I SEE THE SURGEON TODAY ABOUT A LIVE DONOR, WHICH SEEMS TO BE MY ONLY OPTION. WOULD YOU ASK YOUR CHILDREN OR A CLOSE FRIEND TO DONATE. MY CHILDREN SEEM VERY AFRAID TO DO THIS. I KNOW THEY LOVE ME SO MUCH. IT IS PUTTING SUCH PRESSURE ON ME. I HAVE NOT BEEN ON GROUP BECAUSE I HAVE NOT BEEN FEELING WELL. I HATE THIS DISEASE. NAUSEA, TIRED, LOSSS OF MUSCLE,ITCHING,LOSING MY HAIR, AND ALL THAT IT IS DOING TO ME. ANSWERS///////???????
It's really tough. Sending you my best wishes. My 22 year old daughter was diagnosed last year with PSC and as her Mum, knowing that I am the same blood group and hopefully tissue match I would donate part of my liver to her. It's really important to get as much info as possible about the procedure of donation and how quickly the liver regenerates. At the end of the day the member of your family or friend has to make the decision to donate. Information helps dispel fears and allows the potential donor to make an informed decision. I really feel for you - It is a hard thing to ask - but I know you have people who love you and will be there for you to attend your surgeon's app with you. Think of you and sending you a prayer that all will be positive with your app. Good luck and hope you are feeling a bit better. Andrea
I needed a live donor as well. I was at the end with PSC. For three years I was on the transplant list. i was getting real sick, but my MELD number was 11. I needed 22 to be considered for transplant. The surgeon told me my only chance was to get a live donor. We only had my daughter and a neighbor that had the same blood type. Both were tested and disqualified because of anatomical reasons. The hospital told me only one in five is a match.
How do you find a donor? It has to be someone known to you or your family. My daughter created a Facebook page called, “Help Paul Find A Liver,” that told my story. (you can use that as a search and find my page) A high school friend of Heather’s living in a neighboring state saw the page and volunteered. She was a perfect match. Surgery was done 3 weeks later on February 2, 2012. I am completely well. All the PSC symptoms are gone.
Tell friends, neighbors and relatives about your need. You never know where help will come from. If you use Facebook, mine may help give you some ideas about how to go about it. We set it up so interested people could call three people we selected to ask questions and to help get them signed up for testing.
My donor, Kathy is in perfect health. She had not seen Heather for fifteen years since graduation. Facebook brought us together. She we get together with Kathy and her family now, we call it a liver reunion.
Have hope, my friend. Take control of finding a donor. Nobody will do it for you. For me, it was a matter of life or death.
Paul, I was discouraged by my hep against using Facebook. But you're a perfect example of how it really works. We are connected to people who do know us through friends, family, all kinds of connections. These are not strangers who come to your page and volunteer to be a donor. Oh, I have to admit that I got a response from a Ukrainian gentleman from my blog to be an organ donor - but he wanted a lot of money from it. Obviously, you just ignore people and offers like that. I will go to your Facebook page and see how you did it.
Another way to do it, Barbie, is to send out an email to everyone on your mailing list. And you can add that they can spread the word further if they want - if you want to add that. There's a story of a nun who needed a kidney who did just that and she had something like 16 offers!
The truth about live donor is that there are fewer risks for them than there are for the recipient. But for you, I know it's worth it. Regaining your health! The benefits are great for both donor and recipient in other ways than physical, too.
Keep searching! Use whatever means you can think of. Hey, most doctors are not on Facebook and don't know how it works. I wouldn't run across Paul's page in a zillion years - if he hadn't told me about it and the specific name. And you can put posts out that are just for Friends Only, not the Public. I'm cheering you on. I have a low MELD and growing symptoms, and my doc is recommending live donor to me, too. Best of luck!
I have asked my transplant teams and hepatologists about a live donor. They have all stated PSC effects the dile ducts so a live donor would not be possible. The ducts have to be transplanted too, otherwise the diseased ducts are not removed.
Jennifer, the University of Colorado Hospital Transplant Center has a long, long history of performing live donor transplants for PSC patients. As do other transplant centers around the country. The surgeons know what to do with bile ducts. You need to update your transplant team and hepatologist. And by the way, the very first liver transplant in the world took place at Univ. of Colorado Hospital. They know what they're doing. And they've recommended it to me.
