Not All Cardiac Rehab Programs Are Alike

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!

Easiest Praluent Refill Approval in History

Caveat: this is not the norm! 

I have talked about this before (https://livingwithfh.blogspot.com/2017/04/a-helpful-health-insurance-alas-there.html), and as anyone taking Praluent or Repatha knows: ordering a new prescription or even a refill can be a pain in the rear-end. You always get denied by the insurance, always turned around, even when you know your reasoning for asking for these drugs is legitimate. They don't seem to care. It's not the first time when you realize that health insurance companies are not in the business of saving lives, but in that of making money. Pretty much a platitude, right?!

So, when it was time for me this month to renew my Praluent (this would have been my third renewal), I started an online journal. I wrote down the name of every person I talked to at the insurance company, at the specialty pharmacy, at my doctor's office and I was prepared to document every step of the way so I can show someone, anyone, where the process seemed to have been broken, should I be denied.

I took very detailed notes. I talked to the insurance first. They told me they cannot, by law, call my doctor; that they make up the list of questions / reasons for which I should be on Praluent, and that I have to call my doctor myself and have them write up this note with all the reasons that are approved by the insurance of why I should be on it. Then, the doctor has to fax this note to the insurance company. Then, the doctor has to also call the specialty pharmacy. When the pharmacy gets the call from the doctor that I was prescribed this drug, they cannot fill it unless the insurance approves that prescription. So, the pharmacy would call the insurance and the insurance would have had the questionnaire filled out from the doctor's office and would give them the OK (based on what the doctor answered) to fill the prescription. Or … they would deny refilling it.

If your head hurts, it should. The process is a spiderweb of convoluted bureaucratic loose ends and it is not designed for ease of access.

This year, I am also in a new state, and have a new cardiologist who is not the cardiologist that originally prescribed Praluent to me, two years ago. So, I was doubly nervous: I had to renew my prescription (so, renew, after originally having been approved) twice before and I was denied several times before during the renewal process. I knew this time would not be any different. Plus, not really being familiar with the staff of my new cardiologist, I was even more nervous that I would get denied so many times, an appeal would not even be possible anymore.

But sometimes, by the grace of Karma, or God, who knows?!, our worst fears are not met. I went to my new doctor and explained the maze to him. He smiled and told me to not worry about it, that the process has become easier over the years and a renewal is much easier than ordering a new prescription. I was dubious. I gave him the list of questions that the insurance needed answers for with the fax number for my insurance. Then, I gave him the phone number of the specialty pharmacy saying that I needed him to order the drug from the pharmacy. I was so scared he might get the two numbers confused: the insurance needed the questions answered and the pharmacy needed the prescription. And I talked to the doctor, but I know he is not the one actually doing all this, that his assistant or nurse might do this and between me telling him and him telling her what is needed something might get lost.

When it was time for my normal refill, I called the pharmacy to see if they had received a call from the doctor yet and could they please call the insurance for the OK. When I called them they said they did receive the call from the doctor and they also received the OK from the insurance and if I wanted, they could send me the new refill in a couple of days. I asked them, still dubious, how many refills I had with the newly renewed prescription, and they said 11 – that the new prescription is valid for the whole new year. I was in awe! This had to be the easiest Praluent refill in the history of Praluent.

To the time I write this, I am still not sure what changed: either my new doctor has had more experience with ordering these drugs than my previous one and he did tick all the possible boxes requested, or the health insurance/ specialty pharmacy business has gotten a little bit less rigid?

Not sure.

The couple of things I made sure that my new doctor had were:

• the results of my genetic test that shows I have HoFH
• the total Cholesterol and LDL Cholesterol numbers from before I started Praluent and the levels I am at now
• my history of CAD and heart surgery.

Hopefully that's all they needed and what he sent in.

Like I said: not sure what worked, but I am grateful it went well.

Now, the next big bump is renewing my benefits later this year: I am hoping that my employer will continue using the same insurance as we have now. Changing insurance companies at the end of this year would mean starting this process over with another company – and that, I know, and my doctor agreed, is much harder. Hoping for consistency going forward!

Good luck to all who are going through this process! These drugs have been a real live saver for me!