Back in That Roller Coaster: 2 Month Post-op Echo

... And I don't even like roller coasters. I guess God knows that, so He wants me to face my fears by continuously putting me on one!

I got my 2 month post-op echo done last week. The results were posted online, where I could read them earlier this week, and I had a feeling things were not "kosher", but today my cardiologist called me and confirmed. 

I have had low diastolic blood pressure since I left the hospital. Normally, they kept asking me if I am lightheaded and until about 2 weeks ago, I was not. However, since I started Phase 3 in rehab, and I have been pushing myself to do more, and last more on the treadmill, up my speed, etc, my blood pressure keeps staying low (average 100/30-something) and I have felt dizzy and light headed when I exercise. 

The echo shows aortic insufficiency, which basically means my new On-X valve is leaking. It's leaking enough, to maybe cause left ventricular insufficiency, perhaps (unless that's still left over from my heart attack while I was in the hospital healing from surgery), and could also cause low diastolic pressure, with the symptoms that I have when I work out. The echo shows left ventricular insufficiency as well as slight left atrium enlargement, as well as trivial mitral and tricuspid regurgitation. These last 2 are not of immediate concern to the cardiologist - just something to watch, but with my aortic valve history, they don't sit too well with me. 

The next step is to completely eliminate my beta blocker for a couple of weeks to see if the blood pressure comes back. If yes, that's what's causing the low BP. If no, then the aortic insufficiency is to blame. Right now, we have too many variables and we don't really know what's causing the symptoms.

In the meantime, I am not to push myself too hard. The cardiologist said to definitely keep active and move, but not to run or cause my heart to speed up. He wants to see if my diastolic pressure will come up in more normal ranges, of 50-60's and stop being in the 30's and 40's. 

I have an appointment with him in 2 weeks and then a repeat echo in another week from that. 

I am completely bummed because I was supposed to start working in 3 weeks, but with these many questions still in the air, I am not sure what will follow. 

I am of course VERY bummed that my aortic valve is still regurgitating, even after its replacement. Sure, it went from severe to mild regurgitation, but still enough to maybe cause havoc in the functioning of my "pump" (my left ventricle which pumps the blood out to the whole body). 

He did say that with this type of valve he often sees aortic regurgitation in the very beginning, which clears up after a while. He sometimes sees it not clearing up which will require re-surgery. 

My ejection fraction went way down from 70 pre-op to 55 now, but I did have an MI (myocardial infraction) on my left ventricle. Like I said: too many variables, right now. 

I can't even think about "the worst", because I feel like I don't know everything to even be there yet. The area of the aortic valve is definitely improved, so are the speeds through the valve. So, there are some pluses. However, the thickening of the atrium and ventricular insufficiency scare me, and the symptoms I feel when I exercise do too. 

I can only think of "what's next" and for now, I quit the beta blocker, take it easy and go about my days  calmly. The whole time since surgery has been somewhat stressful on a personal level, so that could have contributed to my heart not healing properly, as well. 

One day at a time, and never ever take any second for granted. 

Much health to all of you.  

10 Weeks Out from OHS and 1 Week of Praluent

Although I have been walking this OHS journey now for 10 weeks myself, I am still coming up against new things that my body is going through. I am amazed that symptoms are still coming up and I feel and experience new things. The doctors' appointments and lab visits are still a weekly necessity.This is kind of what this post is about as well as a short follow up on my Praluent side effects. 

Today was my follow up echo, the first one after the release from the hospital. As far as the tech could tell, it all looks good, but the official reading from the cardiologist has not come in yet. 

After that, I went to have my INR checked (my weekly appointment for now), and it's under the range. Again. Today was 1.9, which is just 0.1 lower than the lowest margin. Argh! For the fifth week now, I am under the lower limit. Somewhat unsettling. The only silver lining is that I have an ON-X valve, which should require less Coumadin, and accept a lower INR. 

My husband and I went to Home Depot for some spring shopping after my appointments, and although I was not pushing a cart, nor was I lifting anything at all, I got REALLY lightheaded for the first time almost since I left the hospital. I just felt like my knees were jell-o and they would just not support me. I had to sit down on a shelf right away, as I felt I was going to go down otherwise. After 5 minutes or so, I gained my balance again, but I felt drained. Just like all the energy depleted me. 

After lunch at home and a nap, I felt better. My chest hurt a lot today, too, but I blame my rehab stretches on that - they REALLY are engaging my torso. My blood pressure was low, again (100 over 40), today, but it's been low before, with no dizziness, so ... no idea what this was, but it came and went, so far. Just something to keep an eye on and see if it should happen as a norm. 

I took it easy this afternoon - everything I did was sitting down. I am still surprised that some of this "weirdness" kind of comes and goes even to this day, even after this many weeks. This makes me nervous, of course, especially with the starting of work looming ahead. 

Now, about the Praluent. My arm hurt for about 4 days after they gave me my shot last Wednesday, but only when I massaged my injection spot. The night I got the injection, I had a panic attack. I felt like my heart was pounding hard, and I felt just like I feel before a job interview, but multiplied by 20. I got cold sweats followed by really hot, dripping sweats. I didn't take anything for it, I seemed to sleep it off, in an agitated night sleep, and I was better by the morning. 

I also, for some reason, have a hoarse voice. I know that nasopharyngitis is a major side effect of Praluent, but I don't have congestion in my nose/ head, or flu-like symptoms, etc, but I have a very hoarse voice and I sneeze a lot. I think the jury is still out whether this is from Praluent, or just the pollen season being upon us. I will keep watching it and continue to report back on what else weird is happening. 

Much health to all of you, and I hope you have a beautiful spring to enjoy, like we do, here in The Rockies. 

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!