Tomorrow it’s five month to the date since my OHS. To recap, they replaced the aortic valve with an On-X valve, they replaced my ascending aorta with a Dacron graft, they cleaned out my aortic arch from all the cholesterol calcification (they needed to put me in circulatory arrest for these two) and they did 4 by-passes, so they harvested a vein from my left leg, and an artery from the left side of my chest. What can I say? They hacked me up pretty good.
Life has been s-l-o-w-l-y creeping back to ‘normal’ in the past 5 months â€“ whatever that ‘normal’ means nowadays. I have started working on May 17, and initially I was working 4-6 hours a day, with working from home one to two days a week. Now, I work pretty much full time (no overtime anymore, just 8 hour days), every day of the week from the office, which is about 30-45 minutes away.
I have really good days, when I move freely and I can accomplish a lot, physically (commuting just fine, cooking dinner, watering my yard by hand some days, house chores, light shopping) and I have days when everything screams in pain: my chest, my back, my whole upper body, generally, my hips. My left arm and leg are still numb, same amount as 5 months ago. Some days they aggravate me, and they feel swollen, and some days the pain is bearable, and they just feel like annoying needles poking me.
My blood pressure has inched itself up to close to normal values and I only take it about 2-3 times a week, now, not twice a day, daily. Last time I took it, it was 126 over 50, so slowly getting the diastolic closer to 60 (used to be in the 30’s and low 40’s for months).
I am still not able to carry much weight. I still use a dolly for my work bags and I push my laundry baskets with my feet till they make it to the laundry room. I still â€œcheatâ€ on the seat belt, and I leave it very loose across my body, because if it’s tight, it bothers my chest a lot. I still need help with my heavy pots, when I am cooking, and help pilling my cat, because my left hand is half frozen, still. I still need help with grocery shopping, too. I go in for a couple of things and I manage fine, but when I have to push a cart full of stuff, I need my husband every time. Unloading and loading them from/ into my car is hard, too, so I can’t do it alone, either. I tried a couple of times, and I start panting like a dog!
My chest is very sensitive, still. My incision (full sternotomy) has keloids from space to space, and it’s still very sensitive and bright red. Sun hurts it even more, so I cover it pretty carefully when I am outside. I have days when my drainage tube scars are very touchy, as well, and sometimes itchy. I had a mammogram a couple of days ago, and when they did the left side (which is still frozen, numb), I thought I was going to pass out from pain. The nurse almost didn’t want to do it at all, because â€œthe scar looked freshâ€ and you’re supposed to wait for at least 6 months to do this test, after heart surgery. I had put off mine for so long, that I went ahead and did it. But if you can wait more than 5 months for yours, do it, because I think it will hurt, otherwise.
I went on my first real overnight trip (two nights), in a hotel over July 4th. We went to Sun Valley, ID for two nights. The drive up there was about 5 and a half hours, and the time in the car bothered my ribs. Once there, I took my sleeping setup (thick blankets to place pillows on top of, to sleep almost sitting up), but I discovered after two nights that I can get rid of the blankets and I could sleep with just two pillows and I was fine. That was a huge milestone, as now I can sleep almost flat again. I still cannot sleep on my side, though, which is my favorite position. But it will happen, with time. I know it will.
The trip was great, overall, but I did get very tired the one full day we were there, from walking around in the heat, in a hilly town. I had to rest for about an hour- an hour and a half between my two couple of hour walks that day. But I made it.
I find out that heat is my biggest enemy. The minute the temps make it over 90F, I cannot be out there and JUST BE, for more than half an hour, before my heart starts pounding and I feel like I am about to pass out, veins swelling up on my hands and feet. If I ‘do work’ in that temperature, I last even less than half an hour.
I have had a couple of episodes of feeling fainty/ dizzy, and feeling like my head is too heavy, where I have to sit down and rest a bit, but those are very rare now, maybe once a week or so, and they are very short lived. They usually come when I am extremely tired, after doing too much, or when I am in the heat.
