And if you know about the credit • • • • • • • code, there is no seven 711, no emergency care. You're all by yourself.
There's no communication.
Correct. Unless you have a • • • cell phone, right? Yeah.
When we went, there were no cell phones, no walkie talkies, • • nothing.
And • • so I'm going. Even with this heart condition • • • • • • • • • • and my reaction to Amy odorone • • • • • and the blood thinners, I'm going, which • • is • • • fairly not smartly, dangerous. A month before I went, I'm owing the grass • • • • • and come in and take a shower. And I'm washing myself. I'm, um, like, what's • • • this? I had a • • • • • hernia. • • And so I'm like, come • • • • on. So I bought one of those • • • • girdles that pushed it in. So I, um, went to Quidico that year with. You • • did? Yes. With all that going on. And my wife was not pleased, but I'm like, I got to go. This is sort of, um, like my annual • • • release. So I thought you would appreciate that • • story. It goes back to what I need to, um, be. • • • • • • • • • • • • • • • • • •
Outside. One of my bucket list things is to get back • • • • • • there. It's been over twenty 20 since I went, but I went three years in a row with a local group of guys and the fishing is the best fishing I've ever had in my • • life. But it's rigorous because we would paddle, I think, about one 110 miles where they dropped us off. Then we would sort of paddle back to a pickup • • • point in the canoe. And then you Portage between the Lakes. So you're carrying your canoe, you're carrying your backpack, you're looking out for • • • • bears, and you just basically fished your way to the, um, next campsite. Is that how you guys did it?
Absolutely. • • And there's • • something people like. It's just canoeing. Well, the portagne is what kills people. So I brought a couple of newbies this year, • • • and the portages just kick their butt.
Yeah, well, they can be a mile • • • • long. Some of them are very short. You hop for there's four, 400 within the Quittico Wilderness.
Right.
And only, as I recall, only two, 200 of even have names, and the rest of them are just regarded as large puddles. They're not worthy. But you go • • • • from body of water to body of water to body of • • • • • • water, and you follow your map and, • • um, hope you don't get lost. I had some scary moments, but I can't believe you're able to do that with • • • Sarcardosis.
Yeah. So I'm still doing it • • • • • • • • • and made it through that trip. Uh, okay. But, • • um, that's what I want to • • • • • • do. And you've talked about it, I think, on your podcast several times • • about you got to get back • to what feels right. Your body might not be one 100% the way you want it, but you got to get back to what you want to • • do • is make the effort. So I just keep on making the • • • • • effort.
Do you carry the canoe yourself when it's your, um, turn on the. • • • • • • •
Portage? This year I did, yes. This year I, um, canoe because I had a solo canoe, and I did • • • a solo paddle because I was with two other guys, two new guys, and I couldn't find a four fourth.
I • • • • sold. Okay. Call me. What month do you go? • • •
Typically, I typically go after Labor Day just because the mosquitoes are down. Okay. And that's a good time to go. And again, if you're going back there at some point and you want a suggested • • • route, I've been through all the entry points in quadico, and I've hit most of the major paths, so I definitely have suggestions or, uh, tell you where it would be fun to go.
Okay. Yeah, we'll have to talk. We'll start boring people really fast if we get into a deep dive into this remote Canadian • • • • • wilderness. • • • • • But, yeah, I can't believe that I'm, um, talking to somebody else who's actually been there, because when I bring it up, • • everybody, they have no idea what I'm talking about. Sometimes boundary waters mean something to people. Right. But critico, you fly in on a float plane, they drop you, uh, off, and • • then it's fantastic. I love it. Well, Jack, thank you so much good luck at the critico this year. If you're planning, uh, to go in September again. • • Absolutely. Okay. All • right. And I wish you all the luck in the world with fighting sarcodosis. • • • And thanks, uh, for fighting the good • • fight.
Alright. Uh, thanks and I appreciate you let me tell my. • • • • • • • • • • • • • • •
Monday Apr 11, 2022
Monday Apr 11, 2022
Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.
Show Notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
email Angelica agauptman@gmail.com
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is a web generated transcript from my interview with Angelica Gauptman.I'm sorry for typos and misspellings.
