Archive for August 2013
I saw the cardiologist on Wednesday,
Unfortunately, the meds were not doing the job he hoped they would.
We talked for a bit, and the current plan is that after Yom Kippur, I will be having an angiogram, which will involve injecting dye into my system so that they can observe my heart functions. This is to determine exactly what is going on. The possibilities are that there is serious valve damage, or that I have heart disease (defined, in this case, as clogged arteries), or that the genetic defect is the only thing wrong.
Depending on what they find, I will have a few choices. If there is nothing other than the genetic issue, we can either continue the medical therapy, I can have an ablation (where they basically induce a minor heart attack by injecting alcohol into the defective part of the cell wall to kill the cells), or I can have open heart surgery, where they can actually cut away the defect. If there are other issues, the choices narrow to abalation or open heart surgery. At the moment, if that is the case, I am leaning toward the open heart surgery. The ablation can only take care of the one issue. If they do the open heart surgery, they will be able to fix whatever additional issues there are. Further, while ablation works in about 85% of the cases it’s used for, it merely ameliorates the symptoms; it won’t lower my chances of suddenly dropping dead from this thing.
Am I looking forward to the next few weeks? Nope. Am I scared? You’d better believe it. It’s very likely they will find other issues; heart disease runs in both sides of my family. My father had several heart attacks, many of my uncles did, too. Further, on Mom’s side of the family, my great-uncle Eddie, dropped dead out of a clear blue sky after being Charlie Knickerbocker in a parade.
Further, unless the results are much better when I see the cardiologist on the 18th, he wants to move fast. The reason for this is that the deterioration to this point was over a relatively short period of time (about a year), He’s already told me that, while it will make a major improvement, he cannot guarantee that I will get my full health back. Of course, he has never worked with someone with my stubborn gene before (and I come by that very honestly – from both sides of my family).
So, for the next three weeks, it is my plan to try to drop as much weight as I can, given that I can’t really go walking right now. Dr. S. notes that I am far from the worst candidate he has sent for surgery. We both know, however, that the weight and my blood pressure don’t exactly make me the ideal candidate.
All of that said, I could use a little help here. I am not freaking out overly much, but – being very much a layperson – I do not even know what I don’t know. So, if any of you have questions that you think I should be asking the cardiologist and, when I get one, the surgeon, please feel free to let me know what they are. I am compiling a list. I will also be doing as much reading on the issues I have over the next few weeks. My friend, Nancy, came up with a couple of questions already, about valves and what kind they will use, and about how long recovery will take, so those are covered, and have been added t my list of questions.
Again, this IS scary. But I am hoping for the best, as always. And – more importantly – I am fighting for it.
Okay, so I’ve been off of the Furosemide for a week.
Today, my ankles are only the size of baseballs. Still, if the choice is swollen ankles or waiting to suddenly drop dead, I can live with the swollen ankles. I have stopped having to run to the bathroom every fifteen minutes, which is good, and makes things a heck of a lot easier.
I don’t seem to be having any side effects from the meds I’m currently on, which is good, too. I do seem to have a summer cold, which is annoying, but I did check with the pharmacist, and my medicine of choice, Coricidin HBP, is okay to take with the medicines I have for the heart issue.
Coricidin HBP Cold and Flu is 325 mg Acetaminophen and 2 mg Chlorpheniramine maleate (Chlor-Trimeton). It can cause drowsiness, but since I’m home most of the time, and I don’t drive, that’s not too worrisome. I started using it last winter for colds, given that I had high blood pressure, and it seemed wise. Even better, it works really well at minimizing feeling crappy from cold symptoms.
I do have meds I take morning and night, and – over the next few entries – I will note and explain them, so that as things change in future, I can track them. That will help me remember any odd changes that I need to talk to the doctors about.
I suppose the first place to start is my normal blood pressure medication, since that is the thing that is most likely to change next.
