People always say that bad things occur in sets of three. I absolutely don’t believe this to be the case, for bad things can happen in singles, doubles, triples, and even more. In fact, I would bet that most people have been through times in their life where they encounter hardship after hardship to the degree that they feel almost jinxed and conspired against by the three fates. We have all experienced those periods while we journey through life when, just when you think all things are going well, you are blindsided by tragedy or adversity.
The hardship I have lived through continues to this very day, though admittedly much less. The onslaught of sickness which racked my body and made it necessary for doctors to put me into a coma, was more or less defeated, but I soon after was the subject of another medical emergency that set me back significantly. This secondary medical condition, oddly, turned out to produce more concern in the long term than did my initial sickness, from which I was on my way to recovering from.
To those of you who have had the privileged joy of reading my previous entry, you may recall I had just gotten out of ICCU and was moved a couple floors up to recover. Again, by coincidence, some of my friends showed up and kept me company for a while in my brand new spacious room. Finally, I was one step closer to getting home, or so I figured. Yet, from the time I came out of the coma, to this particular point, many would tell you I didn’t look exactly normal. That is to be expected when just coming out of a coma of course, but my eyes looked rather odd, for they were as big as saucers and were nearly bugging out of my skull(which people also tell me on occasion is very thick by the way). Though this was brought up to the doctors, they figured it was just me coming off the massive amount of drugs I had been on in the ICCU ward.
My friends eventually left, and despite me being in a coma for over two weeks, I was still really exhausted for some reason. I had no problem lying in the bed and slipping off into slumber. Yet, it was interrupted after just about fifteen minutes by one of the nurses, who informed me somebody got their wires crossed and this wasn’t my room after all, but was reserved for someone else. They promptly rolled me down the hall in a wheelchair to another room, which I had to share with an older gentlemen who was fast asleep and I found myself immediately jealous. After I was helped into bed on the other side of a sea blue curtain, it didn’t take me long until I too fell into a deep sleep.
When I awoke I heard the chatter of the man's family surrounding him. I had the odd unreasonable recollection of how peaceful the ICCU was, which of course was nonsense. Yet, I felt extremely shy and for some reason vulnerable in that place, in a room filled with people I didn’t know. I was pretty uncomfortable there, even more so concerning the man’s private condition, which I won’t disclose. However, it wasn’t long until I was itching, not in the literal sense, to get out of that particular room. The nurses informed me that they were trying to find a private room for me, for which I was grateful. Even my family and friends didn’t stay too long in that room, because either they felt uncomfortable as well, or it was due to the lack of space.
Either way, I was extremely pleased the next day when they found me another room. A private one as well. However, this round of “musical rooms” wasn’t over just yet. Once they found me a room, they informed me of my continuing need for dialysis. After getting settled, they discovered that the room couldn't handle a dialysis machine because, from what I gathered, the room couldn't supply the power it takes to run the machine. They did have another room available though, to my delight, which somehow was able to shine through my frustration, and I was quickly transported there. I wasn’t very angry at the nurses though, I am sure it happens. Plus, it must have not been very fun for them. I had quite a few nick-knacks, boxes full, that people had brought in for me and that the nurses had to carry over every time I moved rooms. Finally, I was in the room I was to stay in . . . for a while.
My eyes were not getting any better and despite frequent inquires the doctors stuck to their guns more than a bitter Midwest republican, and informed my family, again, it was just due to the drugs wearing off. As for me I didn’t worry about it too much, although my family and friends were kind of weirded out by it, similar to how my friends are weirded out every time I wear a skirt. I probably would have been worried as well, but at this time I didn’t have a mirror to look at myself yet so, as far as I knew, such fears could've been motivated by an understandable paranoia. I would eventually find out this wasn't the case.
I didn’t have much in the room, but I was glad that I had a TV and my cell phone at least. This turned out to be a necessity, for although I could have read, my mind would easily lose focus and I would have to reread things over and over again. In addition, my bill on that particular 1-900 number was overdue, so much of my social life through my cell was thereby incapacitated. It was horribly frustrating, so I watched TV, which may say something about the very nature of television since I was able to pay attention to that quite well. It turned out to be good though because I don’t know if any of you have had the pleasure of having dialysis, but its not exactly exciting and I came to dread it after a while. Although they encouraged me to rest pretty much all the time, I found myself getting anxious and staying up to the wee hours of the morning. Thank you Al Bundy for keeping me company during those trying times.
