I stopped by Dr. Isacoff’s office today, as I often do before plasmapheresis, just to check in on how my body is progressing. My labs from the end of the week before and the beginning of this week were looking pretty good. My platelets were up over 120K and actually approaching the normal range. Nobody wants to jinx it, but it looks like the HUS process may have subsided. There is still quite a bit of annihilated red cell remnants in my blood as my LDH was still very high (500-600, normal is under 200). It is hard to say, but the thinking is that there are residual clumps of platelets from when the HUS process was still active and that those clumps are probably still slicing up the red cells. Hopefully, my platelets increasing means that the clumping has stopped and over time the residual clumps should dissolve. Again, I do want to speak too soon, but the whole HUS ordeal was quite trying. My body has been dealing with it since February 14th and it took 2 6-day hospital stays, about 70 plasmapheresis sessions, and 32 dialysis sessions (which continue at three times a week). The medical costs charged for this little episode were over $150K (the contracted rate for the insurance was about half that and luckily my costs were just a very small fraction of that – Again, I cannot stress enough how important health insurance is. If you are young and think you are invincible, don’t be stupid, get insured!). I am sure no one will doubt me when I say that I do not want to go through all that again. Looking back, though, I generally felt ok most of the time. I have been very lucky to have only had a minimal amount of pain during this last episode and my whole journey, thus far. I also feel pretty lucky to have maintained a decent appetite. Not only is it good for me to keep my weight up, but it is also reassuring to Eva to see me pack away the calories.
Anyways, being that my labs were decent and I looked and felt ok, Dr. Isacoff decided that we would see how I would do without plasma. This was a very exciting development as I immediately realized how much more time I would have for myself. Now, I had grown very attached to the whole plasma team and would be sad to not see them every weekday, but like a lot of these healthcare situations, people are very understanding and generally encourage you to get healthy enough not to see them anymore. That Wednesday would be my last planned plasma exchange and then the plan was just to monitor my labs and see how my body could handle being off the plasma exchange.
Thursday May 8th, 2008
This was my first day with no medical obligations in a very long time (aside from the occasional Sunday). My dad had the day off and came up and we decided to go horseback riding. Now keep in mind that my whole body is still fairly weak as I have not gained back much of the muscle mass that I lost during my hospital stays but we figured that I could probably handle sitting on a horse. We were right, more or less. When you sign up for a ride, you get the option of going for the 1 hour ride or the 2
hour ride. I was a little hesitant about spending 2 hours on a horse as I remembered the pain from the last 2 hour ride, but how could I say no when I saw that excitement in my dad’s eyes? The 2 hour ride takes you from the stables on the Hollywood side, up into Griffith park and to the top of Mt. Hollywood and back. There were still a fair amount of wildflowers around which made the park really pretty. The ride was not much more than a walk on horseback but I still just love being on top of a horse. I just chuckle to myself when I am up there. The view from the top of Mt. Hollywood was ok though fairly hazy. We did have one moment of excitement when a couple runners came out from behind a bend and startled the horses. Both my father’s horse, and my horse jumped just a bit and then ran a few quick steps towards the other side of the trail. Somehow, my father and I managed to stay on the horses so we counted that as a victory for the day and then proceeded very cautiously down the hill. By the end of the ride my ass and my knees were in such excruciating pain. My butt is lacking the padding that it once had and my legs were just not used to being bent in that position for so long. During the last stretch I was wondering if I would have the physical strength to get myself off of the horse. In my head, I was trying to figure out alternative ways of getting me off of the horse without having to resort to a little crane picking me up by my britches. When we finally got back to the stables, I focused and gathered my strength and was able to get off of the horse under my own power. I was really glad I did not lose face in front of the cowboys. It felt really good to do something fun on my first day free from plasmapheresis – one little baby step towards normalcy.Sunday May 11th,2008
On Mother’s Day, Eva and I cruised down to San Pedro in the afternoon for a little BBQ for my mom. It was really good to see the folks, even with all the time we are spending together these days. My dad outdid himself, as he often does and served up quite a meal. Eva is so wonderful and put together a few little gifts for my mom and I picked up a very decadent Belgian Brownie from a little bakery in Beverly Hills. My mother, in a testament to her spending her time how she likes to, started a little project for Eva creating a pattern of a dress from the actual garment. Eva really likes the dress and was hoping to recreate it with some new fabric. It was really touching to see my mother really enjoying the process and Eva was excited that the dress will see another incarnation.
