Two Months with the Kidney
When I was diagnosed with kidney disease 10 years ago, I had my first experience with taking medicine. I'd never been one of the kids with severe allergies or asthma inhalers. I think at most, any medicine I took was maybe children's Tylenol, or Nyquil. And that was enough for me because those liquid cough medicines do NOT taste like cherry.
The very first pill I had to take to treat my disease was a blood pressure medicine called Lisinopril. Courtesy of Mayo Clinic, Lisinopril is an ACE inhibitor drug used to treat high blood pressure, and most ACE inhibitors are freaky good at lowering blood pressure. The story of my experience with Lisinopril is like a Shakespearean tragedy. It was the first medicine I ever took. It was the first medicine that I got yelled at by my doctor or not taking it. But she only did it out of love (thanks Dr. Yao!). I didn't realize how important this was. At 16 years old, my blood pressures were clocking in at 140/90 (that's not normal). They were still trying to figure out what was wrong with me because my kidneys were still leaking protein into my urine. I had to get my blood pressure under control to prevent further damage. Lisinopril was a main part of my regimen for going into remission.
After taking it for about six months, one day I realized that I had been taking the wrong dosage for at least two months. Someone at the pharmacist screwed up (yeah, I'm not afraid to say it. THEY SCREWED UP) and gave me a pill to take that was twice the amount that I was supposed to take. I went into a minor panic but then I'd also noticed that once I started taking twice the amount of Lisinopril, the amount of protein in my urine decreased significantly. That is a good thing. Protein in the urine is bad, bad thing. I don't know how, but the Lisinopril played a big part in my getting to remission (where I stopped experiencing any symptoms of kidney disease). This is why it was a bit confusing to me when six years later I had an allergic reaction to the drug and had to be taken off of it.
In the very early stages of my disease, Lisinopril was paired with Prednisone, a corticosteroid. Most people with asthma, arthritis, or allergies know about these types of drugs. They can also help treat the symptoms of kidney disease by suppressing your immune system. I was on taking about 1000 milligrams intravenously every other day for a while. I was also taking Cyclosporine. Cyclosporine is an immunosuppressant. These drugs work by lowering your body's immune system to prevent it from attacking your tissues or organs. These drugs can also make you more susceptible to other infections because your immune system isn't working 100 percent to prevent infections.
That brings me to present day. What am I ingesting these days?
Top Left: That's one of the awesome pill boxes that was given to me at the hospital. The whole set is all of the days of the week, broken up into single days so that you can just grab a day and go. Then separated by morning, noon, evening and bedtime.
Bottom Left: This is what my set of morning and evening pills kind of looks like now. I say "right now" because depending on the results of my weekly labs, the amount of pills could increase, decrease, or stop.
In the very early stages of my disease, Lisinopril was paired with Prednisone, a corticosteroid. Most people with asthma, arthritis, or allergies know about these types of drugs. They can also help treat the symptoms of kidney disease by suppressing your immune system. I was on taking about 1000 milligrams intravenously every other day for a while. I was also taking Cyclosporine. Cyclosporine is an immunosuppressant. These drugs work by lowering your body's immune system to prevent it from attacking your tissues or organs. These drugs can also make you more susceptible to other infections because your immune system isn't working 100 percent to prevent infections.
That brings me to present day. What am I ingesting these days?
Nom nom nom |
Top Left: That's one of the awesome pill boxes that was given to me at the hospital. The whole set is all of the days of the week, broken up into single days so that you can just grab a day and go. Then separated by morning, noon, evening and bedtime.
Bottom Left: This is what my set of morning and evening pills kind of looks like now. I say "right now" because depending on the results of my weekly labs, the amount of pills could increase, decrease, or stop.
- Prograf aka Tacrolimus: just your basic anti-rejection drug. They are the skinny white pills. I have to take these because no matter what, my dad's kidney will never be mine. And my body knows that. So if I stop taking this medicine, which tricks my body into thinking my dad's kidney is mine, then my immune system will try to "heal me" by attacking the organ. That's just what immune systems do. They keep out stuff that's not supposed to be there, like viruses and infections, and sometimes other people's kidneys. At one time I was taking 20 Prograf pills a day. Now I'm down to just six a day.
- Cellcept aka Mycophenolate: another anti-rejection drug. It's blue and orange. It performs the same function as Prograf. But, when I started taking it I had to sign a form that said I would not get pregnant while taking this drug. So when Ben and I decide we want kids, I have to tell my doctors so that I can take something else.
- Norvasc aka Amlodipine: It's a round white pill and it helps control my blood pressure.
- Bactrim aka Sulfamethoxazole: This is another round white pill and it's used to treat infections. I don't have any infections that I know of, but I still have to take this.
- Ketoconazole: I take half of these white tablets twice a day. It's actually an antifungal medicine, but my doctors prescribed it to raise my Prograf levels, so that I wouldn't have to take 20 of those pills each day.
Middle Right: These pink pills are Valcyte. I take it every evening to prevent an infection that transplant patients are more susceptible to.
Bottom Right: Aspirin. I wasn't allowed to take this before my transplant, but now I take it to prevent blood clots.
I knew I'd have to take a bunch of pills every day after the transplant. And it really does get easier. Sometimes I get scared when I think about forgetting to take a medication, because I know the life of my transplant and my life, really depend on it. But I know it will happen eventually. Everyone forgets, at least once. I'm really looking forward to the day where there's just one pill to take to help protect your transplanted organ. And I'm looking forward to the day when the cost of prescription drugs go down. This is why I don't go shopping for clothes anymore. These days, a weekend shopping trip consists of me at Whole Foods or Wegmans and CVS Pharmacy. Next year, I might be able to add Home Depot to this list. Because I'm married now. That's where married people go. Groceries, pills, mulch. There's no way I'm 26.
Its like you read my mind! You appear to know a lot about this, like you wrote the book in it or something.
ReplyDeleteI think that you could do with some pics to drive the message home a bit, but instead of that, this is great blog.
An excellent read. I’ll certainly be back.
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