I had my appointment at Tampa General yesterday. I was incredibly anxious about it—for no good reason, really—and it went very well.
We arrived a bit early, got all registered (which included scanning my palm, which was a new one on me!), but weren’t waiting long at all before we were called back. I was weighed and height-measured (had to take off my shoes, so no extra inches), and then had a blood pressure check, 12-lead EKG, and had all my current meds put into their system.
It was only a few minutes before a tech came to get us for the echocardiogram. It was in the same block of rooms, which was very handy; I was expecting to be sent to a different part of the building for it.
Next we met Tammi, who is one of the transplant coordinators. The transplant coordinators are specialized clinicians with a background in nursing who work with the doctors and everyone on the service to manage each patient’s care. It’s important to note that working with a transplant coordinator doesn’t necessarily mean that I’ll ever actually have a transplant, but my situation makes me a candidate, so these folks are the ones with the necessary expertise to help me.
Tammi was fantastic. She had reviewed all my records thoroughly, so I didn’t have to repeat all of that, and she knew much more about me already than I would have expected, including that I work with crime fiction authors and publishers. I was really impressed with this, because it told me that she had taken the time to learn not just my medical history, but also about me as a person. She explained how things work at TGH; most importantly that their goal is to prevent me actually needing a transplant for as long as possible. We asked some initial questions, and she was patient in answering them all thoroughly. She was friendly and upbeat, not even a little bit condescending, and had a great sense of humor.
Then we waited a little while (all in all, it was shocking how little we waited!), and Tammi returned with Dr. Mackie. He had reviewed my echocardiogram; my ejection fraction is still 20-25%. While this is still lousy, it hasn’t gotten worse, which is good news. Dr. Mackie was great. He was straightforward and not the least bit arrogant. He gave us honest and clear answers to all our questions. I can see why Dr. Desai and Dr. Cintron speak so highly of him.
Dr. Mackie explained that ideally, they would like my carvedilol (Coreg) dose to be at 25 mg twice a day. I’d been at 12.5, and he said we might not be able to get to 25 (if it makes my blood pressure too low for my body to tolerate), but he raised it to 15.625 with the goal of getting it to 18.75 in the near term.
He also added 20 mg of pravastatin (Pravachol) once a day to my drugs. This is a statin, normally used to treat high cholesterol. My cholesterol isn’t high, but Dr. Mackie explained that there is lots of research showing that taking a statin is beneficial for heart failure patients—and everyone else. So much so, that the EU is looking at making them over-the-counter rather than prescription.
We talked about the stress test I had back in October in Boston, and he explained that he wants me to do another one, which makes perfect sense. I feel much better now than I did then, and I’m confident the result will be better than it was then (I was at 45% of what someone my age and weight should be). He said they want to have an accurate baseline to track me over time, and this is one of the best objective tests they have for that.
We talked at some length about the implantable cardioverter defibrillator (ICD). I had a bunch of questions, all of which Dr. Mackie answered thoroughly, clearly, and patiently. He agrees with Dr. Desai’s assessment that I should get one, and the most important question I asked was if I was his family member, he would recommend it. His answer was an immediate and without hesitation, “yes.” So the next step is for me to see the cardiologist who specializes in electrophysiology for a consultation (they’re the ones who actually do the procedure), and he will then schedule the implant. There are two doctors at TGH who do this, and I was gratified that Dr. Mackie’s preference for the one I should see is the same as mine.
Tammi is setting up that appointment for as soon as possible. They’re scheduling these procedures about three weeks out at the moment, so it’ll be a month or so before I have it done. When I go for the consult, I’ll have more questions, mostly about the specific device they recommend for me. Dr. Mackie explained that if I have the implant done early in the day, I probably won’t have to spend the night in the hospital, so fingers crossed for that (I really don’t want to spend the night in the hospital if it can be avoided!).
So we got a lot done! Next up is the eye (retina) doc appointment this Friday, then the electrophysiology cardiologist, then the ICD implant, then the stress test and another appointment with Dr. Mackie, which is scheduled for June 1.
Whew! So it’s been quite a week so far. Your mojo is powerful, friends, and appreciated more than I’ll ever be able to say.