Well here it is. My blog - Welcome and bear with me as I get better at this. Hopefully it will turn into something worth reading sooner than later.
As many of you already know, I'm currently in the process of being evaluated for a double-lung transplant and possible liver transplant. I'm being evaluated at the Mayo Clinic in Jacksonville, FL and so far I'm glad with my choice. The staff at Mayo have been excellent so far. They have put me through the ringer test wise, but they honestly have some of the most capable, and genuinely helpful people on staff I have ever met. Being able to finally leave a hospital after two weeks of tests and procedures withOUT looking like a junkie with track marks after all the need sticks and subsequent blown veins has been a nice change of pace. Don't get me wrong, I love most of my staffers over at Winter Park Memorial Hospital where I am normally admitted, but they can't hold a flame to Mayo. Sorry, but its true.
My CF specialist Dr. Daniel Layish here in Orlando was the one who recommended me to Mayo. I can't thank him enough for that. I haven't even finished the complete eval yet, but I am confident with where I am. Dr. Layish has been one of the best doctors I have ever had. He's kept me goin the last four years and I trust him completely. If he had told me to go to the backwoods of Tennessee and have a transplant done by an old hillbilly with a rusty knife and a bottle of moonshine, I'd have been on the first plane outta here. Well...maybe not. But seriously, his opinion means the world to me and I am so thankful he's been my doctor since I moved to Florida.
The initial evaluation process was two weeks long. Most of you followed me and my mother via Facebook during that time so you have a pretty good idea of what went on. Lots of tests, CTs, MRIs, ultrasounds, biopsies, blood work and procedures. NOT my idea of a good time, but necessary for the lung transplant team to, in their words, "find out everything that's wrong" with me. When I was first told that, I - ever the one to make inappropriate or off the wall comments no matter the occasion - asked the doctor if he was sure he wanted to do that. That he could be opening a Pandora's box of complete madness. What was his response? Nothing. Absolutely nothing but a look that said he wasn't sure if I was stupid or crazy and that maybe the psych eval should be the first thing on the list of procedures to complete. Regardless of what he was thinking, I passed the psych eval. How? I'm still asking myself that.
I've had to return twice since that two week stint, and still have (hopefully) just one more visit to do one final test. This process has drug on longer than I had originally hoped when I opted to come in and get all my tests done at once rather than space them out over weeks and months, doing one or two at a time. My thoughts were I'd come in, do my tests and by the next week I'd know one way or the other if I was ready to be listed for lungs or not. I've never misjudged something so bad in my life. I was hit with multiple setbacks almost immediately. Gallstones, calicifications in my right breast which would need to be biopsied to check for cancer, diagnosed with polycystic ovary syndrome and the biggest setback - a possible need for a liver transplant as well. The gallstones are currently being managed by prescription pain medication because they don't want to risk any more possible damage to my lungs by putting me under the type of sedation required to remove the gallbladder. We did the biopsy while I was there those initial two weeks and the results (thankfully) came back benign. The polycystic ovary syndrome isn't really something that would affect me transplant wise, but since the normal treatment for it is oral birth control, and oral bc can cause blood clots in the lungs (def something I DON'T want) I am being referred to an endocrinologist to determine the best course of treatment. The only real hold up now is this liver business.
As it stands right now, I have officially been accepted as a potential lung transplant reciepient. Got my official letter from Mayo a few days ago. However, my being listed for lungs is being held off until we complete liver testing to determine if I would need a liver as well. Monday is a majorly unpleasant procedure day to determine the blood pressure across the liver. Once that is done, they will be making a decision about how I am to be listed.
There are benefits and drawbacks to being listed as a double lung + liver transplant recipient. One of the positives is there are generally few people on that list, so the wait time can potentially be shorter. As in Mayo's case, I would be the only person on the list so I would be number one. Which means if that happens my call for transplant could be very soon. Also, a liver is commonly referred to as "a poor man's bone marrow" and contains many of the antibodies and lots of other stuff from the donor which would help jump start my immune system and help fight off rejection. Many who recieve both have less instance of organ rejection and that's the most important thing after transplant - rejection and infection. Either can be easily, and quickly, deadly.
But remember what I said - drawbacks. Always drawbacks. While it could be a case of getting the transplant sooner, it could just as easily be the other way around. Once your listed that way, you have to get both organs, which means they both must be viable. If one or the other isnt viable, you're skipped over. Which means I might miss my chance at life-saving lungs because someone just couldn't put down the booze (or various other reasons). Also, the surgery itself is much more complicated and invasive. But I'll get more into the liver aspect of all this as it becomes necessary. No sense posting a bunch of information that won't be relevant.
So thats where I'm at. Waiting. Waiting for them to finish up tests and give me the news as to which way I'm headed. I have a feeling there will be much, much more waiting to come though, so I guess now is as good a time as any to start getting used to it. Thanks for choosing to wait along with me.
Much love.. Erin