Wednesday, November 14, 2007

To All My Friends

Hey everyone,

Thank you in advance for reading this blog. This is particularly important because it's one of the more serious entries I've ever written. I've talked to some of you on the phone so this may not be a surprise to everyone, but for those of you whom I have not been in contact with in the past month or so, this is the best way for me to keep in touch at the moment.

Those of you who know me, or have kept up with my blogs, remember the situation this past summer where I wound up in the hospital with severe jaundice (yellowing of the skin and eyes due to bile in the bloodstream a.k.a bilirubin level), elevated liver enzymes and an intense headache. Most of you also know that I have had Biliary Atresia, a rare liver disorder, since birth. I've gotten 27 years out of a damaged liver and am grateful for every moment.

Up until July, I had been the picture of good health. I watched my diet and worked out 4-6 days/week. In July, I spent eight days in the hospital. The doctors ran all sorts of tests (spinal tap, liver biopsy, CT scan, X-rays) but all they did was rule out diagnoses. I was released with a "wait and see" discharge plan. The doctors had attributed my illness to an acute toxic injury, possibly due to a weight lifting supplement I had been using, and were confident that with time, and a low fat, high protein diet, all would be well. They were wrong.

Since my hospitalization, I've continued to battle elevated liver ezymes and decreased liver function, resulting in jaundice (bilirubin 10 times my normal range), itching and general discomfort. For example, most people have a bilirubin of less than 1. I've always been between 2 and 3 because of my Biliary Atresia. As of my labs last week, my bilirubin was at 28. Sometimes my episodes would coincide with me eating a meal high in fat or protein, most notably pizza. Things would level off, then spike again. I spent weeks trying to figure out what in my diet/environment could be causing me to get sick. Dairy? Fat? I was not getting the answers I needed. The 'wait and see' mentality was getting me nowhere. I was aggravated because I'd never dealt with this before. I'd been so healthy that I was quick to take my docs word and didn't always know what questions to ask, or think that I should doubt the diagnosis. I could not deny, however, that my liver was still acting up.

In the midst of all of this, I made the decision to quit my job and move to Miami, Florida to be with my girlfriend, Trine, and our puppy, Niles. Trine assured me that the doctors in Miami were amazing and would get to the bottom of what was making me ill. Just before I left, I had another episode of jaundice. I had labs done, my bili was very high and the doctors wanted to bring me in for tests to determine if there was a blockage in the bile flow. I was supposed to leave on September 24 and they wanted me to come on in on September 27. Against doctor's advice, I opted to leave for Miami anyway. Despite the labs, I was feeling good. I got one last set of labs and left the morning on September 24 as scheduled. Later that day, I found out my labs indeed looked a lot better than the previous week. Another piece of good news came the following day as I was traveling through North Carolina; I got the job offer that I had been waiting for, complete with benefits (medical insurance!) starting immediately and a base salary beyond what I was expecting. Life was good.

I got through about a week of life in Miami before I got sick again. My skin became jaundiced and itchy again and I was throwing up every so often. While I knew I needed to see a specialist, in the meantime I made an appointment with a general practitioner in order to get labs done and found that my liver functions were once again elevated. After keeping a food log, together (though mostly Trine's idea) we concluded that my liver could no longer handle large amounts of protein. As someone who has always enjoyed a high protein diet, this was a hard realization. I'd only worked out a handful of times since July, lost a lot of weight and, while I still had some muscle tone, my muscle mass was reduced. This was hard enough, but cutting out protein, the building blocks of muscle, was tougher still. I started a very low protein diet (vegetarian, for the most part) and I did see improvement in both appearance and the way I felt overall. I realized that this was only a band-aid solution. My general practitioner would be good for getting labs and a check-up, but I needed to see a real liver specialist. Trine, whose love and support (and connections at the hospital) have been invaluable to me during this time, was able to get me an appointment with one of the best hepatologists in the country, Dr. Eugene Schiff. We faxed him my medical records and, before I even saw Schiff on October 23, he had made up his mind: I would need a liver transplant.

While I wasn't expecting to need a transplant, I was grateful for answers. The doctors up north had provided none. To my relief, my health issues weren't due to anything I was doing; not the creatine supplement, not the fat, not the protein. I was finally becoming symptomatic of the secondary biliary cirrhosis caused by my liver disorder. My family did not seem surprised by this and always knew that transplantation was a possibility.

Overall, there's a feeling of optimism between myself, my family, Trine and the doctors. I'm young, relatively healthy and will get through the transplant, and subsequent recovery. I will feel better than ever; better than I did on my healthiest day pre-transplant. The liver is the body's engine. When it's on the fritz, everything suffers. I'm finding that out firsthand. But I'm getting a new engine and my body is going to feel unlike it ever has before.

While I'm 110% optimistic about the transplant and recovery, it's the waiting that's got me feeling anxious. I'm in the process of getting various tests and procedures done so they can place me on the list for transplant. If all goes well, I will be on that list by early December. Then I wait. Trine's mother said she would be surprised if I was waiting for more than a few months, but I must try to prepare myself to wait as long as necessary and hope that I can maintain a good level of health until then.

In the interim, I'm doing my best to just live my life. My new job is going alright. Sometimes it's hard to concentrate and stay focused when I'm feeling uncomfortable. I'm still training and getting acclimated, but it's pretty much the same job that I had up in Hartford so I know what to expect and have the experience to do the job. One thing I did not expect, however, is the guy who masturbates in the men's room during his lunch hour. I kid you not. It's easily one of the most disturbing things I've had the unfortunate experience of hearing (on two separate occasions). Yes, there's a stall door separating him from other bathroom patrons, but it's pretty easy figure out what's going on. Gross. Should I contact someone? What do you do in this situation?

Moving on...

To my delight, the Boston Red Sox won the World Series and the New England Patriots are demolishing every team in their path. I spend a lot of time walking the puppy, taking him to the dog park, watching TV/movies with Trine, and reading. Trine got me the Nintendo Wii as an early birthday gift so that's been a lot of fun as well. I haven't been playing nearly enough guitar lately, but I aim to start writing music again soon. I bought a new toy for recording over the computer so hopefully I'll have some new music in the near future. A couple weeks back, I met up with some high school friends in Atlanta for our annual football excursion. Despite me not feeling 100%, it was still a lot of fun. I'm looking forward to the holidays and experiencing my first Christmas season in the south.

The hardest part has been dealing with my current symptoms: jaundice, severe itching at times, low energy and a general 'blah' feeling. I have a new job, new living situation, new responsibilities, not the least of which is an extremely high energy puppy, and it's really tough coming home from work feeling like I just want to sleep.

Sadly, I've had to sacrifice some plans that I was really looking forward to. Trine and I had a trip to Maine planned for Thanksgiving. I have been advised that it would be a bad idea to be so far away from the transplant center in Miami. I was really looking forward to seeing family up there, but I realize that my health is 1 right now and I don't want to be in Maine and have something go wrong. Thankfully, my mother, her boyfriend and my brother also live in south Florida now so they will join us for the holiday. It will be a while before I am able to travel again.

This is very hard for me. So much has changed in so little time. I haven't had a lot of energy lately. I don't exercise regularly right now and miss it. There is a gym in our building and if I feel up to it, I might try and do light workouts in the coming weeks, but I will be not working to build muscle for quite some time. I enjoy being down here, but miss my friends and family back home. I am saddened that visiting with them is no longer as simple as booking a flight and spending a weekend in Connecticut.

Visitors are always welcome and the support of Trine, my friends and my family is going to be especially important in the coming months.

If you've read this to the end, thank you.

Sincerely, Ryan