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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 will have to see how I feel about that because right now that scares me. I'd be careful going to some of the Hawaiin islands as well - some are very isolated with not much in regards to hospitals (Oahu is probably safe but I would avoid the rest and they would be my preference).
@contentandwell - Thank you for answering my question about immunosuppressants being paid following a transplant. That puts me out of that benefit (just turned 50) but explains what I heard.
You might want to resend your comment to Dave Barnes because you spelled it incorrectly so he might not get notified and the information might be helpful to him (although I would hope the hospital would have told him these things).
@lcamino I like that idea, Lynn, a prayer of thanksgiving being part of the routine - sort of like spiritual exercise! Teresa
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1 Reaction@hopeful33250 - agreed but I can't take credit for the phrase - Rosemary started it.
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1 Reaction@lcamino and @contentandwell - I don't know if you are aware of the Transplant Pages section of Mayo Connect, where the transplant staff provides information about transplants. Here is the link if you are interested.
You will be able to access lots of good information about the living liver and living kidney donation.
https://connect.mayoclinic.org/page/transplant/
Rosemary
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3 Reactions@contentandwell, lcamino
I am going to try to answer several questions that you have asked. I too, was diagnosed early. And like you, Lynn, I knew what I had as well as what I might be facing. My disease was Primary Sclerosing Cholangitis (PSC). It is a progressive condition that affects the bile ducts and leads to cirrhosis and need for transplant. . Early, my only symptoms were occasional nausea, and extreme tiredness/fatigue. I had labs and appointments with GI every 3 months. He told me that he would notice the development of liver failure (cirrhosis) via labs before I would notice the complications. He told me that he would then refer me to the transplant clinic when the time was right. He also told me that signs I should watch for were dark urine, yellow skin and eyes, and that if I developed slurred speech or started to not make sense that I should go to the ER, and call him after I was on my way and he would meet me.
After referral to local transplant dept (50 minute drive) they began to tell us about the ammonia levels they ware watching. And always asked my husband if he had noticed any of the speech symptoms; they reinforced the importance of remaining alert. They also added to be on lookout for other symptoms that coincide with end stage liver disease (ESLD).
By the time I was critical and at Mayo, I think that I had already experienced almost every one of the symptoms associated with ESLD except for the HE that you experienced, Jane. One of the miracles of Mayo, is that they are able to individualize what a person needs, rather that 'go by the book'. They were able to get some of my bothersome symptoms under some control. On the lite side - Now, my husband says that I never made sense anyway, so it was hard for him to observe that part of it!
Fortunately, my doctors were always proactive, and also quick to act when things got crazy.
My doctors have always told me that we are all unique in the symptoms that we experience. And that this also applies to patients with the identical liver disease. I think that is why our labs are so important.
Rosemary
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3 Reactions@contentandwell, I want to share one piece of advice that you or your husband might need when you have your knee surgery. Some times the regular hospital staff is not familiar with the needs of a transplant patient - specifically - the need for strict adherence to medication schedule for immunosuppressant medicines. We once had a 'situation' and needed to call for supervising nurse, who consulted with my GI. I was given the meds!
Rosemary
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3 Reactions@rosemarya - Thanks for sharing. It is good for me to be reminded, and it does follow my family history, that not every person with PKD will have a disease that presents and progresses the same way. The research says this and it follows with those in my family who have the same diagnosis.
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1 ReactionNo, I am not on Medicare B as I am 52. No, Mayo didn't give me a plan. I just need to prove that I can pay for it. Thanks for the comment
@rosemarya It sounds as if even your local hospital, despite not doing transplants themselves, were very much on the ball. Unfortunately I did not find that at mine. I do know that after my diagnosis my PCP did some research to know more about cirrhosis, but as I said that was after diagnosis. The only thing that is an excuse for his not diagnosing me was that my ALT and AST were not elevated by much but they were still not when the hospitalist ordered an ammonia test.
I think it is very typical to not notice symptoms. As I have mentioned, my hepatologist in Boston said I probably had cirrhosis for about 10 years before any symptoms presented themselves, although my platelet count did start going down at what would have been right around the time when cirrhosis started. At first it was just slightly out of range but it continued to go down with every 6 month checkup.
I was away in Maine until today and our son and daughter were up there with us, with her fiance and his girlfriend. So many times when I looked at what I was doing -- cooking, cleaning, and everything else my mind went to last summer when I go to a point where I could barely do anything due to debilitating fatigue and then horrible ascites. I just felt so grateful to be enjoying life with my kids.
Life is good.
JK
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