FH Advocate for Awareness- Alina

About Camping and Life in the Past Six Months

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Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

I still remember every day the words of my surgeon, on the first day I saw him in ICU. Drugged up and all, I still remember him saying “Alina, this will be a loooooonnnggg recovery …”, and he made this gesture with his hand, as if he were showing a long, wavy and bumpy river flowing in front of me. This is what drives me, most days, when I get impatient with myself and with being pulled behind.

This month, I have reached 6 months since surgery, a milestone that was only a dream when I came out of surgery. I’ve had undoubtedly less bumps than most people on here, but I had some, and I know today that my life before the surgery will never return. But that only means that I have to learn to live the new life, for which I am grateful and humbled! I’m not missing the old life, most days, but then what would be the point, right? Onward is the only direction I know.

I follow this site (www.heart-valve-surgery.com) where heart valve patients tell their stories. Reading about all their journeys and living my own is amazing to me – we’re lucky to have such great gifts: our lives, to begin with, and then this Heart Valve/ OHS community and leaning on and learning from each other. Such a blessing. The opportunity that I have had to meet my medical team, other patients, in rehab, and people online, in such forums, has been a true gift. The knowledge I have gathered during this time will save my life. I know this! This gift alone has made this journey worth it to me.

While living through the past 6 months, I’ve always thought that we all went in this thinking we’ll fix our hearts and we’ll be better. And I think some of us will do just that. But at the same time, for me, I’ve also learned that I’ll never be ‘OK’. I’ll never be “not” a heart patient. I’ll never be able to leave my house without my Coumadin, or my MedicAlert bracelet. I’ll always have just a little bit of an odd feeling in my chest. Different than before, but always a reminder. I’ll always check my heart rate and my BP almost daily, sometimes more than that. And these are all OK things. These are my new reality. I try to not label it, and just be aware of it: it’s not ‘good’, nor ‘bad’. It’s just there.

This journey gave me a new life, for sure. Not one without pain and worry, but one that is more grateful. More patient. Slower and more in-tune to my body and the world around it. I pick my battles very carefully nowadays, and I know, at the end of the day, what was important to me on that day, when I went in for OHS. For this life I am grateful and humbled, and I would not trade it for the world. Even if it will never be devoid of bumps.

We tried camping for the first time in the beginning of June – just for one night, at a campground about 45 minutes from our house, and I thought, then, that I was going to die. My heart felt heavy and was beating erratically, my chest and back were killing me, and I felt extremely tired, and fainty.

A couple of weekends ago, we tried camping for one night again. This time, we camped “off the grid”, just on the side of a national forest road, by a stream, in the middle of pretty much nothing. Lately, I have felt better and I am s-l-o-w-l-y pushing boundaries, and try to venture out where there is no cell phone signal, although in close proximity to our house (this time we were only about 45 away, too).

This second time, I felt really good. I don’t sleep very much elevated anymore, so just a couple of pillows were enough for my sleeping arrangement. I actually could go to work and not feel like I was going to faint or die the next day, too. I did get some pains in my ribs and spine and lower back, but they were probably from being in the camper bed, which is not as comfy as my own, at home. The first time I went camping, I worked for a half day the following day, and then I came home and crashed! I could not even cook, or wanted to eat, or anything, I was drained and my blood pressure was odd. This second time, I worked full days, on Monday and Tuesday and then I came home, after 5 PM and worked in the yard for about an hour and a half each night, watered plants, planted some new ones, and cleaned up rose beds. Wednesday, I finally felt exhausted! I still worked a full day, but I came home after 5 PM and crashed! It was time – my body had had enough.

We went camping this last time at altitude, again (over 6000 ft; our house is at 4000 ft), but it didn’t seem to bother my chest at all. We went for two short hikes (less than a mile), before sunrise and after sunset, and one of them was uphill, but it was not hard to do for me. No out of breath feeling, or anything – which always surprises me.

All this time, while I was out there, and in the two days following the camping trip, my blood pressure inched towards being close to normal, too. Usually, at rest and with no exercise, the numbers are odd, 140 over 40 or some such thing, but after exercising (yard work, mostly), I saw the numbers getting closer to what is considered normal – like 113 over 48 or 113 over 52. So, although I am not ready (nor will I ever be) for a marathon, yet, I think my heart wants to start moving again.

I still live with constant reminders of my OHS, of course, and I am aware that I will never be fully free from thinking about it, or adjusting my days around it. My chest is still sore; I still call it “crunchy” as I think I have the distinct feeling that it’s made of multiple pieces, and is not one, solid bone. My incision is still sensitive – I still cheat on my seat belt, as it’s too heavy on my chest. I still cannot lift much (like my computer bag and lunch box), and I still use a dolly for all my “work stuff” and I park in the handicap parking, at work.

My nerve damage in my left arm is still there and actually, I think it’s been getting worse. I have this frozen feeling in my pinky and ring finger which is constant; sometimes, my whole left arm feels frozen. My left leg is still numb, but different than my arm. It’s more like a log that I am pulling around. (they harvested an artery and a vein from my left chest and left leg, respectively, for the 4 CABG’s they did along with my aortic valve and ascending aorta replacements).

Heat still bothers me to no end. Even when I do nothing, even when I just sit there, the heat makes me short of breath and tired. This was the only thing that bothered me during our camping trip – it was supposed to be in the low 80’s but it was in the low 90’s instead. And even in the shade, and drinking water constantly, I felt lethargic and my chest felt heavy, as if my heart was working overtime.

I still obsess over my INR. Now, I measure it at home, and I panic when it’s something like 1.7 (my range is 1.5 to 2), because I know there is a margin of error of something up to 0.3 points. But so far, knock on wood, no bleeding nor clotting events, than Goodness! I have my cell phone alarm set permanently for 7 PM at night, to make sure I take my Coumadin the same time every day and not miss it. This will be set forever, I am sure.

I am still nervous about flying, and I think I’ll wait for up to a year before I venture out on a plane. This is just my own decision, I have not run this by any doctor. I just want to make sure I can rely fully on the new equipment I have in there. But every day, I gain a little more trust in it. I used to be nervous to be alone in the bathroom, taking a shower, with my husband just downstairs. But now, he goes to work before me, and I am alone in the house, as I get ready for work. I drive 30 minutes to my office and I am in one piece, thank Heavens, every day. I had to get used to feeling OK about being independent again in these past months, but it’s happening.

For those of you just starting these heart journeys, all the doubt, and the questions and the fear are very normal. There is no such thing as a dumb question, so ask here, ask your medical teams and probe them till they make you feel at ease. This is about your life, and they owe you all the answers you need to know. Learn as much as you can to set your minds at ease.

I found, for me, that knowledge has been power, and that helps me through the days when my body feels sorta shaky. Because I know some things, and because my doctors schooled me, I can trace why my body is feeling shaky some days – work, heat, non-sleep, eating or drinking the wrong things, stress all affect the way my heart feels. And as one of my PA’s said “you gotta respect the heart, man!”, so the way my heart feels is the way my whole body will feel. This journey teaches me that with every step.

Much health, confidence and strength to all of you. Smooth roads, and heart hugs to everyone.

At the campsite, in the dusk, awaiting dinner. The leaves are changing already, in The Rockies. I feel like the whole year is behind us already ...
At the campsite, in the dusk, awaiting dinner. The leaves are changing already, in The Rockies. I feel like the whole year is behind us already …


To view original post visit:
http://livingwithfh.blogspot.com/2016/08/about-camping-and-life-in-past-six.html

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.

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