Most the times the dialysis was completely painless and worked as it should, but on occasion there were some issues. I had a stent which was inserted in the right side of my neck just below my jaw which served for the dialysis treatment and gave me a series of five scars. What would happen at times was the stent was having trouble cycling my blood, which would set off an alarm on the machine itself that was rather annoying and relentless at times. Also, it would tend to build up backpressure which would cause pain. This made the doctors nervous and they decided to call it quits and continue the next day. As I recall, I was hooked up to the machine for about an hour to 90 minutes at a time, so I learned awfully fast to use the restroom before I was hooked up. Especially because they had me constantly hooked up to an IV to flush out my kidneys so it was like ever 15 minutes that I would have to urinate. It wasn’t very fun. Hows that for some T.M.I?
This was another cause for humiliation as it turns out. I do like my privacy as does everyone when it comes to this kind of thing. Well, they should anyway. I have certainly seen hobos downtown that could stand to be a little more modest. Anyways, They requested I urinate in a, turns out, a very badly designed container so they could measure how much of the fluids my kidneys were processing. Yet, I was so embarrassed a few times I got out of bed on my own, not a good thing by the way, and I was scolded for going to the toilet on my own (I still can’t believe I made it), as well as getting out of bed without assistance. They happened to be rather more upset about the latter than the former. Yet, they took pity on my pitiful self and only on occasion requested I use the aforementioned container, but still said that I had to call the nurse at the front desk every time I felt the urge. This was another reason for embarrassment, but I didn’t complain. Why make their job harder than it is? I’m sure it was a duty they weren’t exactly thrilled to perform.
I needed several treatments of dialysis and each time I hoped it would be my last, but alas, that was not to be. In addition, every time the IV bag would run out of fluids I would hope they wouldn’t bring another in. It was so great to be disconnected and free to “move about,” but most the time they would just bring in another bag and hook me up to it. I almost felt like reaching up, grabbing the bag, and squeezing so the fluids would get into me faster, under the false hopes that the current bag would be my last. So, whenever I wanted to get up and use the restroom, I would have to lug that terrible coat rack looking stand around which was more of an obstruction than you would think.
It was around this time and in this room that I first caught a sight of myself in a mirror. I didn’t really even recognize myself. Turns out my friends and families “understandable paranoia” was actually quite accurate. I not only looked rather creepy, but under the influence of the most expensive speed money could buy. My eyes were wide and bulging out of their sockets, but not only that, I also had a huge sore on my tongue from the tubes that had been down my throat for so long. Due to its appearance, this almost bothered me more than anything and I asked more than a couple doctors what could be done. They informed me it was an ulcer and nothing could be done, it would have to heal on its own, which would take some time. It certainly did. I didn’t think it was possible to scar your tongue, but apparently it is. It’s hard to notice, but every time I slap my tongue against an Otter Pop you can tell its there.
It was not long after this, that a physical therapist visited me and informed me that I was to try and walk with her down the hall the next day, which I didn’t feel so good about, for my weakness was very pronounced. Yet, I also felt a little excited to be able to get mobile again. True to her word, she showed up the next day with a wheeled walker and a wheel chair. My folks were there at the time so she requested my father to follow me with the wheelchair right behind in case I fell. We started off right outside my door and I struggled to make my way down the hall with the walker, whose wheels were worse than a grocery store shopping cart, but this could have been due to the fact I put almost all my weight on the thing. The nurse walked along side me guiding the IV stand. After only about ten feet or so my legs would shake almost uncontrollably and was forced to sit down after twenty feet. I believe I walked two more times in increments of twenty and was exhausted. They wheeled me back to my room and I got back into my bed ashamed my will power wasn’t able to provide my muscles any extra strength to toss away the walker and sprint throughout the ward. The physical trainer eventually asked me, and recommended, that I go to a rehabilitation center for a couple weeks, which I turned down. I felt embarrassed enough as it was needing help to move around and I opted to rehabilitate myself after I had left the hospital.