Welcome back to the Sarc Fighter podcast. And joining me now is Angelica Galtman • • in California. Angelica, welcome. You're just across the bridge from San Francisco.
Yes. Thank you. I am. Yes.
All right. So that you are in Marin County, and you were just telling me that, it's often foggy in San Francisco, but it's always beautiful in Marin County.
Yes. As soon as you kind of cross the middle of the Golden Gate Bridge, it's like a wall. • • It's kind of like the Marinas, the heavens, and San Francisco the opposite. It's very funny. Always very funny to drive across the bridge.
Got it. Okay. Well, now, um, you are a high school student applying, to colleges. But we were just talking before we began recording. You are looking to go to some fairly impressive colleges. Where have you applied?
I've applied to a lot of the IVs, Stanford, Harvard, UPenn, Columbia, um, and a lot of the UCS. UCLA is definitely my top choice. So, yeah, I guess they are, um, • pretty hard to get into, but we'll see.
Yeah, well, those are high levels, but • • you obviously have the grades in the background and so forth to handle that sort of thing.
Possibly. I don't know what they're looking for, so I have no idea, but hopefully something will get me there.
Let's talk a little bit about your sarcoidosis story. And when I say yours, I mean your grandmother's. So your grandmother died from complications related to sarcoidosis. Is that the best way to put it?
Yes, I'd say so, yeah.
All right. And you are trying to figure out if there's a connection between prednisone and vitamin • • • D, • which, um, could be very controversial. There are so many places to start here, but let's just jump in with your grandmother's story. Um, when was she diagnosed with prednisone?
Um, two, 2007. She was diagnosed with pulmonary circuit two, 2007 and then pregnant on, I believe, in two 2009.
Okay. And she took prednisone for quite a long time.
Up until two 2017. Okay. Did she pass IN 2017?
20 17.
Took it all the way through?
Yeah, all the way through. Do you know what levels of, uh, doses she was • • • taking?
Do you know what I think it was? Two 200, but I will need to • • • • check.
Wow. Okay. That would be a lot. Yes.
She was on a lot of it.
A lot of PREDNISONE. All right, so she was also taking was she prescribed vitamin D or did she just take vitamin D?
Um, at the time, they were prescribing her vitamin D supplements. But now that I look into her case • • file, she, um, was over producing vitamin D naturally, as a lot of pulmonary circulations patients do. It just didn't come up on the scans because the vitamin D that she was producing was actually in an inactive • • state. So it didn't come up on the scans that they did. They had to do a scan for inactive vitamin D to find it, but they didn't do that. So they just prescribed her more vitamin D supplements instead of doing the second • • scan.
Got it. And what eventually led to her death, according to your hypothesis • • • then? • • • •
So, • • • • um, I think that the overabundance of vitamin D that was in her system, • • • um, um, with the over, like, immense amount of predisone that she was • • taking led to the hemorrhage that she had. So the hemorrhage was an, um, internal bleeding. It was a really big part of it. A, um, really big bruise on her abdomen. And she developed that about a week or • • • • so after, um, they up her credit zone a little • • bit because they had been taking it down slowly. But they upped it again. And once they upped it, she, um, kind of developed that bruise. And that's what we went to the hospital • • for. And, uh, that's what led to, um, her kidney failure and her untimely death. Um, so I believe that the prednisone and vitamin D are what caused the hemorrhage or the bruise. And that's what caused her to pass away.
Now you're taking a course where you look into correlations, causations, that sort of thing. What is it?
It's AP research.
And so you started looking at other patients to • • see if your grandmother was not the only one. Tell us why you thought that and what you found.
