The Feisty Fontan

Like most people this week, I am headed “home” for Thanksgiving. However, I am not traveling to my mama’s house for turkey and stuffing. Instead, I am headed to Mayo Clinic to get their insight on the best option for the long-term management of my health.

I refer to Mayo as heading home because for the first half of my life it truly was my home away from home. I had my childhood heart surgery at Mayo.  There were some years my family spent more time in Minnesota that we did in Missouri. Most of the family “vacations” we took was just driving to Mayo for my annual checkup. After a twenty-year hiatus, it does feel like an epic homecoming.Everyone has small details about the sights, sounds and smells of home that are so ingrained in their memory it’s practically part of their DNA. The smell of your grandmas’ biscuits in the oven. The sound of your dad yelling at the game on TV. The sight of your favorite aunt’s red hair. For me, I have memories of the sights, sounds and smells from my time at Mayo that (almost literally) make up pieces of my heart.  I can still hear the way the elevator dings echo on the marble. I can smell the slight musty odor in the walkway to the Plummer building. I can visualize every piece of art that hung in the cardiology waiting area.

In way, it’s kinda poetic that my Mayo appointment is the week of Thanksgiving. Every blessing I’ve had in my life I pretty much owe to Mayo. I wouldn’t have lived long enough to experience any of the really good stuff in life if it wasn’t for their willingness to help the lost causes.

Plus, this is a pretty pivotal week in my health care; the tests and doctors’ appointments I have this week will help decide how I and my doctors move forward with my care.

At this point, there are two possible surgical scenarios that Mayo is evaluating me for:

• Fontan Revision: This would be an update to my childhood open heart surgery. My local doctors proposed this idea during my hospitalization, but then reviewed all the images from my cardiac cath in more detail and changed their minds. I actually had a modified Fontan and the exact way it was modified may not lend itself to be revised in a way that will benefit me enough to be worth the risk. Since Mayo did my original Fontan, they are the ones best qualified to determine if it can be revised or not.
• Heart and/or Liver Transplant: This is becoming a more frequent procedure for adults who have had a Fontan. It is a delicate balance between being sick enough to meet the qualifications but healthy enough to survive the wait and then the procedure. The Fontan circulation causes liver damage, but Fontan patients can’t get just liver because the Fontan circulation will damage the new one. And we can’t get just a heart because you need a healthy liver to have a heart transplant. With it being a double organ transplant on someone with already complex health issues, Mayo would be one of the few places that would do this type of procedure.

Obviously, both these options are some serious shit. However, there is another possibility that in some ways is equally scary…the do nothing major option. Mayo may very well decide that I am not a candidate for either path and therefore we do nothing surgical. The “do nothing major” path basically means that we manage my heart, liver and overall health as well as we can with medication and maintenance procedures for as long as we can.

While I spend the week of Thanksgiving at Mayo coming up with a plan for my future, I think being there this week will also help remind me of all the gifts I’ve had in my life because of their care and knowledge. I’m also know, regardless of what Mayo suggests, that I have the most amazing support system to be by my side as I go down whatever path is next. The amount of love and support I have in my life is what is truly worth giving thanks for.