She didn’t reply either negatively or positively and kept working with me from time to time. At other times it was just the nurses who would help me walk about, and slowly I kept building back strength in my legs and proceeding further down the hall. I began to walk halfway and then the full length of the hall. As we walked I had many interesting conversations with the nurses there that kind of startled me and gave me further insight into how serious my condition really was. They asked me what was to be the purpose of my life, for one of them suspected it must be something great to live through such a thing. One asked me how it would profoundly change my life, and still another asked, maybe half jesting, if I saw “a light” or anything, which I didn’t. However, to be confronted with such a menagerie of profound questions, prompted some serious reflection as well as another reminder what I had just been through. After a few days, I was given the great news I would be off dialysis and my kidneys had significantly improved. They tore the stent out of my neck, which smarted and bled profusely. I had to maintain pressure for about twenty minutes, which I did almost to the degree I bruised myself, for some reason paranoid I might bleed out if I didn’t. Finally, they took the blood soaked gauze off my neck and replaced it with just a regular Band-Aid patch. I still had those pesky IV fluids going in, but I felt freed up immensely.
I continued to walk, sometimes with the physical trainer, sometimes with nurses, and sometimes with my family. Eventually, I was able to circle the ward once, twice and finally three times. My legs got relatively much stronger and one evening I was able to, finally, with my father, circle the ward three times. I returned to my room tired in both a sleepy sense and physical sense. My father realizing this stayed a few moments and said he was going to leave. He wished me good night and left. Though my appearance was still messed up, more so than normal, I was feeling good and very positive. The doctor came in and told me I was to go home the very next day and I was so excited I don’t think he left the room completely before I got on the phone and called my folks. Needless to say they were very thrilled that I was to be discharged. After a brief and happy conversation I hung up and prepared to doze off for the evening, if my excitement would let me that is.
A few minutes after that, my friends Amber and Aaron strolled into the room to visit me much to my surprise. I was quick to tell them the news and they were indeed thrilled I would be out of there the following morning. After some brief BS-ing, I was informed that it was my friend Aaron’s birthday and they were to be somewhere for a party and celebration, so they couldn’t stay long. I offered him a happy birthday and regrets that I couldn’t be there. As we sat there talking the alarm on my IV started going off indicating the bag was empty. I asked Amber what the noise was, which I should have known for I heard it several times before. Thus, this probably indicated I was feeling a great deal of confusion. She informed me that it the alarm for the IV because the fluid was empty. I’m pretty sure I would have checked that out myself and saw the bag empty, but I didn’t for some reason. Again, I asked Amber what the noise was, which she found odd to say the least and informed me a second time. The third time I asked she knew something was definitely wrong with me, though she has probably always known that to a degree being my friend, but even more so this time. My hand began to shake which I just stared at for a couple seconds and then I began to seize.
Now, other than the IV, I wasn’t hooked up to anything else. No monitoring equipment or anything. So, the only alarm that was beeping was from the IV. From what I hear it was kind of panic and pandemonium in the room, but thankfully they knew instantly what must be going on. Immediately Amber and Aaron helped turn me on my side as I slipped into a full blown grand mal seizure. After they got me on my side Amber held me while Aaron ran to the emergency button by the door, which would immediately call the nurse. The following events are so wild that if it wasn’t such a serious and potentially deadly situation, I think it would be almost comical. Indeed, some Benny Hill music behind the events would be most appropriate.
Aaron pressed the button on the door, which was faulty in some fashion and it didn’t work at all. Not missing a beat, he took off out the door and down the hall to the nurses desk, only to find no nurse on duty. He ran down the halls calling for help and couldn’t find a single person until he ran into a cleaning lady. He pleaded with her to find a nurse and told her I was having a seizure, and according to him, unbelievably, this lady just took her time strolling down the hall casually telling him she would find some one.