This past weekend, we had a house visitor, and she had never been in our area, so I had a lot of things planned for her. Just to give you an idea, I took her to dinner on Thursday night (about an hour away from our house). Then, we drove to a resort about an hour away from our house again, and had lunch and shopped for about 3 hours, in 85F weather. The walk between the stores was all outdoors and on very steep hilly streets. Then, I drove us another 30 minutes to another resort where we met my husband for dinner. Then, Saturday, we went to a lavender farm, where we walked around for about an hour in 95F heat (or more; it was very, very warm out there!!), and then we had a cookout at our house (heat again). My ribs were hurting big time by the end of the day yesterday, from all the car rides, and driving and I was very much drained â€“ just kept yawning early last night. This morning, I slept in, and I did get dizzy in the shower, and very tired. Today, I am taking the day off, nap, sit on the couch, and just catch up on life.
Five months ago, or even 2 or 3 months ago, all this would not have been possible! I am amazed every day at what my body can do. I still get no warning about being tired. When I have the stamina (and that has improved amazingly over the past 5 months!), I just go-go-go, and usually the following day, the tiredness hits and I have to just stop the show!
My biggest disappointment is my INR values. I am still struggling with keeping it within its range (which is 1.5 to 2 for me). Two Fridays ago, I went in for an INR check and it was 1.6 â€“ which is good, but â€¦ it was too low for my comfort. So, I ate just foods with very low vitamin K (like tomatoes, cucumbers, pickles) for a couple of days, just to make sure I won’t get it too low. About 4 days after that, I took it again and it was 2.8! I ate a serving of peas, just to make sure I bring it down a little, and in another 2 days, it shot up to 3.1! I did not change the dose, of course, and I left several days go by, with diet in between to help it down â€¦ But no way, it shot up to the skies.
In the past, when I had my 3 servings of greens a week (always the same quantity, about a cup), it was on the lower end of the spectrum and at that time, too low (after surgery my range was 2-3 and then, the INR was hanging in the 1.5 to 2 range). It’s bizarre, and I have not figured out yet what I am doing wrong â€¦ Still looking for ideas and ways to manage it, and to keep it somewhat consistent. Watching what I eat every meal, like a hawk, does not seem to cut it.
I am going to the clinic every 2 weeks now, and I measure it at home, too, myself, on the â€œoffâ€ week, when I don’t go in. I wish I could rest assured for about a month that it can live in the right range, but it has not happened yet. I am happy that it’s not typically too low. Lately it’s been either within my new range, or very much higher. The danger of bleeding is bigger for me than the one of clotting the valve, and for now, I am learning to live with that fear. I’ll have to say, it seems to be easier to handle the fear of bleeding than the fear of clots.
I sometimes lie awake at night thinking of my â€œfake partsâ€ inside of my heart â€“ the artificial valve and the artificial aorta. I am visualizing them, and imagining them at work, and praying and casting a small blessing on them, asking them kindly to keep working for me. It’s kind of eerie what they can do nowadays. I am so grateful that I had something that could be fixed. There are so many hundreds of thousands of afflictions out there that are hopeless for so many people. For innocent babies and unborn children, even. I got lucky! I am also learning to trust them more and more and seeing them as part of me, and not a strange ‘body’ anymore.
The one thing that open heart surgery has taught me so far, a very powerful thing, is just how much our hearts work. Right after surgery, when my poor heart was beaten up senseless, and so tired and so weak, for month, everything, even breathing, walking up a flight of stairs very slowly, showering took a Herculean effort. Sitting up was an effort, for days and weeks. Putting my shoes on took forever, and it rendered me breathless. This is how I knew my heart was not ready to do all these things yet, it was still recovering. I never take any move of my body for granted anymore, because I know of the amazing hard work that goes into it from my heart. I am so thankful and so humbled!
The ‘rhythm’ of the past five months has been just ‘one day at a time’, and I continue to keep that stride. I never have two days alike, and every day teaches me new things about myself, and about this heart disease journey. As one of my favorite songs goes, “the only way out is through”, so I’m happily carrying on through this amazingly lucky journey I have been cast on and eagerly waiting what is behind every corner, of every day.
Much health to everyone, always!
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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.