This and That and Talk - My Transplant

My physical therapist's mother had developed liver problems, curable, not cirrhosis, and is now in Dartmouth Hitchcock Hospital here in NH. Her PCP here in one of the local hospitals told her there was no urgency. She went to DH and yes, there was urgency. She has been in there since last week and will hopefully be discharged in a day or two. She will be changing PCPs. DH has outpatient facilities/doctors in Nashua, Manchester and Concord so she plans to find a doctor at one of their facilities. Another patient not adequately diagnosed by the PCPs around here. Thank goodness we have better options to turn to, even if they are less convenient. There are a few good doctors in NH, my neurologist is definitely one of them, but there sure are a lot who are not. I think in any profession that people tend to work up to those who are doing a good job and highly thought of. Obviously around here they don't have much to work up to.
JK

@rosemarya Yes, thankfully now it is all history, particularly the lactulose! UGH. Typical symptoms, all of which I had are:

* Declining platelet count
* Hand tremors
* Recently diagnosed diabetes
* Cold
* Trouble sleeping leading to day naps
* Hand tremors
* and, the big one -- HE - confused, irrational, tired

My hands were really shaky, more at some times than others. That was diagnosed as "essential tremor" but since it is gone it was obviously from the cirrhosis. As I said, together these are all indicative of cirrhosis so I can't help but wonder why no one put 2 and 2 together sooner than they did, particularly after I started having HE episodes.

Loss of appetite is also a symptom but that was one I never had. I never lose my appetite which of course is why I got so heavy. So far I am keeping my weight down and hopefully I will continue to be able to.

JK

I received the appt call this morning but was told the calendar was filled for the next 12 weeks and they weren’t booking past that. He told me call back in a week or two. He did say that Rochester was best for liver. My son is almost at his yr mark for his transplant. He is doing great. My brother who died in Sept had an autopsy for his undiagnosed liver disease but it hasn’t shown up yet. My 14 yr old grandson saw a GI specialist experienced in mitochondria and pancreas issues but couldn’t shed light on why he had two attacks in last 6 mos. So we have lots of questions but no answers. My doctor thinks they are all unrelated but 2017 was a problematic year. I appreciate your understanding and help. Hug back to you.

@rose999 Here's a hug for you. Keep in touch. Rosemary

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

@senior999 in addition to @2011panc reply - At the Gift of Life Housing, there is a free shuttle bus that picks up and drops off right at the door:-) Rosemary

@contentandwell, Thank you for sharing. I always appreciate, and look forward to your liver input! I think it is amazing how many different symptoms we experienced on the path to transplant. And also how many similarities, too.

That is a good question about biopsies! I never thought of that:-) I think that my liver was pretty much damaged throughout.

Being cold was also my fate pre-transplant. I remember the heated blankets- Heavenly!! ( Mayo Methodist 10-2 in Rochester has my vote for the best heated blankets ever! )
I was not able to get a good night sleep, either. I remember how much I wanted to sleep, how much I needed sleep! Thankfully that is now a distant memory.
Enjoy your day!
Rosemary

@rose999, I wish you success in your search for a diagnosis and treatment.

I would like to encourage you to make your 2nd opinion inquiries soon, while your strength and your health are favorable. I do not know what kind of a waiting period there is for your situation.
Do you have someone who will accompany you? It is helpful (and encouraged by Mayo) to bring along a companion as a second set of ears.
Let me know how I can be of support or if I can help you in any way as you move ahead.
Hugs,
Rosemary

@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

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.