Eventually, a doctor and nurses did eventually show up and quickly took over Amber’s duties and tried to calm me down. Amber immediately called my parents, who were shocked, and quickly ran over to the hospital. Now, I don’t know what kind of actions they used to stop my seizing, if any, but whatever they did or didn't do, didn’t do the trick and I kept thrashing about. By the time my parents got there, they were wheeling me out and down the hall with me still seizing on the gurney, it had been almost an hour. They ran up to the doctor and asked her what was happening and for all the details she could provide.
Now, I had already met a rather rude doctor when I was first admitted into the emergency room, but this lady, whom I will call Dr. M, was completely tactless and not on the same page as any of the other doctors. This caused some great confusion in a moment of grief and panic, which further resulted in anger. As they talked to this doctor she informed them she believed I was faking the seizure to get more drugs. That would be some dedication there to fake a seizure for a whole hour. Nobody could believe what she was saying and my friend Amber, from what I hear, looked like she was going to jump up and punch her in the grill. My mother was in hysterics and panic stricken when she lamented, “He was to go home tomorrow.” The doctor replied, “Well, I guess he isn’t going to be going home tomorrow now is he?” I don’t know what she was thinking, but how about some consistency there? I’m faking, but your not going to not discharge me?
She somehow came to the conclusion that I was still ill with ARDS, which I had been cleared from, and said that I still had it and could get worse, which doctors before and after denied wholeheartedly. I think this woman was such a, well, “brat,” because she knew she dropped the ball and it took some cleaning lady to be able to find any staff. Yet, at this time I had about six or more doctors and nurses there all for a guy who is supposedly faking a seizure. They couldn’t get me sedated which prompted the doctors to ask what kind of substances I frequently took part in, through which they learned, other than the occasional drink, I was clean. They tried to call the elevator, but for some reason the elevator was not working and they struggled to restrain me while trying to figure it out. Eventually, they got another elevator to work and I again was taken down to the ICCU and away from the worst doctor I have ever encountered.
While I was taken back for the doctors to work on me, my parents and friends sat outside, my mother so upset a nurse called a Chaplin to talk to her and provide some level of comfort and strength. My friends provided this as well, my friend even turning down his own birthday party stating that there was no place he would rather be. I need to take this opportunity to thank them for the strength the provided my mom. As I was wheeled into the ICCU some of the nurses who were very familiar with my case were depressed when I showed back up saying, “Oh no, not our Brandon.” Its amazing the impression you can leave people with without even realizing it. However, I wasn’t conscious at this time to hear these near flattering remarks.
They Finally got me sedated I began to drift in and out of consciousness. I recall them turning me over and giving me a lumbar puncture at one point. At any rate, they once again, not knowing exactly what had occurred, put me into a coma. This time, however, it was not for over two weeks, but for two days while they ran tests to determine exactly what had happened. They determined I needed an MRI and I was eventually pulled out of the coma. I came to and was curious why I was in a different room, which looked surprisingly familiar. It hit me quickly that I was back in the ICCU. Crap. Hoping it wasn’t the case, I immediately reached down to check to see if I had a particular obtrusive tube in, hoping it indeed wasn‘t the case. Double crap. I was simultaneously confused and depressed at the same time. Yet, this was quickly removed prompting the same intense discomfort I had described in the previous entry.
I was transported down to the basement floor where their MRI equipment was located. I was put in the machine, but due to my drowsiness from the sedation, I promptly fell asleep. They had to pull me back out of the machine and wait a good fifteen minutes or so before I became more awake. Meanwhile, this made my mother nervous, for it was taking a little while longer than it should have. After the procedure was complete, I was pulled from the claustrophobic tube and taken back upstairs, where my family and I were informed that my brain was bleeding towards the back of my skull. Something they called a subarachnoid hemorrhage. Figures. I have always hated spiders.
With this revelation came a new medical mystery. Was it the hemorrhage that caused the seizure or did the seizure cause the hemorrhage? The hospital decided they were ill equipped to deal with the situation and though I did speak to a neurologist at their facility, it was determined that I should be transported to downtown Seattle to their neuroscience department. There, they said, I would be seen by several specialists in order to determine the nature and severity of my particular condition. They quickly summoned a ambulance for transport. In retrospect, I would have preferred if they just gave me a bus pass, due to the figures that would arrive at my house concerning the bill for this brief transportation.
