This and That and Talk - My Transplant

@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

@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 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

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.

@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

@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

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?

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.
https://connect.mayoclinic.org/discussion/what-would-make-your-health-care-experiences-better/
Enjoy your day!
Rosemary

@2011panc, I am honestly surprised that they assigned you 4 hours of walking! I realize it was a test of the effectiveness of the injection for pain - but, I don't imagine that you are in physical condition right now for that kind of endurance. No offense intended.
My husband and I enjoy a good hike. And we do not/cannot go 4 hours of even easy trails that long. Personally, I find shopping to be very exhausting anyway, I still enjoy it, though-it's my girl time with my girlfriends.

You have raised a good point about knowing our own areas! There was a push for 'staycations' several years ago when the gas prices were rising. And people were sharing about their local features. That might be a good discussion topic for the "Just Want to Talk" Group. I can envision it to be an uplifting and informative conversation. And it would appeal to all members. I would like to ask you to think about starting such a discussion. I'm thinking in terms of the features of your area that make you feel good or How does it present blessings or positive living, etc. (Maybe I'm putting off paying my bills, by writing this;-) What are your thoughts?
Rosemary

@rosemarya Amazing, right? Walking and standing are the most painful things I do, and they wanted me to walk the first 4 hours after leaving the office. So . . . we went shopping, my favorite pastime. We went to Target and I used a cart. I made it an hour before I had to find some place to sit. We ate a late lunch and then found a little strip mall to check out the shops. After about a half hour we ended up in Barnes & Noble, where chairs are available. I had to sit every half hour just to make it through. It was tough and I am certainly glad it is over. It was a test to see how the injections affected my pain. As I said, epic fail. I am disappointed, but will go back next week and see what else we can do. As smart as God made us, there must be something. I also like craft and sewing shops.
Just now I am preparing an introduction box for a student in Oklahoma to share our local customs and culture. I discovered that I have a wealth of information to share and a renewed pride in my State. It reminds me of how many people seem to think that we need to go somewhere else for vacations. I wonder how many vacationers really know their own area?
Best to all, thank you for sharing with me.