So, um, in the class, we are taught to, uh, create our own project. And it was supposed to be a gap in the knowledge that is there today. And so this, to me was a gap in the knowledge because nobody. I talked to researchers at Stanford, UCSF that had, um, been researching, especially pulmonary circuit oysters for years. And they had never come across or thought of anything like this. And there were no real scholarly articles out there about this or scholarly work. So this, um, was my gap. And in the class we're supposed to create our own methodology and collect our own data. So I thought that there was no better way since there was no data on this out there, there was no better way than to • • • interview other patients to see if • • • they had similar experiences with prednisone or vitamin D. And, um, so when I talked to quite, um, a few, they had told me that they never developed hemorrhage, uh, that large bruise on their abdomen. However, they told me that they also were over prescribed vitamin • • • D because again, the doctors and researchers didn't do that second scan for the inactive form of vitamin D. And they said that when they were taking vitamin D and prednisone, there were a lot of detrimental, • • • • um, effects on their bodies that they experienced. And one man actually told me that he did start to • • • • • ease very easily when they upped his Joseph prednisone while he was on vitamin • • • • D, which didn't happen when he was off of vitamin • • • D.
Interesting.
So he was continuing to take the • • pretinosome, which, most of us do. I think that's for ninety 90% of patients, that's the first line of defense is prednisone. So almost everybody listening to this, if they have had • sarcodosis, has, taken prednisone. But the vitamin, uh, D is the wildcard here. And so you found at least one other person. How many patients have you • • • • • interviewed?
So, um, through FSR, I interviewed • four. And, um, then outside of FSR, on my own findings, I interviewed about ten to fourteen.
Okay, all right, got it. And these patients were • • • all were they taking vitamin D because they were in the supermarket and they said, oh, I'm going to take vitamins. Vitamin D is good for you. Or were they prescribed vitamin • • D?
No. Every single one of them was prescribed a vitamin D supplements, except for the very few of them, • um, whose doctors actually thought to do the scan for inactive vitamin D and saw the circuit patients overproduce it naturally. So, aside from the two that were taken off the supplements because of that second scan, everybody was prescribed vitamin D • • supplements.
Got it. So are you still actively looking for people to • • interview?
I am, yes. So, • • um, while my project itself is due in the next month for the class, I will definitely be continuing to research myself. So, yeah, I'm definitely looking, um, for more interviewees.
Yeah. Okay. So what kind of person was your • • • • grandmother?
My grandmother was amazing. She was just the best person. She was my best friend, really, • truly. She, uh, was the one who kind of. My parents were both at, um, work • • very most of the day. So she was the one who I kind of spent most of my time with when I was, um, • • little. And, um, when I grew • • • • • • up, • • um, she was honestly an incredible woman. She taught me to Cook, she taught me manners. She taught me everything honestly. And, um, while the disease definitely slowed her down, she had oxygen tanks that she was trapped to and she couldn't really • • travel. Even though, um, she loved to travel, she, um, still somehow • • always helped me with whatever I needed. She always was there for me. Whenever I had an event at school, she would always help me with those. • • • • So she • • was so absolutely selfless. It was honestly inspiring to me.
That's an amazing story. And then, when did she first start noticing that there was something • • • • • • wrong?
When I was about • five. I, um, don't even remember what she noticed. If I'm being honest, I think I was too young to notice. And when she passed, I was only thirteen.
Well, um, it's been a long time, so I don't really know what caught how she noticed it, but I just • • remember, I, um, was sitting on the couch when I was five and there was a man that came with oxygen tanks into our house at about seven or eight. 08:00 p.m. It was late for me back • • then, and, um, he strapped her to the oxygen tanks or strapped them onto her, I guess so. That's just what I • • • remember. I remember she had a lot of trouble breathing.
That's what I remember it to • • • • • be, ultimately, because it's very hard in many, um, cases for doctors to even diagnose • • sarcoidosis. So I was just wondering if you, um, knew anything about • • how that all came.
So, um, they didn't really know what it was back then as well, as much. It was even less research than it is now. And at that time, she was in her late fifty 50s and told her that she was one of the really rare people and that, um, this illness only traveled • • within very young women, which now we see is not true at all. But so, um, yeah, at the • • time, they didn't expect • • it. They, um, thought it was actually literally anything • • • else, but, um. Yeah, so that's what they kind of told her. They said that you're one of the rare women that isn't in her twenty 20s or 30s that got • • • • this interesting.
