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Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I’m struggling with weather dialysis is better or a transplant. I know any surgey has risks.
I could have used this kind of help when I had my transplant, if I am able to help one person I can say “I did what I am suppose to do.” Having come from a ‘determined’ family helped. (My grandmother raised 5 children by herself and they all graduated from high school during the depression.) Not having to cook for anyone else makes following my diet easy. (When my father found out he was on the edge of Type 2 Diabetes my mother said she was only going to cook one dinner, the one for my father. Everyone was happy my mother lost weight, my little brother lost weight, and my father never had to take pills or injections to keep his diabetes under control.)
I cannot believe being on dialysis only 9 weeks, you missed all the fun of meeting new people. Most were diabetic, or refused to follow the doctors orders and lost both legs, or gained over 200 pound after their first transplant which killed that kidney then had to go back on dialysis, there was one who had 3 kidney transplants and killed them all. By the way, these were all men, I do not if that says anything.
As far as how am I doing, the kidney is happy consider what I have put in through. When I see a new doctor I always tell them “The kidney comes first.”
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@mlmcg, You have quite an amazing story. And you are being generous to share it. It shows how different we all are, and how many different methods and treatment can be provided for each one of us. You must have had a good doctor to take care of you.
That is really interesting that you got the call right after you received a 90 day refill of your meds. That had to have been a complete surprise! The “call” is really a special moment, isn’t it?
Here is information about Cytomegalovirus (CMV) if anyone needs it.
I had been on the transplant list for 6 years when I received "the call" that a kidney, a good match, was calling my name. When I received that call, on my cell phone, I was on the house phone talking with the person who had the list of those who were willing to be available from midnight to midnight to drive me to the hospital. I put my cell phone on speaker so both of us could hear what I had to do.
I have had the same doctor for almost 20 years and any patient who is willing to take care of them self he will be there for them 24-7. When I am in the hospital he will stop in to see how I was doing, even when he is not my admitting doctor.
When I needed to "talk" with others going through or have been through the "joys" of a transplant, there were none. I do not want anyone to go through it alone. Doctors and nurses who have not had a transplant can only tell you what others have told them or what they have read. I am willing to share what I have experienced.
@mlmcg – I am anxiously waiting for someone else to join this conversation. Your story is remarkable.
I was really interested in your details about your Call. That explains another instance of how individualized the entire transplant process is!
By the time I got my Call, I was at Mayo Clinic Rochester and had been told to “Not leave town” Did you have to travel far to get to your facility?
It takes about an hour and a half during the day to get to the hospital where I had my transplant, in the dead of night, when we went, about 45 minutes.
I live in the San Francisco Bay Area. My transplant was done at UCSF, University of California, San Francisco, I live in San Jose. We drove at highway speed passing a few cars. My transplant came from the University of Stanford in Palo Alto, which we passed on the way.
When I was waiting to be checked in a driver arrived with an ice chest. I did not ask if he had a kidney from Stanford, but as soon as I was in the room a nurse with a needle and 10 empty vials arrived. I have never given so much blood at one time. I am not an easy stick, but he was good.
Which hospital did you have your transplant in? When they built that big tall building across from Methodist Hospital my aunt and uncle, who moved to Rochester in the late 30's, moved into that retirement home.
When I got my ‘call’ I was living in Rochester at Gift of Life Transplant House. So My husband and I rode the patient shuttle for 7 blocks to the hospital. Originally I was listed for only a liver transplant in Kentucky. We live 45 miles from that facility and my husband could have done it a record speed, I’m sure. Complications resulted in a referral to Mayo for consult, but that never happened because I developed acute renal failure and was in critical condition. After a week was transported out of ICU to Rochester. So I got my liver and kidney at Mayo – one surgery with 2 organs from same donor.
That is really interesting that you drove past the donor hospital. And I cannot even imagine what you thought or felt to see that cooler with maybe your kidney. I’ve never heard that happening to anyone before!
As a liver patient, blood is always drawn in enormous volumes! I think they take at least 14 on my annual evaluations. I never did get used to it, and I still close my eyes during the stick and the draw! Fortunately, most phlebotomists understand and talk to distract me.
I will look for that building when I go to Rochester for my eval next spring. My husband asks if it is ‘that tall colonial’ structure?
Please check out the building, I do not remember what the building looked like it was new when my aunt and uncle moved in and had everything a retired person wanted. You would buy an apartment and when the time came you could move to assisted living, or full time nursing. They had all the activities anyone would ever want. When I was there for their 60th wedding anniversary the place was not able to maintain the dream the builders wanted, I do not know for sure but I think they were unable to attract as many residents as they needed.
My aunt and uncle were on the 14th floor across from the heli-pad at Methodist Hospital. They could walk all the way underground, from I do not remember from where, downtown maybe, to their building with access to the hospital and many other places along the way.
Because all my blood work lab results, goes to UCSF via computer, as well as staying here, I only have to have 7 vials drawn for my annual and 6 month draws, compared to the 4-5 I usually have drawn every 6 weeks. I close my eyes when I have my blood work done, where they do children and babies, so they are good. I usually let the "vampires" know when it is a good stick, because I have to have the draw done in my hand.
@mlmcg – Thanks for sharing your story. I agree with Rosemary, everyones stories are so different. Why do you need the blood draw one in your hand? I think those are very painful.
Lynn, I wanted to let you know that I just completed my evaluation this week in Rochester. Went very well and many of the things I feared would be issues were not. I will find out next Wed whether I am approved as a kidney donor for my husband, denied or deferred. But the entire team was very encouraging and I am going back to Arkansas tomorrow with tons of information and a much better feeling about the entire process. Love my donor nurse Lisa King who I will contact with any more questions that may arise. They are so thorough here you really are not left with many questions. I could easily check my test results and reports on my portal so that was handy. Was able to send my husband a picture of my left kidney which he will hopefully receive. They typically remove the left kidney for donation as the blood vessel is longer. Also found out that your test results are valid for 18 months.
Hi @mlmcg! I wonder if the building you have described here is the Charter house? https://www.charterhouse-mayo.org/
@jamienolson Thanks for the link Jamie. I think that @mlmcg is the member who you are referring to.
whoops. You are correct! Thanks, Rosemary. 🙂
The reason I have to have my blood drawn from my hand is that I "lost" my veins in both arms from the multiple surgeries I had to have to get a shunt or fistula in my arms. I have small veins that like to roll, blow and hide. Unless the person drawing blood or putting in an IV is very experienced the hand is the best place.
Yes, the hand can be painful because we have lots of nerves there and they cannot be seen it is easy to hit a nerve. If you have someone who does not hit a vein and moves the needle around trying to find blood they can and usually hit a nerve. My hands are cold so I am given "baby warmers" to warm my hand. It also helps when I can get someone who has drawn my blood before. I have asked for someone else to draw my blood if they believe they know my body better than I do.
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