This patient support community is for discussions relating to transplants, anti-rejection drugs, financial and insurance issues, long-term issues, organ rejection, pre- and post-surgery, and waiting list issues.
My mother is on the waiting list for a liver transplant, but her MELD score is fairly low. The problem is my mother has a serious case of Encepholopothy and her quality of life is pretty much non existant. I am in the process of finding out if I can donate part of my liver to her. I am interested in hearing the experience of other liver donors. I can't seem to find any information on this part the of the process, only what the recipient will experience.
Thank you very much. I have never posted on any kind of forum before, but I am deperate for information.
I can only share my feelings & opinions on this, but here goes. I am a mom with a meld score of 17. My 25 y/o daughter has offered to be a donor. I do not want this. She is healthy and has never had any kind of surgery whatsoever. Of course my body will be so much better with the transplant because it is ill now. She, on the other hand is healthy and needs no surgery. There can be a multitude of things that can go awry for the donor -- up to the possibility of death. I just yesterday had this discussion with my hepatologist so I suppose it's not just my opinion/feelings. It would be unbearable to me to live and have my girl possibly die for this, thus I plan to refuse her to be tested at this time. Can you understand what I'm trying to say here - I'm a mom, I dearly love my girl.
Please keep looking into the donor surgery, it's just about equal to the surgery for the donee. It does not reflect on my status and I will be placed on the list as the time comes and see what happens from there.
I'm also sure there are folks on this forum who can give you more hard data along with some good sites to check out. Actually, you have my interest going now and I will do some searches online to see what info I can gain. Thank you for posting this.
First of all, is your mother taking lactulose for her encepalophathy? If not, she should be. She also should cut out all red meat from her diet.
I am in a similar position in that I need a transplant and my daughter has offered to be a live donor. There are several reasons why this is a good option for the recipient. However, different hospitals have different rates of success and complications afterwards for both the recipient and the donor.
I don't have insurance and am looking into a hospital in Taiwan that has done 415 live liver transplant with NO mortalites.
Do some searches. My daughter found a lot of information on line. Not all transplant hospitals do live liver tps. I know the Mayo clinic does.
I will pray for your mother that God will heal her and keep her in His loving arms while she is going through this. I am a liver transplant recipient and doing very well after 3 months now. God gave me a shiny new liver from a 20 year old donor who died in a car wreck. I pray He will do the same for your mom.
I found out in 2003 that my liver was 90% cirrhotic, damaged by decades of Hepatitis C virus. I went through five years of hell during treatment and always had a MELD score of about 15 to 18. They would not put me on the transplant list until my MELD was around 23 or higher. That was when my liver started failing bad with ESLD. I was awarded Social Security disability for Hepatic Encephalopathy. Sounds like your mother is still got a long way to go before things get critical. I know what your family is going through and what your mother is experiencing first hand. Be patient with her even when she does not know you or acts erratically. The poison in her blood is making her mind freak out literally. I tried to leave ICU in the middle of the night after almost dying from blood leaking into my lungs. I fell after getting up and the hospital put me on 24 hour watch for two weeks. That is when the Lord visited me and told me I would be getting a liver soon (could have been the drugs I was on or encephalopathy but now I know it was real).
My doctors (Baylor College of Medicine) and the hospital (St. Lukes) do not perform partial live liver exchanges. (The hospital is really the boss on deciding who gets transplanted and when.) So I can't provide any good info on the subject of partial or live donors. It's much too risky for your mom and especially for you. However, some hospitals will do it, so keep it in mind for a last chance effort when and if the time comes. Whole organs from donors on life support are much more successful (99.9 % of the time with 5+ years survivability and good quality of life).
The encephalopathy can be controlled to a point using medicines and blood transfusions. Please give blood and ask all your friends and family for give blood in her name. She must be obedient to drinking that nasty honey tasting stuff religiously and take her aldactone or whatever they have prescribed for her. If not, she will deteriorate fast.
Let me know if I can answer any questions. Listen to your doctors and continue to encourage them to raise her MELD score. She can get a higher meld score by having frequent medical issues and going into the hospital a lot. Unfortunately, you have be almost dying to get a donor organ in most cases.
I place all my cares and concerns with the Lord, for He is my Savior and has saved me both physically and spiritually. God is Love!! Bless each of you who read this. God will come into your life, just ask Him.
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