Wow. So she lived with you're, spending most of your time with her, your parents are at work and she's got these oxygen tanks. What was her daily life.
Like?
It was very selfless. Again, I don't know how to describe • • • it. She was on bedrest, sadly, for most of the last few • • • years. • • Um, it was very hard for her. The oxygen tanks and the absolute lack of energy that she had and the lack of mobility that she • • had. So, um, her life was mostly just taking care of me and my little cousins. I have three little cousins who are all boys, who at the time lived with her as • • well. And, um, so she would take care of us all the time. She would Cook for the whole • family. So her daily life was just taking care of others. Always. It was always helping my little cousins with their homework, helping me with my homework, cooking for us, cleaning the • • house. So, um, it was selfless, very selfless.
But she was able to do that even with the sarcoidosis. Uh, did she have the oxygen tanks that you pulled on a little cart or how did she get Around?
Um, well, the oxygen tanks were on wheels, so she could walk and kind of stroll them. But cooking wise, uh, she kind of just stood and seared it on the pan and put it in the oven. And then for all of our homework, we would be usually sitting for that and then cleaning wise. I mean, she didn't mop the floors or anything like that, but she'd, like, clean up the dishes or something that required standing and moving her arms instead of running around the house.
And she just continued to do that right on through Sarcaidosis.
Oh, • • • • yes.
Wow. What was your grandmother's name?
Lydia Glaser.
It must have been very sad for you and your family when you took her to the hospital because of what looked like a bruise. And then she didn't come home.
Yeah, it was shocking. And, um, there were definitely aspects of, • • um. Um, I guess layers of shock that came in as well, because it was really interesting. She had • • actually been doing, um, a lot better on the last two days before her passing, then her entire week • that she spent there, and they had actually signed her out of the ICU and put • • • her into, um, normal hospital room. And she would be fine to go over the night. So, um, in the morning, they said that she would be free to go. And then that morning, her kidneys started shutting down. And so, • • • um, that was the shocking, um, part, I think it was. Two days later, she passed away. Um, and again, the kidneys were also another kind of thing in my research that I looked at as well, because, um, of kind of the connection of vitamin D and prednisone and all that. So all of it, her whole case, honestly, is just such a • mystery. And I'm trying, um, so hard to kind of connect the dots, but it's very hard, as you can • • • imagine. • • •
Wow. So you reached out to the foundation for sarcoidosis research. Did you just find them with a Google search or how did that come to be?
Yes. So I believe, um, it was my sophomore year of high school. I'm a senior now, so two years • • • ago, • •um, I don't know. I felt like I was old enough to kind of • • • start researching and looking into her case file and all that • • stuff. But, • • • um, before I even began or thought of my • research, I just wanted, um, to do something that would contribute to the community that my grandmother was in, and that would kind of, I don't know, not honor her, • • but, yeah, I guess it is honor her in a way, because I just saw how she was such an active person. She loved to travel before Circuit Oasis, and now she couldn't. And I couldn't imagine a whole community, um, of people going through that. • So not only in, um, her name, but also for the community. I just kind • • of reached, um, out. I asked for an internship, but I was sixteen 16 and would, uh, only give out internships to eighteen 18 • • or. And so they, um, actually had to redo. I feel terrible for Mindy. They had to redo their entire paperwork to allow me to intern and volunteer at the age of • • • sixteen 16. And I got put with Jim and his peer mentor team • • and. Yeah, it just kind of took off from • • there.
Wow. How old are you now? Are you eighteen?
I'm eighteen 18.
Yeah. Eighteen 18 now. Okay, so you've been doing this for two years? Yes. And will you continue, uh, to work with FSR?
Definitely. I'm trying to start a youth advocacy program at my high school where I've been trying, um. It's getting very close. • • • • Um, I have a lot of ideas for FSR, and, uh, I also just love working with everybody in the gym. It's a great community that I love being a part • • • • of. • • • • •
Wow. • Um, and so when will you feel like you have a sample size • • • or enough, uh, data to move, uh, • • forward with • • your project or feel like it's Done?
