Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist.
The reason he sent me back is because I still have shortness of breath, I still have a chest squeeze and a pronounced numbness in my left arm, shoulder blade, and collar bone when I exercise even “a little bit”. Or whatever they consider a little bit. He doesn’t think this is valve related, although the On-X mechanical valve I have is leaking a little bit. But not enough to make a difference in symptoms, he says. But enough to cause my large gap between my systolic and diastolic BP. He sent me back because he thinks the symptoms come from the fact that my smaller arteries are still clogged up with cholesterol (because of my FH) and my heart won’t grow new vascularization unless it’s very active. Since I am limited by my symptoms, I cannot exercise enough to grow new blood vessels, therefore the need for cardiac rehab, to recondition my heart and also monitor what it’s going on when I do exercise.
And this is where the disconnect happens. I have just ended my first week in rehab (the second time around, like I said). This time it’s a different state, facility, medical system than before and it is by leaps and bounds different from how my first experience was. This time, it feels like just going to a gym all by myself, with the only difference being that there are spectators around me watching my exercise. But that is all they are doing. Almost.
They do take our blood pressure when we walk in and when we walk out – and we need to record it in our folder ourselves. But they don’t take our blood pressure as we exercise (they did the first time I was in rehab – several times, in fact).
We do wear a monitor that we hook up to our chests ourselves when we walk in (I pray every time that I do it right, but who knows?!). And they tell us that our heart “looks fine” because the monitor talks to their computer during our exercise. They said they would tell us to stop exercising if they see any EKG modifications. But it’s like 10 of us and one nurse looking at the monitor and doing 10 other things, so I am not sure how they would be able to catch the modifications as they happen. She doesn’t seem too focused. When I first went, we had an assigned person who would monitor just us the whole time we were exercising.
We have to pick our own machine that we want to exercise on, and we need to use that machine (treadmill, two kinds of bikes, elliptical machine) for 45 minutes. How fast, or steep we go is our call, but they do want us to reach our “maximum heart rates” which they base on our weight-height-age. After 45 minutes, we all go to the strengthening and relaxation room and exercise in a group as we all follow the physiologist in strengthening exercises for 20 minutes before we slow down during the relaxation time, which is roughly 10 minutes (that is a total of an hour and 15 minutes, if you didn’t count).
During this whole time, you have to write down in your folder your own numbers: how fast you walked on the treadmill, your speed, your length of time and your RPE (Rate of Perceived Exertion) – in other words “how strenuous” you think your exercise was. They only take your blood pressure when you walk in and when you walk out, so when you are rested. They tell you what the highest heart rate was during your cardio exercises and you write that yourself in your folder. They ask you to take your own pulse at the end and record it in your folder (thank you, Apple watch! – almost everyone in the room is counting theirs themselves).
This was all done for me by the physiologist, and my blood pressure was taken 3-4 times during the cardio exercising the first time I was in rehab.
This past week, the physiologist I worked with the first day said there “is no need for them to take my blood pressure during my exercising, because by looking at my history she does not expect my blood pressure to drop.” She said that she expects it to rise with exercise, which is perfectly normal, but not drop. I was dubious, so dubious that I was speechless and didn’t argue that nor told her about my jumping blood pressure for no reason at all. I also did not tell her about the regular huge gap between the BP numbers (which is my number one concern) and which I would like to see/ understand whether it can be cleared by exercise.
The second day I went in, the second physiologist asked me if I have questions and I told him that I was not expecting to be monitored so little in a program that is branded as a highly medically assisted one. I told him that the first time I was in rehab, my blood pressure was monitored closely and the numbers were not good, but they did show that my heart is not happy when it’s pushed too far. I also told him that my cardiologist told me they would do a stress test before I would even start rehab so they’ll know my limits, rather than tell me what my limits are based on my weight, height, and age. Given the condition of my heart, my limits should be lower. They never did a stress test before I started this. They said, however, that they based my limit on the stress test my cardiologist did in March (5 months ago). But even that one was different than the one they had done in December last year (9 months ago), so my heart is always changing, it seems. Don’t they want to know what it’s doing now?! Apparently not.
