Well, it feels like the last three months have just been a blur. I cannot believe that it is already May. It seems like just yesterday I was just plugging along, working a bit, making my way slowly back to a relatively normal lifestyle. We sort of had a little hiccup. Actually, we are still dealing with the effects and though things seem to be coming along pretty well, it was a big reminder of just how fragile my health is. The last few months have had some of the scariest moments of my journey thus far.
It all started back in February, the week of Valentine’s Day. Looking back, Eva and I had recognized that I had been having a bit of trouble breathing and that my energy was kind of down but it had happened so slowly that we really had not noticed. I had gone into the office that Wednesday and worked a full day as I had soccer that night. In the evening, I made my way over to the employee store to get a snack and decided to take my blood pressure on the automatic machine right there. I had a bit of trouble adjusting the cuff and when I did the test, it got really tight, to the point that it was painful. I canceled the test, readjusted the cuff, and tried again. This time, I sat through the pain and the reading came back 230 over 140. My whole life, and even during chemo, I was always right around 120 over 70 and so I just shook my head and figured that the machine was broken and did not think much of it. I went and played soccer that night. I was not very useful on the field as my lungs prevented me from doing much running. I just stood in front of the goal and tried to deflect as many shots as I could. We did all right but ended up losing 2-1. Not all that bad for being a man down and for me being basically a stationary player.
Thursday was Valentine’s Day and I, being the beacon of preparedness, had yet to actually purchase the gifts I had in mind for Eva. I worked my last few hours for the week in the morning and then ventured off to the Beverly Center. I picked up a few things and then made my way back to the apartment. On the way back, I noticed that my ankles were fairly swollen. They were almost hanging over the edges of my shoes. That was odd. Later Eva came home. We had been planning on doing the run/ride thing to the fountain, but I mentioned that I might only be able to go half way. She asked why and I showed her my ankles. She was a little shocked. I had a scan scheduled for Friday morning so just figured that we would stop by Dr. Isacoff’s office afterwards. We called my father and then, though I was reluctant, she, smartly, got me to call Dr. Isacoff that evening to see if there was anything we should do. He said to raise my feet and to come by after my scan the next day.
Friday morning my father picked me up and we went to UCLA for a CT scan. I had had a rough night as I had a bit of trouble breathing (we would later figure out that it was because I had fluid in my lungs) and it felt like my heart was just working really hard. It was just pounding and skipping beats and sort of freaking me out. It was not painful or anything, but it felt like my heart was trying to break out of my chest. In the morning, I generally felt OK but I did not want to have many more nights like that. This was probably my 6th CT scan so the procedure was pretty routine by this point. The scan went smoothly and then I went over to Dr. Isacoff’s office. We met and chatted a bit in his office and then he did a quick exam and took my blood pressure. My diastolic was over 200, he gave me a look, and I knew I would be going into the hospital. My dad related the “broken” blood pressure machine story at work to Dr. Isacoff, and he gave me another look. One that each of us has seen at one point or another, that made me feel about 2 inches tall. We all had a good laugh and it sort of became the joke of the day.
My father and I walked over to the emergency room at UCLA. I felt a little funny walking into the emergency room but I guess I got over that. We actually got all the paperwork filled out and I got into a bed pretty quickly. I was impressed. They put all the little monitors on me and then the flurry of testing began - an EKG, ultrasounds of my legs, ultrasounds of my kidneys (twice), and a CT of my head. It was a full day. Early in the day, they had given me this spray to try to bring down my blood pressure. They say that if it gives you a headache, the spray is still potent. Well I got one major headache but my blood pressure stayed up in the 180 range. That headache made most of the afternoon and the evening fairly unpleasant though I was amazed at the care I received. I must have seen about a dozen different doctors, interns, and residents. My father was with me for most of the day and then, after work, Eva came over and stayed pretty late. I cannot tell you how much strength having my wife around gives me. I know it was hard for her to see me in that state, but it was comforting to see how well I was being taken care of. At one point, I started feeling a little funny, and then I threw-up. The last time I had thrown-up was my first day on the Isacoff weight gain diet when my body just was not ready for an ice cream sandwich. I am a pretty violent thrower-uper, but I managed to get it all out and calm back down. Sometime around midnight, a bed opened up on the cardiac floor and I was wheeled up. I thought I had enough strength to pee on my own, but it was a pretty long pee, and I got tired, and then when I sat down on my bed, I threw-up again. I think it kind of freaks out the nurses when the first thing a new patient does is pee, get exhausted, and throw-up. Oh-well.
