I wrote this exactly one year ago, on August 8th, 2008. I guess I was a blogging kind of guy then, but didn’t realize it. The blog will say I posted it August 29th, but all times are in GMT, whatever that is. As far as I’m concerned, it’s 11:20 PM on the 28th.
My friend Mike says that if I wrote a book, it would be a good one. I agree, there is potential, but I’m not sure I could pull it off. And why would people actually read it? I mean, if they want to read an inspiring story, just read the Lance Armstrong book. That makes the most sense. He overcame cancer and won a shit load of hard ass bike races.
What have I accomplished in the face of my adversities? For those diseased and eager to succeed in academics, I may be a good role model. I have had kidney disease from age five. The specific disease is called Focal segmental glomerular sclerosis. Everyone just calls it FSGS. I’m a little embarrassed to admit that to this day, I do not have a good grasp on what the disease does, how it works or doesn’t work. I know this – it is an autoimmune disease that causes scarring in my glomeruli, rendering my kidneys unable to process and clean my blood appropriately,
It is very strange that I am a Harvard student going into his fourth year, majoring in biology, and I do not understand the specifics of the condition that has had such a monumental effect on my life. This does not really concern me though, because I know that it is my ability to remain so mentally aloof to my disease that has let me move through life as well as I have.
I’m in Vinalhaven, Maine right now. My dog Razzle just woke up and started looking for me. She wanted to go outside. She’s a black dog, so I clipped a funny red flashing ball to her collar that let’s me see her at night. It’s awesome having her – she is a service dog I got through the Make-a-Wish foundation to help me with my peritoneal dialysis machine. She was trained to wake me up as I slept through the machine’s incessant beeping. I do not have a hearing problem – I’m just a really heavy sleeper.
Dialysis today went better than usual. Once everything was all set and I was chugging along, I felt quite relaxed. I used two sites in my fistula that I’ve grown quite fond of. The arterial site I used was a little close to my wrist, but farther from my anastimosis than the spot I usually use. The venous site I chose was close to my elbow, a surprisingly plump section of vein following a very narrow section. For some reason, I could feel the blood returning to me through the venous site at 500 ml per minute and I was quite confident that nothing was going to be wrong with the treatment. I slept for about an hour of the two hour fifteen minutes, which is a nice treat on the Nxstage machine. When I was doing in-center hemo dialysis at Children’s hospital, I preferred to be in the morning schedule, because I could wake up at 6:30, get to the hospital, either by bus or taxi, and be asleep from the moment I was connected to the moment I woke up. On this new machine I’ve been using, sleep is much harder to come by.
I’ve been doing dialysis on the NXstage system one cycler for about six months now. Changing provided an incredible improvement to my life. I haven’t been able to enjoy Vinalhaven this much since I’ve had to switch from peritoneal dialysis to hemo dialysis. Before NXstage, I had to leave the island with one of my parents on the seven AM ferry and drive to Bath, Maine, where I would receive treatments for the standard three day a week schedule. This completely changed the feeling of vacationing at Vinalhaven, where feeling isolated, mellow and connected to nature are major parts of life. Aside from Vinalhaven, NXstage has improved my life in a wide variety of ways. I no longer suffer through the frustration of feeling drained and tired for entire days. I can take any class that I want, because I can schedule dialysis around my life, instead of my life around dialysis. I have more energy. On three day a week dialysis, patients are forced to drink as little fluid as possible because they have no way of getting rid of what they drink in between treatments. Typically, this is important because too much fluid in one’s body can cause a person’s blood pressure to raise dramatically. For me, however, if I drank too much fluid between treatments the removal of it would cause my blood pressure to plummet to levels where I felt extra cruddy, regardless of what I my BP was at the beginning of the treatment.
I just made myself some toast and tea. I’m not sure why but toast with margarine and jelly has become a new favorite of mine. The tea is decaf, which is unusual, but probably good, since it is midnight.
