Liver transplant - Let's support each other

Stella, I do not fit the mold! I also do not have the IBS that many patients with PSC have. I do have a history of some autoimmune conditions on my mom's side of the family. For example, I have an autoimmune skin condition (vitiligo) as did my mom and grandpa.
I have located 2 older discussions where members are talking about PSC. They might contain something to let you know that there are others.
In the Digestive Health Group -
https://connect.mayoclinic.org/discussion/primary-schlerosing-cholangitis/
In the Healthy Living Group - PSC of the liver
https://connect.mayoclinic.org/discussion/psc-of-the-liver/
If you haven't already seen in Mayo's Patient Care & Health Information: Diseases & Conditions: Primary sclerosing cholangitis
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797
I was originally treated in Kentucky, but was sent to Mayo Rochester to see one of the doctors who is featured in the PSC Pages. Will your son be treated at on of the Mayos?

@rosemarya I am sure, as you say, that the evaluation must be the same and that would include being physically able to undergo surgery, but what seems odd is that he would need to be put on the list for a cadaver liver. If he has a living donor then before anything that person would also undergo testing to determine if they were a good match. From what I understand the main criteria for a live donor for liver is blood type and size, but of course there is also health, both physical and mental. If the criteria is satisfied, why would he need to be put on the list for a cadaver liver? That's what I do not understand.
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.

@gaylea1 That was one long HE episode. The most mine lasted were the ones that put me in the hospital and that was generally for two or three days, but it sure seemed longer.
After my transplant, when I was feeling some pain, my husband would say "no more lactulose" to make me feel better. It really is miserable stuff. My daughter would make me laugh by pronouncing it in a very odd manner. You have to do whatever you can to find something to laugh about.
You were fortunate that the medications prevented you from having any more episodes. What was your MELD at transplant? It sounds as if you are doing very well, that's wonderful. I did very well too. It really does seem like a miracle.
JK

@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.

@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.

@stella25 Your son has not had any HE episodes, correct? I would think they may not put him on anything unless he does experience them. I sincerely hope that your son, like many people who have cirrhosis, never have to go through that. As I said before, if someone is a victim of HE episodes the caregiver has to try to be understanding as difficult as it may be. My first HE episode lasted for a relatively short amount of time but since it was so odd my husband brought me to the ER and then afterward I had to see my PCP. She called me on the phone after I had an appointment with her and told me she thought I had Alzheimer's! Two other doctors, one a neurologist, were stunned that she would do that. A lot more has to be done before Alzheimer's is diagnosed. After that I did some research to find a new doctor.
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.

@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

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.