Losartan HCTZ 100/25 is the generic for a medication called Hyzaar 100/25 (losartan potassium-hydrochlorothiazide 100/25 mg). This is what my BP meds were changed to when I left the hospital after the cellulitis in June 2012. It’s the one that Medicaid will pay for without having to jump through hoops with every prescription renewal. The reason this is likely to change is that the HCTZ is a diuretic, and right now the plan is to get me off all of the diuretics. We will have to monitor what happens to the blood pressure once we do that, since the potassium/HCTZ combination is supposed to work better than either of the drugs work solo.
The other change I have noticed is that my voice is starting to come back. Not full strength, and by no means all of the time, but already a noticeable difference. I still run out of breath while talking, but at least I’m starting to sound like myself, instead of like I’m overdosing on helium.
I’m starting to ease back into working and blogging again, but I am trying to be kind to myself until we have this stupid thing under control.
So, that’s where things are today.
For the next little while, this blog is changing direction a bit.
It will still be about my health, but it will now be about getting my health back. One reason I haven’t been blogging much was that I’ve been really tired.
Well, I finally went to the doctor about it. He suggested that I see a cardiologist, because my heart murmur was sounding much more harsh than usual. The cardiologist decided that I needed to have a thoracic echocardiogram. So I trucked in to Mount Sinai and got one (and a thank you to Nancy T for meeting me and driving me home). Saw the cardiologist again this past Wednesday, and he had some answers. In fact, he had a lot of answers.
It seems that I have a genetic heart defect – one wall of my heart is much thicker than it should be. Dr S. (the cardiologist) told me that when you hear about athletes dropping dead for seemingly no reason, this is often the reason why. He also told me that it was very unusual for it not to trigger until someone’s 60s; it normally kills people way before they get to 60, like in their teens and twenties. He also says that it’s likely the reason I haven’t been able to maintain weight losses is due to the heart issue. Same for the BP issues. He also asked if I had any living siblings. When I told him I had a sister, he had me call her while I was there, so he could explain to her that she needed to get tested for this defect, too, since it is genetic. After they were done talking, she told me that she had been having breathing difficulties for a year, but her doctors had been attributing it to her pernicious anemia. Dr. S. even gave me an extra copy of my echocardiogram, so that I could give it to my sister to give to her cardiologist so he’d know exactly what to be looking for.
We then discussed what had happened to trigger the problems. It seems that the furosemide they were using to keep my ankles from swelling was causing my heart to work sufficiently harder.
Anyway, we then discussed various treatment options. I do not, thank the gods, need a defibrillator at this point, because I am not light-headed, nor do I pass out. I’ve been taken off the furosemide, and if we start seeing the changes the cardiologist wants to see, the next step will be changing my BP meds to remove the diuretic. It means I may have to deal with ankle edema for a while, but if we can get the symptoms under control medically that would be good. Anyway, after that, we are going to ramp up the carvedilol, and something else he is giving me called verapamil. He would like me to be taking the highest safe levels of those two drugs. Since the verapamil does not interact well with the simvastatin (cholesterol), the simvastatin has been changed to prevastatin. Anyway, we figure to try the medical therapy for six months or so. If it doesn’t work, there are surgical options, but we are really hoping to avoid those.
The good news about the whole thing is an odd little bit. If this thing kills me, it will be sudden, quick, and relatively painless. This is good for several reasons: the one death that scares me is a long, drawn out one that drains all the friends and family caring for me. Further, We probably have caught it early enough to prevent that from happening. the other good news is that since I have been off the furosemide, my voice seems to be starting to come back a bit.
However, it’s still scary. While I will be getting back to walking once the condition is stabilized, I will possibly not be able to get back to the level of walking I love.
The main thing, though, is that I now have some answers. They are not all answers that I like, obviously, but they are answers.
And since this blog is about my health as well as my weight, this is where the blog will be going for the next while. If you want to opt out, I understand. Not everyone wants this kind of a ride. If you stay, I promise to be as honest as I can, and to keep you in the loop.