Plot twist

We weren’t awake long before the day nurse came in and said you’re NPO, no food, and are having an ablation today. Have they talked to you? Um, as a matter of fact, they have not! Not long after, the EP came in, followed by his budding fellow that we talked to yesterday. This is our first time meeting him; our cardiologist said he is likely the best EP in Texas. They spoke more about the arrhythmia, which is coming from the atrium. He thought it was coming from a part that shouldn’t send electrical signals. This was from part of Amanda’s native heart; I’m still confused about what parts of her old heart were left. 

The EP study will be done tomorrow, not today, which made Amanda happy because she could have her coffee. The procedure will be done under general anesthesia. This is likely because our cardiologist told the EP how hard it was to access her right groin because of all the scar tissue. I remember a Cleveland Clinic EP saying she should never have a study done under twilight sedation because she was so sensitive and had a high tolerance to the sedation medication.

I grabbed coffee shortly after the NPO was moved to midnight. My buddy, the StarB’s security guard, was back and welcomed me with a fist bump. I also found a new way to get back today. I sometimes go out of a door I can’t return through to save going over the sky bridge. I go by a parking garage when I take that route, and I thought I bet I could access a tunnel here to go back. I had tried but not very hard to do this in reverse the other day, but when coming out of the elevators, I didn’t think I could make it that way. And I thought I knew why way around here pretty well! I’ll often stop to help people who look lost and point them in the right direction or even lead the way for them.

Dr. Nair, our leading cardiologist, came by with his entourage following closely. Many of the nurses, when finding out who our doctor is, will reply that Dr. Nair is the nicest, with many adding that he is also one of the smartest doctors. He is the director of the Baylor St. Luke’s Medical Center Heart Failure Clinic (where Amanda has all of her follow-ups), assistant program director for the Advanced Heart Failure Fellowship Program, and director of the Pulmonary Hypertension Program. I hadn’t googled him recently, but I wanted to see an update. I remembered he did his fellowship at Mt. Siani Advanced Heart Failure and Transplant Clinic in New York. I also noticed he had many recent awards, including Top Doctor by the Houstonia Magazine (23), Super Doctor by Texas Monthly Magazine (24), and teaching awards from Baylor College of Medicine and The Texas Heart Institute. Let’s just say he’s a badass! And I’m just glad his ass is on our team!

Here’s a video of him discussing his approach to patient care and the Baylor Heart program. We agree 100% with their team approach and how he, specifically, is a great advocate for his patients. We may not have gotten the transplant if he hadn’t put up a fight for us. Amanda’s case wasn’t cut and dry, just like now, it was a complex case. God took us through all the other doctors to get to the right one. Including one Amanda loved, a female doctor who would pray with her. She was why we ended up in Houston and then transferred to Dr. Nair’s care. He is now our longest-running cardiologist or doctor in general, for that matter. Needless to say, he has been our favorite doctor throughout all the years of seeing countless doctors.

We learned a lot today, and the plan has changed or just been discarded now. He treats a male patient who had rate issues but no antibody issues and a female patient who has the antibody issue without definitive biopsy results, like Amanda. He mentioned both, saying Amanda is a mix of both cases. 

I asked about the PICC line, which may happen today, but we’ve been on hold since Friday. I asked if it could stay in when we went home to use for future chemo-style treatments. He had mentioned they’d be once a week for 3-4 weeks, then lessen over the following months. He then said he wanted to see if the ablation worked, and if so, they may not be as aggressive with the treatment after the PLEX and IVIG. So, it’s an ever-changing plan, and I’m glad he does not get stuck with one specific plan and is flexible enough to take the changes in stride. We are confident in his decision and whatever plan he chooses.

I asked about the native heart that was left, too. I guess I thought they just cut it all out, but some of the old heart was left to be able to sew the new one to. Dr.Nair laughed and said it was like an old boyfriend, referring to the old heart left, still causing problems! Some of this, he said, they just have to throw their hands up and say, I just don’t know why this is happening. I think that is why they have taken a conservative approach to treating her at a high rate. The EP fellow mentioned we had thrown meds at the rate, doubling the med that she was taking to lower it, and added back another that she was on long-term before the transplant.

With so much happening today, I wanted to update on the new plan, EP study, and the possibility of an ablation. With the previous sinus node ablations that were the precursor to all the significant issues we had, it is a little scary. I texted a few for prayer. I asked this: prayers they find the exact problem, fix it, no other damage is done to her heart, and they don’t have to go back in. I’d also add that this fixes the issue so well there won’t be the need for the drastic antibody chemo-style treatment. I’ll update tonight on the rest of today.