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.

@contentandwell

@jodeej that's interesting that his nails seem stronger. I would think the two go hand-in-hand. My nails have always been weak though, not just after my transplant.
It seems that biotin has been recommended to many of us so more than likely they will say yes. I do always ask though. Sometimes I think the NP gets annoyed that I ask things like that, but too bad. From what I have read in her background info she is quite bright but to me she is the weak link in my transplant care, and everything goes through her.
JK

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I am glad that you are a determined self-advocate. This is an excellent reminder to all of us, because I feel that we are all bound to run into our own barriers along the way.

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@contentandwell

@rosemarya My PCP also has a "hands off" approach to anything that involves my transplant, and my transplant team has that same philosophy when it comes to anything that is not transplant related. I think they don't want to step on the toes of the PCPs perhaps.
JK

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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

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 How frightening! Thank God all went well. Sepsis can be so serious. I had a friend pass away from it last year. She was a long distance friend so I have no idea what caused it.
JK

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@contentandwell

@rosemarya My PCP also has a "hands off" approach to anything that involves my transplant, and my transplant team has that same philosophy when it comes to anything that is not transplant related. I think they don't want to step on the toes of the PCPs perhaps.
JK

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@contentandwell I, for one, want my team of Dr's talking to each other! If the nephrologist I have now hadn't pointed out what the fired one and my primary ignored, my MGUS wouldn't have been found. Just, wow.

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@sholman459

My wife received a liver in Jan. of this year. Since then she has had to have stints put in to expand her bile duct. She is itching from head to toe and it's driving her insane(me also!). She takes frequent baths daily with baking soda and takes benadreyl which don't seem to help. Do others suffer from this and if so is there any relief for this? HELP!!

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@sholman459, Has your wife tried Sarna Lotion? It is for itching and it is the one that worked best for me. I used to find it near the pharmacy counter, but that was at a small local pharmacy. I have seen it in the lotion section of stores like CVS, Kroger, Walmart. If you have time tonight, you might go out and buy a squeeze bottle, or maybe 2.
I hope she can get some relief.

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@gingerw

@rosemarya As well he should work you into his schedule right away. Thankfully, even tho he won't answer your transplant concerns, he understands your system is compromised. I'll be forever grateful to my nephrologist who took the extra steps to help me.
Ginger

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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

@sholman459, Welcome to Connect. I am happy to meet you.

Prior to my transplant for PSC (Primary Sclerosing Cholangitis) a disease that affected to bile ducts, I suffered with severe itching for a period of time. If my memory serves me correctly, my itching was a response to bile in my system. I was not yet a patient at a transplant patient. My local GI prescribed a RX named Cholestyramine that offered some relief. Since you have mentioned that your wife has had stints inserted in her bile ducts, I wonder if this is something that is worth asking about.

Have you discussed this with her transplant doctor? Is this an ongoing problem? or Has it just recently started?

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@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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@sholman459

My wife received a liver in Jan. of this year. Since then she has had to have stints put in to expand her bile duct. She is itching from head to toe and it's driving her insane(me also!). She takes frequent baths daily with baking soda and takes benadreyl which don't seem to help. Do others suffer from this and if so is there any relief for this? HELP!!

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@sholman459 I am pre-transplant and suffer from very bad itching. I've tried everything possible but nothing gives me relief. My legs, arms, feet, chest and back are raw from scrat ting at times. Really affects trying to sleep. Not something you want hear but I just have to ride it out. I hope your wife finds something that will help her.

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@rosemarya

I am glad that you are a determined self-advocate. This is an excellent reminder to all of us, because I feel that we are all bound to run into our own barriers along the way.

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@rosemarya she seems like a lovely person, but I feel an annoyance from her at times. Heck, I just want to be 100% sure that I am doing what is the right thing. I think her qualifications are top-shelf but that she may not have had experience with post-transplant patients before. She's learning though, and as time goes on hopefully she will be more knowledgeable and more patient.
JK

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@rosemarya

@sholman459, Has your wife tried Sarna Lotion? It is for itching and it is the one that worked best for me. I used to find it near the pharmacy counter, but that was at a small local pharmacy. I have seen it in the lotion section of stores like CVS, Kroger, Walmart. If you have time tonight, you might go out and buy a squeeze bottle, or maybe 2.
I hope she can get some relief.

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@rosemarya @sholman459 I too have used Sarna and it did help a lot. Oddly, when we first moved to this house I was itchy all of the time! I think something in the water (we have well water around here) must have bothered my skin but my skin adjusted to it over time. A doctor recommended it.
JK

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