I don't think I'll ever feel like it's done if I'm being honest. I think I want to keep pursuing this until I get a solid answer or until I start testing it in the lab or something like that. So I don't think my hypothesis is enough for me. And I don't think gathering enough evidence to support it is enough for me. I think I want to actually see the evidence to have, um, it kind of be enough and then see how we can. I mean, if it's true and if it's plausible to • • see how I can keep, um, helping and seeing if maybe people should start testing for this inactive form of vitamin D and seeing how I can kind of make that happen. So I don't think that it's honestly ever going to be done for me. This project. Um, even with hypothesis, that's definitely not what I'm ending with now.
You will know soon if you've been accepted to Harvard or one of these other places. Are you going to be a medical student? Because you told me that you also might look at being a lawyer. I can't imagine you having the time to study for the bar exam and doing this.
Yeah. So it really depends. I'm just so unsure of my major right now. I have two very different kind of spheres and majors that I could go into right now. I've been working at a law firm for the past couple of years. I really like that sphere, um, of work as well. But even if I were to go into law, I think that I would still continue this with what time I had and maybe pass it on to somebody else and just kind of help out as much as I could. But I definitely don't want this project and this hypothesis to kind of • • • end because I think it is, um, so important. So if I do study, end up researching medicine in College, um, and have that be my major truth, this is definitely going to be my preferred project. But if it's lost, then either I'll pass it onto someone or just continue it on my downtime.
Yeah. So have you gotten any sort of interest, uh, from researchers that are already out there in the field, that have been through all of this and are looking for • • something to dive more deeply • • • into?
So I've run this by, um, the two researchers that I think would be most interested in right now or have given me the most interest. • • Um, one young man, uh, at Stanford, Dr. Matthew Baker, he showed a lot of interest in this. He's helped me with, the abstract of my paper and my hypothesis. And then Dr. Laura Copp at UCSF, uh, has also kind of responded and given me • • some feedback. So, I think it's kind of • • also, I can't imagine being a researcher and • • having all of these medical students with me and then • • having a high school student trying to call me and say, • • hey, here's what I've been • • • doing. Why don't you take me • • on? So I, um, don't know. I can't imagine really that happening for me now, but it's shocking that I've gotten so much feedback from all these researchers. And although these responses from them so far, those two have been the most promising. But I definitely want to start trying to get into labs and things like that, which maybe would be possible with Stanford, um, sooner or later.
So you do realize how otherworldly this sounds - high school student calls and says, I need you to look into this. And here's what I think. And I've already interviewed people, and that just doesn't happen every day.
Yeah, I know. It's silly. I feel silly talking about it if I'm being honest, because I don't know, I can't really take myself seriously. So I can't imagine all of these people with MDS and PhDs and who've been working and researching for so long looked like taking me seriously, which is completely fair. But somehow I've been getting all these responses. So I guess something must be working or they just find me to be funny.
I don't know. But you have a real story with your grandmother, and you obviously have, uh, a drive and a passion, and you've gone about it the right way by going through the foundation, for sure. And if you've got Mindy and Jim Kuhn on your side, um, those people, uh, when they speak, people listen.
You're doing it the right • • way.
Hopefully. Yeah, hopefully. We'll see. Hopefully this takes off somehow.
All right, so you and I are speaking right now. On the ten 10 March in 2022 and very comfortably, um, ten, 1030 in the, uh, my time. And you are up at what, seven, 730? Yes, 730. And about to go to • • • school?
Sadly, • • yes.
So where do you go to school?
Redwood High School in Larksburg, California.
Um, Redwood high School. And you're taking AP • • • • classes?
Well, not a lot. Three.
So when you get to College, how many College credits will you already • • have?
More than I need. So I think I would have a semester, uh, done already.
It depends how many classes I take there.
Right. And if you get into, say, Harvard, they'll accept all of your AP credits. You • hope.
I hope my AP exams should allow for • • • • • that, um, to be a realistic thing, but I'm not sure because some of the classes AP research. I don't think there is a College credit for • • it. But we'll see. I don't know. It depends on every school takes different credits, but hopefully they'll take all of my credits.
