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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 Thank you. I will be having this surgery closer to home and by the first surgeon that saw me. I have no idea how or if my transplant will affect my recovery. At this point my main concern is protecting my failing kidneys and maintaining the transplant already in place should not be an issue. If it does become an issue, we will have to deal with it then, right? lol I am relieved to be closer to home following this surgery. May continuing concern is for my husband. He is a trooper, but these things wear on him.
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2 Reactions@2011panc, Prayers for your husband, too.
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1 Reaction@contentandwell, I do not use pools or hot tubs. I suspect that the immunosuppression has some effect on it - or maybe it is my alertness to any physical change from what I consider to be normal for me.
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1 Reaction@2011panc, We observed similar UTI / cognition issues with my mother-in-law. Nursing home noticed the unusual behavior, and after treatment, she improved.
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1 Reaction@rose999, Good for you - The online app is great! If you need further tests, I can assure you that you will be scheduled for them. There is a lot of 'behind the scene' communication between the departments at Mayo, so even if you are not scheduled in a particular department, I feel very confident to say that it can be addressed. If you are ever in doubt about a particular concern, be sure to discuss it with the doctor, NP, PA who will be seeing you.
I like your attitude - you say that you are excited about the upcoming visit:-)
I do not know what a study visit is. That is a term that I am unfamiliar with. Maybe you can let me know after you return home!
Rosemary
@2011panc prayers are with you as you head for your back surgery. I am surprised that your insurance refused coverage and glad that you have found a way to get it done by changing insurance companies. May I ask where you from, the locale where you are having your back surgery done? I always find it interesting to hear where we all are from. As I have mentioned on a number of posts, I live in southern NH, about 55 miles from Boston, and Boston is where I go for anything off any consequence. I feel so fortunate to have such wonderful medical facilities within an hour or two away -- an hour with no traffic, two hours mid-day.
I had a knee replacement in October, which of course is different from back surgery, but my being a transplant recipient did not seem to effect that at all. The only effect I believe was that I could not take NSAIDs so I had to go from narcotics to a limited amount of tylenol, which I do not find very effective. The hospital I used for the knee, Brigham and Women's, is a partner hospital with Mass General so there was an easy communication between them and they are on the same portal.
Let us know as soon as you are able how the surgery goes and how you are feeling, we will be thinking of you.
JK
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2 Reactions@rosemarya if a hot tub is well maintained there should not be a problem. At my club they test the water about every two hours but of course things can happen between testings and if there is any bacteria present, being on immunosuppressants will impede your defenses from rejecting them. I would never use one at a hotel now, but as I mentioned, if I see that the hot tub is vacant for a long time while I am in the pool I do occasionally take a dip, it is so relaxing and after the colder water of the pool the hot water in the tub feels good. Most of the time I just get warm in the sauna though.
JK
@rosemarya Although my doctors did consider that to be a possibility they felt that I was too young for that to be the probable cause. Anything is possible though.
JK
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1 Reaction@rose999 and @rosemarya,
A study visit is typically an appointment where you meet with a study coordinator, and they let you know which clinical trials are open for participation for you. You can choose to participate or not, it's completely up to you. They will give you all of the information for each trial so you can decide if it's something you wish to join. You can also ask questions about clinical trials you have seen elsewhere, and they may be able to give you input on those as well.
Thanks!
-Kristin
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2 ReactionsThanks JK for guidance about MELD and registration. Will do what needs to be done.
We don't want to rush into it and hoping that there is non-invasive cure for PH1 (Primary Hyperoxaluria, Type 1). Maybe being expecting some miracle.
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