6 months

I had originally hoped to completed my story up until I left the hospital, before making this blog more realtime, but the telling a story that is so complicated and difficult has proven very hard for. Seeing as this is close to my 6 montshh anniversary, I have decided to forgo and more re-telling and continue on with my life as is. Rest assured, I left the hospital on Oct 17th. Even being at was a difficult time for me, and I felt like I was almost having a breakdown. But finally by the end of last year I was getting to be normal. So here it is, 6 moths. Hopefully now that I'm blogging more realtime I can post a bit more often, rather than having to wait until I feel like rehasing the painful past.

Today, March 24th is the 6 months anniversary of my heart transplant surgery and I thought this was an appropriate time for me to update everyone on my progress, especially those who are not witness to this progress, day-to-day.

After the new year, I went back to work, full-time (January 5th) to be precise. I promptly got sick, and found myself taking several sick days the first two weeks. It turned out that I had acquired a virus, but soon after I was diagnosed the symptoms went away and I thought that somehow my suppressed immune system was able to fight off the virus on it's own. Which was good, since I later learned that the treatment of this particular virus was worse than the virus itself (the word toxic was used). During this time we also discovered that I am very sensitive to hypertension medication, which was actually very scary. After nearly passing out, driving home from work, I found my blood pressure was only 94/55. My blood pressure meds were reduced (they were already at "baby" doses). I ultimately decided that I had gone back to work about 1 month too soon. This time wasn't all bad news though, by Feb 9, I had passed biopsies 6 and 7 with flying colors, and my meds were slowly creeping down. By the time of my 8th and hopefully final biospy, I was down to 7 pills in the morning and 11 at night.

By mid-Feb, though I was feeling like I was getting into the swing of things and I had finally started riding my bike around the neighborhood. Pain at the incision site was for the most part gone. I have gotten stronger everyday, and I would say I feel 95% normal.

Last Friday, I had my 8th biopsy. Dr. Barr informed , before the procedure even started, that my Prednisone level had reached its lowest level - the lifetime level. Yes, I will have to take a steroid for the rest of my life, but the good news is, that because I have reached the lowest level, I'm now officially doctor cleared to rock climb and mountain bike and any other high impact activities I want to do. The biopsy came back, and Dr. Barr informed me that it would be the last of my life - as long as I don't any serious problems. The bad news is that the blood work came back showing that I have a VERY low white blood count. Dr. Barr think that either I have become very sensitive to the immuno-suppression medication, or that another virus is the culprit. I go back to the Dr. on March 31st for more blood work, cross your fingers.

To finalize this update, I wanted to update everyone on my goals for the year:

1. Touch real rock by March - I actually already did this on Dec. 27th - I climbed a 5.7 and 5.8 at New Jack City.

I've climbed again, with my brother Jay, at Red Rocks in Las Vegas. It's coming slow.

2. Run a 5k (specifically the Donate Life Run/Walk on April 25th. Want to sponsor me? http://www.donatelifeoc.org/

I still intend to participate in this event, but I will not be able to run. My muscles are still very weak, and I can't jog very well, in addition I am still having issue with my right foot (numbness, weird sensations).

3. Finally, finally finish publishing my work on the Lenwood fault.

Work on this is moving slowly, but I have a deadline of the end of June, which should help me.

4. On July 30th, 1 year from my heart attack, I want to ride the Chumash Trail, the ride I did that same evening. http://tinyurl.com/8hgk4f

Now that I'm approved for this, I'm optimistic, but my fitness level needs to come waaaay up.

5. With much luck, stabilize my meds enough by May so that I can go to China for a wedding.

After much contemplation I came to the conclusion that this is a foolish goal and I will not be going to China. Why? Because eating in China is a dangerous proposition, even if you aren't immuno-suppresed. Sorry, but it is the truth.

6. Not miss phoning or sending a card for one single relative or friends birthday.

I have been very busy living my second life, but I don't think I've missed one yet.

7. Do everything I can to take care of my new heart.

I have been watching my diet, exercising as much as I am able, and sticking to my medications faithfully. I'm happy. What more can I do?

8. Personally thank, as many of the people who phoned, emailed, wrote on my care page or visited me in the hospital as possible.

Again, I've been busy living my second life. I have thanks a handful of people personally, but I still have many people to contact. I have not forgotten you.

I must admit, I think I have mostly recovered from the surgery, and I am now still trying to recover from everything that happened before. It is sometimes difficult for me to reconcile what I went - everyday in fact. Everyday I fight and everyday I'm happy. I know that I am changed, hopefully for the better.

End of Days (in the hospital)

Three days. I was asleep for three days after my heart transplant surgery. I was extabated within hours after my surgery, and taken off of sedation. The surgery had gone well; my new heart had looked, and was working great (after a bit of early arrhythmia).

