Figuring Out How Much Is Too Much

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
I can’t believe it’s summer already! We hit mid 90’s around here this weekend and that, for sure, is summer. Given that my surgery was in February and the most of my heavy recovery time has been through the spring (not that now I am fully out of the woods!), I feel like I have skipped a season this year.

So, it took my body a bit by surprise when my husband and I decided to go camping for one night this weekend. Am I ready? Will I be tired? Will the altitude bother me? How will I sleep in the camper, since my sleeping “scenario” is so involved at home? All these questions and more bugged me, but we did it anyway.

Altitude didn’t seem to bother me, as I was around the camp and as we took a walk around the campgrounds. My blood pressure was still the usual crazy self, with a low diastolic, but my pulse was normal and the systolic in the 130’s. Yes, I travel with a blood pressure monitor now, to stay in touch with what’s going on “inside” and I do keep a journal with the values I find.

Aas (53)
This was at the half point or so of our campground walkabout. It was a warm day, and before surgery, by this time, my face would have been completely burgundy red. It never got that way, even by the end of the “hike”. As you can tell, the trail was a paved road, so not very strenuous, but you can see the incline. The backdrop, like everything around where I live, is stunning. 

So, it all seemed like my “now, normal” self during the first day we were there. At night, though, just laying down, I could hear my heart beating strong and fast and somewhat arrhythmical, too – faster and slower, then fast again … My chest didn’t bother me while walking, but when we hit a steep incline, I felt like I was not taking enough air in. Nothing hurt, but I just needed more/ deeper breaths. It felt very different than the angina I had for years before the surgery.

We didn’t do much along the lines of physical activity, on this overnight trip, other than the 20 minute or so very slow walk around the campgrounds. We mostly rested, read, painted, made a fire, played a board game. We took it very slow.

Then, when we came back home, I was out in the 90+F heat for maybe 30 minutes, just helping my husband park our RV and trying to help with unloading. I got extremely tired doing that. I came inside and left the unloading to him, as I washed a couple of easy dishes. Then, I took a shower, and honestly after all that, I felt like after coming home from the surgery – extremely, incredibly, unbelievably tired. I felt like something knocked the wind out of me. Very weak, and like I was going to faint. It was not quite light headed-ness, but it was very marked weakness and a drained feeling. I had to – had to sit down and just do nothing for a couple of hours. I did some laptop work and I ate a salad, but not anything else. My blood pressure was a little high, at this point, too (141 over 53).

No idea why such tiredness after this one night escapade. Maybe just being displaced and not all the way comfortable in the camper took its toll? Or maybe the changes in altitude did have an effect on my heart? Or maybe the 30 minute heat did it? Or maybe all of them. No idea. Just taking one day at a time and finding out where the new boundaries are.

Camping was amazing! So good to be in nature again, and to breathe fresh air, to look at endless mountains with peaks still heavy with snow and to smell sap on the pine trees all around and the smoke of a real fire. It was good to at least try to be “normal” again, and do really normal things.

I am not sure what kind of strength I have at this point (almost 4 months), so I’ll keep trying to do things in small bites, just to find that out. I still have range of motion and weight lifting limitations, and I still get tired very easily, so I do take things easily, compared to what I did before the surgery. But I try to push limits just a little bit some days, to see how far I can go into normalcy again. My body always reminds me, though, quite often, that pushing it is OK as long as I back it up by plenty of rest.

As (65)
This is a “bonus” picture of what I eat these days. And unlike before, when I didn’t stick to my diet when I camped or traveled, I do stick to it now, because of my food allergies/ intolerance, which make(s) me feel miserable: I still try to stay very low fat and vegan, with the exception of some wild fish. Here is my camping dinner: corn, vegan baked beans “dog” with organic, low fat potato chips and tomato salad. 
The benefit for my cholesterol (although with FH, diet has little impact on it) is that it’s a lot easier to stay low fat/ no fat on vegan foods than it is on animal products. 

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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.