On Saturday, I had an echo performed and my heart looked pretty good, but it was working really hard as my blood pressure was still really high. In fact, the next few days would be spent, pretty much continually, increasing my medicine until my blood pressure was finally brought down into a reasonable range. Dr. Isacoff had a few words of encouragement for the cardiac team to meet that end. He does not always display the best people skills but it is nice to have someone like that in your corner. Things just seem to get done quicker. They had suspected it on Friday and by Saturday, the consensus seemed to be that I had Hemolytic Uremic Syndrome (HUS). I had never heard of this before but it did not sound good. Of course, I wiki’d it and found that it is a condition where your platelets clump up on the walls of your capillaries and slice up your red blood cells as they go by. As a result, you platelet and red blood cell counts plummet and all the sliced up red cell remnants end up clogging your kidneys. When your kidneys start suffering all sorts of things happen. Your blood pressure goes up (in my case, way up), your body cannot process fluid, by-products start accumulating in your blood which can cause you to feel pretty bad, and on and on. It turns out that the culprit was almost certainly Mitomycin C, one of the chemotherapies that I had been getting over the last year. What is interesting about chemo-induced HUS is that the onset can be delayed quite a bit, even over a year after receiving the chemo. At a certain point, the toxins from the chemo trigger this process and then, fairly suddenly
you have HUS. The treatment is plasmapheresis, which is where they take your blood out of your body, centrifuge out the plasma, and then give you new plasma. To do this they need a fairly high volume catheter. My purple power port was not going to work, so Saturday evening, a nice young cardiologist did a little minor surgery and inserted two tubes into my neck. She was a little hesitant about the operation as my platelets had fallen to around 40,000 but she pulled it off and everything looked good. The next day, they hit 17,000. I wondered if I would make the top ten list for people with the greatest range on their platelets – 17K here and almost 1 million after the splenectomy. Within an hour of the little operation, the tubes were in use and I was getting my plasma exchanged.
Check out the plasmapheresis machine. On the left are about 12 bags of plasma that would be replacing my plasma. I was and am so thankful for the wonderful people who donate blood.
My hospital stay continued through the following Friday and was pretty pleasant. I had incredibly caring nurses that took great care of me and were just amazingly nice. My roommate was a bit of a character - a salty old fisherman that would give the nurses a bit of a hard time. I could not help myself from laughing but every time someone would come in and ask him how he ended up in the hospital, he would just put it out there for them in a big, not gonna take any crap, old man voice, “Well, I ran over myself.” This would usually get a pretty surprised reaction from the inquirer and then he would elaborate. I guess he had parked his car in his driveway, which is on a bit of an incline, and forgotten to set the parking brake. He got out and made his way to the back of the car (I think it was an SUV) and then the car started to roll. He jumped around to the side and shut the driver’s door to prevent it from being pried off on a pole and then tried to reach in through the driver’s door to steer the car as it was rolling back down the hill. Well, he sort of got off balance and ended up turning the wheel so that the front of the car started coming towards him and ended up running over his foot. Then, he was dragged by the car down the incline, and across the street. The car was brought to a stop by a fire hydrant on the opposite side of the street with him sort of halfway under. It is terrible, but I cannot help to smile as I picture the whole episode in my head. I don’t think the hydrant sent up a geyser of water but picturing that is even a little more amusing. He was generally in good spirits and even he would laugh as he would tell it, so that makes me feel better about chuckling. Just to give you more of a sense of the kind of guy he was, doctors would come into the room to check up on him an he would greet them with, “What the hell do you want?” They would say what they were there for and he would generally be fine and amiable after that. It totally reminded me of the skipper from when I was fishing in Alaska – a salty old man and quite a yeller, but if you yelled right back, it would sort of even the playing field and then you could have a conversation.
Otherwise the hospital stay was not particularly exceptional. There was some good bonding time with Eva and my folks. The highlights were when Eva would come into the bed with me.
