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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

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?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Oct 27, 2018
In reply to @rosemarya "Ginger, Yes, he is fully aware of my circumstances. That is why he squeezes me in..." + (show)
@rosemarya

Ginger, Yes, he is fully aware of my circumstances. That is why he squeezes me in whenever I need it and he usually suggests a time when the office is clearing out so that I don't have to sit with other patients when the flu is rampant here. He also knows me well enough that if I have a symptom that concerns me, he knows it is real and that I am not exaggerating. He will also call me and speak to me if needed..
He knows and understands that my primary transplant care is with the Mayo physicians. The way it works is that I have my annual liver/kidney checkup at Mayo, and they will send him all of the records so he knows what is going on, and he monitors my general health. I am fortunate to have an uncomplicated health history.

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@rosemarya that's the same as with me. My PCP gets everything, even my monthly lab work that MGH has me go for. He's sort of nosy I think sometimes. 😉
JK

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1 reply
JK | @contentandwell | Oct 27, 2018
In reply to @gaylea1 "@rosemarya I tried that medicine for my severe itching and unfortunately it made me very nauseas..." + (show)
@gaylea1

@rosemarya I tried that medicine for my severe itching and unfortunately it made me very nauseas and sick. I still ha vent found anything that works. I do find that when the edema is bad I itch more so the diuretics help somewhat.

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@gaylea when I had edema I itched also, I think it's simply from the stretching of our skin so any emollient lotion will help with that, or at least it did with me.
JK

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2 replies
jolinda | @jolinda | Oct 27, 2018
In reply to @rosemarya "I think it must be a mutual respect for each other in doing their job well...." + (show)
@rosemarya

I think it must be a mutual respect for each other in doing their job well.

I had a frightening experience 13 months after my transplant, I don't think I have ever shared this here before, because it didn't come up anywhere.

One month after my successful 1st year checkup, I developed a terrible vomiting, diarrhea, overnight. I assumed that I ate something or had picked up something related to yard work the previous day, even though I wore gloves. As 8:00 AM approached I knew that I would not be able to take my medicines. My temperature began to rise quickly, and I began uncontrollable shaking, PCP sent me ER. I had developed sepsis. My GI was in communication with Mayo. After 2 nights locally, I was taken to the transplant center to receive next level care. The interesting thing was this: The transplant team at the Univ Louisville was also in contact with Mayo and was following their directions for my care. The Physician at Univ of Louisville, where I had been sent, told me that he would only operate on me if it was completely necessary (emergency or life/death). I think it was 5 days later, I was able to travel, my husband drove us to Rochester Mayo where they discovered that I need a surgical procedure. I found it comforting that my own transplant team took that kind of one-on-one approach, even at 750 miles away.
The physicians proved to me how well they can all work in a coordinated fashion when necessary.

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This is such a scary situation! I am so glad you are ok now.

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1 reply
jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @rosemarya "I think it must be a mutual respect for each other in doing their job well...." + (show)
@rosemarya

I think it must be a mutual respect for each other in doing their job well.

I had a frightening experience 13 months after my transplant, I don't think I have ever shared this here before, because it didn't come up anywhere.

One month after my successful 1st year checkup, I developed a terrible vomiting, diarrhea, overnight. I assumed that I ate something or had picked up something related to yard work the previous day, even though I wore gloves. As 8:00 AM approached I knew that I would not be able to take my medicines. My temperature began to rise quickly, and I began uncontrollable shaking, PCP sent me ER. I had developed sepsis. My GI was in communication with Mayo. After 2 nights locally, I was taken to the transplant center to receive next level care. The interesting thing was this: The transplant team at the Univ Louisville was also in contact with Mayo and was following their directions for my care. The Physician at Univ of Louisville, where I had been sent, told me that he would only operate on me if it was completely necessary (emergency or life/death). I think it was 5 days later, I was able to travel, my husband drove us to Rochester Mayo where they discovered that I need a surgical procedure. I found it comforting that my own transplant team took that kind of one-on-one approach, even at 750 miles away.
The physicians proved to me how well they can all work in a coordinated fashion when necessary.

