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Change seems to be the theme this week, and for the most part, that is a good thing. The biggest news is that, for multiple reasons, I will be changing to a different primary transplant cardiologist within the same team in Florida. My current primary cardiologist is leaving later this year, and if I had known that, for sure, before approaching him with my concerns, I might have slept a little easier leading up to that conversation. Either way, I needed to express my concerns, and I am switching sooner rather than later.

The main concern from my perspective as a patient was that my doctor assigned to me was not as well versed in atypical rejection compared to a couple of the other doctors within the same team. It became apparent that he was learning everything as he was going along with my case. I will always commend someone willing to learn, it’s just unsettling in my case that if he is behind the learning curve, the result is worsening of my condition or death. Add to that the delicate human condition known as pride while learning in that life or death situation and you can have a dangerous mixture. Even in everyday life, I have extra patience for someone willing to learn as long as they admit what they don’t know, so they don’t boldly act on ignorance. This seems like an increasingly rare trait in the highly specialized medical world, and when some questions and decisions came up in my care recently, my doctor made some bold statements that were easy to disprove. A couple of weeks ago, I was speaking to my neurologist about my severe neuropathy that started during my extended stay in ICU in November. It was discovered that one of the medicines I was given has neuropathy listed as the top side effect. When I asked him if this will get better or not, I was refreshed when he looked at me and said, “I don’t know, but I will read more about this and let you know.” I have had too many doctors give me false information in the name of trying to provide me with comfort or just to try to keep the appearance that they have everything under control. You know what really looks like you don’t have things under control? When the patient finds out after the fact that you lied. This is something I experienced in Utah, at Mayo, and at Advent Health.

Also, on a more life lesson level, working with people that have a different thought process, or different threshold for raising the alarm, or overall personality is essential. In hindsight, one issue that played a role in my rejection turning into a more significant event in November than it should have been was that my doctor and I are both optimistic people. We are the type of people that make great friends, not great team members. The optimistic type of doctor seems like they would most effectively work with the kind of patient that would call with every ache, pain, and symptom. They are good at pumping the breaks when someone needs reassurance that sneezing after you smelled a flower too closely isn’t going to cause you to go into rejection, so you don’t need to come in. However, I, in the past have been the type of patient that downplayed every symptom, allowed doctors to explain away the obvious signs tied to heart issues, AND I BELIEVED THEM. The worst part is that I had a doctor geared towards telling you things are going to work out, and I call prefacing my symptoms with my explanation as to why I believe they aren’t anything to worry about. That doctor is more likely to go along with my words than a doctor that is more inclined to have a lower threshold for sounding the alarm and that is pretty much what happened leading up to the major rejection episode in late 2018. Where if I had a doctor that had raised the alarm to the level that my wife had, the outcome probably would have been different.

So, changing doctors isn’t the only massive change around the house. Ashley had knee surgery Wednesday morning, and for once I feel like I can give back maybe 0.00001% of what she has done for over the past 5 years. I was hoping to give back 0.001% but she is very capable and determined as she is in everyday life, so I have had minimal assistance to offer. Her injury occurred when I was in the hospital in November and, working with an Orthopaedic Specialist, they attempted to heal her torn meniscus over a couple of months. Ultimately it became apparent that those techniques were not working, so arthroscopic surgery was the next step, and Wednesday it was proven that it was the right decision. Within hours of having the surgery, she stated that her knee felt better than it had in months and the only discomfort was from the incision sites. In addition to the meniscus tear, the surgeon discovered that she had synovial plica syndrome in that knee which contributed to her chronic pain.

Interestingly, plica is leftover tissue that didn’t dissolve in some people before birth. So, when the knee gets injured for another reason, this can become irritating, contributing to the pain. Since it is just extra tissue,  in a case like Ashley’s it can be removed when it is inflamed with no side effects. Hopefully, her recovery continues on the trajectory that it has over the past few days, and she will be back to running soon….wait…..

Speaking of waiting, I’m still waiting to hear precisely what my MRI results mean. At my appointment on Monday, at my current hospital here in Florida, the radiology report states that the fibrosis on my heart is minimal, which if you recall is excellent news. But nothing in my case has been that straight forward like that, so I shall throw you back to back caveats. A cardiac MRI is the most accurate way to tell Ejection Fraction (EF), or what percentage of blood the left ventricle can pump out in one beat. I haven’t had a cardiac MRI before, but previous echocardiograms, which inherently have a vast margin of error due to human subjectivity,  have shown that my EF was around 30 and 35 percent. The MRI shows that my EF fraction is now at 30%. So despite not having a lot of fibrosis on the heart, my heart has yet to show any improvement in it’s pumping ability, which doesn’t look good. The caveat I’m holding on to some hope now is that this is from my doctor in Florida, who wrote my heart off as no chance at recovery in February. Cedars-Sinai was the team that ordered this additional testing believing that there may be further hope for my heart. Hopefully, they know of more advanced techniques or drugs to improve my heart. I have yet to hear from them.