This and That and Talk - My Transplant

@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

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??

@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

@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

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.

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.

@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.

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.

@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.

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.