It was another one of those moments this morning. You know it, right? In my new car. Leaning back, hand on the steering wheel. Cruising down the freeway. My favorite music is blasting, piped from my Android phone to the stereo system.

For a moment, it’s just me, the steering wheel, the road, and the music. I’m not aware of anything else. I wish I had better words to adequately express this state of flow and being.

But it doesn’t last forever. I become aware of the pains, aches, and fevers in my body. Sadness creeps back in, as I remember one of the last times I prominently had this profound experience, driving home from my ex-wife’s in the evening while we were dating. The tears come as I think of those moments and subsequent moments with fondness, regret, and grief.

But, for a moment, it was just me, the loud music, the steering wheel, and the road. I wasn’t “little Travis”. I wasn’t sick. I wasn’t divorced. I wasn’t “less than”.

I treasure those moments.

I went to lunch today at an Indian restaurant with my coworkers. When we went to pay, I ran into a very common problem for me.

I’m only 4’6″ (roughly 137 cm for my non-Imperial friends) tall.

The counter at the cash register was pretty much as tall as me. I could barely see over it. I certainly couldn’t reach to use it to sign my reciept when I paid. Like I said, a common problem for me. But wasn’t common was just a small thing — and I don’t even think I can fully describe how significant it was or what made it significant to me — that the owner of the restaurant did.

When I took my turn to step up to the counter to pay, she immediately apologized to me that I couldn’t reach or see things. After I handed her my card, she got one of those little folders for credit card receipts, stepped to the side of the counter, and handed it to me with my card and my receipt and a pen so I could sign the receipt. My coworkers had just signed their receipts on the top of the counter. But she made this kind little gesture to make it so I could sign things.

I don’t why it had such significance for me. She didn’t make a big deal out of things. But at the same time, she took a moment to help me out and did it in a kind manner. It’s these little things that make me comfortable and not fret about being different.

I just made a small donation to help Cath Duncan and the rest of Team Juggernaut raise $45K to help fund kidney research.

(As of June 18, 2015: Image and link that was here no longer work.)

Please, I urge you to go and donate whatever you can spare. It will help the quality of life of millions of people, myself included.

My donation today is in honor of all of those that have helped me through my kidney disease and transplant. In particular, in honor of Ann Henson who donated one of her kidneys to me, nearly two years ago on June 19, 2009:

From Celebration of Life Monument

Finally, a special shout-out to Jenny Blake, a great friend of my sister’s, who is contributing to this great cause as the author of “Life After College”. It means so much to me, and I’m glad I found out about this great event through you, Jenny!

As usual, any discussion of transplantation hits close to home to me. I’ve felt to share a few reactions to parts of Dr. Lim’s talk, almost as therapy for myself, to understand the process I myself have been through and the future I have to look forward to as well. A few remarks:

Dr. Lim mentioned a statistic I’ve heard many other places. More than a dozen people die each day in the United States alone while waiting for a suitable donor organ. This brings up many feelings I have faced before. When I was on dialysis, I admit I felt guilty. I was only on dialysis for 3 months while I was waiting for everything to come together for my transplant. Yet, most of my fellow patients at the dialysis center would never get that opportunity due to age or other factors. Naturally, the questions of, “Why am I so lucky to have this opportunity? And, even, why me?” came up. And they came up again, with tears, as I thought about the wonderful gift I was given as I listened to Dr. Lim.

She goes on to talk about a difficult assignment she had and the situation in Singapore, her native country. After performing the first successful cadavaric liver transplant, she was assigned to harvest organs for transplantation from executed prisoners. Many individuals, due to their indigent circumstances, are coerced into donating organs in order to receive money to support themselves or their families. Such a risk and a gift should not be one of coercion — I am so glad I know that my donor kidney was freely given. But the discussion made me think of the moral implications of such a thing.

Then she goes on to discuss her current research — transplanting stem cells instead of entire organs. In fact, her associates are exploring deriving stem cells from adipose or fat cells, which I believe, as she does, removes many of the moral and ethical questions arising from using embryonic stem cells. Imagine it! A doctor could take my own fat cells and use them to generate a new kidney, a new retina, or whatever cells I need. Amazing!

Stem cells can be used to cure and treat diseases I deal with and some that are very dear to me deal with. When I started watching this video, I had no idea it would hit even closer to home, with the inevitability of blindness I face with my retinitis pigmentosa. I also have those dear to me that deal with autoimmune diseases. Dr. Lim herself has retinal issues and has a new-found desire and empathy towards her patients with such afflictions. I am excited for the potential this brings.

These talks always give me hope. They give me pause to think about how such medical technologies and pioneering have truly affected my life. If I was born even 20 years earlier, there are many things in my life that would have prevented me from living as long as I have, in some cases even past infancy. Of course, then, I still think. Why me? Why am I so lucky? I thank Dr. Lim and the many pioneers like her, I thank my kidney donor and the rest of those that have helped me – I thank all of those that have made it possible for me to be this lucky.

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.

Medication

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.