He apologized hurriedly and he said “oh, we can do the stress test any time during the program, no big deal.” But for now, he said, let’s try to get your heart rate at least above 90 (my goal was 119, apparently, based on the last stress test they had access to see, but he wanted it at least above 90 given that the first day I was there it was only 86). Although I did put an RPE of 9 the first day when I exercised on the bike, indicating that I was very tired and breathless during that day, had my chest squeeze, he still wanted me to do more the second day.
So, I tried. I also told him one of my biggest concerns is my blood pressure and I am surprised that they do not monitor it during my cardio. He said he will monitor it that day closely. So, with me pushing myself and him taking my pressure, off I went.
My blood pressure climbed up to 155 over 55 (yes, the diastolic is always that far from the first number), and at that point I was out of breath completely. He said I was not at 90 yet, I was still at 86. I told him it’s hard to really make my heart rate go really high because I am on atenolol, too, which is designed to keep the rate low. He then eased up and let me slow down. OK. Now, they got what they wanted: they stressed my heart out enough that I was a 10 on the RPE scale. My rate was 89!!
My left arm, shoulder blade, and collar bone were completely numb at this point – this is when he was really sold that I should slow down. And then, all of a sudden I started feeling very dizzy, very light headed and like I was going to faint. He took the blood pressure again, it was 142 over 50. Two minutes later, if that, he took it again: it was 106 over 34! So, in like 5 minutes, it went from 155 over 55 to 106 over 34. I thought I was going to faint!
They asked me if I should take a nitroglycerin, and I told them that usually I just wait it out and all this discomfort goes away on its own – so they left me be.
I didn’t do the strengthening exercises that day. I just got some water and waited for my balance to come back so I can drive back home. I felt horrible the entire rest of the day.
The third day I went back, I took it very slow: my heart rate went up only to 79 (it is usually between 54-60 when I walk in), and I did reach an RPE of 7 on that third day, so I exercised within my own comfort level. I do not want to try to reach their weird goals because those are not MY goals! I know I am not a doctor, but I feel like my heart will never be an athlete’s heart – this is not out of laziness and hypochondria, but it is out of being in touch with my body and knowing what it can and cannot do.
I still believe a stress test would have given them a more accurate picture of where I am today. Now. I flunk every test they give me – they all have a goal and I come way under that goal but my symptoms start way before I am anywhere near that goal. And when I do exercise, normally, on my own, I never push myself as hard as they always push me on the treadmill of a stress test (my goal for my age/ weight/ etc is 150 BPM – I have never been able to reach that). And even with me not pushing that hard, the symptoms are there.
It was the first time in rehab that they diagnosed my weird BP, and when they found that sometimes my MAP (Mean Arterial Pressure) is too low. And when this happened, I would start seeing symptoms, too – so the symptoms were heart related. This time, no one else in the room gets their blood pressure measured during their exercise till they actually can no longer do what they are doing. Definitely a different approach, maybe not as proactive as the first crew I was exposed to.
So, not so sure about this second go-around of rehab. I feel like they are not monitoring us closely enough to really understand each of our needs – had I not spoken to the second physiologist, they would have never found out about my jumping BP during exercise because the first person said “there is no concern that it would ever drop.” Now, he said (promised, even) that he would take it during my exercise every time I go in. He did tell me he would push me harder as time goes by but honestly, after the episode I had this week I wonder if that’s even safe. Maybe the limitations in my heart will never get it working as hard as the doctors need it to work for the blood vessels to grow again, or the circulation to improve?!
I used to encourage people about going to rehab, because my first experience there was really good; it really gave me the confidence I needed after a very involved surgery that my heart CAN and will get stronger again. But now I understand why some people saw no value in theirs – because every place is different and some places are really not working with you to understand, explain, and monitor you so you know what is happening with your heart. Some places are really just a gym with heart monitors. But those who know me know that I’d rather know more than less.
All I can say is: always speak for yourself. If something does seem off, speak up, ask questions, be curious, know your numbers, challenge them – they owe you at least an explanation, even if they’re not willing or able to make a change. At least that. Much health to all!
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Blog Post by A.W.
About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.