I

had

a

New

Heart

Even here, almost 6 months later; I still have not wrapped my head around that. It' still not real.

You know what else, I don't have. THE VAD. I am no longer attached to the Infernal Machine.

I'd heard that many people felt "great" after their surgeries. I did not. It was September 27Th. I couldn't walk again. I couldn't eat again. I couldn't drink. But I didn't have a feeding tube, I didn't have a breathing tube. I couldn't talk again. What I did have was more chest tubes. I also had wraps around my legs to prevent more blood clots. These wraps would periodically inflate, which would slowly drive me crazy. I was back in the same room I'd left before surgery.

Yes, I had a new heart, but my troubles weren't quite over. My lungs were with "junk" as my doctors called. They had me on respiratory treatments, were insisting that I use one of these. I could barely reach 750 (I now reach over 3500, much to the disbelief of my doctor). I went through several episodes of unexplained shortness of breath, but it was soon decided that I had a pneumothorax, which were air gets into the space between your lung and your rib cage, which can make breathing difficult. It was decided I need a pig tail. Which is a one-way tube placed in your chest to release trapped air. The place by radiology which meant I had to go to radiology to have radiologist do the procedure. So I was wheel down to radiology ( I was barely standing at this point), and the tube was placed. This was yet another time of many when I wished Wendy was on the radiology staff at USC so someone, anyone could something right. See, the procedure take a bit of time, and they would place me on this unbelievable uncomfortable (essentially a flat hard board) for it.

Guess What? They missed. A day later I still had the pneumothorax - my doctor said, "The idiot put it in the wrong place. You need another one." Great, as if the first one wasn't uncomfortable enough. So down I went, missing a much needed physical therapy session, for another chest tube. Same thing, in a completely different location. They place the pigtail, and nothing happens. Air is supposed to start coming out, but nothing. This time I've been on the table for over an hour. They send my ICU nurse to get me some pain medication, because I'm writhing in pain at this point, from muscle cramps and chest incision stress, but of course she is AWOL (at this point my ICU nurses were from the B team), and the radiologist decided he has to put another one it, That's three. Luckily the third one works, but i end up being in radiology for over 2 hours. I'm spent, exhausted, on the verge of tears, and now I have 3 additional tubes and not one single comfortable position I can sleep in.

But I'm fighting, by Monday the 29Th, I'm drinking and moving toward real food again (they had me on a Clear Liquid Diet - nothing but broth). It's better than those goddamn shakes.

I'm miserable. I'm supposed to be happy. I have a new life. My room is flood with ecstatic hospital staff - people overjoyed at my survival. All I can think about is how miserable I am - I'm a wreck. I don't know it - but the end is near.

Today is THE day.

So Sept 23rd, I was not only placed on the transplant list, but a new heart was found for me. They still needed go inspect the donor heart, to make sure it was good. Still, the feelings of these moments were overwhelming. Yes, I was happy, yet it many ways it wasn't real. None of what was happening to me was real. I'd talked about my nightmares, and somehow this was just as real. I was also afraid. Afraid of the surgery - you have to understand, while I'd already had 3 open-heart surgeries, this was the first that I was actually aware was going to happen. I was afraid of being put under anesthesia again, I was scared it was going to be like when I was in the coma - a never ending nightmare. Yet somehow I wasn't scared. I wasn't scared something would happen during the surgery or was I. Honestly, the shock of having found a heart so quickly was masking everything. My memory of this time is very poor. I remember getting the news from Felicia, I remember Reggie, my ICU nurse for the night telling that 1) my chest needed to shaved, again, 2) he would be the one to take care of me when I got out of surgery. I remember being told that there was actually a transplant that was going to happen before mine and that my surgery was being pushed back a bit. I remember waking up on the 24th, unshaven, and with very little sleep. James came to my room early because he'd promised to have breakfast with me. Of course, because of the surgery, I was NPO, and wouldn't be eating anything. What don't remember at all, is what time I went into surgery, at all. I do however, remember saying goodbye to Wendy as I was taken to surgery prep. I remember being cold in the OR and meeting the OR nurse, and the Anesthesiologist once in the OR (I'd met with prior as well), and I remember them putting me under. I remember Dr. Cunningham, who performed the transplant, coming into the OR, just before I went under.

You know what else I remember - I remember not being able to tell the difference between reality and dream. For the first part I was under, I was still aware of the ER, but it a a dream-like sense, I realize that it was a dream. I remember thinking, I just want to fall asleep and wake up and have it all be over. Unfortunately that didn't really happen. See I sort of remember bit and pieces and "feelings" of my dreams while I was under. I do remember, about halfway through, realizing that I was still under and thinking "I am sedated, they are operating on me right now" and then going about in my dream and talking to people. I thought "Dammit, why can't think just be over and can I PLEASE wake up". But it went on, and after the surgery, reality crept into my dreams. I remember seeing Wendy and Dr. Cunningham before I was technically awake. He asked me "How do you like your new heart?". I also remember being extabated but then going back to sleep and still being convinced that I was still sedated. When the ICU finally forced me awake. I was so convinced that I was still sedated that even told the nurse "No, I'm still sedated". It took me 5-10 minutes to be convinced that I wasn't still sedated.

