Five and a Half Months
Initially, I took the time off because it was discovered my kidneys were failing. That wasn't a huge surprise, since I've known they would eventually go since I had a humeral rejection of my donated heart (around 9 years ago). Perhaps I lived in denial for the past decade. But even though I know the kidneys would eventually fail, they remained functional, and at times even stable.
But I had been feeling very run down since early September, with a number of emergency room visits. In early October, my cardiology team informed me that my creatinine level was no longer at an acceptable level and that I would need to begin dialysis immediately. I was assured that once I starte dialysis I would begin to feel much, much better.
Sadly, that wasn't the case.
While I tolerated the dialysis well (aside from tiring me out), my symptoms were not dissipating, In fact, they were getting worse. By the beginning of November, my breathing was labored and I felt bad congestion in my lungs. It was significantly worse at night. Finally, I was admitted to Evanston Hospital where they discovered I had a blood clot in my lung. I was admitted to the University of Chicago Hospital, where I stayed for about a week, while they pumped me with blood thinners.
However, within a few days of going home, the symptoms persisted.
At this time, I was already having regular dialysis sessions at a dialysis center in Evanston. Also, I began to see a local nephrologist, closer to home (and affiliated with Evanston Hospital, just 20 minutes from my apartment). As the symptoms persisted, this new nephrologist recommended going to Evanston Hospital's ER, where he would monitor my care.
For whatever reason, my stay at Evanston lasted 3 weeks. It was discovered that I had multiple clots in my lungs and in my calves. So the length of my stay was determined by how well I responded to the blood thinners. The big problem I was having from this was severe bruising, which isn't uncommon while on blood thinners. Two days before discharge, I began to feel considerably lightheaded and dizzy. In addition, I was having severe anxiety episodes.
The day I was scheduled to be discharged, my dialysis treatment was delayed till late in the day. Because it was already past 7pm, I managed to convince the hospital staff to let me stay an additional night - hoping that I would be okay to drive home during the daylight hours the next day. My car had been parked outside the ER since I was admitted and it was discovered I had a flat tire. Not wanting to deal with that at night (nor having any means to fix it at night), they agreed to keep me one additional night. However, I could tell they didn't believe me when I told them how dizzy I was. The truth was that I was also enjoying taking Dilauded thru an IV push. It still is the only drug that eliminates my gout and back pains. It was also the drug of choice to ease the significant pain from the bruising. But it's highly addictive. So I understood why they questioned my symptoms. However, the lightheadedness was very real.
I arranged for my tire to be fixed and was discharged from the hospital that next day. The medical staff felt I was well enough to get back to my daily routine and nothing I could do or say was going to make a difference.
Boy, was THAT a mistake.
I still don't know how I managed to drive myself home. But with no recourse, I went home. By the end of the week, the symptoms were no better. But I was told it will just take time for my brain to adjust to returning to normal activity.
I barely had time to heal. That led up to my last post last November.
By 7pm, the wings were cooked and we sat down to eat. But I was very sore and tired and needed to eat in bed, since my back felt enflamed. Over the past few months, the pain in my back and right leg had progressively worsened. I had lower back fusion surgery back in 2000 and now, 12 years later, it appeared that the disk above the fusion, as well as the one below the fusion, has weakened significantly. I had already had 3 epidural injections into my spine and even though they gave me a little relief, it as not enough to really make a difference. The next move, according to the pain doctor, was an injection to calm the arthritic nerves, hoping that would do the trick. The possibility of further surgery was discussed and rejected because there were numerous "hot spots" and the doctor felt there was way too many nerve compressions to operate successfully on. Instead, I would be forced to deal with the constant pain through drug therapy. Not an ideal situation. But after spending so many years in pain, it appeared to be the most logical determination.
So, my back was hurting and I was forced to lay down to eat. By the 4th wing, my stomach started to cramp up and I felt the need to go to the bathroom. Now, it needs to be noted that because of all the narcotics I took for pain, bowel movements were few and far between. In fact, for at least the past 1-2 years, I was happy to go to the bathroom once a week. But usually, I felt much better once I was able to relieve myself. This time, however, no matter how hard I pushed (sorry of the graphic nature of this paragraph), nothing was happening. The more I strained, the more sick I felt. Finally, I just gave up and decided to wait it out.
By 6am, I decided there was something very wrong and I called 911. I wasn't 100% this was the way to go. But better safe than sorry. It took about 10 minutes, but finally the ambulance arrived with the news that they would only take me to St. Francis Hospital (and not Evanston). St. Francis has a terrible reputation in town and I was not very happy with this. But since I had never been there before, and because I was in a great deal of pain, my brain just accepted this turn of events, and off I went.
Once in the ER, it didn't take too long for them to determine my diagnosis. It seemed I had something called Diverticulitis - which is an inflammation of the colon wall, causing significant pain and serious complications that could be fatal if not treated. I was immediately put on a water/ice chip diet and admitted to the hospital.
Let's go back a moment and fill you in about another part of the problem.
