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!

Interested in more discussions like this? Go to the Transplants Support Group.

jeanne5009 | @jeanne5009 | Mar 19, 2020

In reply to @beckyy39 "I have Monday and Tuesday appointments for consult so I will check again on Monday." + (show)

Do you qualify for Medicaid?

JK | @contentandwell | Mar 19, 2020

In reply to @beckyy39 "I had a bunch of appointments the first couple of days but now I'm averaging about..." + (show)

@beckyy39 I’m not sure which Is worse, the grueling days of getting all of these tests in a few days, or going back weekly or so like I did for all of the tests. Of course that would be impossible for anyone coming a greater distance.
It will all be done soon though, there is a light at the end of the tunnel. I hope everything continues to go well.
JK

amyintucson | @amyintucson | Mar 19, 2020

In reply to @beckyy39 "Thank you Rosemary! I was told by social security that it is now a normal policy..." + (show)

6 months is normal waiting period from start of disability (not application date). I think it might be based on most states having 6 months short term state disability.

Rosemary, Volunteer Mentor | @rosemarya | Mar 23, 2020

In reply to @beckyy39 "I have Monday and Tuesday appointments for consult so I will check again on Monday." + (show)

@beckyy39, I have lost track of time and where you are in your evaluation process. I am not going to burden you with questions because I remember what my mind was like during and after my evaluation procedures. I assure you that we, on Connect, are here anytime that you need us.
Hugs.

Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 2020

I am looking at the title of this discussion. Transploant Evaluation - What to Expect.

I am certain that the current pandemic situation is definitely something that none of us expected. I want to ask you how you are managing your current health needs. Have any bothersome symptoms developed? Are you able to maintain a healthy diet and to get some exercise? Have you had follow-up messages from care teams? Have you been able to participate in a teleconference?

jeanne5009 | @jeanne5009 | Apr 8, 2020

@rosemarya
Well...I for one am coping. Had my EDG and colonoscopy at Mayo Jax. All went well. That was at the beginning of this virus. Having my 6 mo MRI next Tues. locally. Mayo encouraged that instead of driving 5 hrs.
My friend Gary had an MRI of the pancreas and the cyst has grown 2 cm in 3 mo. So, he will be having the Whipple procedure on Friday. This is NOT elective surgery and it is a difficult one. We are each others caregivers so we are stressed out. Mostly because of the precautions for Corona that may not let me in the hospital. We will get more info on that tomorrow. His insurance precludes him from going to Mayo but he talked to my Dr. when we went for my visit.
They agreed with his Dr. Meredith In Sarasota who is one of the top specialists in the country for the procedure. The hospital has a dedicated team for this.
Would like to say I'm getting good exercise but.... the days of wandering around the food store are over.... for now.
But....I haven't lost the hope for all the good things to come. It is Spring and the birds are singing and flowers are showing us their magic. It has been warm and sunny in FL and I have a pool I can float around in. I am thankful for this since last year I spent most of the summer in a cast!
My son is in NJ and has been exposed to the virus at work. He has symptoms but no fever. We wait...
Please remember my son Greg and Gary in your prayers. Me too, please...I'm going to rise to the occasion and support my loved ones to the best of my ability.
I'm not extremely religious but I believe God is choosing my path and...I will follow. We don't need to go to church to pray...God talks to us in the strangest ways. We just have to listen.
Happy Easter! Be healthy!!
I have been listening to ALF webcasts and reading everything I can find on Corona and livers and pancreatic cancer. I have been posting on Mayo's pancreatic cancer support page too. I have also been having teleconferences and correspondence with our Senator Scott, Governor DeSantis and Congressmen Mast and Buchanan to provide them with real world input.
Lol....I may even get smart...but I'll need a new pair of glasses...

australia | @australia | Apr 9, 2020

Is there any input to the kidney transplant from people doing Dr. David Sinclair's Age Reversal Program? I am about to start that and hope it will give the cells in my diminished kidney some renewed function. Will let you know. American in Australia. I would of course prefer this to a kidney transplant. In the past year I wrote to Dr. A. Atala about getting a new bladder of ureter but he did not answer. Was most disappointed.

Rosemary, Volunteer Mentor | @rosemarya | Apr 10, 2020

In reply to @jeanne5009 "@rosemarya Well...I for one am coping. Had my EDG and colonoscopy at Mayo Jax. All went..." + (show)

@jeanne5009

Jump to this post

@jeanne5009, These are times filled with extreme challenges. It is a time for reflection and thought and I will hold your intentions close to my heart. I know that you will do all you need to do to be safe. I hope that today all goes well for your friend.
Jeanne, will you let us know, next week, how the elective procedure was for you as a caregiver -could you accompany him?
What about your MRI? Will it happen next week, or can it be postponed?
Hugs.

Rosemary, Volunteer Mentor | @rosemarya | May 30, 2020

I want share this information from UNOS on May 29. I know that this will be good news for all our members who are waiting for a transplant evaluation or who have been on inactive status.

According to UNOS, the number of transplants performed in the last two weeks in the United States, has leveled off to where they were before the pandemic. This is an excellent and easy to understand at-a-glance visual aid, so I invite you to click on the blue link.
https://unos.org/news/transplants-bounce-back-to-near-pre-covid-19-levels/

It has been too quiet for too long.
How are you getting along after being on pause for these past weeks? What is the organ transplant that you need?
What are you hearing from your transplant center?
What are your thoughts or questions as you move forward ?

dhelmstetter | @dhelmstetter | May 30, 2020

In reply to @rosemarya "I want share this information from UNOS on May 29. I know that this will be..." + (show)

I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very frustrating since all referrals went in before Covid. Now everything apparently has to be re-issued by my kidney doc. Meanwhile, I have two living donors in the wings awaiting my evaluation to see if I'm even a viable candidate for a transplant. The social worker at my dialysis center stands fast to that it may take 4 or more weeks for the paperwork to go through... It IS very frustrating. Any advice how I can expedite this process?