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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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@contentandwell, I'm sure that this was quite frightening for you and your family to go thru. In my case, my PCP noticed that my liver enzymes were elevated. And he referred me on to GI who consulted with a liver specialist to get my diagnosis for liver disease. So for around 7 years, I was closely monitored for any signs of progression to cirrhosis. And then, it hit me with a vengeance (Fall '08) and I was referred to Transplant dept at University of Kentucky. I guess that my ammonia levels were monitored because of the liver diagnosis. I received excellent care at UK, but when complications inside my bile ducts and inability to get a firm diagnosis about possibility of cancer in bile ducts, I needed to be removed (Jan '09) from transplant list until I was seen at Mayo. Unfortunately for me it was during that interval that my kidneys quit and things spiraled downhill very quickly. I was flown out of ICU to Mayo (late Feb.09)......and here I am today:-)
Isn't it a blessing that we are here today!
Rosemary
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2 Reactions@davidgenebarnes Prayers from Michigan as well! Teresa
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1 Reaction@contentandwell Your story is really a good one, JK. It helps to educate us all in continuing to look for answers even when they don't seem to be readily or easily available. Your symptoms were so varied that I can see how the real reason could have been overlooked or even misdiagnosed. I'm so happy for you that your story had a good ending.
If you could give one piece of advice to someone who is searching for answers, what would that be?
Teresa
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2 Reactions@rosemarya I thankfully had no avoidable complications from my cirrhosis, just those miserable but typical effects -- fatigue, low platelets, low iron, HE, but I sure wish when they they couldn't diagnose me for so long up here that I had gone to Boston then. I am confident they would have figured it out. I guess the outcome would not have been much different but going a year and a half not knowing was really frightening. The only thing they zeroed in on was the confusion-delirium and thought there was a brain problem, like some type of post migraine damage,seizures, and of course the PCP I had been going to before I dropped her, thought it was Alzheimer's. No one connected the dots until I ended up in the hospital and the hospitalist sent for an ammonia test.
JK
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1 Reaction@davidgenebarnes, You are in a good place to receive a diagnosis and treatment. One of the realities that many of us experience is that visits to the ER become a routine. I am sorry for this unplanned visit for you; I am happy that you are getting checked out.
I sometimes wonder if I had been treated by Mayo when I was first listed for a liver transplant, that maybe some of my complications could have been avoided. I try not to dwell on that, though.
Prayers do work. I'm sending more.
Rosemary
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1 ReactionThank you. In ER about to get CT scan for paracentis I hope
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2 Reactions@davebarnes, I'm sending prayers from Kentucky. Rosemary
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2 Reactions@davebarnes I am trusting that you will get some relief at the ER. As you feel comfortable doing so, keep us posted. Teresa
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1 ReactionThank you for your kind words. I am headed to Mayo ER for what I am sure will be a paracentesis. Have a great day
@rosemarya I did not lose weight because of my condition but due to hard work to lose it! Then when the ascites and edema started I really ballooned up.
We went to Italy in the spring of 2014 and my feet got HUGE. I couldn't wear any of the shoes I had brought with me, especially after a number of days and had to purchase cheap beach sandals to wear around. Fortunately at that point we were at a resort town in Sicily so those worked out OK and we only did walking when we went to town. My doctor knew of that problem but was perplexed by it even though my feet and lower legs continued to be obviously retaining fluid. At that point I had not been diagnosed as having cirrhosis so I guess it would be a tough thing to know though.
JK
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