Dolphin5, would you clarify your question a bit more for me? I'm sorry but I'm having a little difficulty figuring out what you are asking. Thanks :)
oh, I was just asking Paul's comment about investigating for a live donor. I don't know how one would begin to do that.
Thanks for the clarification Dolphin5. I'm sure it's just me not following the thread as I should. I will tell you that for me one of my siblings came to me and offered to be a living donor. Of course one of the big things is the blood type of the donor must be compatible with yours. They also factor in size and age of the donor. Another thing is that there is a BMI limit that you can't be over or they will not consider you. They took my brother through the same battery of tests that I went through for being listed on the transplant list. We are hopeful to hear any day now that he has been approved. Things seem to be currently delayed as the transplant surgeon team and the radiologist study the MRI's of both of us to make sure everything is going to fit properly I guess. I sure do need this transplant soon however. My doctor told me Monday that I needed to be transplanted soon. One good thing for any potential donor you might want to tell them, is that your insurance pays for their donation of their liver portion. The donor doesn't bear any of the costs. Duke even told my brother about a living donor foundation group that sent him an AMEX card and pays for all his travel, lodging and food expenses associated with the transplant. Hope this helps.
Mark
Thanks for your explanation. Still, what are the risks to your brother and how do you and he deal with that part of things?
Well there are risks involved as with any surgery, but Duke has done these living donor transplants with very good outcomes. He will get his own transplant team that works totally independent from your. They are totally dedicated to keeping him healthy and to make it through the surgery. As far as dealing with his being a donor, it was he that came to me. I would never have asked him but it was on his heart. He wants to see his brother live. He and his wife discussed it and came to a decision without any pressure or influence from me at all. We both know the risks involved yet he has no reservations in going through with the surgery. Our faith and hope in the Lord is what we are banking on through all of this. It's a sacrifice that "Thank You" just isn't enough. It has been emotional for both my wife and I to see this gift of ultimate love for a brother in need, this precious sacrifice. We are hopeful for good outcomes and long life. They even asked my brother, what if one of your children needs a liver one day, you know you can only be a donor once. His reply to them, I hope my children would be willing to give to each other if that need should arise. I'm just so thankful.
I hope this helps in some way.
Mark
Sorry it took me so long to get back to you. My transplant coordinator told me that the donor had to be known to us and could not receive any compensation. I had the same questions: where do I begin and how could I ask somebody? Long before I was told to find a live donor, two friends volunteered to be tested. Only one was the right blood type. He was tested and was not a match. My family is quite small. Only my daughter (whom I did not want to get tested) and my nephew living half-way around the world with three little children were a blood type match. They ruled out my nephew because of the dependent children. My daughter was tested, but not a match.
At this point we had run out of options. My daughter created a Facebook page about my disease and need for a live donor. She and a friend screened calls from people inquiring about it. A childhood girlfriend she had not seen in 16 years, though they had corresponded and watched each others Facebook posts, saw the story about me. She knew she was the same blood type and she called my daughter. She had lost her job of 10 years due to a transfer to a new city of her husband. She was wondering what purpose in life she had without her job, which had meant so much to her. My need was the answer. She needed to fill that gap in her life by helping me. She was tested and was a perfect match. Surgery was scheduled twelve weeks out. I was not sure I would last that long. The hospital had a live donor transplant cancellation and in 10 days our surgery took place. She and I are in great health. It worked out beautifully.
Dolphin5 said:
oh, I was just asking Paul's comment about investigating for a live donor. I don't know how one would begin to do that.
Thank you for that explanation of how it went for you to find a live donor, Paul. What a gift and a great outcome. You were totally blessed and I am truly happy for you. May we all be so fortunate to find an angel that is a match. Health, happiness , peace and love to you, yours and your donor. And again, thank you for sharing .
I think PSCer's are watched over. As the disease advances, we get more dependent. In our helplessness, grace holds us in life. Not all PSCer's will ever need a transplant, but for those who do remember that you have strength for the day to take that next test, make that next appointment, ask all your questions and follow up on new leads wherever they take you. Exhausted? Rest. The next step seems insurmountable? Chip away at it.
I had treating doctors in charge of my case that only knew of PSC from a textbook. You are the expert with your disease. Question things that do not seem right about your treatment. Be insistent. It is your body, your liver. Take care of the physical condition and do not overlook the cognitive and emotional effects of PSC, like memory, confusion and depression. I learned how to deal with them once I admitted I had them. You can only help yourself when your mind is functioning like normal. Stay positive. Don't give up.
