Thursday, March 26, 2009

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.

Wednesday, March 4, 2009

End of Days (in the hospital)

Secondary IdentificationSecondary IdentificationSecondary Identification

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.