Enjoying Life, Paying The Price

Salt can be heart failure patient's worst enemy

 Who does not love to go out to eat? It’s one of life’s little guilty pleasures, going to a restaurant, having someone else cook the food you normally would not cook for your self, and then have someone else bring that beautifully plated dish to you, serve you drinks, and then when it’s all done, you just get up and leave the mess behind for someone else to clean up. I know that I do, and I tend to eat out more often than I should. I always tell people that my favorite thing to make for dinner is reservations.  

All that eating out does come at a price, and I don’t mean financially. When we have someone else cooking our food, we don’t know exactly what is going into that food, and in many people’s cases, that needs to be closely monitored. In my case it’s salt. I have to be careful of my salt intake, and I am very careful. I don’t cook with salt, I don’t add salt to my food, and I avoid any packaged food that has high sodium. As a matter of fact, I avoid packaged food on the whole.  

These last three days however, I just let go, didn’t think or give a damn, and threw caution to the wind. Sunday night I had a (gulp) frozen dinner! I had a “healthy” dinner of mac and cheese. It was organic and made with rice pasta, but I never did take a look at the sodium content of that meal. Then on Monday night we went to our favorite Italian restaurant and I had, of all things, fettucine Alfredo! Oy! Then Tuesday I had an Angus Steak Burger. To many people, that may not sound too bad, and may actually sound like healthy eating. To me, it’s torture.  

My case is complicated. I have Sarcoidosis of the lungs, and heart, heart failure and secondary pulmonary arterial hypertension. It’s a funky mix that makes the best specialist at Mt. Sinai hospital scratch their heads. I have five different specialist that work together to try to get me stabilized, and I am pretty stable. I am told that someone in my condition should be incapacitated. But I confuse them all because I am asymptomatic. I look to anyone that sees me, very normal. I walk at a brisk pace, albeit I can’t at an incline or at steps, but thankfully, I am able to function normally and continue to work. One of my medications is called Tracleer, and it’s for my pulmonary hypertension. The sucker cost $6.000.00 a bottle, and I get a bottle every month (thank god for a great insurance plan). One side effect of that drug, besides destroying your liver, is water retention. People with heart failure naturally retain water, and that’s why we have to limit our salt intake. Tracleer adds fuel to that fire. So I have to take Lasix to help remove the water. Recently however, they stopped me taking the lasix because it causes blood pressure to drop and my blood pressure was reading 80 over 56. Again, doctors are confused how I am able to stand with that low a blood pressure.  

Water retention can make your legs and feet feel like a chubby baby's

Combine a high salt intake, the water retention side effects of Tracleer, a “natural” tendency towards water retention due to heart failure, and you have a recipe for disaster. I woke up yesterday with my legs swollen and burning. I know my degree of water retention by the degree of the burning feeling. If it’s in the ankle, it’s okay, not too bad. Yesterday and today it is up to my thigh! It’s never been that high. That’s bad. And yesterday my breathing was labored, and still a bit today. That would be from water retention in my entire body, making it hard to breathe. Yesterday, luckily was my day off, so I stayed inside, in the air conditioning, and relaxed all day. Just doing that alone was making it hard to breathe, far less if I had to actually work.  

Have I learned my lesson? I sure as hell have. The couple of minutes of pleasure, over three days, derived from a delicious meal is sure as hell out weighed by the days of discomfort and trouble breathing that I experience afterwards. The trouble with having a disease that is directly affected by certain stimuli that we love normally, is that when you “feel good”, you think that it’s okay to partake of those things at nauseum that you should be moderating, and sometimes the time between episodes is so long that you forget the effects of your troubles. I have learned my lesson, for a couple of months at least. It will be in my memory. Then again, how long does our memories really last?

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