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Thanks Paul. You made some very good points.
I'm currently in initial contact with UNOS to see if their board might consider giving extra MELD points for PSC patients. That would be such a blessing to so many if that were to happen.
Mark
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Keep us posted. If there is a petition process that is possible I know that many of us here will jump on the band wagon! Thanks!
And what about cognitive issues? How does one deal with that. It does not always show up in blood work, yet makes complex thinking processes that are critical at work very difficult to deal with. Disability makes sense but to get on it, I understand, based on cognitive issues/hepatic encephalopathy involves interview with supervisors at work to corroborate. How humiliating to go through that process! What to doā¦, what to doā¦?
Paul Hain said:
I think PSCerās are watched over. As the disease advances, we get more dependent. In our helplessness, grace holds us in life. Not all PSCerās will ever need a transplant, but for those who do remember that you have strength for the day to take that next test, make that next appointment, ask all your questions and follow up on new leads wherever they take you. Exhausted? Rest. The next step seems insurmountable? Chip away at it.
I had treating doctors in charge of my case that only knew of PSC from a textbook. You are the expert with your disease. Question things that do not seem right about your treatment. Be insistent. It is your body, your liver. Take care of the physical condition and do not overlook the cognitive and emotional effects of PSC, like memory, confusion and depression. I learned how to deal with them once I admitted I had them. You can only help yourself when your mind is functioning like normal. Stay positive. Donāt give up.
Dolphin5, don't let possible humiliation interfere with what is best for you. In 2010, I was a school business manager responsible for millions of dollars, negotiations, insurances, construction projects, etc., when it became apparent to me that I was losing my focus due to Encephalopathy. I could not recall details, even emails I had sent to others. I knew in my heart of hearts, that if I continued to stumble forward the lives of others would be affected by my errors. I was able to arrange a transition to a business manager in-training and to a supportive Board of Education that left the call to me. I had told them when I was diagnosed with PSC that I would not allow that to happen. It was time. I stepped aside without having to apply for disability. They all knew what was happening to me. I maintained my dignity and their respect.
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There is a fine line between denial and acceptance while living life the way you want as long as you can. Both patients and caregivers all walk this line and I don't doubt for a second the line can get blurred.
Dolphin5 said:
Thanks, Paul . I try encouraging my husband to look for alternatives to work, retirement, disability. I offer to work more so that he can stay home. He has a very difficult time accepting he even has this disease, even though he is very symptomatic, (jaundice, low platelets, itching, nausea, pain, fatigue, digestive and sometimes cognitive issues) and won't talk to anyone besides me about it. I have to bring concerns to the doctor's attention.
His interests in life has been low and he feels trapped at work, yet because of his low interest and motivation is unable to pursue a change in work or to working on his own, or even to disability. Disability would not be granted until he is off of work for one year and that brings him almost to retirement age-65 (medicare). Financially , it would be a challenge to be eating away at our retirement savings, but to me, it seems like a necessity at this point. (His MELD is 12, up from 7 in 2 years). My hesitation to plan any future other than a lifestyle that accommodates a low energy partner that might need a transplant within a few years is probably not much help in the depression department. He has grandiose dreams of climbing mountains and moving to the South Seas that make me think denial is alive and well in this scenario. Am I a drag, or what? It really helps when denial is not an issue. Not sure how to encourage anymore but to join him in HIS denial and live in my own quiet reality of the situation. It is all confounding to me. I take pleasure in the small things of life... food, shelter, my children and pets and the fact that I am loved. It helps... but the ugliness sometimes rears it's head... and I remedy with my gratefulness practices, for all those small things again and again and again...
Thank you for your response.Dolphin5
Paul Hain said:Dolphin5, don't let possible humiliation interfere with what is best for you. In 2010, I was a school business manager responsible for millions of dollars, negotiations, insurances, construction projects, etc., when it became apparent to me that I was losing my focus due to Encephalopathy. I could not recall details, even emails I had sent to others. I knew in my heart of hearts, that if I continued to stumble forward the lives of others would be affected by my errors. I was able to arrange a transition to a business manager in-training and to a supportive Board of Education that left the call to me. I had told them when I was diagnosed with PSC that I would not allow that to happen. It was time. I stepped aside without having to apply for disability. They all knew what was happening to me. I maintained my dignity and their respect.