Another Mayo Visit In The Books

Actually it will be our 11th visit to Mayo Clinic in Rochester Minnesota since September of 2014. Ironically nine of those trips have been between 4/2016 and 6/2018, so that averages out to a visit every 2.888888 months. If you drove, it’s about 825 miles, one way, and if you never had to stop for gas or a potty break you could make the trip in about 12 hours; I think the fastest we ever made it was 15 hours. To fly is a little easier, but in order for it to be affordable you have to fly from CPR to DEN to MSP, then rent a car and drive an hour and 20 minutes south to get to Rochester. One might say…Why fly out of Casper, drive down to Denver and then fly directly into Rochester, surely that would have to be easier and cheaper? <insert evil laugh here> NOT! Oh if it were as easy as you thought. Here’s how it would go…assuming there is no traffic, it would take approximately four hours to drive about 280 miles to DEN, then your flight itinerary would go something like this, DEN to SLC to MSP to RST, and the cost of your ticket would be no less, but you’d have serious parking fees at DEN when you got back, don’t forget about the toll, and you might need some gas along the way.

Thinking about all that makes my head spin, but there is something to be said about being able to fly back home, grab your checked bags within 15 minutes of deplaning, and being home within 30 minutes of landing.

All of that being said we have our 11th trip in the books. I’m not sure if it was a good visit yet, because I’m not 100% sure my transplant team has finally realized they have been trying to cram a square peg in a round hole, but I have hope that this time around we got our point across.

Why am I a square peg? Well, for those of you who know me, it’s not for any of the reasons you may be assuming…LOL! I have a rare blood disorder call Primary Cardiac Amyloidosis, also know as Immunoglobulin Light Chain Amyloidosis (AL) with Cardiac Involvement, that has been successfully been in remission, as of today, 38 months and 22 days. Because of the rare blood disorder I also have a rare problem with my heart called Restrictive Cardiomyopathy in my left atrium. Basically the left atrium of my heart is thick and stiff so it doesn’t squeeze and release like it should.

Neither one of these things are addressed by UNOS, the governing body by which all organs are allocated. If my heart was failing due to a more common means I may be in a different situation, but for right now I need my transplant team to understand what their up against. The good news is that in the Fall, we hope, UNOS is rolling out a new set of listing criteria that addresses both my Amyloidosis and the Restrictive Cardiomyopathy which would put me in a position of getting a heart much sooner. The last hurdle is convincing Mayo Clinic in Phoenix to take a chance on an Amyloid patient. The transplant list is much shorter and the donor pool is much larger, so with my blood group, O, which is the most common, my wait time would be less than in Rochester.

Oh and I can never get away from that place without them tweaking my drugs…UGH…thankfully there hasn’t been any bad reactions to the change, so far…

Hopefully I will here sometime next week if I’ll be going to Phoenix to get to know their transplant team!

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