The other day, right after I had my weekly blood work done I had a meeting with a trusted advisor. I don’t take my morning doses of my medication until after I do blood work, and I hadn’t had a chance to gather my pills into a daily pill box, so I just had a bag with all of the original prescription bottles with me. My advisor knew of my medcine regime, but it was kind of an eye opener to her seeing all of the bottles I had to go through.
This got me thinking. What has become (or been, depending on what it is) the norm for me in my life are often things so pervasive in my activities, I think I sometimes forget that many of these things are foreign to most people. I admit that I’ve struggled lately as it feels like all I have to talk about are some of the medical things in my life. But I realize I don’t want to go to the opposite side. People should know and understand, hoping that the more people understand this is “just what I have to do” it won’t be all that unusual. I’d like to compare this with dental care. We don’t feel pity or sorrow or amazement when someone does the normal routines of brushing and flossing their teeth every day, going to the dentist for cleaning, or even more elaborate dental work. It’s a rather normal part of life. Though fewer people will experience what I experience, just as those things are what we all have to do to keep our teeth healthy, this is what I have to do.
So, I thought I’d write about my current routines. Most of these things, unless otherwise noted, are related to my chronic kidney disease (specifically reflux nepropathy) and my subsequent kidney transplant I received on June 19, 2009.
First, here’s all of the bottles for the different medications I take in a given week:
I believe that is currently 17 different oral medications plus my eye drops. When I am on top of things, once I week I fill my daily pill boxes, which have four compartments each. I just finished mine for the upcoming week:
This makes it quite convenient to carry my medication with me. My current regimen consists of taking the oral medications at 8 AM, noon, 4 PM, and 8 PM. I am also getting into the routine of using recently prescribed eye drops three times a day, currently at 8 AM, 3 PM, and 10 PM.
I’d like to run down the different kinds of medication I take. I may not mention them all by name and especially not dosage, as I’m sure they are highly dependent on the patient and I work closely with my doctor to make sure I’m always getting what I need and at the right dosage.
Immunosuppresants - I am currently on three different immunosuppresants, including a steroid. Because anything that is not of my own DNA is seen as foreign by my body, the healthy immune system will attack it. Therefore, in order to keep the transplanted kidney, I am on medication aimed specifically to suppress the immune system. Unfortunately, these very medications that are allowing me to have the kidney function I need to be alive are also the source of many of the problems I have had post-trsnsplant, due to their side effects and also the things I’ve had because of my supppressed immunity. As long as I have a transplanted kidney, I will have to be on some level of these medications. As much as I appreciate the transplant, the wonderful gift my donor gave to me, and the availability of these medications, perhaps you might understand why I am excited for the future possibility of getting a kidney grown or printed from my own cells. I would no longer have to take these medications, or many of the others required to offset their effects. Also note that, in particular, I cannot miss a single dose of these medications, or I run the risk of damaging my transplanted kidney and going through rejection.
Blood Pressure Medications - I currently am on two different blood pressure medications. The kidneys are part of the regulatory mechanisms for blood pressure. Sustained high blood pressure can also damage the kidneys. So I have to be on constant medication to make sure this is at a more manageable level.
Vitamin and Mineral Supplements - The kidneys are responsible for the regulation of vitamins and minerals in the body, so I have to take extra supplements for some things that I am not able to absorb from my diet alone. This includes Magnesium, Calcium, and Vitamin D. I also have to take Sodium Bicarbinate to help regulate my body’s pH level. Since the kidneys are responsible for minerals, and the steroid I’m on has a known side effect of bone density loss, I have actually developed osteoporosis, thus the Calcium and Vitamin D. I also take a prescription medication to help prevent bone loss.
Digestive-related - Side effects of these other medications I’m on (particularly the steroid) are often hard on the stomach and digestive tract. I take daily doses of prescription strength Prilosec and also another medication.
Antibiotic and Anti-viral - Because of my suppressed immunity, I am much more suseptible to infections and viruses. I take a low-grade anti-biotic 3 times a week as a preventative measure, and I’m on a antiviral medication for the next couple of months to treat a viral infection I contracted a while back. I am also currently taking another antibiotic as I have another urinary tract infection.
Miscellaneous - I am also on regular medication for depression and anxiety and ADD. Some of the other medications I’m on are known to have effect on various neurotransmitters, so I have needed the extra help to offset these. Additionally, I have another medication I’ve been on most of my life for support of some bladder issues that I have. Lastly, as mentioned above, I have prescription eye drops that I use 3 times daily that I just started using to deal with some recently discovered issues that are unrelated to my kidney disease or transplant.
So that is my current regime for medication. Maybe you can understand why the people at my local pharmacy know me quite well. My dosing and list of medications I am on often changes weekly, depending upon the results of my laboratory blood work, so it is often hard to plan ahead and I have to make several trips to my local pharmacy a week to get new medication.
I will write more later about the other aspects of my life that are a result of my kidney disease and transplant, including laboratory work and so forth.
I’m just grateful I live in a time when these things are available to extend my life, frustrations of the side effects notwithstanding.