Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
You have a smart son. Bravo to him for being so aware of his health and for being an advocate for himself. Early on my PCP referred me to GI because he is wise to admit when something needs a specialist's opinion. After reading many other experiences I know how blessed I am to have recieved immediate referral. And then, when it was time for me to go to liver transplant clinic, my GI knew it, amd made referral. Like your son, I didn't have the long wait for appointment, but was seen the following week at the liver clinic at the Univ of Kentucky where I was evaluated for transplant, and listed. I received excellent treatment there. But when the indication of cholangiocarcinoma (and unsuccessful biopsy samples) entered the scene, they knew to refer me to the Mayo Clinic. For me things did get complicated. But by taking one step at a time, and following the direction of my excellent medical providers, I am here and healthy today.
I never experienced any HE episodes, but from the beginning, we were told to be aware of signs. Goes to show how everyone is different!
One of the most comforting things that my GI told me was that PSC patients did well after transplant. And also that by knowing in advance, we had the opportunity to practice healthy lifestyle to be better prepared to carry on.
@stella25 Yes, I was fortunate, and it was the neurologist who first mentioned liver possibly being the cause of the HE episodes. I went to him because it was thought the confusion was from something neurological. From what I know the HE episodes should have been a HUGE red flag, and jaundice should be also.
I never had jaundice which I guess was probably the reason that my liver was not immediately suspected, but not everyone does get jaundice, and sometimes the AST and ALT numbers are not really elevated much.
I am so happy for your son that he was smart, found some answers and persisted in getting a diagnosis.
JK
You were extremely fortunate! Goes to show we do need to be diligent about our health and the care we need. Especially with more complicated scenarios such as yours and my son's. My son suspected his liver by searching the internet. His primary symptoms were jaundice (he was YELLOW) and pruritus. He sought a second opinion from a sports medicine physician that a friend recommended. They did blood work which came back with elevated bili and other LFTs. It was that physician who called the liver clinic and got my son in to see the hepatologist 2 days later (bypassed the typical 3 month wait for an appointment). From there it was MRCP, ultrasound, fibroscan, ERCP, colonoscopy, etc.
@stella25 I guess I didn’t fit the profile either since it was almost a year and a half from my first HE episode to a diagnosis. I had other red flags too, declining platelet count, shaky hands, recently diagnosed diabetes, edema (fluid retention in my feet and ankles), plus additional vague symptoms. My doctor told me he was relying on previously made diagnoses, like essential tremor for the shaky hands, and Idiopathic thrombocytopenic purpura (ITP) for the low platelets. When a diagnosis was evasive I think he should have started from scratch.
Your son was smart to go elsewhere. What clued him in that it could be his liver? I was fortunate that I was diagnosed when I was because I had malignant lesions and if there had been more or if they had been just a bit larger I would not have been a transplant candidate.
JK
That is correct. My son has not had an episode. We were concerned because he lives alone. I'm about 40 miles away. We text daily and he has told his coworkers & friends about his PSC and the possibility of having an HE episode. We were thinking it might be a good idea just as a precaution. I'm glad you went in search of a new doctor after being told you had Alzheimers! About 6 months prior to my son being diagnosed with PSC he told his GP who insisted he had allergies that he thought it was his liver. His GP commented that my son did not fit the profile for liver disease. Good thing my son did not accept that answer and went in search of and found his current hepatologist who was able to diagnose the PSC almost immediately.
@gaylea1 That must have been really terrible, to be somewhat incognizant for so long. I do know that some people really are not totally cognizant through the whole ordeal so cannot drive. My episodes were fairly predictable, I either woke up with one, or had a really bad stomach ache first. If I was out and my stomach hurt at all I dashed home, just in case, but generally, it was just a plain old stomach ache. Better to be safe though.
I am so happy for you that things are so much better now, and I hope that the upcoming blood work and today's CT will be good. I will be looking forward to hearing that you are celebrating that all is well.
JK
@gaylea1 I hope you get good news on your CT!
Blessings,
JoDee
@contentandwell 3 weeks was long for an HE episode and the lingering effects was 3 months. My last MELD score before transplant was 30. After the initial transplant they found the artery from my liver to my heart was kinked. I had an angioplast to correct it but it splintered the artery and I had to have a 2nd surgery 2 weeks later.
Some of my blood work is not trending and I had to have another CT Scan today. So...not out of the woods yet.
@keggebraaten Thanks for the info. I did figure that all of the same tests had to be done of course, but I believe @bwebster93 was confused thinking that they needed a cadaver liver to be available before being able to have a living donor -- "We were told he had to go through the list and be put on it for a cadaver liver before mine will be considered". I was pretty sure that there must have been a miscommunication with the transplant center.
JK
@rosemarya and @contentandwell and others,
Great discussion about the transplant list and deceased donors versus living donors. I spoke with our medical director and she may be able to help clarify why the need for all patients to be listed. Doctors perform a thorough evaluation on the recipient whether they are getting a deceased donor or a living donor transplant. The qualifications for receiving a transplant need to be met by the recipient for both deceased and living donation. The reason he is placed on the list is mostly a logistic reason – the United Network for Organ Sharing (UNOS) tracks transplants and patients for both deceased and living donation, and there is only one list. Every patient getting a transplant is placed on the UNOS list. The doctors determine if patients qualify for transplant, and then they determine if living donor transplant is the best option for that patient, but the list we enter the patient into tracks all the information for future use. I hope that makes sense. Please ask if you have more questions.