Liver transplant - Let's support each other

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 @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 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.

@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.

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❤️

Make that list!!! Take your husband and review the questions with him beforehand. His input is important too! As soon as your appt is finished, sit down and go over the list and the answers with your husband.
Get your bloodwork done whenever YOU want. Build a relationship with your PCP and share your concerns. Those blood test results help your peace of mind and give you quick info on any changes. Your PCP can then share with your liver specialists.
You are in charge of YOUR life!
If you have opportunity....go to Hopkins!!
Good luck!

Thank you so much for responding. I will be taking my husband of 20 yrs with me to the docs. I also need to write it down like you suggested . I will keep posting for advise and fellowship. The fellowship is crucial! Thanks to all who contribute!

@rowdyramsey You have come up with some great things to ask. May I suggest you write all this down, don't rely on your memory! I know for me, I get wrapped up in the appt and then forget to address something, or don't hear what dr is saying. And write down their answers to you. Be sure you can take someone with you so it will help you get all the information exchanged. Can you handle something like Ensure products, that will give you some nutrition? We will be waiting to hear how it goes for you next week.
Ginger