Liver transplant - Let's support each other

That’s exactly what I need. To have a relationship with my PCP. I’ve never had that! I’m leaning more towards Hopkins everyday. Besides,they can help with my eating disorder among other things. Hopkins would definitely be able to help with that. Their known through out the world for their eating disorder unit! Yes,Hopkins sounds better and better all the time! Thanks for helping me realize this.I love being able to share with you and the others. I have learned a lot and actually it’s starting to feel like fellowship. Something I found empty in life is being filled by being apart of this group. Thanks to all❤️

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

I am a 17 year liver transplant survivor. I was very blessed. My transplant was much easier then getting to the transplant. Very ill prior to transplant. Had been sick for 4 years prior to my transplant. No pain, but had high ammonia levels and went into short term comas many times before transplant. After transplant, was very weak. I really never got my strength back. However, I had no rejection problems. Have been able to be here for my 2 grandchildren and 4 great grandchildren, what a blessing. This last couple of years have been a bit tough. I have worked full time for the last 16 years. I developed Afib, ended up having an ablation, which went good. Was put on blood thinner (Eliquis, had a GI bleed. Lost 40 lbs over about a year and have hyperthyroidism. Started thyroid meds, which has shaken up my afib. Finally after 16 years on prograf, finally went to kidney doctor and found out I have 50% kidney function. I am now 63 years, I was blessed with many good years. With age I think you just start having more medical problems. I am hoping that I start gaining weight ( I weigh 88lbs now. But looking forward to improving with new meds. Just get a very good set of doctors, Gastro, kidney and Heart doctors to keep an eye on you. Don’t just trust a family doctor or an internist. Mine didn’t even want to refer me to a kidney doctor. Said nothing looked that bad and he probably wouldn’t take me. He told me I should have came a few years earlier.

I am a 17 year liver transplant survivor. I was very blessed. My transplant was much easier then getting to the transplant. Very ill prior to transplant. Had been sick for 4 years prior to my transplant. No pain, but had high ammonia levels and went into short term comas many times before transplant. After transplant, was very weak. I really never got my strength back. However, I had no rejection problems. Have been able to be here for my 2 grandchildren and 4 great grandchildren, what a blessing. This last couple of years have been a bit tough. I have worked full time for the last 16 years. I developed Afib, ended up having an ablation, which went good. Was put on blood thinner (Eliquis, had a GI bleed. Lost 40 lbs over about a year and have hyperthyroidism. Started thyroid meds, which has shaken up my afib. Finally after 16 years on prograf, finally went to kidney doctor and found out I have 50% kidney function. I am now 63 years, I was blessed with many good years. With age I think you just start having more medical problems. I am hoping that I start gaining weight ( I weigh 88lbs now. But looking forward to improving with new meds. Just get a very good set of doctors, Gastro, kidney and Heart doctors to keep an eye on you. Don’t just trust a family doctor or an internist. Mine didn’t even want to refer me to a kidney doctor. Said nothing looked that bad and he probably wouldn’t take me. He told me I should have came a few years earlier.

I am a 17 year liver transplant survivor. I was very blessed. My transplant was much easier then getting to the transplant. Very ill prior to transplant. Had been sick for 4 years prior to my transplant. No pain, but had high ammonia levels and went into short term comas many times before transplant. After transplant, was very weak. I really never got my strength back. However, I had no rejection problems. Have been able to be here for my 2 grandchildren and 4 great grandchildren, what a blessing. This last couple of years have been a bit tough. I have worked full time for the last 16 years. I developed Afib, ended up having an ablation, which went good. Was put on blood thinner (Eliquis, had a GI bleed. Lost 40 lbs over about a year and have hyperthyroidism. Started thyroid meds, which has shaken up my afib. Finally after 16 years on prograf, finally went to kidney doctor and found out I have 50% kidney function. I am now 63 years, I was blessed with many good years. With age I think you just start having more medical problems. I am hoping that I start gaining weight ( I weigh 88lbs now. But looking forward to improving with new meds. Just get a very good set of doctors, Gastro, kidney and Heart doctors to keep an eye on you. Don’t just trust a family doctor or an internist. Mine didn’t even want to refer me to a kidney doctor. Said nothing looked that bad and he probably wouldn’t take me. He told me I should have came a few years earlier.

