New Transplant Blog Posts

I know it can seem to be extra work and additional time, but I always download the labs and medical reports from my local doctors and upload them to my nurse coordinator at Mayo. I can even send my blood labs to her before they are faxed by the lab company. If there is something in particular my local doctor is looking at or concerned about, I also make a note to communicate that to my Mayo coordinator. it's just my double security, just like a house alarm or two step security online. I am committed not to let anything fall through the cracks. It took me a little time to understand how to accomplish this technically, but it has helped so much. I just celebrated my second year after my heart transplant and I haven't seen a Mayo heart doctor in 14 months. Still waiting for my 2 year appointments. So my local docs are critical for my health. On the other hand, I was sent to Mayo for a cataract, because my local ophthalmologist did not feel confident operating on a heart transplant patient. Same with my orthopedic surgeon. He wants me to have a hip replacement at Mayo. So it's a game of balance and keeping open and flexible. There is no magic button here. Carry on, my sisters and brothers. We are special!

Good for you taking charge of your healthcare. It is something that I, too, have learned to do after my liver transplant. And you are right about it not being easy. But as transplant folks, we've been through too much not to own it and make sure all our docs are on the same page.

Definitely agree with you. Take care.

@keggebraaten my situation is a little different. My transplant journey involves 2 different centers. The first is one I won’t name and the second is Mayo in Rochester, MN. I had a pancreas transplant in 2005. I was satisfied with the pretransplant evaluation. The transplant itself was fantastic. It was like my own personal miracle. Unfortunately as time went on (after about 3 months - a year) the follow up turned out to be really lacking. My local providers were & are great but I struggled along with very little involvement or support from the transplant team. In 2016 I was having some serious decline in kidney function and I met criteria for kidney transplant evaluation. I ended up going through evaluation at the previous facility and also at Mayo. I was approved and accepted for transplant at both centers. I chose Mayo. There’s no comparing the two because the difference is amazing. Mayo is thorough, detailed, has stellar organization & communication & hopefully great follow up. There is good communication between the Mayo team and my local providers. I only wish the Mayo team was monitoring my first transplant because I’ve lost confidence in the previous center. I pointed out that I heard that “once you become a transplant candidate at Mayo, you become a lifelong Mayo patient”. Unfortunately I guess that principle is not retroactive. I wish!

Yes, I know. I worked in IT for 20 years. But most people on Connect wouldn't understand (or care) about what happens behind the scenes.

Communication especially on a systems level is critical in order to receive the best care possible. The roll out of the EPIC software system at Mayo last year was a frustration point simply because the software was implemented with no training for providers or patients how did they think that would work well?. My local providers use EPIC so I was hopeful at first that my labs would quickly get uploaded and my Mayo team would access them seamlessly but with no training the Mayo teams were unprepared to effectively use the software on even a basic level. I sat with a brilliant surgeon who fumble through screen after screen and finally gave up looking for a result. This is one of the smartest people on the planet but without training on the software he didn't stand a chance. I get pretty panicked in these communication vacuume moments because I know I am not getting the best care possible due to lack of communication between my teams this puts my transplant and health at undue risk. If you've woked behind the scenes I'm sure you have seen things like this before.

@marvinjsturing I too worked in IT, but I “retired” in 1980 when ny son was born. When I resumed working after 20 years, IT was a totally different thing, so I did not go back to it.
JK

I was at Rochester for appointments shortly after the conversion. There was a lot of stress and frustration. Every time I checked in for an appointment, there were complaints about the software. I completely understood what they were going through. I was happy to be a patient at that time instead of being on the support staff.

So true!
On a different note -
Once I was wondering why Mayo was not getting my lab results via FAX. Then I noticed that someone misread the Area code for the FAX to be 502 instead of 507. University of Louisville Liver Transplant Dept. must have wondered what was going on!

Good morning!
After this last weekend in Minnesota, we all need some spring weather! I hope all of you are safe and warm in this still colder than usual weather.

Today's blog post is for our incredible living donors. Most of the time our donors do well with surgery and return to their lives as normal after a few weeks. But sometimes their employers aren't as understanding as we would like about their time away for surgery and recovery. In those cases, usually a plan can be worked out, but if it can't, the employee (donor) sometimes suffers the consequences of being away from the job. Did you know that now there is FMLA coverage for donors? In cases where you qualify for the Family and Medical Leave, you can utilize that plan to protect your job when you are an organ donor. Read more in our blog today!
https://connect.mayoclinic.org/page/transplant/newsfeed/new-federal-law-for-living-donors/
Hoping for spring,
Kristin