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@rosemarya
YOU ARE a never ending source of knowledge. What did they operate on and was it due to the sepsis? SEPSIS is very dangerous for transplant patients...or anyone for that matter. I have instructed my PCP to forward all my records to Mayo and to get me to Tampa...the closest transplant center ASAP if it's serious. Mayo is 4 hrs away or I would go there.
HOW long did it take to recover from that little side show? Lol
I go to my hepatologist Tuesday so I will get a 6 month update then.

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1 reply
jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @contentandwell "@gaylea when I had edema I itched also, I think it's simply from the stretching of..." + (show)
@contentandwell

@gaylea when I had edema I itched also, I think it's simply from the stretching of our skin so any emollient lotion will help with that, or at least it did with me.
JK

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Ok itchy people...my scalp and lower back and butt are driving me crazy...Dr finally put me on prednisone. Soon as it was done the little bumps and intense itch came back. Benadryl helps a little. I'm about to go to a dermatologist but want to make sure it's not liver related. Mostly fires up at night...anyone have a clue??

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 28, 2018
In reply to @contentandwell "@rosemarya that's the same as with me. My PCP gets everything, even my monthly lab work..." + (show)
@contentandwell

@rosemarya that's the same as with me. My PCP gets everything, even my monthly lab work that MGH has me go for. He's sort of nosy I think sometimes. 😉
JK

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@contentandwell My PCP is in this city, my two critical specialists are 100 miles away in the city I just moved from. I gave my new PCP over 100 pages of lab results from the lat two years. He is happy to have a complete background for me. And my two specialts review each other's lab results, too (they are not in the same practice).
Ginger

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1 reply
gaylea1 | @gaylea1 | Oct 28, 2018
In reply to @jeanne5009 "Ok itchy people...my scalp and lower back and butt are driving me crazy...Dr finally put me..." + (show)
@jeanne5009

Ok itchy people...my scalp and lower back and butt are driving me crazy...Dr finally put me on prednisone. Soon as it was done the little bumps and intense itch came back. Benadryl helps a little. I'm about to go to a dermatologist but want to make sure it's not liver related. Mostly fires up at night...anyone have a clue??

Jump to this post

@jeanne5009 yes the edema definitely affects my itching and I am pre transplant. I also have all those tiny white bumps all over my feet, arms and legs. It does occur mostly at night. I have tried, benadryl and lotions and a certain medication but nothing seems to work.

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3 replies
gaylea1 | @gaylea1 | Oct 28, 2018
In reply to @contentandwell "@gaylea when I had edema I itched also, I think it's simply from the stretching of..." + (show)
@contentandwell

@gaylea when I had edema I itched also, I think it's simply from the stretching of our skin so any emollient lotion will help with that, or at least it did with me.
JK

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@contentandwell ..yes I have tried various lotions and creams but just end up scratching most of it off.

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1 reply
JK | @contentandwell | Oct 28, 2018
In reply to @gingerw "@contentandwell My PCP is in this city, my two critical specialists are 100 miles away in..." + (show)
@gingerw

@contentandwell My PCP is in this city, my two critical specialists are 100 miles away in the city I just moved from. I gave my new PCP over 100 pages of lab results from the lat two years. He is happy to have a complete background for me. And my two specialts review each other's lab results, too (they are not in the same practice).
Ginger

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@gingerw sounds similar to me, at this point all of my specialists are in Boston, about 55 miles away, and my PCP is here in NH. Everyone sees everything. I really like that they are all familiar with my history, it gives me more confidence that they will not recommend something that would be wrong for me.
I still think my PCP is a bit nosy though. I bring my IPad to visits and if I am looking at something he tries to see what it is before I close it up! I bring my IPad because I will NOT read magazines in doctor's offices, who knows what germs may lurk on them. My PCP agrees that it's a good idea to not be handling them.
Speaking of which, do you know that one of the germiest things is menus in restaurants? Think of how many people have handled them. It's a good idea to have some hand sanitizer with you to use after ordering.
JK

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1 reply
JK | @contentandwell | Oct 28, 2018
In reply to @gaylea1 "@contentandwell ..yes I have tried various lotions and creams but just end up scratching most of..." + (show)
@gaylea1

@contentandwell ..yes I have tried various lotions and creams but just end up scratching most of it off.

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@gaylea1 If lotions and creams don't help it is probably because the cause is more internal. I'm sorry you can't find any relief, I can imagine how annoying constant itching must be.
JK

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