Yeah, • • well, and are you taking a lot of chemistry? Uh, and so forth and so • on?
Biology. I love biology. Biology. Physiology. Tech. Chemistry. I took last year. It's very interesting, but for some reason, physiology and biology is really my thing. I really love that.
Okay. But you said, sadly, you're going to school today or are you just over it?
Yes. Senioritis is kicking in. I'm not sure if you're familiar with the term, but it's really big over here. I'm, um, done. I'm ready. I'm ready for the • summer.
Yeah, we had that term even back when I was in high school. In the dark ages.
Yeah.
All right. So if somebody wants to reach out to you, if they listen to this and they want to be interviewed or they want to share a story.
How do they do • • • • it? Well, they can email, um, me or they can. I mean, I have social media. Um, that's also a thing, but, um, they could also reach me through Mindy or, uh, Jim as well. They all have my, um, contact information. But John, I can leave, um, my email with you as well.
Okay, let's do that. And I'll just put it in the show notes and then people can just click on that and send you an email. And I don't think you'll, um, be covered up with people, but hopefully somebody listening to this will say, wow, this young lady is on to something. And let's give her the opportunity, uh, to succeed.
Hopefully. Okay. Angelica, thank you so much for your time this morning.
Monday Mar 28, 2022
Monday Mar 28, 2022
April is Sarcoidosis Awareness Month! In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate! Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc!
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Mar 14, 2022
Monday Mar 14, 2022
Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons. Then sarcoidosis showed up in her life. Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems.
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Shakshuka
Serves 4
Ingredients and Prep
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· 3 Tablespoons Extra Virgin Olive Oil
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· 1 - 4 oz can green chilies |
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· 2 onions chopped
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· 1 – 14.5 oz can diced tomatoes
|
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· 2 yellow/red bell peppers
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· ¼ cup water or vegetable broth |
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· 4 cloves of garlic
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· 2 bay leaves |
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· 2 teaspoons tomato paste
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· 4 eggs (or 1 can Chickpeas drained) |
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· 1 teaspoon ground turmeric
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· 2 oz feta cheese (or vegan tofu feta)
|
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· 1/8 teaspoon cayenne pepper
· ¼ teaspoon black pepper |
· 1 – 2 cups of fresh spinach, washed and torn
· 1 Tablespoon Za’atar (optional)
· Cooked cous cous or rice for serving
|
- Heat oil in skillet. 12 inch is best. Set heat to medium/high. Add onions and peppers – sauté until soft. Add garlic, tomato paste, cumin, turmeric, black pepper and cayenne. Cook for about three minutes.
- Add in chiles, tomatoes, water, spinach and bay leaves. Bring to a simmer and cook 10 minutes.
- Remove bay leaves and transfer 1 -2 cups to a blender (or use an immersion blender) until smooth and return to skillet.
- Make 4 indentations with a spoon with the sauce and crack an egg in each well. (For vegetarian version add chickpeas in place of eggs) Cover and cook 6-10 minutes. Add feta and sprinkle with Zaatar.
Serve over Cous Cous (we like Israeli) or rice.
(I adapted this recipe from The Complete Mediterranean Cookbook: 500 Vibrant, Kitchen-Tested Recipes for Living and Eating Well Every Day (The Complete ATK Cookbook Series) Paperback – December 27, 2016) My family loves all the recipes we have tried.
https://www.amazon.com/Complete-Mediterranean-Cookbook-Vibrant-Kitchen-Tested/dp/1940352649
Monday Feb 28, 2022
Monday Feb 28, 2022
Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not? Beyond that, what can be done to stop or prevent the disease?
Show Notes
More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Feb 14, 2022
Monday Feb 14, 2022
Erica Courtenay-Mann was feeling tired all the time. Beyond tired. Fatigued and unmotivated, but nobody understood. It was the onset of sarcoidosis. After several attempts for treatment -- her doctor noticed her neck didn't look right. This is her story.
Show Notes
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Feb 07, 2022
Monday Feb 07, 2022
In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own. The discussion is led by Sarc Fighter host John Carlin.
Show Notes
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com