The few weeks between then (5/11) and now (5/24)
Again, I do not have all that much free time but I have managed to get out and about a bit. I have been on a few bike rides recently and can actually keep up with Eva if she runs at a fairly slow pace. The day after Mother’s day, I took the cruiser out and went maybe three miles on fairly flat ground. That may not seem like much, but on the cruiser, the tiniest little incline requires an incredible amount of strength. I sort of felt like a weak little dork as I was struggling to pedal hard enough to get up this really small incline on the street below my parent’s house. Yeah, there was no chance of getting up my parent’s hill. I even had trouble pushing the bike up the hill. Luckily, my strong wife came to my rescue and pushed my bike up the hill – how embarrassing. Here I am taking a little break at the halfway point. I love to nap these days.
Eva and I have gotten out to Holmby a few times and played a bit of golf. Her game is really coming along and she is definitely
ready to start hitting the regular par 3 courses and I even think she would do ok on the full length courses (though that maybe a little premature as the tee off on the first hole would basically be the first time she has swung a driver). At Holmby, she will very often get a handful of pars and one or two birdies are not all that uncommon. The last round we played, I still edged her by three strokes, but I fear that my time is coming. I just hope her victory dance is not too over the top.
On Saturday, the 17th of May, I convinced Eva to go to a track meet with me. The meet was the Adidas Track Classic at the Home Depot Center and had a decent field of professional athletes. It was really hot but just barely tolerable at the top of the bleachers where there was a slight breeze. Some of the highlights of the day were a number of “fastest in the world this year” times including the top four finishers in the women’s 3k, seeing Lagat run a 3:35 1500m, and seeing Jenn Stuczynski set an American record in the women’s pole vault. It will be interesting to see how many of the athletes that we saw compete, will make it to Bejing. In the middle of the meet, they had a kids 80m dash. That was pretty cute.It had been a long time, but last Thursday, I actually got out on the water and did a bit of fishing with my dad. It was a little breezy and there was a decent swell so we opted to stay inside the harbor. We fall into the lazy fisherman category, so we really did not get onto the water until about 10:30am. I guess all the fish had already eaten by the time we got out there though we did manage to avoid getting skunked by bringing in one small Calico Bass. We let him go and a bit later decided we had had enough and went for lunch at the Chowder Barge. It was surprisingly empty when we got there though it was a little amusing to see one guy at the bar with a big pitcher in front of him, watching Jerry Springer. My dad and I joked that this may very well be this guy’s perfect afternoon. I am always impressed by people who figure out what they want and make it happen. Well done boat man. After lunch we cruised back to Cabrillo, pulled the boat, and once it was washed we found our spots on the couch and in my dad’s chair and crashed out. There is just something about the water that takes it out of you. All in all, it was a good day.
Otherwise, I have just been doing the dialysis thing and hanging out at the apartment. Eva and I watch a lot of movies. I get the impression that she thinks it is not all that productive, but I try to think of it as taking a survey course in film. At least that lets me sleep at night (and if I cannot sleep, I just go watch another movie). Dialysis is becoming like a little routine, and because I do not get benydrhl, I actually drive myself there and back occasionally. That gives me a little sense of independence, which is nice. My labs have been pretty decent, and as long as I take my phosphorus binders, my diet has returned to being fairly normal. I still have to limit my fluid intake but not quite as much as at the beginning. Eva has put the kibosh on a few foods that my system just really cannot handle – burritos, quesadillas, McDonalds, and anything really greasy. I guess it gets through my system, but the evening afterwards is not very pleasant for either of us. Oh-well.
-TN
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