Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
It’s been a while since we chatted. Life seems to have sped up there for the past few months. I guess it’s good when you make plans but even better when you get to carry them out. But delay no longer.
I have been traveling, mostly. Some of it for work, and some of it for pleasure. Since the beginning of August, really, I have been hopping airplanes and Marriott hotels like it’s my full time job. I am tired. I won’t lie. I am doing it, mostly alone, but it’s taking a toll on my stamina.
During this whole time, I have also worked full time and have carried on with my cardiac rehab appointments, sometimes as often as three times a week. Just writing this makes me yawn.
In September, my regular doctor did some blood tests to check for a few things, but especially my cholesterol and liver values.
The good news is that my cholesterol values are at an all-life low. It is truly unbelievable how well drugs work for me, and how lucky I am. Not even one hour of apheresis in my entire life, and the drugs I am on just dropped the cholesterol this much. My LDL is still not at the target that the doctors want, which is below 70, but I am happy with it. News like these don’t happen often for HoFH patients!
The bad news is that my liver enzymes continue to be elevated. This trend started two years ago when I added the Coumadin, an anti-clotting medicine, after my heart surgery, as well as the Praluent injection. Now, my doctor is ordering a liver ultrasound to understand what is going on with it, if it is visible on an image. I am not really sure what the course of action will be to try to get the enzymes back to normal. Although I do have pain in my upper-right abdomen, I have virtually no other new symptoms from all this medication which seems to work so well. But … we will have to weigh the good with the risks and make some decisions pretty soon.
During one of my work travels, I had the chance to go back to Utah and meet with my surgeon for my yearly appointment. He insists that he still wants to see me every year till further notice. I love this, because I love him. What he has done for me, the life he has put into my remaining years is absolutely humbling. He was truly scared when he realized I had not only had my recommended yearly echo but also an angiogram since I saw him last year. He thought that something bad happened that required the angiogram. I explained that because I had moved to another state, I have a new cardiologist who is trying to understand my angina symptoms and explain my weird blood pressure numbers. Part of that quest was the angiogram to figure out whether there are severe blockages in my heart. (https://livingwithfh.blogspot.com/2018/05/another-cath-some-more-answers-and.html)
I shared with him that the same blood vessels that were 99 and 90% blocked before he did the surgery are now between 30-50% blocked. I asked him how could that happen, because as I said before, I cannot credit the Praluent alone with this huge improvement. He reminded me that not only did he bypass the blocked arteries, he also performed endarterectomies (https://en.wikipedia.org/wiki/Endarterectomy) on all of them. He also reminded me that it is clearly written in my operative report which I have. Now, if I didn’t just chalk this up to a “fancy medical term” and I would have actually looked it up, I would have known. But I did not. Now, why didn’t my current cardiologist know this, when he has my operative report himself, I am not sure. The cardiologist looked puzzled that I had bypasses at all because the main arteries were in good shape. Again: many thanks to my brilliant surgeon!
He said he not only bypassed them “he also cleaned them out for good measure.” I am telling you – the man is a saint! So, now the mystery of my virtually clean heart arteries is solved: endarterectomy + bypass grafts = functional arteries.
As I mentioned briefly, I have also been going to rehab since August, too. I am still very much underwhelmed with this program: there is not much monitoring, or explaining what is going on. We write our BP and pulse values in our charts ourselves. How long or fast we exercise seems to be up to us only. Whether it’s because of my very fast lifestyle this year, running through airports with heavy carry-ons, or rehab, my stamina seems to be much improved and my breathing is also a little less shallow and my chest a little less painful when I exercise. We have this steep hill in our neighborhood and every time I climbed it until recently (maybe a month or so ago), my chest would tighten and my left upper body would be completely numb and painful. These symptoms are gone now, and I can climb the hill, still slow, but with no pain.
I am sure that since we moved closer to sea level (we were at 4000 ft in Utah, and we are at 500 ft now), my breathing has gotten deeper and my heart feels better overall. Every time I go to Utah for work now, I clearly see the difference between how I breathe at home and how I breathe there.
There are days when I want to call the cardiologist and quit rehab altogether (still have 17 sessions to go – argh!), but I am really hating having to argue with him. He believes very strongly in this rehab business and that this alone will improve the blood flow in my heart, grow new arteries, and improve the pump function. I might just stick it out. Or at least I will try my best to for as long as I can. Trying to balance work and travels with a very strict rehab schedule, though, might decide otherwise. If I truly saw the full benefit of this exercise alone, without what I do on my own, I would definitely put my health first and finish the 36 sessions that come with this program. But I don’t see that going in for an hour and 45 minutes a couple of times a week and walking on a treadmill (which I can do at home, with no schedule, no driving for an hour one way, etc) makes that much difference for my health. We shall see …
I hope that all of you had a great summer and are having a beautiful fall. I hope you are ready to close out this year in health and peace.
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.