Heart transplant when home is far from Mayo.

@dsclancy

DS, may I call you DS? I am reluctant to share the link with you publicly so look for a private message to follow. A little background for you and I will keep it short as I am quite proud of what we have done.

Ours is a group of 21 heart transplant recipients. Most had their procedure done at Mayo-Phoenix but a few are under care of Mayo and had the transplant elsewhere (University of Chicago, University of Texas, for example). We grew out of an administrative decision last fall to change the Mayo Clinic Social Worker run support group via Zoom to once-a-month verses the original once-a-week

To be direct, the group was livid and among demands of who to-have-fired, and refusals to attend future monthly meetings, I suggested we form our own group. Our concern was without regular contact, and 12 times a year would just not do it, the group would fail. In short, we had grown to like each other and did not like the prospect of waiting to see each other only one-a-month. Therefore, as ringleader of the rebellion, I purchased a professional Zoom account, about $160 dollars, and gathered our respective e-mails and phone numbers. Mayo runs their meeting on the first Wednesdays of the month and we fill all the other Wednesdays.

We are coming up on one year of operating on our own. I maintain the mailing list. We have an active text chain, celebrate heart transplant anniversaries, and gather for team lunches whenever the out of towners (Anchorage, Dallas, Denver; even Tucson) come to Phoenix for our annuals. We have had two members pass from noncardiac ailments and held grief sessions for both. Most of the Phoenix locals attended the memorial services. Relatives have been most gracious telling us how much the group meant to their loved one.

There was resistance from Mayo at first and now we feel celebrated as we are somewhat well known on the Phoenix campus. Even the doctors have thanked us and told us to keep going. The social workers have also come around and indirectly support our efforts. We call ourselves The Beats and have our own logo. We have most of the markings of a true community.

The group is rather close though we have admitted two new members whom at least one of The Beats met on campus during various follow-ups.

Before I send the link, privately, I would like to know more about you. As with most tight groups we are cautious about new members but do not wish to be exclucsive.

Best always,
s!
Scott Jensen

@scottij Thank you Scott and completely understand.

My question is about travel to the transplant center from home within the time required. Specifically, do you or your group have any advice on private flights? If that has come up within your group or if anyone else has experience in that, please let me know. Thanks!

@dsclancy
So with Mayo Phoenix, their rule was you must live within two hours of the Main Campus. Luckily, I lived one hour and 45 minutes away by Google maps and when we got the call made the drive in about one hour and 15 minutes. Several within our group, moved to Phoenix, otherwise they would not be on the list. For example, "Bill" moved from Denver so that he could be on the list. He is now back home in Denver. One person, semi active in the group as not all participate to the same extent, had arranged a helicopter for emergency transport in the event he got called. He lived a little over 3 hours away by car. Mayo accepted him when shown proof that he could get to the main campus in under two hours. If you do not meet those requirements or have arranged for transport, then you are not on "the list" to be called. I think you go to an inactive status. One person in the group was the beneficiary of the new procedure called Heart-in-a-box. This extends the time a heart can be harvested and then transplanted. I won't go into the details but that is extending the distance/time requirements, I think, up to six hours.

Hopefully that helps.
Best always,
s!

@scottij Yes, thanks, really appreciate the information.