Damn that was fast

So I'm awake and alert, in the hospital. Wendy is slowly updating me on the goings on in the world, but its all bad news and I couldn't handle it - I had enough bad news of my own. As I said, I was psychotic, though not in violent way, more in an I can't control my emotions way. I had, however, resigned myself to the fact that I was going to have a transplant. So I put what little energy I had to getting myself strong enough to be put on the transplant list. This meant getting my feeding tube removed, improving my lung function, getting rid of ANY traces of infection, and being able to eat enough to stem the dramatic weight was ongoing. The feeding tube was easy, one night, while sleeping, I accidentally pulled the tube out - it was the third time, and I was on the verge of being allowed to eat anyway, so they gave up on putting it back in. So they had me eating, on what was called, a mechanical diet, which meant everything was put in a blender before it was served to. Nothing like blended pasta (or stir-fry) for that matter. I started, of course, with Jello, and apple sauce, which at that point tasted like ambrosia. James, had also cleared me to drink pretty much whatever I wanted, which was mostly lemonade. My taste buds were screwed beyond recognition, and about the only thing I could taste and enjoy was tart things. The breathing part was tougher. They had me on respiratory treatment. Which meant a respiratory technician would come to my room, multiple times a day to work out my lungs, which suuuuuucked. My lungs were in some pretty bad shape, filled with "junk" as multiple doctors called it, and partially collapsed. I endured two different types. One involved me, breathing this noxious gas that would make me nauseous. The other, involved me inhaling and exhaling, through device that would force air into my lungs (to help inflate the collapsed parts). Both made me nauseous and the later, would make me throw up if I had to do it near meal time. To get rid of infection I was on several antibiotics, which was complicated by the fact that I'm very allergic to Penicillin. Additionally, in the course of getting rid of this infection I developed an allergy to one of the antibiotics they had been using - Vancomycin. this was sort of scary, since the Vanco was administered intravenously, which caused me to break out in hives spontaneously. Everyday, communicable disease doctors would come and analyze my lab results, tracking my battle against infection, letting me know my white blood count (as it went down, thankfully). Each day it went down I felt like I was getting closer to getting listed. Finally, in an effort to combat my psychosis, the ICU decided to try and move me to a better room. One with more window, more light. By this time, I was walking, with much difficulty. The day they finally secured me a room, my friends Nick and Nora were visiting, and got accompany me me as I walked down the hall to my new room. I promptly sat in a chair, stayed for a couple hours. You must understand, at this point, just sitting in a chair, let alone walking was exhausting for me.

These improvements went on. I walked more everyday. Tried to eat more. They had me drinking these high calorie shakes, called Scandy shakes. It was horrible. They were so desperate to get calories into me, that they tried to for 3 of these 600 calorie shakes down my throat each day. After a couple days, it was all I could do to choke them down. It wasn't that they tasted THAT bad, but they were thick and heavy and I could never come even close to finishing them before they were warm, even though the ICU nurse tried to keep them cool, by plopping them in bucket of ice while they watched me stare at them (and not drink them). I wasn't being difficult, I just had no appetite. Still, the ICU nurses and the transplant, coordinator, Felicia, were working hard to move me to the medical floor, which was more like a typical hospital room, versus the ICU fishbowl. I was visited by medical floor nurses, because they had to learn how to deal with the VADS machine. I was scheduled to be moved on Sept 23rd.

Sept. 23rd, the transplant coordinator, who was always the bearer of good news, popped her head into my room and proclaimed - "You're on the list". This made me, my mother, and Wendy, very very happy. And started to dig ourselves in for a long wait. Because I was on the VADS machine, I wouldn't be able to leave the hospital . Thankfully, I was getting ready to be moved which I new would help the wait. Later that day Wendy showed up from work, as she did everyday, to spend evening with me. Around 5pm my room phone rang. My phone rarely rang because most people didn't know which room I was in or that they could call. Usually when it rang, it was the dietary coordinator taking my order for what I wasn't gonna eat for dinner. Wendy answered, and this time, it was Felicia. Even though, there was incredulity in Wendy's voice, a happy look, I had know idea who she was talking to. Wendy handed it me, again it was Felicia, and all she said was -

"We found you a heart"

7 hours. They me a heart in 7 hours. People wait months, sometimes years for their organ transplants. They found a heart for me in 7 hours. Damn, that was fast.

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.