Heart transplant when home is far from Mayo.

Hi @jcblubaugh, I'm tagging fellow heart transplant recipients and caregivers like @estrada53 @danab @scottij @lmcarmichael @glinda @pjw51, who can share about their care coordination with Mayo Clinic after a heart transplant. Some live far from one of the Mayo locations, others closer or locally.

I also invite @sidney073 @margui70 @kathycaudle and anyone who has had an organ transplant at Mayo Clinic in Jacksonville to share their experiences and help answer your questions. Like @lcd's bio says in his profile "Mayo has been with me every step of way."

Chris, when will you be going to Mayo?

@jcblubaugh

I am a heart transplant recipient and live two hours from Mayo-Phoenix. I returned home after the first 90 days near Mayo and I found myself back at Mayo at least once a month for various follow-ups for the first year. A two-hour drive is not a bad deal. Given you are six hours away that creates a different proposition. I am guessing that Mayo will want you to have strong local support with whom they can coordinate. After six years of being the most boring heart transplant patient per Mayo (I prefer the word stable), I only go back for my annual exam.

Have you identified a local blood test company where you can perform your monthly tests. Do you have a local cardiologist? Is there a trusted hospital system if you need emergency service?

I know of several people on our weekly patient-run heart transplant support group (rebels that we are) who live in places like Dallas, Anchorage, and Denver who coordinate Mayo care with local resources. Still each one returns Mayo each year for their "annual". We even have one person whose insurance is not accepted by Mayo who coordinates care with Mayo and other physicians. It can be done.

So please raise these issues with your Jacksonville team. I am sure they have done this with others before.
Best always,
s!
Scott Jensen

@jcblubaugh, You might find some pre-travel hints from members in this discussion!
Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/

@jcblubaugh, I am not a heart transplant recipient, but I am a liver and kidney transppant recipient. I received my transplant at Mayo Rochester which is 1750 miles from home. Perhaps I can shed a little light by my experience.

When in the hospital, the nurses will teach you everything that you will need to know before release to outpatient care. Then outpatient care will continue with labs, tests, and doctor visits. It is a busy time. By the time that you are released from outptient care to go home, you will have learned how to manage your care. One of the first things that we (me and husband) were told was to make an appointment with my local doctor, and be sure that he has the medical information from Mayo. I remember being really uncomfortable to leave the safety of my Mayo team, but upon my departure my nurse coordinator said that She was only a phone call away! And that is the truth!!
Once home, and settled in, I was able to relax a bit and even became emotionl about all that I had been through. As a heart patient, I expect that you will be able to learn more from a heart patient. For me, I had frequent labs every week, every 2 weeks, currently 3 months, and as medically necessary. My labs were (and still are) drawn locally and sent to Mayo. After Mayo read them, they will let you know if any changes needed. I returned to Mayo at 4 months, and then annually. My primary care doctor takes care of dirrecting my health needs locally, but the transplant care is totally managed by the transplant team. My primary care doctor, and any specialist, will contact Mayo when necessary (or I will contact Mayo myself!)
One extremely helpful thing that I would suggest, is for you to use the Mayo Specialty Pharmecy if Mayo Jacksonville offers it. Meds come right to your door, and refills or changes are efficiently provided by Mayo doctors and pharmacy.
I hope this helps.

@jcblubaugh

I am a heart transplant recipient and live two hours from Mayo-Phoenix. I returned home after the first 90 days near Mayo and I found myself back at Mayo at least once a month for various follow-ups for the first year. A two-hour drive is not a bad deal. Given you are six hours away that creates a different proposition. I am guessing that Mayo will want you to have strong local support with whom they can coordinate. After six years of being the most boring heart transplant patient per Mayo (I prefer the word stable), I only go back for my annual exam.

Have you identified a local blood test company where you can perform your monthly tests. Do you have a local cardiologist? Is there a trusted hospital system if you need emergency service?

I know of several people on our weekly patient-run heart transplant support group (rebels that we are) who live in places like Dallas, Anchorage, and Denver who coordinate Mayo care with local resources. Still each one returns Mayo each year for their "annual". We even have one person whose insurance is not accepted by Mayo who coordinates care with Mayo and other physicians. It can be done.

So please raise these issues with your Jacksonville team. I am sure they have done this with others before.
Best always,
s!
Scott Jensen