Facebook is just one tool. It worked for me. Like you said, you can ignore any that are not friends or family. To show how urgent it was for me, I asked the OR nurse to take pictures with my camera. The first one is my donor's healthy liver graft just before it was put in me. The second is my liver after it was removed.
116-Kathysliver.JPG (621 KB)
paul, would you please give me info to get to your fb page. I also am in a life or death situation. I am not reallly able to wait months for a transplant. My children were not acceptable to be donors. My friends are older than ththey will accept, so that leaves me in a bad place. Can you also tell me the odds your surgeon gave your donor, mine was 1 in 750, which scared many away. Barbie
Barbie, I'm going to jump in here because when I went to look for Paul's FB page looking for a donor, it wasn't exactly the name you'd need to look for.
Here it is - Help Paul Find an Organ Donor. That's copied directly from FB.
I don't know what you mean by "the odds your surgeon gave your donor, mine was 1 in 750, which scared many away." What do you mean by odds and the 1 in 750? Odds in finding a donor? That may be statistically accurate, but there are a number of live donor transplants done every year. I urge you - really!!! - to write to every single person you know and to ask them to PLEASE pass on the information to anyone that they know. This is your life and you need to leave Fear in the backseat and dive into the search. There are people out there who would love to feel needed, who have been thinking about doing an organ donor so they can feel they've made a real contribution in their life's journey. I've been completely surprised by what people share with me on this topic - in a good way.
I wish you the very, very best in your search and I'm cheering you on!
thanx danabee. the surgeon meant 1 in 750 for the donor not making it. You are so right, everbody is scarded away. Have you had a transplant?
I am a PSC patient too. I wondered if you had a picture of your diseased liver after it was removed? I would like to compare it to the healthy liver. I was also told by my doctor that I couldn't have a transplant due to the bile ducts.
Paul Hain said:
Facebook is just one tool. It worked for me. Like you said, you can ignore any that are not friends or family. To show how urgent it was for me, I asked the OR nurse to take pictures with my camera. The first one is my donor's healthy liver graft just before it was put in me. The second is my liver after it was removed.
Hi Cynthia,
I talked an OR nurse into taking pictures during surgery. The first picture is my donor's healthy liver section moments before transplantation into me. It is 2/3rds of the large lobe of the liver. The second picture is of my entire liver after it was removed from me. I had End-stage IV liver cirrhosis and my MELD was only 12. Doctors have said I did not have long to live. Every day I thank God for the wonderful person that volunteered to be my donor.
114-Kathysliver.JPG (621 KB) 115-PaulsBadLiver.JPG (696 KB)
Yes, you must dive in and actively seek a donor. If you have a mailing list of friends, you might find it emotionally easier on you if a close friend writes the letter asking if they would consider donation.Give the phone number of someone you recruit to take phone calls of inquiry, be able to answer basic questions about transplantation and numbers at the hospital transplant center that will answer more questions and set up testing if they want to go ahead. It costs $12,000 to test a candidate. The hospital only tests one at a time. They test the next candidate after a determination of no has been made. It takes about a month for the process to work with each candidate. Be patient.
danabee said:
Barbie, I'm going to jump in here because when I went to look for Paul's FB page looking for a donor, it wasn't exactly the name you'd need to look for.
Here it is - Help Paul Find an Organ Donor. That's copied directly from FB.
I don't know what you mean by "the odds your surgeon gave your donor, mine was 1 in 750, which scared many away." What do you mean by odds and the 1 in 750? Odds in finding a donor? That may be statistically accurate, but there are a number of live donor transplants done every year. I urge you - really!!! - to write to every single person you know and to ask them to PLEASE pass on the information to anyone that they know. This is your life and you need to leave Fear in the backseat and dive into the search. There are people out there who would love to feel needed, who have been thinking about doing an organ donor so they can feel they've made a real contribution in their life's journey. I've been completely surprised by what people share with me on this topic - in a good way.
I wish you the very, very best in your search and I'm cheering you on!
Cynthia,
I don’t understand why your doctor said something about your bile ducts prevented you from getting a transplant? PSC is a disease of the liver including the bile ducts. When the surgeons Removed my liver, they found PSC had damaged where the bile ducts attach to my small intestine. They had to resection it and create a new attachment point. My bile ducts work fine now.