We did not really let anyone know what was going on, so don’t feel bad if you did not get a phone call. It just seemed like this was something that we needed to deal with. There were, and continue to be, pretty scary moments. I got my plasma exchanged everyday and got to know the plasmapheresis nurses pretty well. One big highlight was a little gift that Eva brought me on the second day of my stay, an iphone. How did she know? That definitely kept me amused. What a wonderful wife. Going for walks down the hall were the adventures of the day and by day four, I had patio privileges, which was really exciting.
A breath of fresh air. What a wonderful thing. Nice outfit, ehh?
Later, my dad brought me a scarf and I was able to blend in a little more. On my way out this time the nurses made sure I was not trying to break out and head home.
Dad likes to keep it interesting.
Everything was semi-stable by the end of the week so they let me go home for the weekend with the plan that I would do outpatient plasma exchange during the week and they would just monitor me pretty closely. They sent me home with a crapload of blood pressure medicine and told me to monitor it during the day. I did not think much of it at the time, but looking back, I was a bit heavier than usual which was a little odd, especially after a hospital stay.
It was very exciting to be back home for the weekend. Eva and I just hung out. I got a shower, which was no easy process because I had to saran wrap my neck to keep the catheter dry. I tried not to scare any children when we went out by wearing a scarf to hide the protruding tubes from my neck. My ankles would still swell quite a bit but we just parked me on the couch and kept my feet up. I did not do all that much for the next few weeks except hang out and go to plasmapheresis on the weekdays. Eva and my parents would take turns taking me. Going to plasma exchange with me was not all that exciting so I really appreciate what they did. Once I would get set up in the bed and hooked up, they would give me a dose of benadryl to prevent a reaction to the plasma, and I would be knocked out. Those little naps were actually really nice. One of the best parts was that they would give you warmed blankets to make you comfy. Oh-man was that sweet. One little outing that Eva and I made was to the zoo. I could not really get around all that well but for $25, pretty much anyone can rent a rascal. I thought, “When else am I going to get an opportunity to legitimately rent a rascal?” and though I felt a little funny, it was very enjoyable and fairly hilarious. Eva did make me get up and walk through the spider exhibit, which was probably good for me, but there would have been no way that I would have made it walking around the whole zoo on my own. I could still get around, but I was just slow and would tire very easily.
On the 6th of March, I swapped out the tubes in my neck for some tubes in my chest as the neck tubes are only good for
up to 21 days. The chest tubes are much easier to hide though they are still a little obtrusive. Again, showering is a whole process as I have to prep by wrapping them in plastic, try to shower with minimal use of my right arm, and then change my dressing afterwards. Eva describes my behavior like a little child. It takes a lot of prodding to get me in there, but once I am in, I do not want to get out. I have come to appreciate and relish in the wonderful feeling of showering and I actually now long for the day that I can actually submerse myself in water again. People rarely realize the simple pleasures in life like showering or being able to take a dip in a pool.
During this time Eva and I had planned on going to Prague to see Eva’s folks. Well, I was in no shape to travel, so Eva cruised over. I was pretty stable and my folks were more than willing to look after me. It was probably not a good idea to leave me alone so I ended up living with my mother for a few days in my apartment. It was definitely a change from living with my wife but it worked out really well and we adjusted to the situation. Eva really enjoyed spending time with her parents though there was a little excitement that sort of soured her trip. I let her tell you about it. While she was gone, a few college buddies came into town to keep me company for the weekend. It was great to see John and Caroline, Tom, Pesto, and Adam and Tran. We played some mean games of scrabble and, of course, there was a bit of wrestling. As always, I remained on the sidelines.
Once again, my father was very excited to break out the government issued tomato juice for Bloody Marys.
Tom always seems to have a smile on his face. You can almost feel his excitement. Enough celery for you Tom?
During my time out of the hospital, I generally felt pretty good but I was still dealing with quite a bit of fluid. My ankles would be huge by the end of the day and when I would sleep with my feet up, my face would be all swollen in the morning.
