Damn that was hard

As I have said, I am now recounting what happened from approximately mid September, 2008. You may have noticed that in the last entry, I inked to a number of musical clips and Youtube video. This is me, trying to enhance the story with songs, that I like, have significance to me, or somehow fit the situation. So expect more of it.

Mid September was, probably, the most difficult time for me, emotionally and physically, at least when I was awake. I was awake, constantly exhausted, and in pain, yet somehow, I couldn't sleep. My nightmares continued to haunt me - I had night terrors, where just any time I did manage to sleep, I would awaken terrified, or confused, or both. Although, I couldn't walk or stand, and if I sat up, I would be lighted in mere moments. The tube down my throat eventually came out and I couldn't talk, and though I was more thirsty than I'd ever been in my life, I wasn't allowed to drink, because the tube had been in place for over 6 weeks. I dreamed, hallucinated, about classes of ice water and Shasta . Why Shasta pop, you may ask. I, for some reason, remembered an old Shasta commercial, with people playing around a mountain lake, on a beautiful summer days, in their cut-off jeans, with like 800 flavors of Shasta pop. In retrospect, my memory may have been of a Mountain Dew or Juicy Fruit commercial. Nobody, my parents, or Wendy, really knew where I was coming from. I know why though. It's because, the memory of that commercial was a memory of a completely different place than where I was. I've obsessed about this since then, and still hope to make a stop in Shasta, on a road trip to visit my uncle David, in Bend, Oregon.

So in this I had/developed what is called ICU Psychosis. I was literally losing my mind. And why not, you try being in a room, with essentially no window (it was facing a wall, with no direct light). I couldn't tell the difference between day and night. My emotions were all over the map... the bad map.

Yet during this time, I was getting "better". Getting stronger. I was still fighting infection, but my white blood cell count was slowly getting better. Which brings be to one of the first "comical" memories I have of being in the hospital. Nearly every day for the first few weeks I was awake, I was visited by two infectious disease doctors. I wish I could remember their names. One was pleasant lady who always had smile and showed concerned for me. The only was an older man with a German accent. One day while going over my lab results (blood was drawn from me every morning at around 6am - I dubbed these people, vampires), the older doctor, while referring to my white blood count, exclaimed "Looks good!" - what I found funny about this was, that between his accent and the histrionic manner in which he exclaimed it, reminded me of this - SCIENCE! Eventually I met James. James was my swallow and speech therapist. A young guy, likely younger than me. James was the first person in the hospital to treat me like a friend, and not just a sick person. The first person person, other Wendy, to talk about the future. Even though, at this point, I didn't believe in the future. I still didn't really understand what was happening. He gave me hope, he gave me the ability to swallow, and gave me the first drink of ice water I'd had in 2 1/2 months. I cried, I really really cried - it was some of the best tasting water, I'd ever had. The only water to rival it, I found in Sequoia National Park, in a spring on the trail to Alta Peak. Regardless, I was getting better, I was not doing it alone. I remember, one evening, as my Mother left for the day, after spending it at my bedside. I said to her, "This is the hardest thing I have ever done". She replied, simply, "I know.". And it was...it is.

What was IT like?

I was waking up. But this is where this starts to get difficult for me. From now on, I'm not recounting from what others have told me, but from my own fragmented memory. I can't remember much of early to mid September. In fact much of what happened until my surgery is foggy and a blur. Here is what I do remember (more remembering, ugh). I remember my mother being there and telling me what had happened, because of course I was pretty confused. I remember being convinced at first that I was in Japan and in a place called Tokyo Metropolitan Hospital. 

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This entry is difficult for me because my memory is so fuzzy and disorganized. I want to tell want happened but, honestly I can't seem to organize it in my mind. I know that I could just lay down some explosion of random bits, but my sense of getting it right won't let me.  I'll keep trying.  In the meantime, one question I get a lot is "What was it like?”  This seems like a strange question to me, first, because, if the roles were reversed, and someone I knew had gone though a traumatic experience I don't think I could ever conceive of understand "what it was like".  But I get this a lot, so I will try. Besides, it may be somewhat cathartic for me.  

 

Imagine, now.   The last memory you have is being wheeled into a hospital in excruciating pain.  This is followed by the worst nightmares of your life that never seem to end.  When you finally do wake up,  your body is broken, you have no strength at all, you can't even sit up let alone stand or walk.  Hell, you can't even raise your head.  There is a tube down your throat so you can't talk.  There 3 or four tubes coming out of your stomach and chest.  You are in what appears to be a windowless room and thus you can't tell the difference between day and night.   You think it's probably about Aug 2nd or 3rd, but in fact it's approximately Sept 12th or so.  Almost 6 weeks of your life has just disappeared, in fact, pretty much your life has disappeared. And your mother, who is supposed to be 1500 miles away, is there and telling you that you need a heart transplant.  Now ask me what it was like.  Or maybe it was more like this. 

 

But I was lucky, blessed, even.  I was alive, which by all rights, I shouldn't be. I was surrounded by people who loved me (Wendy, and my father and mother), and surrounded by sentiments from people who loved me - the wall of my hospital room was covered in cards.  And it turns out, that I was in one of the best transplant programs in the world but that seemed pretty far off.  

