Other Peoples Medical Stories

Tyler Parker

 

This is what Tyler was born with : 

What causes Alagille Syndrome

Alagille syndrome is a genetic syndrome that can affect the liver and other parts of the body. The liver problems result from having fewer small bile ducts than normal in the liver. This leads to bile building-up inside the liver, which in turn causes liver scarring and damage Signs and symptoms of Alagille syndrome are generally noticed in infancy or early childhood. Type of symptoms and severity varies greatly, even among people in the same family, so that in some cases the symptoms are severe, and in others, very mild. The liver problems may be the first symptoms of the syndrome, and may include yellow color of the skin and whites of the eyes (jaundice); itchy skin; bumps on the skin caused by deposits of cholesterol and fats (xanthomas); pale, loose bowel movements; and poor growth. Alagille syndrome can also affect other parts of the body including the heart, brain, kidneys, blood vessels, eyes, face, and skeleton. People with Alagille syndrome may have distinctive facial features too, including a broad, prominent forehead, deep-set eyes, and a small, pointed chin.


Alagille syndrome is caused by changes or mutations in the JAG1 and NOTCH2 genes.  Inheritance is autosomal dominant. However, in about half of cases the mutation occurs as a new change (“de novo“) without being inherited from either parents. While there is no known cure for Alagille syndrome, there are treatments that can help control symptoms. Possible treatments may include medication that increases the flow of bile and careful management of diet to minimize nutrition and vitamin related problems. In severe cases, a liver transplant may be necessary. And this is where Tylers Transplant story began on the March 12th 2020.

He is doing so well and quite the inspiration. #tylerstrong

 

 

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roger connor1

Roger Connors Blog.

 

It was December 26th 2011. I had just gotten done watching my North Carolina Tar Heels lose their bowl game against Missouri. I began having some difficulty with pain and called a co-worker to take me to the ER. I had just experienced the “widow maker”. My first heart attack. I say first because over the next 8 years, I would experience a total of 15 heart attacks.
In 2016 it was recommended that I be implanted with an LVAD. I had gotten so good at heart attacks that when I went in for my consultation with the surgeon, I had a heart attack right there in his office, got admitted and implanted 8 days later. Although it had its inconveniences, I actually did really well with my LVAD.
My team laid out a game plan of goals to reach before I could be recommended for transplant.
I had to get my BMI and my A1C to an acceptable range. I spent the next two years busting my ass to teach these goals. In that time, I lost 110lbs and took! A1C from 12.2 to 4.7
In March of 2018 I finally go to go thru transplant protocol and was approved to get listed. In April 2019 my team approached me about being willing to take a Hep C heart. Since Hep C is curable now, I agreed. A week later, they approached me about joining the trial for the “heart in a box”. Never heard of it? Google it. Explaining that will take me a while other direction.
So anyway, I signed up for “heart in a box”. The next week they activated my 30 day bump. About 2-3 weeks later, I got that call. My team was hopping on a jet and going to get my “heart in a box”.
I was in there 21 days. Mostly due to my kidnies and high potassium. It was tough. Not as tough as it would get though. My support system pretty much disappeared when I got discharged. I won’t lie to you, that is when the hardest part of my journey would begin. The effects of transplant meds is the real deal. Remember that great weight loss and drop in A1C? Yeah. Meds erased both of those real quick.
Ironically, once again on December 26th, I was headed for an extended stay with the fine folks at Duke. I had pneumonia in my left lung and I was in full blown rejection. It’s a whack in the back when you go from a few touches of rejection that were pretty insignificant to full blown rejection. Those meds that alter you so much get jacked up and pushed hard..
I’m home now, and I’m pretty tired. I have to rebuild strength and balance and stamina all over again.
I work with adults with autism in independent living and am a basketball coach for 2 special Olympics teams. Luckily, my job isn’t physically taxing at all.

So, as you read this, I’m sure you’re thinking I seem so negative about my journey.
Not at all, not at all. I just want to be upfront with you and honest. A lot of people mistakenly think of a heart transplant as the magic fix all. That’s a dangerous was to think because it couldn’t be further from the truth. It’s trading one issue for a much more complex one. Transplant is what I wanted and transplant was what I needed. It’s been extremely difficult but I get up everyday and fight again. There are things in life that I want to achieve or experience. Being with my friends means so much more to me now.
Embrace your journey, but never underestimate it. Live life, be disciplined. Educate yourself and educate others. You didn’t get this far by being soft. You’re a Warrior and your strength can be unimaginable.

Best of luck in your fight.

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