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.

We are currently staying about 6.5 hours away from the Jacksonville FL Mayo Clinic, and my husband was just added to the UNOS list for a liver transplant. We are feeling the same panic… He was added about 3 days ago- we’ve packed a bag each, made sure the car has gas, and are trying to carry our cell phones everywhere so we remember to answer them. Ha. I have the same questions about getting care in our little town when we are away from Mayo. We got home late Thursday night, (today is Sunday) and I still need to find a lab where he can get regular blood draws, and figure out how all of that works. The stay in Jax has me flummoxed also— how do we plan ahead when there IS no planning ahead for where to stay, etc.? The first day we get in, and he goes into surgery- where do I stay? What if it’s the middle of the night when he’s done? What do we do with the little doggie? Who empties out the fridge so it doesn’t stink when we get back? Can someone run the dishwasher while we’re gone so it doesn’t stink? What if we’re grocery shopping when we get the call and we have to go home and put groceries away first? Etc. etc. etc. These are the thoughts my 3 am brain always comes up with— my rational awake brain knows that I can manage all of these things, but somehow they become terribly urgent at 3 am. Know that you aren’t alone!

@terribwyo Hey again. You are right blood work is really needed. For my transplant we flew into AZ at a weird hour took a cab to Mayo and I was on the table in an hour. They sent my wife to the hotel with our bags as the operation was 9 hours and she could do nothing in the waiting room for me. They will keep him just fine if you are not there. We left our golden retriever in CO but some hotels do allow them. We had my sister house sit for us which took care of a lot of that. The food and smell are expendable but you do need to find a place for doggie. It will all work out. (-----:

@jcblubaugh, I think your trip to Mayo is just days away if I've calculated correctly. How are you doing with final prep? Any last minute questions?

Hi. Thanks for your interest and follow up.

We’ll be relocating to Jacksonville this week and I should be admitted around the 25th.

Have had help getting everything organized and this forum is great!