It's all coming back to me

Just last week I had the pleasure of running into one of the doctors who took care of me while I was in the ICU. Dr Ram (not really his name because I can't remember his real name) took care of me during a time when I was being sedated but also was around when I was coming to. We briefly discussed, my sedation vacations. I made brief mention before of my nightmares and hallucinations while I was out. When I finally did come to, I new that I was in a hospital because I was in one in my nightmares. The real reason I knew this was because I had been given "sedation vacations" starting in the second half of August. These were brief periods where they would reduce the pain medication and sedation enough that I could wake up. Here they would do cognitive tests for responsiveness and brain damage (because of the strokes). To me, these interludes were just part of a nightmare or hallucination.  After I left the hospital, after talking with my Mother, who spent 9 weeks in California at my bedside, and my girlfriend Wendy, who has spent the last 6 months, at my bedside, taking care of me at home, helping to manage my care in the hospital, , I began to realize that these brief periods were not hallucinations, but had actually happened.  I remember Dr. Ram speaking with me about the VAD devices. I remember being extabated the first time and who did (a respiratory tech named Anisa).  I remember the ICU nurse helping to evaluate my breathing after I was extabated.  I remember the Africans-American radiology tech who would come into my room, loud and excited, every morning at 6 am, to take my DAILY chest X-ray.  I also remember still fighting infection during these times.  Sadly, I don't remember Wendy or my mother being there, only in the final days before I woke, do I remember my mother being there, as they were "bringing me up" as my foggy memory  recalls.   Finally, at the beginning of September I was strong enough and not-in-pain enough, to allow me to fully wake up.  I still can't believe what I awoke to.

The story so far...what I missed pt. 4

Sadly folks, I'm wasn't nearly yet out of the woods. My chest was finally closed and I was improving, very slowly. One complication of the VAD devices is that it can cause the blood to clot. They put you Coumadin, a blood thinning drug, to help prevent that, but unfortunately for me, I still developed clots. Even more unfortunately, several of these clots traveled to my brain and I in turn suffered several strokes. Two of these were termed as minor, but the third has been described as a "significant event". My post-transplant doctor, has described the CT scan of this stroke as "scary looking". I've been VERY lucky. As of today, I have no cognitive deficiencies. my balance and coordination seem fine, especially considering the amount of muscle mass I lost. On the other hand, tests have show that I've lost approximately 10 degrees of peripheral vision in both eyes. The neuro-opthamologist describes this as insignificant, so is essence I managed to survive a significant stroke almost zero side effects.

Also during this time, I lost circulation in my right leg. This caused my right foot to turn black. I don't know the details of this, but I do know that circulation returned. I'm still suffering after affects from this. To this day, my right foot suffered from numbness, pin-and-needles, burning, and pain. Wendy says that I likely have/had sigificant nerve damage in that foot and that nerves take a LONG time to heal.

Even more, that same leg got infected. The infection ended up being in the wound where they took a vein to try and do and the bypass. It took them a while to actually find it. Then of course I'm allergic to penecillin and it was apparently a battle find the right antibiotic. Luckily, one particularly good ICU nurse was able to find the source of the infection and I was able to get past it. Now comes the time of the sedation vacations.

The story so far...what I missed pt. 3

I do want to note that there are all sorts of little details I'm missing about what happened over these hours, days, weeks, and eventually months. Even when I finally came to, my memory of the first week or so is very fuzzy. As such, I apologize if I keep dropping bits of information that are out of chronological order, or refer to something that isn't directly related. Honestly, I went through so much that I don't remember, that its hard for me to wrap my head around, even today.

For example, one bit I forgot to mention - I coded in the Huntington ER. That's right, my heart stopped. I was dead. But not for long. Anyway, back at USC. Doctors had placed an RVAD to supplement the LVAd I already had. After transfer to USC yesterday, I had symptoms of cardiac tamponade (My cvp was in the 40's) - so they re-opened my incision to relieve pressure from what is essentially marked swelling of the heart and tissues which can occur after a heart attack.There were complications. When the time came to close my chest, the trauma of 2 open heart sugeries and everything else the swelling was so much so that it was not possible for the surgeons to close my chest. It had to remain open. This was approximately Aug 1st, my chest would not be closed until Aug 11. Thats right, my chest was open for 11 days. It was covered in plastic to prevent infection, and I was periodically washed out. During this time I had at least one scary episode where I bleed constantly for an entire weekend. Finally, my main surgeon and Dr. at the time, Dr. Cunningham, determined that there was a problem with the RVAD site. He corrected it and I began to recover.

The story so far...what I missed pt. 2

I'd originally planned to do the background story in 2 installments. I now see that it will probably take a lot more, and it will be a bit before I can start blogging about real time sorts of things. So to my knowledge, sometime on July 31st, I was placed an the LVAD and it was determined that I would need a heart transplant. So comes the first legal complication. Wendy, my beautiful significant other, did not, at the time have legal rights to make any medical decisions for me. My parents, unfortunately, had returned from a visit to Los Angeles, so until my mother could make arrangements to return to LA, all of these decisions needed to be make via phone calls, as she made her way back to Los Angeles. Thankfully, the insurance company was cooperative and I was quickly approved for a transplant. The hospital that I was at, Huntington Memorial Hospital, was not equipped to handle a transplant, which left me with USC University Hospital or UCLA. UCLA has a very large transplant program. However, after Wendy did some research, and was able to find an open bed at the USC transplant center. I was transferred that afternoon. I should note that the doctors for attempted the bypass, and placed the LVAD, were from USC Cardiothoracic Surgery as they work out of both hospitals. Not long after my arrival at USC, it was determine that my heart was too weak to survive on an LVAD alone and it was decided that I would also need an RVAD (Right Ventricular Assist Device) Go here, for more info.