This and That and Talk - My Transplant

To all:
I want to point out an interesting discussion: What Would Make Your Healthcare Experiences Better?
We are all from a variety of backgrounds and all manner of healthcare experiences - and - I know how much all of you enjoy sharing and supporting others;-) This is open to any members, and you do not need to mention where you receive(d) treatment. Guys, do not let the posting in Women's Health confuse you because this is not intended to be a woman's healthcare issue.

Enjoy your day!
Rosemary

I have posted before but have a few questions. I am 68 yrs old diagnosed with cirrhosis but my doctors believe is is compensated. My doctor does believe at some point I will need a transplant. I am in relatively good health. I realize my age may rule that out in the future. I have a friend that would donate but he is 64 in excellent health-runs 3 miles a day and bikes about the same. Is there any place that age is not THE deciding factor? I am thinking of coming to Mayo for a second opinion—Florida is more enticing weatherwise so are all locations equal?

@rose999, Good Morning. I want to welcome yo to Mayo Connect. I am a volunteer mentor. I am also a transplant recipient (Mayo Rochester). The questions that you ask are beyond my personal experience. I want to share the following link to Mayo's Liver Transplant Department. You will see that all Mayo Campuses work together in providing the best interest of each patient. There is also contact information (phone and email), so you can contact them for more information if you desire.
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

You say that your doctor "believes that your cirrhosis is compensated". I want to share my experience with you. I received excellent care by my local providers: PCP .... transplant department. But, due to complications I was sent by my transplant department to Mayo. At Mayo I experienced a level of care that I would call 'excellent +++'. They were able to treat me and my conditions, as a unique individual, not as a textbook case. So I received exactly what was best for me.
In your case, I encourage you to check out a second opinion - maybe there is a way to take care of your liver.

Are you currently being seen/monitored by a GI/or liver specialist?
Rosemary

@rose999 You are fortunate that your cirrhosis is compensated, I did not have many symptoms for a long time other than hepatic encephalopathy. That was enough, although thankfully they were not too frequent. Regarding age, I think many of the major medical centers look at the whole person, evaluating their overall health. I know that was true at my transplant center, Mass General Hospital. I was two days short of 69 when I was transplanted.
You are also fortunate in having a friend who is willing to be a live donor. I hope he turns out to be compatible and that you can have a transplant at the appropriate time.
I personally do not know if all of the Mayos are "equal" but you can find the stats on them on the SRTR database.
I hope all goes well for you in this journey of dealing with cirrhosis and that you don't have to go through the symptoms that can be really bothersome. Have you been evaluated and given a MELD score?
JK

My local GI said I didn’t have cirrhosis because liver biopsy looked good. My new Barnes specialist said biopsy was taken from healthy part of liver. Blood work shows low platelets at 70,(spleen 16cm) low wbc, low red but normal ast. I have severely itchy skin, a touch of HE, portal hypertension so they did MRE which show cirrhosis as does Cat scan. I have had now 5 strictures in my esophagus in last two yrs. The local GI doctor now says hecan see inflammation throughout stomach. My son had liver transplant in April 2017, my brother died last Sept of undiagnosed liver disease but they misplaced biopsy, and my 14 yr old grandson has had two bouts of acute pancreaitis in last 6 months. It is mitochondrial related but the doctors think all our liver problems are unrelated. I am going to ask my specialist here if I should go to Mayo. I tend to be very cold so I was looking at Mayo in FL.

@senior999, I am sorry to hear of the liver/cirrhosis history that your family has had. It sounds like even the doctors are confused about what/if any connection exists among your family members.
I want to share with you the link to Mayo's Transplant Department. You can go to Mayo Clinic on your own or with a referral from your doctor. When you contact Mayo, you can ask if you will need to go to FL or to another Mayo Campus. (I needed to go to Rochester because of the specialist who was there. - Don't let the cold keep you away if that is where you need to go.)
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

Rosemary

@senior999 RosemaryA is right. To perk your interest in Rochester, MN, further, there are two Gift of Life transplant houses about 6 blocks from the clinics with a "subway" (underground walkway) entrance about 2 blocks from the houses. Also, there is a really good (albeit a bit pricey) hotel right across the street. I certainly hope you find answers and healing wherever you end up.

@senior999 I have always wondered about biopsies, it has always seemed to me that it's sort of a hit or miss test. You may get an area with a problem or you may not.
The first real symptom of my cirrhosis was that my platelet count started going down, and over time it continued to decrease. At that time I was seeing a hematologist and he could not figure out my problem despite doing various tests. He then diagnosed it as ITP. I was also cold all of the time, and I had problems sleeping at night but those problems came later. I had the low platelet count for about 10 years prior to being diagnosed with cirrhosis, and when I was finally diagnosed and went to a hepatologist in Boston she figured that I had cirrhosis for about 10 years. A CT scan was what finally diagnosed my cirrhosis.

With such a family history of liver problems it's hard to imagine that they are not related.
I hope you get some good results from whichever Mayo you go to. I am sure you will.
JK

My playelet count went from 130 to 105 for about 8 yes and in last year is at 70. The bruising is awful. I also was told ITP. I had the bone marrow test and a lot of others. Iron level is high but WBCand RBC alittle low. The CT scan was the first to show cirrhosis but they kept saying liver biopsy was fine. It was a specialist that discovered it was done on my left side when ct scan showed problems in right. There are even more family members just diagnosed with liver problems that I skipped in my note. You don’t know who to trust doctor wise. I am going with Rosemary’s recommendation to let Mayo decide. I have been through 3 sleep studies-I told them no more. You and I have a lot of the same history.

@rose999 we do have similarities but no one else in my family has ever had liver problems. It is very obvious that mine was from fatty liver. I was overweight and did not pay nearly enough attention to what I was eating.

I really never had terrible bruising, no worse than I have always had! I think the reason I went a year and half after I had my first HE episode was because I was not jaundiced and my ALT and AST were not that bad but I have read that those are not good indicators of cirrhosis, they often are not bad. I never got jaundiced, even in the last six weeks prior to transplant when I really went downhill. I did have so many other complaints though that I discovered afterwards were all cirrhosis symptoms but no one really put it all together. My PCP thought it was a problem in my brain so sent me to a neurologist and he actually was the one who first said he thought it was a liver problem!

I will never trust the doctors around here again. I have mentioned before that when I went in the hospital in December for what turned out to be Legionnaire's Disease they tested and tested. After diagnosing pneumonia I am sure they would have stopped if I was in the local hospital whereas being in MGH, a hospital that I positively love, they are so good and so thorough, they did more tests and it turned out my pneumonia was from Legionnaire's which is best treated by a different antibiotic from what pneumonia is treated with.
JK