I was discharged, thanked everyone for the care I received, and was wheeled down a corridor to the elevator. When coming so close to death as I had, you would be surprised at the kind of things you will find joy in. As the paramedics rolled me down the hall way, one side was bordered by fake trees, upon which hung pure white Christmas lights, which reminded me instantly of the season. Its hard to determine such things like the passage of time when your surrounded by like opaque walls wherever you go. This sight, for some reason, gave me such a profound sense of joy, I still have a hard time making complete sense of it. Although, I was headed towards another medical facility, the idea that I was leaving this one combined with the sight of the simple decorations, gave me such a feeling of joy, I could have almost wept. It was far to soon, if you ask me, when they rolled me into the elevator and the doors closed, enclosing me once again in a all too small enclosure.
The doors opened unto the lobby and I was pushed across, to some embarrassment, into a waiting ambulance. The sun did not shine that day and it almost seemed as dreary and grey as had been my stay within the multiple hospital rooms, wards, and their accompanying decor. Yet, I found the bustling of the people outdoors, going about their daily lives, on foot and within their vehicles, to be a subject of intense interest to me. I began to fantasize about where they were going and what they were doing, missing the freedom I had to move about in such a manner as that. On the way down to Seattle, I had a delightful conversation with a female paramedic, who kept my spirits up until we arrived at the hospital which had the semblance of a old cathedral with a hint of gothic architecture. Although, some might be put off by the spires and exterior decor, I found it quite beautiful as I was ushered indoors.
Yet, the interior wasn’t nearly as interesting to me as I was met with the familiar walls and unimaginative furnishings as my hospital before. I was somewhat disappointed, but realized my trip was one of necessity and thus I kept my feelings to myself, determined to do whatever I could in my power to find the answers the doctors and I were seeking concerning my health. Fortunately, they were expecting me and I had a room to myself. I didn’t have to move even once and I quickly settled in, trying to be as positive as I could. From here on out I was in the care of three specialists, a neurologist, a rheumatologist, and a nephrologist, who visited frequently offering up loads of theories, speculations or possible treatments. The rheumatologist, whom I will refer to as Dr. “R” came in and was, by his own account, shocked. He had received my medial history and was amazed at how talkative I was. In addition to that, he later put in his notes I was surprisingly chipper and of good countenance, which shocked him. He told me that he expected the antithesis to the point of me being quite sickly, depressed and sedate. The odd thing was that my eyes were back to normal. They were no longer wide and protruding from the sockets.
It was his hypothesis, along with the neurologists, that I may have been experiencing “micro seizures” during that time. He hypothesized I may have lupus or vasculitis. However, there was some concern that I may have a blood clot or inflamed arteries in my brain and told me they wished to do an angiogram. I wasn’t too thrilled, because I knew what the procedure was and how it was performed. Basically, what it is, for those who don’t know, is they take a catheter and enter through the groin, running it up through your heart and into your head where they inject a dye which can be picked up by x-ray. Thus, they can look at the blood vessels in your head and see if there is any blockage. Again, I wasn’t too thrilled. Yet, I agreed to the procedure, simply on the grounds that it had to be done, and I was scheduled for the next day, though they were a little hesitant. This hesitance was because my kidneys were not back to normal and they were concerned about my bodies ability to filter out the dye and expel it. After weighing the options and risks however, they decided on following through with the procedure.
I was again transported to the bowels of a hospital and was surrounded by nurses. They administered some sedation and pain medication. Yet, this was not enough to keep me from blushing when they informed me that they needed to shave me. They, as the nurses were at the hospital before, were very professional and kept me covered as much as they could. They moved me into a room that reminded me of the main deck on the Nebuchadnezzar in “The Matrix.” There were flat screens everywhere, some tilted over me, others on the wall, while still others above a desk. All ran separate programs, while others showed rotating 3D renderings of blood vessels, I assume of some other patient.
