We are back home and unpacking from a trip to the Cleveland Clinic over the past 3 days.

After a whirlwind trip late last week up and back to Baltimore to pick up records to hand carry with us, we packed up our bags and headed up to Cleveland. The cardiologist who had been involved with my care at the Cleveland Clinic, left the clinic last Friday, so he handed me off to his colleague in interventional cardiology (the ones who do the procedural side of cardiology).

Dr. K is one of the top interventionalists at the Clinic if not in the country. He is also one of a handful (and I literally mean you can count the amount of cardiologists who do this procedure on one hand) of cardiologists who do an advanced Cardiac Cath procedure. They are extremely high risk.

The good news is he believes that I am a candidate for an advanced Cardiac Cath procedure. The bad news, not right now. Here’s why:

We know from my tests at Hopkins that my native vessels (think the arteries we are all born with) are blocked, which is why they did a Coronary Bypass 5 years ago. The severity of the blockage has progressed over the last 5 years and in the words of Dr. K, they are hanging on by a thread. Most cardiologists agree that this is most likely why I still experience a lot of pain. Dr. K would like to reopen the native vessels and stop messing with/stenting the bypass grafts.

Unfortunately, in order to reopen the native vesssels, we need one of the bypass grafts to ‘go down’ again. Basically we need the 50-60% blocked bypass graft to progress to a point that it limits flow (usually around 80%).  You can’t have blood trying to flow through two channels (the native vessels & the grafts) in the heart. Dr. K suspects that given the rate at which my disease progresses, that this will most likely happen in the next 3-6 months. At which point he could do the Cardiac Cath to reopen the native vessel.

The good news is that we have an option to move forward, versus the “we have nothing left to try” from Hopkins, because they don’t do the procedure I need to have done. The good news is that we have a plan and a renewed sense of hope, after meeting with Dr. K.

The bad news is now we are in this waiting period/holding pattern. We are basically waiting  for my disease/heart to get worse, to make it better.

What happened to re-doing the bypass? Dr. K really doesn’t feel like this would garner any real benefit. He was also looking at our long term plan. We also discussed that if we are looking at a Transplant (which many cardiologists agree will ultimately be required), then they try to limit reopening the chest multiple times. The cath to reopen the native vessels would really be a bridge to transplant, but in a long term sense.

While it’s great to have a plan for the next step, we still don’t have a solution for my pain and vomiting. It’s a lot of telemedicine appts and emailing back and forth with my doctors right now. There is a little bit of a disagreement and finger pointing amongst the various fields on how best to proceed, so it causes a lot of back and forth and slow progress forward.

My PCP and I are going to do an in person appointment early next week so that she can do a proper physical exam and some labs.  This will be the first time I will see her in person, versus our weekly telemedicine appointment, so I would ask for protection as we venture into a doctors office. She is having me come as their first appointment to limit exposure to others in the office and of course we will wear masks, but its not without risk. We are going to brainstorm some ideas on how to treat the pain and nausea after she has had the chance to do an exam.

My cardiologist and PCP are in close communication and work so diligently to try and keep things stable and moving forward with my case. Unfortunately, we have walked into a new season of my cardiac story and its a tough one. This is a tough season to be in  and most of the time I feel super strong, ready to fight and yet other times I want to tell every doctor involved in my care to buzz off. It’s not easy to have the complicated case, the “we’ve never seen a case like yours” case. Trust me, its not fun to be special. Right now, we just try to navigate these waters the best we can. We take the good days alongside the bad days and try to remember that God is faithful.