1. < Transplants

18 months post-transplant kidney + liver

Posted by merlinway @merlinway, Nov 17 2:59am

No specific question. Just sharing a few notes. Eighteen months since a double-transplant of liver & kidney. Blood tests have been stable for more than a year. Liver tests are good, kidney not as much. Creatinine range of 1.6 to 2.0, eGFR range of 40 to 55. Tac at 10 mg diem, Myco at 2 g diem. BUN is always high no matter how much fluid I drink. RBC & WBC always low. C-diff a problem early on. Finger and toe 'twitching' on-going mild problem. Physical energy is good enough for age 46.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 24 7:50pm

Welcome, @merlinway. I'm not sure how your intro post slipped through the cracks. Congrats on the new liver and kidney. I'm inviting @rosemarya @gratefulbob @cheitmansd @lvowell @benlam11 @firecat into this discussion as they too have experience with double transplant, liver and kidney.

May I ask what led to your needing a transplant? Has the c-difficile been resolved? What has the transplant team recommended to help encourage the new kidney?

REPLY
1 reply
firecat | @firecat | Nov 24 11:25pm
In reply to @colleenyoung "Welcome, @merlinway. I'm not sure how your intro post slipped through the cracks. Congrats on the..." + (show)
@colleenyoung

Welcome, @merlinway. I'm not sure how your intro post slipped through the cracks. Congrats on the new liver and kidney. I'm inviting @rosemarya @gratefulbob @cheitmansd @lvowell @benlam11 @firecat into this discussion as they too have experience with double transplant, liver and kidney.

May I ask what led to your needing a transplant? Has the c-difficile been resolved? What has the transplant team recommended to help encourage the new kidney?

Jump to this post

My liver failed because of Alcoholic cirrhosis. My liver took my kidneys with it. On Monday and Saturday I had parasenthesis, average of 12 liters per week, as I no longer urinated through my penis. On Tuesday, Thursday and Saturday I had dialysis. This was my life before transplant. The cardiac catherization dye killed my native kidneys. It was a blessing in disguise as my meld score shot up and soon thereafter got my blessed call from transplant. My first call I was called to be a standby recipient. A day and a half later I was sent home. What an emotional roller coaster that was. But they assured me that the next call would be mine for sure. About a week later it happened. One of God's angels wearing a nurses uniform called me and said it was my turn. This was February 2021 in the heart of Covid. My wife was not allowed in the hospital. At the hospital entrance I embraced her, gave her a kiss, looked deeply into her eyes and said that I would see her later, either here or in heaven. Walked myself into the hospital for surgery. The surgical team called her with updates on how it was going every 2 hours. 13 1/2 hours and 10 unites of blood later, I started my new life with 2 people now living in my body. I thank the donor daily in my prayers. I received a lazy kidney that didn't start to work for a week and a half so I was back on dialysis. It eventually slowly woke but worked only well enough to keep me off dialysis, but didn't satisfy the doctors. So they started all over again to get me back on the list for another kidney. UNOS classified me as a priority patient and I was blessed with a second transplant in November. An Angel somewhere was watching over me? My liver worked wonderfully from day one. This was all 3 and 3 1/2 years ago. Doing just fine now, thank you. I hope I didn't go into to much detail for you all. But that is my story.
FireCat!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @firecat "My liver failed because of Alcoholic cirrhosis. My liver took my kidneys with it. On Monday..." + (show)
@firecat

My liver failed because of Alcoholic cirrhosis. My liver took my kidneys with it. On Monday and Saturday I had parasenthesis, average of 12 liters per week, as I no longer urinated through my penis. On Tuesday, Thursday and Saturday I had dialysis. This was my life before transplant. The cardiac catherization dye killed my native kidneys. It was a blessing in disguise as my meld score shot up and soon thereafter got my blessed call from transplant. My first call I was called to be a standby recipient. A day and a half later I was sent home. What an emotional roller coaster that was. But they assured me that the next call would be mine for sure. About a week later it happened. One of God's angels wearing a nurses uniform called me and said it was my turn. This was February 2021 in the heart of Covid. My wife was not allowed in the hospital. At the hospital entrance I embraced her, gave her a kiss, looked deeply into her eyes and said that I would see her later, either here or in heaven. Walked myself into the hospital for surgery. The surgical team called her with updates on how it was going every 2 hours. 13 1/2 hours and 10 unites of blood later, I started my new life with 2 people now living in my body. I thank the donor daily in my prayers. I received a lazy kidney that didn't start to work for a week and a half so I was back on dialysis. It eventually slowly woke but worked only well enough to keep me off dialysis, but didn't satisfy the doctors. So they started all over again to get me back on the list for another kidney. UNOS classified me as a priority patient and I was blessed with a second transplant in November. An Angel somewhere was watching over me? My liver worked wonderfully from day one. This was all 3 and 3 1/2 years ago. Doing just fine now, thank you. I hope I didn't go into to much detail for you all. But that is my story.
FireCat!

Jump to this post

Thank you, @firecat. Always illuminating to hear the journey story of others. I'm confident @merlinway appreciated reading it.

@merlinway, how are you doing? Any update?

REPLY
1 reply
firecat | @firecat | 1 day ago
In reply to @colleenyoung "Thank you, @firecat. Always illuminating to hear the journey story of others. I'm confident @merlinway appreciated..." + (show)
@colleenyoung

Thank you, @firecat. Always illuminating to hear the journey story of others. I'm confident @merlinway appreciated reading it.

@merlinway, how are you doing? Any update?

Jump to this post

It's all a journey in our second chance at life to respect, give thanks for, and cherish our new organs and those who chose during their lives to become donors that we may live on with them along for our journey till the end.
I talk to my two donors regularly.
Peace to you all.
FireCat🤗

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