Mayo Clinic Connect
Hi, I started Hemo Dialysis 3 weeks ago. My question is when do you usually start all the tests and get put on a transplant list?
Liked by cehunt57
Welcome to Connect; I'm so glad you've joined us. We have so many incredibly informative conversations taking place about kidney transplant. To begin, I've listed a few below:
– Getting Listed for Transplant https://connect.mayoclinic.org/newsfeed-post/getting-listed-for-transplant/
– Kidney transplant https://connect.mayoclinic.org/discussion/kidney-transplant-1/
– It's been too long,but surely here and finally on the waiting list https://connect.mayoclinic.org/discussion/its-been-too-longbut-surely-here-and-finally-on-the-waiting-list/
I’m tagging @contentandwell @IWantToBelieve @cmael @dshaver @2011panc @sevkira @mlmcg @coastalgirl @ters1993 @bszychow @scottb32 @wmoser2613 @hardaway3 @katieslost @karis @jtannen1 and Mentor @rosemarya, as they may be able to share their transplant stories with you.
@ginal, we look forward to getting to know you and supporting you on your transplant journey; would you share a few more details about yourself?
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@contentandwell, Thank you for sharing your very personal experience.
When I was transferred to Mayo, and only listed for a liver transplant, some of my family members asked about getting tested to be donors. However. since I was so critical, they were told that there was not enough time for that. Soon after that, I was listed for both a liver and a liver and a kidney. I, too, had a deceased donor.
Liked by JK, Volunteer Mentor, cehunt57
@dshaver, I'll continue to pray. Rosemary
I have done both, and peritoneal dialysis is easier but you have to be very carful because you can get peritonitis, which is very painful and you get very sick.
Thank you, I might just do that.
What is that?
@cmael, I want to drop in and say that I hope that you are continuing to make progress.
I am so happy that we had the opportunity to meet in the waiting room at Mayo in April! I was delighted to meet your family, too. That was quite a coincidence that we ended up sitting face-to-face while waiting for our labs!
I had a good checkup and finished the next day in mid afternoon. Due to the heavy snow, we decided to have out celebratory dinner in the clinic cafeteria! We drove home next day and the roads were clear the entire trip.
Are you home? How are you feeling since the transplant?
@dshaver, I am dropping in to say Hi. I am thinking about you and I hope that you are still making forward progress. I know how time moves too slowly during the pre transplant period. You do not need to reply, if you are not feeling up to it. However, please know that we are here if you need us for anything at all. Rosemary
Liked by Kanaaz Pereira, Connect Moderator, cehunt57, ginal
I'm out of breath just reading through all the messages. My doctor was the one who wanted me on the transplant list before I had to start dialysis. In order for me to be placed on the list I had to go through the evaluation first. My insurance would pay for only one evaluation. This was in 2003, so my memory may be a little "fuzzzy". I began dialysis about 6 months later. A little over 10 years ago, friends visited their family, about 100 miles away, came back to let me know that their niece worked in a transplant center that was in a different region than I was in and their waiting list was not as long as mine. If I paid for the e-val I could be placed on 2 list. So I did. Less then a month later I had a kidney, at my first transplant center which was closer to home. Go figure. I have had my kidney for just a little over 10 years now and every time I see a new doctor I tell them the kidney comes first and they honor my wishes.
I was on hemo-dialysis 4 days a week, in the evening, and found it to be wonderful. I did have to have dialysis one morning and it just wiped me out. If that was what everyone else felt like when they came off dialysis during the day I understand why people hate hemo-dialysis. I was not a candidate for anything other than hemo. Dialysis has changed so much in the last 15 years. There is home hemo-dialysis and at the center hemo-dialysis. If you are unable to check out the different types of dialysis and what is right for you, just about everyone has a teenager in the family or knows of one who are more than willing to do the research for you. Just give them a phone, tablet, or a computer and they will be happy. Good luck.
@mlmcg,, Thanks for providing your insightful answer as an experienced pro! The whole dialysis/transplant/kidney conversation is very confusing and frightening when we begin to hear these unfamiliar words and conditions. I clearly remember that. I was fortunate because I had doctors from the very beginning who were always on top of taking care of me, or were ready to refer me to specialists who could take care of me.
I will probably be facing a new doctor in the not-to-distant future, because mine will probably be retiring. Thanks for what you said, "every time I see a new doctor I tell them the kidney comes first and they honor my wishes."
Liked by cehunt57, ginal
I am a nurse and have been working in many countries around the world. My volunteer experience has taught me that we are privileged and should always give thanks. I have worked with kidney centers in which dialysis is the only option and available for the patient twice a week. The machines are few and the patients are many; If you miss the chance for your dialysis, you may not have that opportunity again until your next scheduled session. survival rate after being diagnosed is 20%. Transplant is out of the question; even though many people are willing to donate a kidney, the facilities can't test appropriately and carry out that operation. Its a hard world out the in West Africa. I am sharing this because we have the means to do dialysis at home, we have a transplant list which gives us hope for a new kidney one day, we have people who donate to some of us. Others in the world aren't so lucky. They have very little options and CKD becomes a life sentence in many cases. Please let us give back. Let us use this opportunity to reflect on the pain that we feel and consider using the means we have been blessed with to help those who have no hope. It is pitiful working for a hospital in a city of almost 300,000 people and many kidney patients with just two dialysis machines. whatever you do, give back. the little you have would help. If you can't give, by all means pray that everything works out for them. Thank you for reading.
Liked by Rosemary, Volunteer Mentor, JK, Volunteer Mentor, cehunt57
That's such an insightful lovely message! You may notice that I moved your post and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to some other members who have discussed dialysis.
You recently posted about "looking for a donor for my kid brother forever." May I ask if you've had any success, and how your brother is doing?
Liked by Rosemary, Volunteer Mentor, cehunt57
@kanaazpereira Thank you I have a appointment at the Mayo on the 23rd of July looking forward to finding out more information and hoping I'll be able to be on the Transplant list.
@ginal, Good for you.
Here is the discussion group about visiting Mayo where you can read what other members have shared about their visit and travel and lodging at Mayo locations. – https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
Keep in touch as you prepare for your visit. Feel free to ask questions that you might have.
Hi. I am a liver/kidney recipient Oct 1012 and I volunteer at Mayo Jax on Mondays. If you would like, maybe we could meet and discuss the process. If interested, just let me know via this link, and we can exchange contact information. Good luck to you.
Liked by Kanaaz Pereira, Connect Moderator, cehunt57
@wmoser2613, I am happy to read a post from a 'fellow' liver/kidney recipient! It sounds like you are doing well and making good use of your new life by volunteering at Mayo. I am sure that patients enjoy meeting you. Do you volunteer in Transplant dept?
I want to tag @ginal to this message because I believe that you are talking to her. – Note: There is a Private Message system if either of you wants to share private contact information. Click envelope top of page, or see directions on following link.-
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