Laying Low

Since Christmas 2016 I’ve been sick on and off with a variety of things.

Christmas day I started feeling sick and ended up in the ER on the 26th. Turns out I had an ear infection in my left ear and an upper respiratory infection. Because of that I had to reschedule my visit to Mayo Clinic to February. Then one week before we were to leave for Mayo in February I came down with something else. This time it was an ear infection in my right ear and another upper respiratory infection. Again we had to reschedule the Mayo visit, this time into March.

If you read my blog you know we finally made it to Mayo in March, thank God! Unfortunately, upon our return home I came down with some undiagnoseable intestinal plague that hung around for about a week. In that time I lost 13 pounds and didn’t venture more than a few steps from my bathroom. A trip to the doctor, a blood test, and stool sample resulted in knowing absolutely nothing about what I had but they did notice my kidneys weren’t functioning well, again. Really this is no surprise my kidneys like to act up as often as they’re allowed, usually when I’m sick.

To top off my viral parade, after getting over whatever it was that attacked my intestinal tract, not even 2 days after I started feeling human again, another virus decided to rear its ugly head. I got a cold sore on my lip the size of the state of Texas that had it’s own heart beat!

I really can’t  make this stuff up…it’s ridiculous to say the least. I’ve decided I don’t envy two year old children and I no longer believe in the terrible twos anymore. I think two year old are just cranky from being perpetually sick all the time. Let me clarify my position a bit, my immune system is just shy of being two years old. Because I had a stem cell transplant, my immune system was wiped out completely and my body has been struggling to rebuild it ever since. On April 13th of this year it will be two years since my transplant and one year of remission from Primary Amyloidosis. So I’m very much like a two year old when it comes to my immune system, I catch every little thing I’m exposed to. Most of these minor little viruses, older folks (really meaning anyone older than two,) are totally immune to or their immune systems can fight them off, but mine, like a two year old who is sick every month, can’t.

So I’ve been kind of laying low. I don’t want to live in a bubble and not go out, but I pick and choose where I go to try and minimize my exposure the the next random virus that might invade my body.

When you get a stem cell transplant they don’t tell you about this part of it. I think because they’re focus is on saving your life and trying to get you into remission, they fail to mention that having such a fragile immune system can be a pain in the butt for awhile, a long while. I can’t imagine what all of this would be like if I weren’t in remission. Although I gripe about being sick, I’m extremely thankful for being in remission and not having to deal with long term chemo therapy and a whole host of drugs that goes with it. I do know I’m fortunate…

I got through four rounds of chemo therapy (16 weeks), I survived a stem cell harvest, high dose chemo, and a stem cell transplant. I didn’t end up with Multiple Myeloma which many Primary Amyloidosis patients do, who receive the same treatment I did. I’m in remission and remain to be so far! All I really have to contend with right now is maintaining my heart and staying well.

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