Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@rowdyramsey

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!

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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!

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@jeanne5009

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!

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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❤️

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@rowdyramsey

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❤️

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@rowdyramsey
We all need each other…

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@gaylea1

@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.

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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.

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@slslape56

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.

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@slslape56, Welcome to Connect. I am approaching my 11th year with my liver and kidney transplant, and I thank you for sharing your experience. I think you might be 'just what the doctor ordered" for me because I am approching another birthday, soon (71). I also am blessed with many wonderful years and sometimes wonder how much my body will change with advancing age.
I completely agree that 'good' doctors are necessary when it is about our transplanted organs and our health. I am sad that your family doctor did not want to send you to a nephrologist. I am curious about your kidney. At 50% function, what is the nephrologist telling you about it? What can you do to keep the level from declining?

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@slslape56

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.

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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

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@slslape56

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.

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I am close to four months post transplant now and my major concern is my kidneys and blood pressure. I regularly see a kidney doctor as part of my liver transplant team, but all blood test results continuously show that my kidneys are under stress. I am looking into a consultation with a nutritionist to help with a more kidney friendly diet. Our main problem is the anti rejection meds that are toxic to our kidneys. Are you seeing doctors in a transplant hospital? I wish you the best in finding a good resolution to your current problems.

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@contentandwell

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

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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.

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@skipmarsliver

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!

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@skipmarsliver, I am thinking about you. This is the season of the year when my pre transplant health took a serious tumble, and I think it is making me quite sensitive emotionally these days. So I want to ask you, How did the 3 day screening and the education program work out for you? Will you become a patient at Duke, as you had hoped? What kind of followup labs and monitoring will you be doing?

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@mostlybill

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.

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@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

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@contentandwell

@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

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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.

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@mostlybill

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.

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@acid2come I hope the traffic wasn’t too horrendous today. We went to MGH last week for a 3:00 appointment. We left here at 12:45 and I barely made the appointment. My husband dropped me off on Cambridge Street and I walked the remaining short distance. He had to drive a bit further and park and got there a half hour later! The next day I had an appointment with my orthopedic surgeon in Chestnut Hill and faced the same thing and got there just in time. We can often make it to MGH in an hour so that was probably the worst ever. I do love MGH, they have been great there. I feel so fortunate to have such an incredible facility so close by. I’m sure lahey is good too. If not for that doctor who was like a Nazi I might have had my transplant there.

I’ve never heard of Valcyte but I’m still on a small dose of prednisone and it’s been more than three years. I think I will be starting a BP medicine soon. I needed a cholesterol one too and the doctor thought that was more important and didn’t want me starting two new meds at the same time.
JK

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@contentandwell

@acid2come I hope the traffic wasn’t too horrendous today. We went to MGH last week for a 3:00 appointment. We left here at 12:45 and I barely made the appointment. My husband dropped me off on Cambridge Street and I walked the remaining short distance. He had to drive a bit further and park and got there a half hour later! The next day I had an appointment with my orthopedic surgeon in Chestnut Hill and faced the same thing and got there just in time. We can often make it to MGH in an hour so that was probably the worst ever. I do love MGH, they have been great there. I feel so fortunate to have such an incredible facility so close by. I’m sure lahey is good too. If not for that doctor who was like a Nazi I might have had my transplant there.

I’ve never heard of Valcyte but I’m still on a small dose of prednisone and it’s been more than three years. I think I will be starting a BP medicine soon. I needed a cholesterol one too and the doctor thought that was more important and didn’t want me starting two new meds at the same time.
JK

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Traffic was a breeze until the I-93 junction, but only held us back by about 10 minutes. So I was about a half hour early, which is good. I always have my Lahey survival kit–my backpack stocked with notebook and my list of questions, tablet, charger and lunch. All was well with the kidney doctor. He took my blood pressure manually, rather than one of the automatic machines like I use at home and said my blood pressure was normal. So my home BP machine is most likely inaccurate. Yeah–so no additional BP medicine. My kidneys numbers were good–potassium slightly high, so I had a brief consult with the nutritionist. My surgeon told my my liver is doing great and I don't need to come back for two months. She even told me I looked younger. I love her sense of humor. At four months I think I am finally becoming myself again, feeling a great sense of energy and optimism. There is still work ahead to build physical strength, but that is the easy part compared to the stress of the first weeks and months of recovery. I can't wait for the six month mark when I ill get rid of one or two drugs.

I heard another patient who left Lahey for MGH say they didn't feel like a good fit with a certain doctor. I will say I saw her (if it's who I think) for several years before transplant and attribute my survival to her. She encouraged me to lose weight and always spent the time to answer all of my questions. I think the diet and exercise she encouraged helped me through the surgery and recovery. My cancer was detected and treated in the very early stages, thanks to her care. But I did have doctors over the years of surviving liver disease that were not a good fit, and had to leave behind. Trust in our relationships with our care providers is so important to our outlook. I always hear great feedback about MGH. I have several friends who are transplant patients there.

Valcyte is an anti-viral medication. I need it because my donor liver is CMV (Cytomegalovirus) positive and I am CMV negative. So I face the possibility of infection with this virus at some point. Best wishes, Bill

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@gaylea1

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.

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Hi there.
I'm located in Toronto. Had a liver transplant 4 months ago at Toronto general hospital part of the UHN. Is that where you are being looked after? I have plenty of great feedback.

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Hi all,
I am 35 year old female, 4 months post transplant. I am very lucky in that everything is going very well, no complications, little side effects, taken off Prednisone after 3 months and my other meds are in low doses.
Other than hair loss and acne (both of which are improving) my greatest concern is joint pain and stiffness. Bone density is normal. RA negative. Never had this problem before and it's getting worse. After sitting for 15 minutes I feel like a cripple trying to stand up. Getting out of bed in the morning is the worst?
Anyone else have a similar experience?

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