When I began dialysis, I was offered a choice of dialysis styles. The first style is called Hemodialysis and was what I had been doing. In hemodialysis, you are hooked up to a machine for 3 hours (three times a week). The machine removes the blood from your body, washes away the toxins and returns the clean blood back. It isn't painful at all and really the only drawbacks are the time commitments (3 hours every Monday, Wednesday and Friday, for perhaps the rest of my life) and a feeling a exhaustion following each procedure. Because of the simplicity of the protocol, it is the type of dialysis everyone is started on. Because it's done at a dialysis center (or hospital), all that is required of the patient is to lay down and rest. I'd watch TV, read or even surf the internet.
The other type of dialysis is called Peritoneal dialysis. This type of dialysis is far more involved. However, it is generally done every night at home, freeing up your time each day. In addition, because it does not require blood transfusions, there is no period of exhaustion after each treatment. The way Peritoneal dialysis works is that a catheter is permanently placed inside your stomach into the peritoneal cavity. Fluids are flushed in and toxins are removed through osmosis.
While I was in Evanston Hospital, I was asked which type of dialysis I preferred. There were clearly pros and cons for both types. I liked PD (peritoneal dialysis) because it meant not having to get a job around a 3 hour/3 day commitment. Plus, from the way it was presented to me, there seemed to be a great deal more flexibility that way. But I also liked the fact that with HD (hemodialysis), my individual responsibilities would be less. The truth was I really was not in sound enough mind to make the decision right then. But my nephrologist determined that it would be best for me to have the PD catheter inserted since I was in the hospital already anyway.
During late November, I entered into a training program to teach me how to operate the PD machine and all that was entailed in doing PD. It was totally overwhelming and I quickly realized PD was not the way for me to go. For one thing, the tremendous amount of equipment I was required to have on hand - especially if I were traveling - was overwhelming. But the biggest concern was what happens if even the slightest mistake is made. Add that to the tubes that would have to be led from the bedroom to the bathroom, to filter and drain the machine just seemed so much. Finally, I made the decision to go back to HD, which just make a whole lot more sense, given my lifestyle and abilities. Besides, I could always change my mind in a few years, should things change. Simply put, I preferred the idea that I could just go to the dialysis center every other day for a few hours are rejuvenate my mind while others did the grunt work. It just made a lot more sense. And I justified the switch by remembering that I really wasn't given a chance to decide which one was best. I felt pushed into it.
However in the mean time, I had the stupid catheter still in me and it needed daily scrubbing and cleaning. The day I made the final decision to go back to HD was the Friday I made the wings.
I was in St. Francis Hospital for 5 days. While the staff was nowhere near as bad as it was in Montefiore 10 years prior, they really did deserve the reputation that had. The worst of it was that no matter how much I reminded and implored them to keep my PD catheter clean, they admitted they had no idea what was entailed in doing so. The incompetence was shocking. After 5 days, they transferred me to the Grove, a nursing home nearby that they had an arrangement with. I arrived there on Friday evening and soon discovered they were not prepared to have me. For one thing, they tried to pick me in a semi-private room. Because I am immunosuppressed, I can not be placed in anything but a private room. In addition, they had none of my medications (even though they had been informed the day before of my arrival). So I was not given any of my heart or sleeping medications. That left me extremely anxious and wide awake all night. Add that to the fact I was still not eating anything and it was a recipe for disaster.
One thing they wanted from me was to stabilize my bowel issues. I was now on a liquid diet, which added soup and jello to my menu. But they wanted me to eat something solid. I simply could not stomach the idea. On Monday, I was brought a hot dog and actually ate about 1/3 of it. On the staff's insistance, I was given a strong laxative to finally clear out my bowels (I had not gone to the bathroom for now almost 3 weeks). That was clearly a mistake.
I remember two things that happened next. The first was calling my brother and telling him I wasn't certain I was going to survive my stay at the Grove. Nothing was improving and I felt very neglected. I seriously needed an advocate to speak for me because my brain was short circuiting. I was very confused and couldn't make a decision for anything. The second thing was running to the bathroom to finally relieve myself. The cramps were there, but the ability to push it out wasn't. The more I strained, the more pain I felt. Finally, I realized that if I try any more, I was going to pass out. So I got up and went back to bed. In hindsight, I'm amazed I made it to bed without fainting.
I then paged the nurse who took almost 45 minutes to come to me. I informed him that I needed to call an ambulance to take me to the hospital. He clearly felt I was overreacting. Finally, I got in touch with my Rabbi and he put the fear of G0d in them. I finally convinced the nurse to call 911 and this time they agreed to take me to Evanston Hospital. What happened next is still a blur. I arrived in the ER and after I informed the ER doc what my symptoms were, the number of medical personnel greatly increased. Suddenly, the room was a hotbed of activity. I recall them giving me a lot of pain medicine and also asking for someone who could sign a permission form (next of kin). I was far too sick for fear. But it didn't really matter because they weren't standing any time talking to me. Then everything went dark.
