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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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@rosemarya My transplant team knew I wanted to get a TKR but when they found out it would be at Brigham and Women's which is a "Partner" hospital they were greatly relieved because the two hospitals do have a lot of cooperation with each other.
Of course MGH is a large transplant center but I am curious about what is the smallest in the country, and wonder how well they handle all of this. You are right Rosemary that it is very finely tuned. Gotta love those people. I sure wish the doctors up here cared about their patients half as much. My husband laughs about me and says he would hate to have me for a patient and I admit, I am picky and I think everyone should be. It's your health and your life. My husband has not had a physical since 2003. At that one his PCP suggested he see a urologist because he suspected prostrate cancer. He was right, he did have cancer so we trotted off to Boston for that, our first real experience with MGH. Interestingly, the urologist up here said to us, "of course you are going to Boston for a second opinion".
JK
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1 Reaction@lcamino, they absolutely do travel internationally. The told me not to travel internationally for a year but then it's OK. I think they might frown on third world countries and I myself would have concerns about going to the Caribbean again. Most European countries have excellent health care though. If we do want to return to the Caribbean at some point in time I will definitely check what type of medical care that place has, but I would want to be air-lifted back to the "good ole USA". You can get insurance for that.
JK
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1 Reaction@lcamino How wonderful to have volunteers to be a living donor. Is the recuperation for the donor as long (about a month I think) as it is for liver donors? When I was in the hospital the woman I shared my room with was there because she had been her husband's donor. She seemed to be a lot better than I was at that time. On my first post-transplant visit who did I run into, there for an appointment? Her of course. We had the same surgeon. He is head of the kidney transplant unit at MGH. He is really an impressive doctor despite not acting arrogant or anything like that at all. Ahhh, if only he and my daughter were both "available". 😉
JK
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2 Reactions@contentandwell - I would take the Friday the 13th surgery date too. Maybe the hospital will be less crowded ; -)
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2 Reactions@lcamino, I think my celebration routine comes from my past experience as a special education teacher. I learned early on the benefits of positive reinforcement. All celebrations do not need to involve food, though:-)
My own best part of any celebration is a prayer of thanksgiving for my restored health.
Rosemary
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2 Reactions@contentandwell
Happy to hear creatinine is moving in right direction:-)
Rosemary
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2 Reactions@lcamino Lynn, I am getting the knee done that has not been done. Hopefully eventually I will be able to have a revision on the first one.
I agree with your husband regarding being confident of your doctor. I was very confident of the one who did the first knee though until time went on and on and it still hurt and I could not bend it well.
Thanks about my daughter, I think her happiness makes her glow really, which is wonderful to see. I am biting my tongue a lot these days about this wedding, primarily because it will be huge and she always wanted something very small and intimate. Frankly, if she dresses like an Indian bride it will break my heart. To me it will be like she is turning her back on her own culture and upbringing. I never dreamed her fiance would be so dominant in this. I really like him but this is tough.
JK
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2 Reactions@lcamino Lynn, for me the HE episodes were the worst part of cirrhosis since I felt well most of the time. To know you are sort of crazy though is really frightening. Even now when I think of it I get tears in my eyes. Although not frequent, when I had them they were bad. Maybe I was having them more frequently but managed to compensate, I don't know, but they put me in the hospital about four times. The first time I was basically acting catatonic. My husband called our friend who is a doctor and he came over and immediately said I needed to go to the hospital. At that point we did not yet know the cause. The more I learned I came to realize that when bad they can put you in a coma, which I think I may have been close to when I hear what I was like. If an episode is really, really bad it can actually kill you.
JK
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2 Reactions@lcamino, they coordinate with Quest Labs which I think is national. There are none close to where we are going in Maine (there isn't much in Maine but we are only about an hour from Portland so I am surprised there are not any there). I would imagine if there was one they could have me go there. Hopefully I will go back to monthly on the labs though. Here, I go to the next town, do the labs and they send them "stat" to Boston immediately by courier! Quest labs there analyze and put the results on the MGH website.
JK
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2 Reactions@lcamino, yes apparently tacrolimus (prograf) can do that. They are changing my meds, decreasing the Tac, and substituting sirolimus. Right now there is a bit of a mixup on getting it up here and unfortunately the CVS Specialty Pharmacy is not open on the weekend. Your typical local drugstore does not carry immunosurpressants unless they have a patient on them, in which case they will do it for that, or at least my local Walgreens will. They fill mine in Boston and UPS it up here. Originally they shipped it to my home but I got them to change that to ship it to the local CVS so I wouldn't have to wait in, because it has to be signed for.
They had me do lab again this morning and my creatinine was down to 178 - not good but better. I am wondering if they will still want to make the change. I will probably have to change again before my knee surgery because this sirolimus can delay healing.
What do they say about your creatinine? I presume that is typical when your kidneys are your problem. At what point do people generally have to go for dialysis?
JK
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2 Reactions