The doctor came in, obviously former military due to his camouflaged doctors hat, and described briefly the procedure to me. I was told to lie flat and stare straight up, which I did, not wanting to even see the needle they used to do this particular operation. I was informed that I would be notified of the results in real time which was kind of rough for me to hear, for if the results were bad, I would know right away by their words and the tone of their voice. Thus, I became extremely nervous.
The operations started and I felt an immense pressure, much like a large brink was sitting upon me. They told me not to move, and I complied to the best of my ability. Other than the pressure and a little pain of the actually incision, I didn’t feel anything while the ran the catheter up through my body and up into my head. There, they injected the dye and I heard the faint sound of them conversing as my blood vessels were explored. The vessels appeared on the monitors, which I looked at more out of curiosity than necessity. I viewed the black outline of my blood vessels as the dye coursed through my brain, and didn’t see anything outwardly unnerving, but I didn’t look long, due to my nervousness. Thus, I waited as patiently as I could and was surprised that I didn’t have long to wait, which I was thankful for because it had seemed to me that the local anesthetic applied before the incision was wearing off, the pain increasing to a large degree. Just when I noticed the pain increasing, they informed me that it was done and pulled out the catheter and bandaged me up. The doctor came up alongside me and informed me as far as he could tell, there was nothing out of the ordinary with my blood vessels, which was a relief for me to hear.
I was moved back upstairs into my room, while being informed that the results would be sent to all the specialists involved in my care. I did need a few pain killers the following days from the procedure, but was quickly switched to Ibuprofen, which did the trick. It appeared to Dr. N. that I was negative for Vasculitus, but not cleared yet for Lupus. Yet, they seemed a little confused as to what exactly was going on and all sort of options were pondered over. In the meantime, I gave plenty of blood, 12 vials in one day as I recall, and my kidneys were closely monitored for ill effects from the dye. Some of my blood work revealed some abnormalities that pointed towards a auto-immune disease, but were far from being conclusive. One doctor mentioned that I may consider a brain biopsy, which I immediately didn’t want to do, finding it too explorative and thus breaking the Hippocratic oath. Yet, I was informed by the kidney doctor that I could do a Kidney biopsy which is less evasive. I was told that often things that occur in the brain can be detected in the kidneys, which I found interesting on an intellectual level. Yet, due to some of the danger from kidney damage it was decided it would be too risky to do such a procedure.
Daily blood work showed that I was improving, but still I had a bed alarm, which would notify the nurses if I got up. Like the hospital before, the nurses would occasionally visit me and converse over a whole variety of topics. It was during one of these visits she made it clear the bed alarm was necessary for many of the patients there who were recovering from brain surgery. Yet, since I had yet to get brain surgery, my bed alarm was taken off, much to my delight, for every time I moved the dang thing would play a horrible serenade of the nursery rhyme, “Mary Had a Little Lamb.” I had previously asked if there was anyway they could change the terrible song, to which I was notified that nobody knew how to change it. I find this interesting that they could care for brain surgery patients, but couldn’t figure out how to change the song of an alarm.
Even though mine was disconnected, many of my neighbors weren’t offered this luxury for their own safety. I had a older gentleman in the room next to mine, whose bed alarm would go off most frequently. The nurses would come in and try to get him to lay back down, but he wasn’t really able to grasp that he was in the hospital, due to perhaps the pain medication, the surgery or both. He informed the nurses he was tired of playing slot machines and wanted to go into the bar to get himself a beer. They spent many of nights trying to persuade this poor man that he was in the hospital and not in a Vegas gambling establishment.
As my vitals continued to improve, I was informed that I was in great enough health to go home the day before Christmas, much to my delight. It had been a long ordeal and I was anxious to see the outside world once again. However, they told me I would have to come back for periodical check ups and tests, for the answer still alluded all the doctors concerning my seizure. I agreed and I quickly called my folks and arrangements were made for my transport home. It was during this time that I caught my first glance of my tragically confused neighbor. He was an older gentleman, shaved bald with a large horseshoe incision on the right side of his head. It was held together by staples and he wandered out of his room. Why his alarm didn’t go off I can’t say, but perhaps he was granted exercise once in a while, much like I was. He seemed to immediately come over to my room and stood outside the door looking in.