In the mean time, for the 2nd time in 10 years, I found myself intebated and waking from a coma. I swear, if it didn't happen to me, I'd never believe it. My immediate concern however, were the shackles on my arms. As I woke up more, I managed to convince the nurses to remove the ties for a few minutes at a time. They were concerned that if left to myself, I would pull the respirator out - which would not be a good thing. Thankfully, I wasn't fully awake and slept to majority of the day away. Slowly, I began to learn how t communicate while there was a tube down my throat. But as I improved, I began to fret over taking the tube out. I remembered how excruciating the feeling was when they woke me from my transplant. But before I knew it, the day came to remove the tube and they did so without much trouble.
If I'm not mistaken, I spent the next week in the ICU, improving each day. I was informed how fortunate I was to survive the ordeal - specifically because of my suppressed immune system. In order to cure my illness, I was pumped with massive amounts of antibiotics - all through an IV. The side effects of these drugs was a steady sour stomach and no appetite. They wanted me to eat, but there was just no way I could convince myself to put anything solid in my mouth. Because of this, I was losing significant weight. I was on a nutritional IV mixture. But that as basically just to keep me alive.
The doctors moved me to a regular hospital room about a week later and I remained there until early March. I still was not eating and on top of everything else, my gout was acting up. The more I was awake and aware, the more I comprehended what had befallen me. In a nutshell, I suffered from constipation for so long that I developed Diverticulitis. Because of the (lack of) care at St. Francis, I developed a secondary infection of Peritonitis, which is inflammation of the peritoneal catheter - the very thing I warned the doctors at St. Francis about. Of course, this all led to the abscess and perforation of the colon. Ironically, my mother suffered from the same illness when she was 64 years old. She barely survived it. At this point, I was considering all my options, including filing a lawsuit against St. Francis. Since I am still recovering, I've put off that idea for now. But I intend to lawyer up soon and take an honest look at all my options.
Since a hospital is the absolute worst place for someone who is immuno-compromised, the medical staff wanted to move me ASAP to a rehab facility. But there were issues as to my dialysis schedule, as well as securing Kosher food. It was finally decided I would transfer to the Brentwood North nursing home, about 20 miles north of where I live. The reason being that they have in-house dialysis. To my relief, the facility really was above-average. The grounds are well groomed and he staff, for the most part, seemed first rate and competent. Of course, with any Medicare facility, there were some drawbacks and staff issues. But compared to the facility I found myself in last summer (when I recovered from knee surgery), this place was pretty good.
Another issue I dealt with was the dialysis catheter in my right shoulder. In a couple of weeks, I will be having a fistula (permanent catheter) put into my left upper arm. But until the fistula is matured (anywhere from 2-4 months), I’ll need to keep the catheter in my right shoulder working. Already, during the course of the past few months, I’ve had to have the catheter reopened after clotting issues. The operation to have it reopened was not terribly painful until the Lidocaine they used to numb me up wore off. Generally, I was in significant pain for 2-3 days after each time. Even now, being 4 weeks since they last “opening”, I still experience what feels like a burning and tearing feeling at the catheter site. For the past month, I have been getting IV infusions of 2mg of Dilauded, which works wonderfully. But the IV compound is more addicting that the pill form (which does not work nearly as well) and since I’m going home Tuesday, I need to wean off the dose. So that way, I won’t have withdrawal symptoms when I’m home. The sad part is that I won’t have as much pain relief, either.
On the positive side, while it took longer than expected, I w have been able to learn (again) how to walk. I had to learn it 10 years ago, as well. The good thing was that I was able to see the improvements daily. The doctor realized soon after I woke up that my anxiety would be a serious hindrance to rehabbing. So they immediately put me on anti-anxiety medication that has kept my spirits up. In truth, everything I have gone thru over the past 10 years would make a lesser mortal want to commit suicide. Aside from the anxiety and depression, the pain I’ve dealt with has been, in a word, excruciating. Most people, by he time they are 50, might have had to go thru one of the illnesses I deal with. For the past year (at least), it seemed that as soon as they fixed something wrong, something else would break. It was a vicious cycle I hope has reversed.
As I mentioned, I still have two more surgeries to go. The fistula will be implanted in a couple of weeks and my colostomy reversal will hopefully take place within a month or so. I’m considerably stronger than I was a few weeks ago and am at least strong enough to drive and walk up stairs. I suppose I ideally I’d prefer an additional week. But that could just be my anxiety talking. Truth be told, I really am ready to start doing this on my own. I think the first clue that I was getting ready was that my desire to write has slowly returned. I’m still waiting for my interest in a romantic relationship with someone to come back. Perhaps because of where I am and the fact I have a bag attached to my intestines has sapped whatever desires I have. But then that’s just another reason to want the reversal sooner than later. I do have a lot of fear about that surgery – most notably because I’ve read that it often is followed with a short-term bout of incontinence, which is not something I’m looking forward to.
All in all, it’s been a very long road to recovery. Although some will claim my nursing home stay is a vacation (it isn’t), I really could go for a week on a warm Florida beach. I believe I deserve it. Unfortunately, I can’t afford it. This summer – sans the health issues – should mirror last year, when I had to take multiple long distance trips to the NY area to bring my kids to and from camp. But that’s ok. After all, driving relaxes me.
So now you know what happened to me. I don’t know how consistent I’ll be about writing at first. But like everything else, in time everything should return to normal. It will just take time.