As you may recall, I have been participating in the Meteoric – HF study since late December 2019. All was going well till we hit the pandemic detour in the road. I began to wonder if I would even have my April 3 study appointment. The purpose of the appointment was to track my symptoms if any, to track the impact on my heart failure, and to issue new study medications. It seemed like many appointments in a doctor’s office or hospital were being canceled unless they were for emergencies.
But the week before the appointment, the study coordinator called to tell me that I was still on the schedule to have the appointment, but it would be done at the circle of one of the hospital buildings. They did not want me to be inside the hospital environment. The day before, she confirmed that the appointment was still on to see both her and my study doctor, but it would be a drive-through appointment and I would not get out of my car. I thought: "Well this should be interesting." I also couldn’t resist asking the question: "Can I get french fries with that drive-through appointment?" (Hey – if you can’t keep your humor intact during this pandemic, it seems to me like you’re toast!)
I called the study coordinator as I was leaving my condo. I saw more cars on the road than I expected, but I arrived maybe just a minute or two later than I expected. When I got to the circle of the hospital building it was eerie. The only activity I could see inside the building entrance was a few people in masks and scrubs standing around by a cart filled with hand sanitizer, gloves, etc. I called the study coordinator and she came out all suited up in scrubs, mask and gloves. She handed me through the car window bio hazard bags containing gloves and a mask.
I did a fine job getting the gloves on, but putting the mask on was comical. For one thing, it was a bit dark inside my car. I could not differentiate that one side of the mask was white and the other was light yellow. I put it on and the study coordinator said no, the yellow side needs to face out. So I turned it around even though I was clueless as to the color Then I tried to adjust it over my nose and mouth without benefit of a real mirror (no the rear view mirror doesn’t count). I do not recall ever wearing a medical mask before and I guess it showed. I probably looked like a little kid on the first attempt to tie her shoes. The study coordinator started to chuckle. I looked at her and she said: You need to put the band up over your nose and then pull the pleats down over your face.” I followed that advice and tried to make the adjustments without actually touching my face, which is forbidden in the corona virus era.
The study coordinator handed me the Kansas City Heart Failure Questionnaire. This is a document that asks a lot of questions to determine if your heart failure has worsened, improved or stayed the same. I usually zip through this, but I heard the study coordinator say "oh, here's the doctor." So I put the questionnaire aside. He came by the car window and said he would be examining me but without touching me.
He asked me to turn my head to the left because he wanted to see my neck. I turned and he looked and said, "That's good." Of course, I had to ask the obvious question: “Tell me, what can you tell about my heart by looking at my neck.” He said that by looking at the vein on the side he would be able to see if it was filled with fluid or if there was an abnormality. He also looked at my legs to see if he could see any fluid retention. I never have any water retention there, and Friday was no different. Then the doctor asked me if I had the chance to take my blood pressure and I said yes, I took it in the morning. Happily, it was an acceptable reading, which for me is always a victory. (Although I will admit that my blood pressure seems to be on the rise since I started taking the study drug.)
He asked what I was doing for exercise and I told him about the early morning walks and the quick zips in and out of the grocery store. I asked him if it was okay to continue to do this as long as I wore a mask when I was in stores, and also whether I should to wear a mask on the walks. I breathed a sigh of relief when he said I could continue to do these activities, and that yes masks were needed in the stores and on walks if at any point I might encounter people in close proximity to me. So I wear a mask on walks as well as a precaution.
Before we ended our conversation he indicated that these precautions could go on months. I didn't particularly want to hear that, but I guess it is better to acclimate to it now and just know that with the help of friends and family I will get through it.
I also talked to the doctor about something I have not yet referred to in this blog. Just a bump in the road that surfaced recently based on data reviewed from the bedside monitor. The monitor queries my heart device in order to check my heart rhythms. I told him about the atrial flutter that the heart monitoring people detected back in February and the extent of the flutter. Happily, he was fine with my decision to not resort to blood thinners at this point because of the low burden and length of the incidents. I told him I would be doing a Zoom visit with a physician's assistant on April 13 to see if the flutter was still there, worse or better. I also made it clear I was keeping the study monitor apprised of any news on the atrial flutter issue. At that point thanked me for coming in and said goodbye.
I finished up the questionnaire quickly but there was one question that caused me to laugh: "Over the past 2 weeks, how much has your heart failure limited your enjoyment of life? Like seriously? I put never, because it isn’t the heart failure that is taking the fun out of life. I wanted to put an asterisk by my answer and write in a notation: Concern over heart failure replaced by pandemic panic. I finished the questionnaire and turned it in.
The last action of the appointment was that I gave the study coordinator my leftover meds and she gave me new meds for the next 7 weeks. From what she said, it sounds like this is pretty much all the meds I will receive at this point. That is not a bad thing because the study was to end around May 20 anyway with me coming into the hospital for a cardio pulmonary exercise test (CPET). So I will get the benefit of the meds for the entire study. However, it looks like the CPET is now off the schedule. They don't want me entering the hospital while all this virus stuff is out there.
Of course, I do not know if I have the real drug. The study team doesn’t even know if I have the real drug. But I have noticed on my walks that I can get up inclines that used to be tiring and now I don't feel winded when I get to the top. Plus, I’m walking at a faster pace when I go up the inclines. I think this is a good sign. I asked the study coordinator if I would notice an impact assuming I had the real drug and stopped taking it. Or would I maintain any progress I've seen but not have any further improvement. She said that was a question for the study doctor and she would have him e-mail me. The drive through appointment ended at that point.
I don’t know where the heart GPS will direct me now that the drive through appointment is over. Hopefully the rest of the medication, if it is real, will continue to strengthen my heart.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.