It was a little awkward, but knowing what he must have gone through, me and my family offered him pleasant greetings. He inquired of us where Patricia was. We had no idea, both where she was, or even who she was. We told him we didn’t know, but that perhaps she would be there soon, thinking it must be a visitor or family member of his. He informed us that Patricia was to come over to fix his TV. We stammered a little bit in reply, offering our hopes that this woman would eventually come to visit. He seemed to feel that he was still in his home and nurses walked up to him and led him off gently, while my folks and me looked at each other awkwardly. I do hope Patricia showed up, whoever she is. Nobody should spend the holidays alone.
We packed up my things and I left, being led with a wheel chair, obviously not allowed to walk out of the hospital on my own accord. Though I quickly began to control the wheelchair on my own as we went into the pharmacy to get my anti-seizure medication and a long detailed list of how to take them. I got into the car and was driven back to my parents house. The doctors had told us I should not be alone, thus I wasn’t able to go back to my own home, but went with my folks to spend the holidays and a month or so recovering. Much of the time I was completely immobile. My legs and arms had deteriorated to the point I couldn’t walk down a hall or up some stairs without feeling like I was going to fall or getting exhausted. It was extremely frustrating. Luckily, my mother, who just had knee surgery, had a recumbent bike that I would get on and ride to build up some muscle. It was slow going. Not only did it hurt, but my heart rate would spike and I would have to remove myself from the bike every ten or so minutes.
My legs were still numb due to nerve damage and as the feeling came back, it was if as my body registered it as pain. This is something I still have to contend with to this day, but the damage is supposedly reversible. I still have pain and numbness, but the overall area of which this was occurring as shrunk immensely. I was forbidden to go back to Alaska for the first herring season, which has set me back financially somewhat, but was eventually granted permission to go for the second herring season and the subsequent salmon season as well. This I am grateful for and hopefully it will build up my strength quickly.
I continued seeing several specialists and have almost got a clean bill of health. My kidney doctor still wishes to keep an eye on me every six months due to some protein found in my urine and my neurologist as well. Lupus was eliminated as a possible cause and eventually the neurologist found a diagnosis. The condition I had concerning the seizure was something called PRES or Posterior reversible encephalopathy syndrome. The interesting part about this diagnosis, is that it has never been seen in the particular part of the brain where it occurred in me and my case is to be soon written up in a medical journal, name withheld of course. Not the kind of fame that I would wish for, but it is what it is.
As of now, I have yet to have another seizure and most issues I am battling concern getting back into the same shape I was before all this happened. I feel fortunate about getting back to work, being in relatively good health and gaining some independence back. I continue to see doctors, but as said before, its only every six months or so. I am off all medications dealing with my near death, but through this I was diagnosed with another non-serious condition and I have to take medication for that. For anyone who has known me, they may have noticed I have a slight nervous twitch about me, which remained undiagnosed for sometime. Indeed, some doctors just wrote it off as some sort of “tic.” The kind of tic that creates small muscle spasms, not the one that burrows into your skin.
After spending some time with the neurologist he inquired about why I walked around twitching like a pigeon. I told him exactly what I had been told and he quickly diagnosed me as having a genetic disorder called “benign central tremors.” I was prescribed a blood pressure medication, simply for this particular disorder and not any blood pressure problems. I am happy to report it has seemed to help and I now seem to have a relatively steady hand, which I haven’t had in years.
Thus ends my adventure, I hope, and despite how challenging and scary it was, I found the constant support of family and friends to be a constant source of strength. I would like to end this entry with, once again, thanking all those who were praying for me, keeping me in their thoughts, visiting, inquiring about my condition, and were overall concerned. In addition, I would like to thank those who kept my family and friends strong through this because, as mentioned before, in a lot of ways they were worse off than I was. Finally, thank you to the doctors and nurses who provided great care, support and did all they could to keep my dignity intact. I love you all and God bless you.
Brandon Myhre clear.
