Transplant Evaluation - What to expect

@dhelmstetter As the saying was in the old TV show "Patience, grasshopper". Easy to say, a lot harder to do, I know....
Ginger

@dhelmstetter, It sounds like August is a page to circle on your calendar. I am not going to lie: The waiting and the unknowing are difficult. For me, it was as if the clock stopped. I had to focus on daily activities that occupied my mind and time. What are you doing to pass the time? What are you doing to keep yourself as healthy as possible?

@racing212 , @cehunt57, You have mentioned that you are waiting for transplants. How do you live with the waiting? Do you have any tips to share with @dhelmstetter? @gingerw, do you remember anything about your husband's wait and how he dealt with it?

Fortunately, we have a beautiful 5th wheel and make regular reservations for brief excursions in the ponderosa pines of AZ. Currently it is too hot, but during most months of the year I sculpt alabaster. Now to find motivation to get in my little art studio and paint! I DO get up at the crack of dawn and take my wonderful dog for a 'stroll!' Generally around two miles and on days I don't have dialysis, I walk again in the evenings when the pavement cools for another mile or so!

Rosemary, sorry to jump in but I felt I had to add as to the "wait" for the "call". I waited 18 months and my decline was rapid. The symptoms got worse every day. I was just praying for it all to end. The wait was incredibly hard. I remember writing to you in despair many times. You kept me going and helped and mentored me through very difficult times. If it weren't for you and others on this page I don't know how I would have persevered. I can only say to anyone else waiting for a transplant to seek advice, ask for help and talk to others who have experienced this or are currently going through this. ❤

@dhelmstetter , @racing212 , @cehunt57 and anyone else waiting for their transplant. When I qualified for my transplant, I did everything possible to be ready and then turned everything over to God. I put the topic "on a back shelf in my mind" so to speak. I didn't think about it other than to make sure I was ready and keep updated. I only waited about 8 months, so it was a short wait, and when the call came in I really had not thought much about it for a few weeks. I can honestly say i forgot about it. I am grateful that I did not have to deal with the anxiety many of you are expressing. Peace and blessings to all of you as you wait.

I found a part time job that allows me to go to all my appointments and they come visit when I'm in hospital

I've been since October 2018

@rosemarya I echo what you say, for @dhelmstetter and others, staying positive and healthy is so critical. Follow all your drs' advice and direction, healthy for me also means emotionally and mentally.

For my husband, he was on dialysis for 5.5 years. He was listed at one transplant center, then decided to double list, paying out of his pocket for the second place, which is where he ultimately was transplanted. His attitude was as you described. Be ready in your heart and body. He didn't let the fact of dialysis and kidney disease alter his lifestyle. He created a converter and deep cycle battery set-up for his nightly peritoneal machine. This came out of a scheduled power outage, rather than doing manual exchange. It also served him to take it "on the road", going camping and offroading. He continued to work full-time. He knew that a match would be found when it was "his time". He did extensive sharing of his story with those who wanted to know, and went each month to an in-person support group [www.rsnhope.org], which is where we met!

Is waiting difficult? Yes, indeed! For some, there are other circumstances, other health issues also going on. Each person is different. To have the technology today that we have, is a blessing. To be able to have access to it, yet another blessing.
Ginger

@2011panc, Thanks for sharing your uplifting message of hope and faith. Your words are powerful. I hope you are doing well.

@dhelmstetter, I have never met anyony who carves alabaster! If you want some inspiration, I encourage you to the discussion > Art-for-Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
It does get wordy, however if you scroll through you will be able to see pictures of art work that others have posted. Introduce yourself; share a picture; ask a question; make a comment - See you there?

@gaylea1, I struggled in my mind right along with you because I, too, had experienced a difficult pretransplant period several years earlier. Your words are so much appreciated.That is why I do what I do: I don't want anyone to ever feel alone while going thru an organ failure and a transplant. Thank you for what you are doing to support others - you are now an expert by experience.

@cehunt57, Thanks for filling me in on how your local providers amd Mayo are able to meet your needs. That is how medical care should happen - coordination plus communication with the patient's need in the forefront . Prayers as you continue your journey. Please keep us up to date, and stop in anywhere, anytime you want to chat.

@gingerw, Your husband is an amazing guy, but I guess you already know that! Such creativity and determination is admirable, and doubly so from my perspective as having been on dialysis for just a short while. How was it for you as a caregiver with kidney issues, to go thru all of this?

Inspirational to say the least!!!