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Waiting for a kidney transplant
I was close to getting a transplant. Several weeks ago I had a biopsy on my pancreas. The results came back with elevated tumor markers. My concern now, no transplant. My transplant coodinater had no words of wisdom to share.
I'm really feeling hopeless at this point.
I have contacted my Nephrologist for her advice. I was also told by the Dr. that did the biopsy, that they would test more in a year. Not comfortable with that either.
I'm not sure if anyone else has had a similar experience or has advice?
Thank you so much
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@tomkrush, Hi, Tom. I got my kidney and liver from a deceased donor at Mayo Rochester. The level of care that I received was of exceptional quality and compassion, from the top ranking surgeon thru every rank of staff, and volunteer that I met during my time there.
I am happy that Colleen has already given you some excellent reading material. I want to share 2 short videos from the Transplant Pages. These 2 short videos tell about kidney transplant at Mayo. I think you will enjoy hearing it from these kidney transplant experts. https://connect.mayoclinic.org/page/transplant/tab/resource-35/
@cmael, Do you remember how long you had to wait until your surgery was scheduled?
@cleverusername, Can you share a little about your own transplant experience at Mayo Scottsdale?
@threerrr3, I am thinking of you a lot these days. I hope you have a few free minutes to squeeze one response into your schedule. What do you have to tell Tom about the process of preparing to receive a kidney from a living donor?
Tom, How far away from Mayo do you live? There is transplant housing available that I will share with you when you are ready for it.
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2 ReactionsI was given a list of transplant centers in the summer of 2017 by my nephrologist and it was my choice whether to choose that or dialysis. Since I had daughters willing to be a donor, I chose transplantation. After checking with my ins and being told that I had two choices, I chose Mayo. In Sept I called Mayo and set up an evaluation appointment for Nov. After getting the go ahead and finding out my two daughters were both compatible, one of my daughters went through a 3 day evaluation in Jan and received the go ahead. It was then up to me to schedule when I wanted to do it. I wanted to wait until April because of the weather. Southern MN gets some nasty winter storms. I had my transplant April 6th, almost 11 months ago. I was so fortunate that it all went so smoothly. I did have some recovery issues, but it all worked out. I agree the doctors, nurses and staff are so knowledgeable, and caring. It is a wonderful place. I have my one yr checkup with a kidney biopsy scheduled for Apr 1-3. Except for being sick with a cold for the month of December and slipping on ice and tearing my hamstring recently, I’ve been doing really well. 🤞
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3 Reactions@tomkrush You are so fortunate you have living donors that are family members!
I’m waiting for an altruistic living donor.
My advise is to make an appointment now at The Mayo, Phoenix. You do not need to wait until your GFR is 20. I started at 24. I’m now at 18.
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2 ReactionsYes I leave for Mayo on Wednesday surgery is scheduled for Friday morning as my sister is my donor ..my sisters all signed up to get tested and they sent them out blood test that they took to there doctor and had blood drawn and sent back to mayo .. from there is they were compatible my older sister was the first to send it back and she was the first sent to mayo for testing .. a three days of test and we found out before we left she was a match . And then it was my turn .. or ours actually to choose a date to have it done .. so we are scheduled March 8 2019 the 21 year of liver transplant !! So two miracles in one day .. so soon I can tell you how everything went but if you have an other questions .. it’s a pretty easy process.. but first they have to fill out the questionnaire.. step one .. Good luck !!
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4 Reactions@threerrr3 All the best wishes and prayers headed your way. Safe on your and your sister's travels. How wonderful to have this support from your family!
Ginger
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2 ReactionsWishing you all the best for a good result and smooth recovery. 🙏🏻
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2 Reactions@threerrr3 Congrats on your soon-to-have liver transplant. I hope you and sister do excellently and have very little discomfort. Looking forward to hearing about it afterward.
My biggest regret was that I forgot to bring along a notebook I bought to keep track of each day, a journal. I really wish I had done that so I could remember exactly what each day was like and how much better I felt from one day to the next.
I'm sure your bag is packed and you are ready to go. I forgot to pack lip balm, and hospital air is dry. The hospital actually did have some though so that helped.
JK
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2 Reactions@contentandwell @threerrr3 I agree i wish now i would have done a journel lots of little things i don't remember now. Especially all the great Nurse's, Drs, Pas Pcas, and hospital staff that made such a big difference in my recovery.
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3 ReactionsWell i just started one i got an ap on my phone with voice to text ability im going to at least put down what i remember
@danab, I nonintentionally began my 'diary' when I was keeping a list of my medical expenses. However, it gradually turned into a schedule for my appointments and procedures. It was not until I was housebound that I began a journal as a way to fight boredom and to look for/record anything positive for my focus. I found that after my transplant, I could use my records in patient portal to fill in some gaps.
You might find some helpful information by reviewing your patient portal, and old insurance payments and medical bills.
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