My Experience With an Alpha-1 Liver Study
Last updated: November 2022
Most of you have heard of Alpha-1 Antitrypsin Deficiency (Alpha-1).
November is Alpha-1 Awareness Month. Alpha-1 is a rare genetic liver disease that may cause lung and/or liver problems.
Learning that Alpha-1 is liver disease and wanting to know more about it, I enrolled in a five-year liver study offered by The Alpha-1 Foundation. I was also curious if I had any liver damage. Dr. Jeffrey Teckman at St. Louis University was at the closest study site to me.
Participating in an Alpha-1 liver study
Alpha 1 causes your liver to produce less Alpha-1 protein, and the protein produced is atypical (misfolded) protein. These proteins become trapped and accumulate, leading to liver damage.1
I had met Dr. Tekman several times over the years and have even had him speak at our local support group meeting and felt that his study would help not only them but also benefit me. This would mean five years of free medical care from one of the top Alpha-1 doctors for my liver.
It is recommended that an Alpha-1 patient's liver should be monitored yearly.
Every year I got to bring a caregiver with me. For the first three years, I brought my friend and co-leader of our Alpha-1 support group, Deb.
We would make my appointment a short little getaway. St. Louis is about over three hours away, so we would finish all the testing and enjoy the rest of our time. We always made great fun of it, escaping our hectic lives for a few days.
I’m so thankful for our friendship and everything she did for me, which I would have never had without our Alpha-1 diagnosis. I have made a friend and sister for life.
For the remaining two years, my husband got to go with me. I was happy to have him by my side, and I don’t know what I would do without his love and support.
I started year one in November 2014. It started with a questionnaire full of many questions to help see if anything was linked to having Alpha-1.
The testing I underwent for the study
The liver biopsy was less invasive and not as painful as I heard it used to be. A FibroScan is a specialized abdominal ultrasound of your liver. It measures fibrosis (scarring) and steatosis (fatty change) in your liver.
Fatty change is when fat builds up in your liver cells. FibroScan will help your healthcare provider learn more about your liver disease. A liver ultrasound is an essential tool that helps doctors see your liver and its blood vessels in real-time.
For blood draws, they usually check your liver levels. I found out, though, that you can have liver disease and have nothing that shows up in the blood work, which was in my case and many others I have talked to.
I learned at that visit that I had mild liver disease. I have stage 1 fibrosis and fatty liver.
When it gets to stage 4, they consider it stage 1 cirrhosis. I also learned that with emphysema in my lungs, my lungs have elongated and pushed my diaphragm, liver, etc., down further than it is typically.
Because of this, they had to be careful with the liver biopsy and be sure to be in the correct spot. I only had to repeat the PFT, blood work, and ultrasound for years two through four. I continued stable through those years.
Maintence after the study was complete
I completed my fifth year of the study in November 2018. I had to repeat all the first-year testing. Everything remained stable, and I even had great news.
My fatty liver was gone now, and I tribute that to eating a good diet and exercising. I wish I had started doing those much sooner.
This study continues for others, and I can't wait to hear the results. This will give us an idea of how fast the liver may decline through the years. It is recommended that an Alpha-1 patient's liver should be monitored yearly.
Have you been in any studies? I’d love to hear about them in the comments below.
Do you think you could have Alpha-1 and would like to learn more? Message me or comment below. I would love to help point you in the right direction.
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