I haven’t posted in a while, so many of you may not be familiar with our problems. My wife is suffering from ESLD due to auto immune hepatitis, which developed into primary biliary cirrhosis. She was on a transplant list (her last MELD score was 13), but due to chronic infections in her left ear, she was deactivated last fall until she gets the ear repaired. She was also diagnosed with “Sjogrens syndrome” last year by her ENT (another auto immune disorder) which causes dry eyes and mouth. She had surgery on her ear two weeks ago and it appears to be a success, however the Sjogrens disease has started to make her life completely miserable. Her dry mouth has caused tooth decay, as she had one root canal last month, and after a dentist visit yesterday, we have found out that she has 4 more teeth that may have dying roots. Her eyes are so dry, she can hardly keep them open. She saw an Opthamologist last week who prescribed Restatis drops, but they aren’t giving her any relief. She has an appointment this Thursday for him to plug her tear ducts in hopes of keeping more moisture in her eyes. Being her primary care-giver, I am so confused I just don’t know what to do. We have appointments tomorrow for her to have her yearly transplant testing done at a local hospital. I am so afraid that her Hepatologist is going to keep her off the list due to the tooth decay and other Sjogrens symptoms. I haven’t seen any other posts on this list regarding similar problems, and am wondering if anyone else is going through the torture we are. I know this is a long post, but I just needed to vent, as I am at my wits end.
I can certainly understand your frustrations. Last fall my wife also developed lesions on both sides of her tongue, and was in a lot of pain. We went from an Ear/Nose/Throat Specialist to a Dentist, and then to an Oral surgeon. The surgeon took biopsies that were benign, and then surgically closed the lesions. As soon as the stitches dissolved, they opened up again. This all started in October, and her tongue has just now healed. She also developed Type 1 diabetes last year when she started taking hydrocortisone, and is now twice a day insulin dependant. We now has an additional doctor thrown into the mix, an Endocronologist, however her A1C the last time it was checked was 5.6. I’m told they won’t transplant if the A1C is 8 or higher. Luckily her ammonia is under control with “Kristilose” and she hasn’t had any fluid build-up in a year. Her main complaint is fatigue, dry mouth, and dry eyes, and an occasional bout of nausea. Her regular Hepatologist, who was a very nice and caring lady had to take an extended family medical leave, and the one she is seeing now has the bedside manner of a dead fish. He may be competent, but is very abrupt, and doesn’t seem to have the compassion as her other doctor had. She went through the testing process in March with another hospital here in the Dallas/Fort Worth area, and we are waiting for her case to be presented to the transplant committee. If they select her as a patient, she will be dual listed in both cities, as opposed to only Dallas now. Like you, I have been reading posts from this site for about a year now, and have gotten tons of useful information. When I think I can take no more, I read of someone who is having a much more difficult time than we are, and count our blessings. Take care and thanks for the post.
She had her tear ducts plugged Thursday, and it looks like that procedure along, with the Restasis may be working. She had a pretty good day yesterday without complaining about dry eyes. We will see how the weekend goes. Thanks for your continued support, and may God bless you all.
I returned home this evening from a week away, and just read this entire thread. I got quite a giggle out of the "dead fish." Charlie, I'm so glad that things are improving! As you have discovered, liver disease is a roller coaster ride, so hang on!
Charlie, please do ask about the "wait time." I wasn't aware that length of time waiting for a liver had any bearing on who gets transplants.
I think wait time is used when offering a B list organ....it is offered first to person with higher meld then if they refuse or are to sick for what is considered a higher risk organ it is then offerd to the next person down so if you have say 3 patients with same meld it is offered to the person listed the longest. That is how it was explained to us when we agreed to be considered for higher risk liver.
Sue, thanks for the clarification. That makes sense.
Charlie, I agree: Do what feels right and best for your wife and you. As for the "wait time" criteria, I wonder what those odds are, that 2 people would have the same MELD at the same time at the same facility and both have the same blood and weight requirememts? A million to one or more?