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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