Liver transplant - Let's support each other

@rodney9999 My son with PSC is on the wait list at the University of Utah. Currently they do not transplant high risk livers. If & hopefully when they change their policy our son would accept a hep C liver if one became available. Thank you for sharing this post. I wish you all the best on your journey to complete recovery:-)

Thank you everyone for the nice welcome. My team informed me without acceptance of a higher risk liver, I would need a MELD of around 32. I knew I’d never last that long.

As you indicated, It seems that a liver considered high risk may actually not be serious and is treatable. I know everyone’s situation is different but for me it was the best option.

@rodney9999 I too welcome you to Connect. Congratulations on being post-transplant. I had a transplant in September, 2016. You were very fortunate to have a transplant at a MELD 23, I presume that was because you agreed to take a high-risk liver. I discovered that some of the reasons that cause them to be considered "high risk" are often not serious, and of course Hep can be cured now after having a transplant. I was never approached about that but if I had been, particularly at the point I was at, I definitely would have considered it also.
I am happy that things are going well for you. Things have been great for me ever since my transplant, other than a few pesky things caused by the immunosuppressants. I can live with those though.
How wonderful that you were able to help another family with their fears also. Like you, I was not yet at the point where my team thought I would get a transplant (MELD 28, which at that time was lower than typical in Boston) but a liver did come through for me at that MELD, which was great because in the month prior things had really gone downhill. My MELD was due to be increased soon.
JK

That is a powerful story, @rodney9999. It can really help to hear from others who have been there to allay anxieties and fears. It must've been very rewarding to have helped the other family feel less nervous about a life-changing decision. With Connect, you can continue to help others through your experiences. Glad you're here.

Thank you for moving the posting. I was on the waitlist for 6 months. I realize it is early post transplant however I am feeling well.

I know everyone has a story and mine is a long one; however I just wanted to share a quick story. During a post op follow up appointment with my doctor, he asked myself and my wife to speak with another family regarding accepting high risk Hep B/C livers. This particular family was nervous, just as I was, about signing consent to accept such an organ if one became available. Without any doctors present, this family after talking with us for about 10 min and looking at me, signed consent.

For me, I was very sick however my MELD wasn’t high enough to warrant transplant. I’m realizing now that could have been the best decision of my life.

Welcome @rodney9999 and congratulations on your new liver. Wow only 7 weeks. You'll notice that I moved your message to this existing discussion called "Liver transplant support group". I did this so you could meet a whole gang of people - some who are awaiting a liver transplant and others who, like you, have had a transplant.

I'm confident your story will be inspiring and of great interest to people who may have to consider a high-risk liver donor. How long were you on the waitlist? How are you feeling?

Hi,
I’m new to the discussion and just wanted to join the group. I am 7 weeks post liver transplant and was transplanted with a MELD of 23. Things for me so far are going well. I accepted a high risk liver with the donor being exposed to Hep B/C. Doctors informed me and my wife take whatever we could get and we did!

@mego2k, Thank you for sharing your experience! This is another example of the Miracle of Organ Donation - Life!

As I write this reply, I can't help but to remember the feeling of elation, relief, and joy that I experienced when I woke up after surgery. I still get chills when I remember it. I did not have to make a decision like you did, however I do remember my surgeon telling me that my surgery was not 100% certainty until she inspected the organs herself. She approved, and I got my transplant.

We are indeed fortunate to have good doctors to guide us!

@mego2k So happy you chose to take a high risk liver. You don’t say what was high risk about it but I recall that some of the things that could cause that classification were pretty minor. It sounds as if you’re doing great and have a happy, healthy life from this point forward. Isn’t it wonderful to be able to put that behind you?
JK

The day that the U of Kansas called and said they had a liver for me. Until then we hadn’t talked about a high risk liver and the liver was one of those. I asked him about it and he was very informative and answered all my questions. I knew that I was sick and I had always put my trust in my doctors for my care. So I took the chance and as it has turned out I am still alive and had I turned the liver down I would have died within a week. After transplant it was surprisingly odd that I made that decision on such short notice and all.