Hi @slslape56 I too welcome you to Connect. I am 3 years post-transplant (September 2016). Things have been great for me ever since also.
Age does definitely bring on many medical problems. I am now 72 and it seems as if multiple things are popping up. I agree, it's essential to have good doctors. I had my transplant at Mass General in Boston and I rely on them for virtually everything except my PCP due to distance -- I am about 55 miles from Boston and during the day it can take two hours to get there. I have lab work done every other month and when my creatinine was high my transplant doctor changed my immunosuppressant and told me to drink a lot of water, or other fluid -- 60 - 80 ounces a day. Originally they said 80 - 100 ounces but it's been so stable now for so long that I can cut back a bit. To what is the doctor attributing your decline in kidney function?
JK

I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.

Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.

So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.

Push on!

HI JK, I had my transplant at Lahey last August at age 70. I too have a long drive to the hospital for all of my appointments. I dread the traffic and driving after dark. And then there is the winter weather. I am about 98 miles away up in NH. I have had my immunosuppressant changed several times because of various issues. I am starting to feel great with plenty of energy. I am working on coping with the side effects of the drugs which make me a bit restless and uncomfortable. I never had blood pressure or kidney issues before transplant and so far, nothing is helping. I am careful with diet, exercise and take two different kinds of blood pressure meds. I am trying to stay on a low potassium diet which I find hard. I will see the kidney doctor and surgeon on Friday and will raise my concerns.

@mostlybill That's too bad that changing the immunosuppressants that you are taking didn't help as it did for me. Are you drinking a lot of water as I was advised to do? Those two things did it for me, thankfully.
I also did not have a blood pressure problem before transplant although I had a slightly elevated BP back around 2001. I have since read that it is not uncommon to have a BP problem after transplant, presumably from the immunosuppressants. Now that my kidneys are under control the worst problem is that the prednisone apparently caused a lot of bone thinning problems when I was on a high dose of it. Now I am on a very small dose.
Regarding the appointments, I always schedule mine in the late morning or early afternoon so I can get in and out of Boston in between the rush hours. At least you don't have Boston traffic to deal with going to Lahey. I may have mentioned, I did go to Lahey first but neither my husband nor I liked the doctor we saw so I chose to do my own research and find a different place. My PCP had suggested Lahey. They do have a nice facility there.
JK

JK, I know, Boston traffic is crazy, but the minute we hit the old 128 leg of 95 it is at a dead stop at certain times. It all backs up at the I-93 junction and the Lowell Connector. At peak traffic it can take close to an hour to move ten miles. Today my first appointment is at 10:00, so we are allowing three hours for an hour and forty minute drive. I hope we get out early enough--after 3:30, we get the traffic the other way.

I met a woman at a Christmas party the other night who had a heart transplant at Mass General. She always take the train in from Dover NH, Pretty smart. She loves Mass General.

I feel at home in Lahey after these past five or so years. I think the world of my surgeons and the transplant nurses. I will be seeing the Nephrologist today as well as the surgeon. I have been making an effort to drink water and limit potassium and salt, so I'll see what the blood work shows. I have my list of questions and intend to ask the kidney doctor about a referral to a nutritionist. There is some question whether this is covered by Medicare, but I think it is. Blood pressure is my biggest question for the kidney doctor. In spite of two BP meds each day, exercise and diet, it remains really high. I never had this issue pre-transplant. I'm almost at four months--at six months some of the meds get dropped. I am especially eager to get rid of Valcyte and prednisone, Both of these cause dizziness, Valcyte can also affect BP I believe. I live and learn and continue to endeavor to live my best life. Best wishes.