Sometimes I would look like a boxer after a bout, as my eyes would almost be swollen shut. Here, you can sort of tell that I was sleeping on my left side as that side of my face is slightly more swollen. On the weekend, of the 22nd of March, it got pretty bad. I was up around 190lbs. (my usual weight was about 170lbs.) and I had a hell of a couple nights. I had been having a little trouble breathing during the night anyways but Saturday and Sunday were pretty bad. As the water would redistribute in my body from my legs into my core, it would end up filling up my lungs to the point where I could barely get a breath. I, like others who experience this, realized that if I sit up a bit, the water drains enough to enable me to breath. Usually this is done with just one or two extra pillows. By Sunday night, the only way for me to get even an hour of sleep at a time was to have about four couch pillows under my chest and to “sleep” sort of facing them. It is hard to describe but I think it looked more like I was trying to push around a bunch of pillows than if I was lying down and trying to sleep. On Monday we were meeting with Dr. Isacoff anyways, and Eva suspected that I might end up back in the hospital. She was right, and that was the start of my second hospital stay.
This time I pretty much knew the drill, and in addition to getting my plasma exchanged, I would also be getting dialysis to try to get the water off and allow me to breath. Dialysis was pretty similar to plasmapheresis, they hook your tubes up to a
machine, your blood goes out, gets filtered, and comes back in. They would take off 4 liters of water in each session, which made a world of difference. Think about that, nine pounds of water in just a few hours. After the first session I could already breath easier. Eva and I were not happy that I was back in the hospital, but we both knew that I really needed this and that getting the water off would really help me. I had dialysis five days in a row, each day taking off another 4 liters. By the end I was a meager 164lbs. They had taken over thirty pounds of water off of me over the week. What a weight loss plan – no exercise, no diet restrictions, and 30 pounds in a week. Actually, this was the beginning of the renal diet, which is pretty restrictive. What was surprising was that over the previous month and a half, I had actually lost a fair amount of muscle mass just from not doing much. This loss was disguised by the water that I was carrying so once the water came off, all of my muscles were really small. When the water got out of my legs they were so skinny that I did not think they would be able to support me. I think “chicken legs” would be an accurate description. Once again, by the end of the week, I was pretty stable and was ok’d to go home. I almost had to break out as my nurse on the last day needed some convincing, but Dr. Isacoff took care of that. It was good to spend the weekend at home and the next week would be the start of spending some long hours at UCLA.
Now my weeks would consist of getting my plasma exchanged Monday through Friday and getting Dialysis Tuesday, Thursday and Saturday. On some Fridays I would also get an infusion of Retuxin to try to stop the autoimmune aspect of the HUS. Considering that plasma would take about 3 hours, dialysis about 4 hours, and retuxin about 4 hours, I was spending a fair amount of time at UCLA. Even though it probably would have been easier to just be in the hospital and do the inpatient thing, I was so thankful to be an outpatient. Just the little bit of activity hanging around the apartment kept me in such better shape than sitting in a bed all day. And though so much time was spent at UCLA, I was able to maintain some semblance of a normal life.
This was pretty much the routine for the last 5 weeks. There have been some ups and downs but it has been a fairly smooth ride. My body has had a hell of a time shaking the HUS and I am still not really in the clear. Eventually, we got me down to my “dry weight” which was around 150lbs. I am a skinny little version of my former self. It blows my mind to think that I was carrying about 45 pounds of water in my tissues. No wonder I could not get around all that well. The kidney doctor described my inability to breathe as essentially drowning – yikes. I am much more chipper these days and though I am still pretty limited on my activity level, I can at least get around and walk and stand for a pretty good amount of time. One hard aspect of the last month has been limiting my fluid intake. Again, I hope all of you appreciate how wonderful it is to be able to drink freely. Since
my kidneys are pretty much out of commission, most of what I take in has to be taken off though dialysis. I now use a little kid’s cup for my beverages and take small sips when I drink. I dream one day of having a slurpee again. Hopefully I will get there. C’mon kidneys, wake up.
Well, that pretty much brings us up to date. I cannot believe it is May already. The last three months just flew by. It is amazing how time passes when you are just focusing on trying to get your body back on track. We seem to be doing ok at the moment, but if anything, this was a reminder of how quickly things can change. Once again, I am trying to take baby steps back towards normalcy. I just have to keep my eye on the prize.
Carpe Vitam and Live Strong,
Tyler
