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The transplant surgeon was really nice and very informative yesterday. Gosh, wish he could be her regular doctor, he "got it!" We were describing the mental confusion problems Fiona has and he listened and then asked if she ever had problems with her hands shaking. So interesting he asked that. She HAS HAD A PROBLEM with her hands shaking but GP doctor thought it was related to low blood sugars. The surgeon asked if she was diabetic and she said no. Well, guess what? It is part of encephalopathy. Gosh, I didn't know that!!
Then he was looking her stomach and scars and talking about how they would do the surgery if she ever got a transplant. They usually do a chevron shaped incision but because her major horizontal scar goes almost completely across her abdomen they are going to have to adjust the incision they make. Otherwise, they would create a triangle cut-out leaving the center without blood supply. So he smiled and said, "Instead of a chevron you are going to get the 'Mercedes cut'." Wow, now there is something to look forward to. HAHAHA
He told her once she gets a new liver she will feel better than she ever has her entire life. Her liver is so marginal she has never known what "feeling good" really is. He asked how long it took for the kasai to really kick in and I told him about 18 months. He said he wasn't surprised and was, in fact, surprised it kicked in at all.
He also said that everyone has the pulmonary AVM malformations to some extent. It is just a common thing. It only becomes a problem, like in Fiona, where the pressures in the arteries/veins get so high because of the portal hypertension. (Um, didn't know we all have them)
We discussed that if she was having esophageal bleeds they would be knocking themselves out to get her listed but since it was JUST lung bleeds it was no big deal. He totally agreed the MELD system doesn't work well and for someone like Fiona it may never ever work for her. In fact living donor may be the ONLY way she will ever get a liver. AND did you know, if they don't accept her into the transplant program, she isn't even eligible for living donor?
They are giving hepatitis B and hepatitis C livers to recipients who also have hep B and hep c. They will give wrong blood type or infected livers to non hep patients if they become status 1 (going to die in the next 24 hours). They are very strict about alcohol, drug use and smoking. They spent a great deal of time on medical marijuana (guess they have found that people immuniosuppressed using medical marijuana are more likely to develop fungal infections.) They randomly test for alcohol, drugs and smoking. If you show positive you are out of the program.
After talking to some of my liver support friends, they said to me, "You sound so disappointed." Well I don't know if I am so much disappointed as much as once again I feel like the transplant center is only looking at how they can disqualify you. I'm just sad. These evaluations throw me into grief each time because EVERYTHING is based on statistics. Is transplanting you going to help or hurt THEIR STATISTICS? I don't feel like there is anyone there interested in Fiona, as a person. I think once she is listed, that may be more support, but during the evaluation period it is simply you are good enough or you aren't good enough. It is very black and white. Some people get livers and live on and others don't and die. Transplant was never intended to save everyone, there just aren't enough livers so when they get an organ for you you better LIVE and do well, gosh darn it. Very cut and dry and cold. That's not saying they weren't nice but they look at this situation without any emotion. Some live and some die. As a parent that is so hard to hear and see time and time again. When Fiona was a baby and we first went for transplant evaluation the team was very bold and said, "Take her home and let her die. She will hurt our statistics." When we went back a month later, um she didn't die, they were, "Oh well now she is too healthy. She doesn't need a liver." Each time we went back they were convinced the problems she was having "were no big deal. Learn to live with them." Now that she is disabled, lungs bleeding, hospitalized FREQUENTLY, life at a standstill, they say, "well we might list you as an early candidate (courtesy listing) but you will not have a chance for a liver." Yes, Fiona has done very well on her native liver. Yes, for the most part her problems have been medically manageable. NO, this isn't a good place she is in right now. So does she ever get a chance not only to stand in line like everyone else, but does she ever get a "real chance" for a new liver? I think that is where I am right now. We jump through hoops. We bend over backwards. We work hard to do what is required and still it gets us nowhere. All I want is a chance for her. They truly hold your life in their hands and statistical papers and I am not sure they ever have the patients true best interest in mind. It is what is best for THEM as a institution.
To be fair, Fiona's liver doctor said this was the position we were in. He is hoping UCLA will do something because of the lung issues. AND..........the transplant surgeon was disappointed she DIDN'T have some pulmonary hypertension. Remember all the really scary heart cath tests she went through because we were told if she said pulmonary hypertension she could NEVER be transplanted????? Well now the transplant surgeon is saying a little of it is very good and would prove she has Heptopulmonary Syndrome. Yes that wonderfully horrible syndrome that shoots you to the top of the list....well according to the transplant surgeon you have both the pulmonary AVMS AND the pulmonary hypertension with HPS.......interesting. Who do you believe??? I tell you, now wonder parents of liver kids are whacky. The medical community drives us there.
Have I ever told you the world of organ transplantation is an ugly one? I hope one day there will be enough organs where this is no longer this problem of having to weed out people to reduce the numbers needing organs. I know we have been told many times all Biliary Atresia babies would be transplanted their first year if there were enough organs. Well gosh darn it, we have waited 20 years.
So now we wait. Whether she is listed or not, she basically will have to get much sicker, develop kidney disease, diabetes or esophageal bleeds. The liver has to fail more, plain and simply. There is no way around all of this. So now I guess we pray for illness and failure. What a horrible place to be in....I don't wish this on anyone let alone one of your own children or loved one. As you can tell I am a little emotional over all of this. It is a horror movie that won't end.
Peggy
TO MY DEAR FIONA
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LOVE MOM
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