Cynthia said:
I am a PSC patient too. I wondered if you had a picture of your diseased liver after it was removed? I would like to compare it to the healthy liver. I was also told by my doctor that I couldn’t have a transplant due to the bile ducts.
Paul Hain said:Facebook is just one tool. It worked for me. Like you said, you can ignore any that are not friends or family. To show how urgent it was for me, I asked the OR nurse to take pictures with my camera. The first one is my donor’s healthy liver graft just before it was put in me. The second is my liver after it was removed.
Paul,
That is some really great advice and information you put out there. I didn't know how much it cost to test a candidate and that's a valuable piece of information. And the time (one month) it takes to process one candidate. I never thought about asking someone else to send out the letter or email asking for the donation, but that is a valuable bit of advice. Thank you so much for continuing to be part of this process for others seeking to do the same thing you did.
Your welcome!
My brother volunteered to be my live donor without my even asking him. He has not been tested, so I don't know if he is a match. I am not on the list yet, but things are going that way. My liver specialist said that the odds of a live donor dying are 1 in 300 !?! My situation is currently not as dire as yours, so I won't pretend to know what I would do. I don't think I could ask either one of my kids (both older teenagers) to take that kind of risk.
Sometimes, I don't know what set of doctors has the right facts about this disease and its treatment--so many conflicting opinions and treatments. I live in Michigan, but will keep the U of Colorado in my mind for the future.
People, whether they are relatives or not, are going to do what they want to do. My adult daughter secretly arranged to be tested. I found out and was not pleased with her.It was a tearful discussion. She wanted to help me and I wanted to protect her. She could not stand by and do nothing. It came down to a parent protecting their child even if it meant my death and an adult who was willing to risk death to save a parent. She was right when she said she did not need my permission. It is at that point that I surrendered. I left the whole process in God's hands.
My daughter was not a match. Never-the-less, she is my heroine. One out of five is a match. My donor, a friend of my daughter's from high school that she had not seen for 15 years, was tested and was a perfect match. She was number four. I had to fight the same resistance in my thought for her. Without putting it in God's hands, I don't think I could accept the idea of any person putting themselves at risk for me.
People have empathy. A powerful force resides in us that makes us do courageous things and not think we are courageous at all. That is how my donor is. Very humble, not seeking any attention or praise. I have a special place in my heart for her that will last as long as I live. Not a day goes by that I do not think of her and what she did for me. That same willingness to give was in each of the people tested for me. They each are heroes, to me even if they didn't match. Donor stories go unheard for the most part. Just one of them is enough to renew your faith in mankind.
I never heard risk numbers. My donor's surgeon said it is major surgery that has proven to be very safe. She said there is a small risk of death. Even that did not deter my donor. What a courageous person!
Hi Jennifer. Yes, the bile ducts are affected. The surgeons re-sectioned my small intestine and made an attachment point where the bile duct from my donor's liver graft could be attached. It worked fine. I'm healthy.
Jennifer D. Howard said:
I have asked my transplant teams and hepatologists about a live donor. They have all stated PSC effects the dile ducts so a live donor would not be possible. The ducts have to be transplanted too, otherwise the diseased ducts are not removed.
wow ....your liver was unbelievable, no wonder you were so ill ! I hope your feeling much better now. I go to a gastrologist because there's no heptiologist here. My doctor has never told me what my meld score is, what does the number represent? He told me I would not be a candidate for a transplant because my bile ducts are so bad. He says all we can do is replace the stents in my liver when they get plugged, and treat my symptoms as they arise. I just got over another bile duct infection, Wish there was a way to stop them, I'm down to 90 lbs. and it really scares me. Thanks for the pictures, it helps me understand whats going on internally. God bless you with a speady recjovery & great health.
Cynthia said:
I am a PSC patient too. I wondered if you had a picture of your diseased liver after it was removed? I would like to compare it to the healthy liver. I was also told by my doctor that I couldn't have a transplant due to the bile ducts.
Paul Hain said:Facebook is just one tool. It worked for me. Like you said, you can ignore any that are not friends or family. To show how urgent it was for me, I asked the OR nurse to take pictures with my camera. The first one is my donor's healthy liver graft just before it was put in me. The second is my liver after it was removed.