Transplant Evaluation - What to expect

Posted by bamagirlgina @bamagirlgina, Mar 12, 2018

We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!

@rosemarya

@racing212, I am happy to hear from you. These past months have been quite stressful for all of us, and I bet that you have had one less thing to be concerned about by being able to stay local. Have you been able to go out to get labs drawn? Do they get sent to Mayo, or dis your local doctor monitoring you?
I hope your HE has been under control.

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They get sent to mayo. And I've been to the hospital a couple times.

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@rosemarya

@gaylea1, I'm getting caught up and want to send you prayers for a safe trip and for a successful ERCP.
Do you know if you be having a stent removed or replaced? Are any precautions being considered due to your past pancreatitus?

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@rosemarya Hi! Im so hapoy to connect with you! I think that the stent is to be removed but they won't know until I get there. They can promise me nothing as to the outcome whether I get pancreatitis or not. I'm praying that I don't get it yet again. It is so unbelievably painful. I don't want another extended hospital stay as I'm put into a room to recover not necessarily transplant friendly. The surgeon doing the ERCP is the head of his department and works mainly on transplant patients. Thus said, there are no guarantees. I just pray they give me enough sedation so I don't had to go through the nightmare that I've been through before…being awake and feeling everything. 🙏🙏🙏

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@rosemarya

I was at Mayo Rochester last week, and I felt safe and secure because of all of the safe practices that the entire Mayo staff and the patients are following.
In conversations with my care team, I learned that transplant patient visits are increasing after the pandemic slowdown. UNOS (unos.org) reports that after monthlong decline in transplants performed each week in the United States, the numbers began to gradually increase.
How has this affected you?
Have you been reactivated? What are you hearing from your transplant center?
Where are you in your transplant evaluation ?
@beckyy39, @jeanne5009, @racing212, @brianna, @dhelmstetter, @estrada53, @gaylea1, @cehunt57

I extend a special WELCOME to new members. You are about to begin an amazing journey with ups and downs anfd twists and turns. How can we help you as you begin your own Transplant journey? What questions do you have?

I think we ALL look great in our masks! Don't you 😷

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I have been assign my 'contact' at Mayo Scottsdale but am awaiting (rather impatiently) for them to begin my evaluation. I've had a living donor in the wings since early March when 'elective surgeries' were shut down here in AZ. Now with the drastic increase in Covid cases here, I worry that delays will occur again. How 'old' is too old for a donor? My older brother has agree to donate but he is 73. I know that's putting the cart before the horse since I don't know if I'm even a viable recipient.

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@dhelmstetter

I have been assign my 'contact' at Mayo Scottsdale but am awaiting (rather impatiently) for them to begin my evaluation. I've had a living donor in the wings since early March when 'elective surgeries' were shut down here in AZ. Now with the drastic increase in Covid cases here, I worry that delays will occur again. How 'old' is too old for a donor? My older brother has agree to donate but he is 73. I know that's putting the cart before the horse since I don't know if I'm even a viable recipient.

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@dhelmstetter There is a growing body of evidence that seems to indicate upper aged donors can successfully donate a kidney. It is their health and mental evaluations that decide, not necessarily age. The testing performed on both donor and recipient is extensive, and the transplant team wants both parties to be able to undergo the procedures successfully.

I hope you do not have to wait much longer to start the evaluation process!
Ginger

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@gingerw

@dhelmstetter There is a growing body of evidence that seems to indicate upper aged donors can successfully donate a kidney. It is their health and mental evaluations that decide, not necessarily age. The testing performed on both donor and recipient is extensive, and the transplant team wants both parties to be able to undergo the procedures successfully.

I hope you do not have to wait much longer to start the evaluation process!
Ginger

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I just finished a questionaire this afternoon on the phone. Looks like with the backlog from COVID, they might not start the evaluations until AUGUST! Yikes! I'm growing impatient!!

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@dhelmstetter

I just finished a questionaire this afternoon on the phone. Looks like with the backlog from COVID, they might not start the evaluations until AUGUST! Yikes! I'm growing impatient!!

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

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@dhelmstetter

I just finished a questionaire this afternoon on the phone. Looks like with the backlog from COVID, they might not start the evaluations until AUGUST! Yikes! I'm growing impatient!!

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@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?

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@rosemarya

@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?

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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!

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@rosemarya

@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?

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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. ❤

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@rosemarya

@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?

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@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.

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

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I've been since October 2018

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@rosemarya

@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?

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@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

Liked by cehunt57

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@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?

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@gingerw

@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

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Inspirational to say the least!!!

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