In January 2016, I was sure that I was beginning a period of heart health progress. I had a better echocardiogram result, I was exercising at a really good pace, and my weight was starting to trend downward. It seemed like everything was right with the world!
Unfortunately, February brought some disconcerting episodes. There were a number of times when I was exercising and had to slow down for a short time because I was experiencing shortness of breath. I also began to notice that my weight was starting to creep upward just a bit. I was starting to feel more fatigue than I had in a while and some episodes of dizziness in the morning. When this first started to happen, I had just completed a colonoscopy. So I thought it was possible that the preparation required, and the procedure itself, may have caused a temporary setback. I assumed I would get back to normal soon.
However, I didn’t perk back up within a few days. In fact, it was quite the opposite. During the latter part of February, I took the train to Richmond, Virginia for a visit. On the day that I was returning the train was running late. So my sister and I stopped at a mall to do some shopping while we waited. I remember clearly getting into the mall and thinking “all I want to do is sit down and rest.”
I had been complaining all day to my sister that I felt tired. So she looked at me and said “you set the pace.” All I wanted to do was say “How about no pace?” Instead, I noticed a seating area in the mall. I asked her if she minded if I just sat there while she went shopping because I was feeling tired. She went into a store and looked at what she needed and then came right back. I could tell she was concerned.
She waited with me in the train station until the train came to make sure I was going to have enough energy to get home. I did not want her to worry. While I was still tired but I thought the time on the train would give me some time to rest. But to be honest, all I wanted to do was get back to my own condo where I felt safe and where I could relax. I made it home about 3 or 4 hours later and let my sister know that I had arrived home safely.
I had an appointment with my cardiologist at the end of February. The nurse did an EKG, and the results were fine. My blood pressure was low again, but the nurse looked at the chart and realized that this was just how Melanie is wired.
When my cardiologist came into the examining room I told him about the more pronounced dizzy spells I had for the week after the colonoscopy procedure. I told him that there was a lot of other stuff going on too - the getting over the anesthesia, sinuses and allergies, atypical migraine headaches. I just seemed to get them all at once and that triggered some pronounced dizzy spells for a small window of time in the morning. He was not concerned as long as I didn't pass out, which of course, I didn't.
I told him what had been going on that week with the extra weight that appeared, and the feeling short of breath. I told him him how I had felt in Richmond, and included the incident in the shopping mall. I also told him that the new pharmacy provider had given me a different brand of generic Lasix (my diuretic). He checked the weight taken by the nurse. He said it was in the range of where I had been in the three years I had been coming to see them. We discussed the fact that as the various pharmacy providers do switch back and forth between generic drugs and that sometimes it takes a while to get used to it. So he suggested I try it for another week and to continue to do as I had been doing - if there was a period where I am a little up in weight, then I needed to take more diuretic until it gets back to normal. Fortunately the latest blood work that I had done was good, so it wasn’t as though we feared a serious u-turn in my heart.
In early March one morning I was on the elliptical and I had to pause several times for short rests. I finally gave up after about 20 minutes. The reason I stopped each time was I started to feel winded and a bit of a sore feeling as I was breathing in air. Then I would stop for about 15 seconds and start up again and be okay for a few minutes. I had not felt anything like this in a very long time. The good news was that I did not have any shortness of breath at all when I was in bed, and I don’t need to prop myself up on pillows. I had also recently received a report from the Heart Monitoring Center that showed that my numbers were all fine. And my friends thought I looked great. I was at a loss for what was going on with my stamina and reached again out to my doctor.
I told the doctor that I had done some research and decided that it could not be the switch in the generic of lasix that was a problem, as I had used this form in the past with no issue. But I had noticed that the new pharmacy that my health plan required me to use had issued a different generic version of carvedilol. Carvedilol is the beta blocker, the heart drug that blocks adrenaline. I was on 50 mgs per day of this drug. I asked the doctor if a switch in the generic could have an impact on my overall heart health. He suggested checking to see if my pharmacy could switch me back to the generic version that I had been taking of carvedilol.
My retail pharmacy could not switch to the generic version of carvedilol that I had been taking because their contracts were with other manufacturers. However, my health plan also has a mail order pharmacy. I called and the representative told me that if I could get my cardiologist to write me a prescription for the specific manufacturer of the carvedilol that I had been taking, they could special order it for me. The doctor sent the prescription to the mail order pharmacy as soon as he received my request.
Within a week of switching back to the old carvedilol, I felt a thousand times better. The weight gain was gone, the energy was back and I was able to return to my old exercise routine and schedule. I do not know a lot about the generic approval process but I think there can be some variance in the formulation between the generic and the brand name. If so, it stands to reason that there can be some variance between each version of a particular generic
Let me acknowledge to all medical professionals out there that I have no expertise in the area of prescription drugs. I also do not know if there is evidence that switching from one manufacturer's generic to another can impact a patient. But I do have a Melanie expertise, and I know that my body, and perhaps my heart, seemed to be able to tell the difference between the two.
So now that I know where to get the version of carvedilol that works best for me, I just need to keep on top of my prescriptions to make sure that any prescriptions to renew the special order are promptly submitted to the mail order pharmacy, especially as it seems to take a little bit longer to get a special order filled, I guess because the source of the medication is not the one that is normally used. I have also had one shipment that appears to have been delivered to another address but eventually was delivered to me. So I know that i need to be on top of the ordering and delivery process.
I learned a big lesson. I keep track of the various drugs I take and who manufactures them. (Isn't it lucky that I just happen to be a detail oriented person). If the pharmacy switches to a new generic, I monitor closely to see if I can detect any changes to my stamina or my body. The bottom line is that while the beta blocker is a wonderful thing, it only works when it blocks my stress – not when it blocks my progress.
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.