Huge Milestone for Me: Cardiologist Visit and New Drug Therapy

Hard to believe that it's been two months since my heart surgery already (two days ago), but time is not asking us to pass. It takes its own liberty to do so.

Although I have seen tremendous progress for which I am immensely grateful, my body is still trying to adjust after getting hit by that proverbial truck, a name a lot of us, members of the cracked chest club, call OHS. Aside the progress I see in moving more freely and having less and less pain every day, the biggest benefit from this is that I feel that my heart is stronger. Even with the occasional palpitations and low blood pressure, I seldom run out of breath when I do my walks, or walk up the stairs – which was a constant in my previous life. So, so grateful for this!!

There are still a few things I am not able to do. Definitely the biggest complaints are the consistent pain, and the daily, hourly fatigue. I max out on energy after about 3 hours of any activity– which does not make me be in any position to restart work, not even part time. I wish my disability insurance would get this – I have been fighting with them for the past three weeks to make them understand that my body is not ready to return to work. My HR folks get it, but not my insurance. Go figure!

Apart from pain and tiredness, and the consistent numbness in my left arm, leg and left hand side of my chest, there are random “weird” things like seeing stars or dark patches sometimes, occasional, very loud ringing in my ears, dizziness – things that worry me if I were to drive on my own, with no one else in the car, like I would, for work.

I am also still anemic – with a low hemoglobin and still taking iron supplements. I am also still at 95 lbs, 10 lbs less than before the surgery – pounds I did not need to lose, but I can't seem to gain back, no matter what I eat.

I am told by all the medical staff that all this is normal, and all this is temporary. I am told that time will heal all this, and not to worry about the temporary discomfort. So, we wait.

Today was my 2 month follow up with my cardiologist. He tweaked more drugs, and made another laundry list of follow up and specialist appointments, too. In other words: the normal, for me.

Some drug changes: he half-ed my daily dose of beta-blocker, to try to stop my blood pressure from being so low (my diastolic pressure has been in the upper 30's, 40's and low 50's since the surgery). He is keeping me on zetia, too (more samples of that, since it's so insanely expensive, with everything else I take). He is adding a brand new drug, Praluent, to my anti-lipid cocktail (more about it below). 

This was the content of my bag after my appointment today. Got drugs, anyone?! 

In referral/ follow-up appointments area, he wants me to start seeing a vascular surgeon, for my blocked carotids – maybe I need surgical intervention there, too?! He also ordered my 2 month follow up heart echo for next week, to see the state of my valves and aorta. As you might remember, my mitral valve has trivial regurgitation now and a calcified leaflet. So in addition to keeping an eye on what has been fixed (ascending aorta, aortic valve/ root, the four bypasses), we need to continue to keep an eye on what's adjacent and has not been fixed (aortic arch, mitral valve, etc).

As I mentioned above, I have accepted (finally, some might say) to take the new drug for cholesterol, the PCSK9 inhibitor, Praluent. I have known about the research for this drug since around 2008-2009. I have been asked to be in the research for it since then, but I continued to be skeptical (still am), since little is known about its side effects. It was approved by the FDA only last year (July 2015), and here I am, not even a year later taking the bi-weekly shot. I am scared and nervous, but I do want to get those cholesterol numbers down to a normal range.

My cardiologist has been the head doctor for the research on Praluent since 2011 (5 years this year) for our state, so I feel in pretty good hands with him administering this to me and checking my progress.

After never having a normal reading of cholesterol ever, in my life, and after seeing the damage it has done to my heart in 41 years, I am willing and ready to try what is next, to avoid another OHS, or a stroke, or a stent in my carotids or elsewhere, you name it. So, here I am adding to my cocktail in hope that we can put a dent in the numbers for the very first time ever. (my latest numbers are here: http://livingwithfh.blogspot.com/2016/03/new-numbers-under-duress-sort-of.html).

It's like this at this point: although by living with FH you have heard all your life that that truck will hit you, now, in the post-OHS era of your life, you're actually conscious about it, so you see the emergency in trying to grasp at whatever options you have to avoid the collision. I am not oblivious to the risks, but I have seen first hand what the high numbers will do to your body. And a sudden death not to mention a miserable life from those is something I want to avoid going forward. I will still read, inform myself and research on my own as before, and I will continue to stay involved and ask the right questions from my doctor, as before. I am just opening up a new door to my healing, that is all.

As I explained before (here: http://livingwithfh.blogspot.com/2016/03/not-bicuspid-valve-after-all.html) the sole reason for my heart surgery was FH. The sole reason was living with this disease and allowing the cholesterol to muck up my valve, my aorta, my carotids, and God knows what other arteries in my whole body. The only measure we have at how bad the damage will be/ can be in our arteries is by looking at cholesterol numbers which are high, for me. The Praluent is a promise to keep those numbers low, and in consequence, allow for the damage to the arteries to be either delayed (some will still happen with aging), or non-existent. This is a personal choice, and in no way is this a recommendation to any one out there, reading this. This realization will have to come on your own, with the help of your medical team. This is where I am today, in my healing process.

I know, I am drinking the kool-aid, according to some, and trust me, I am very, very scared. I hope that my body will alert me before something does go terribly, irreversibly wrong in my system as a result of taking these new, potent drugs.

The drug is a shot, and it comes in a pen format – you give it to yourself every two weeks. It is very expensive (tens of a thousands for a year) and most insurances don't cover it, but talk with your doctor, and they have payment plans and samples they can help you with, if you can't pay for it yourself.

It is also important to know that they won't approve this unless nothing else worked before, pharmaceutically, to bring the numbers down. I have been on all the statins for 18 years now. None of them work, except for lipitor, which works partially, for me. Even being on lipitor, and with a number of other drugs added to it (niacin, zetia, cholestyramine to name a few) my numbers have never been normal.

My cardiologist believes we should see the numbers drop after 2 shots, even. I will definitely report here what the result was. So far, from taking my first shot today, it is not a big deal – the needle is very small and you can't even see it – it's like a blood sugar check needle, only the “pen” part is longer and thicker than that. I have seen reports of patients feeling soreness and swelling from the injection site, but so far (2 hours after the shot), I feel/ see neither one.

From having the very involved surgery I had recently (http://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html) you learn a lot about self preservation and being proactive. I feel like I have always tried to be proactive in my life, but I have always been scared of the new therapies. Well, I guess that is over for me, as I am now embarking on this new journey. Hoping for only smooth sailing ahead, as I hope for every one of us.

Much health, all!