A few weeks after I got out of the hospital, I finally ventured and read the older Carepage entries, that Wendy had posted while I was asleep. This was very difficult for me and I found myself crying after the first entry. In many ways it is good, though, it reminds of what I went through, of what the people around me went through, of all the support people gave when I couldn't even respond. Through time, though, I expected that reading these would not affect me quite so strongly. This has not been the case, however. Even now, almost 10 months since this saga began, 8 months since my transplant, reading the entries and reading what people wrote, thinking about what everyone went through, makes me cry. I really need to pick and chose when I decided to do this.
Friday, May 22, 2009
Friday, May 15, 2009
Medical Cost
For anyone out there who doesn't believe in the value of health insurance, I offer this cautionary tale. Sometime in November of 2008, I began to receive bills for the 2 1/2 months of surgery and care that I had received following my heart attack. While I was in the hospital I had noticed, particularly when the nurses checked my blood sugar, that the nurses would use a hand bar code scanner on the items that the were using on me. First they would enter some code, then they would scan the bar code. After I realized that this was for billings purposes, which meant, every surgery, every medicine, every bandage, every yankauer (which they replaced every time I drop my suction tube on the ground), everything was being billed. Even then, still just concentrating on getting better, my mind spun with the cost, the bill that was growing for. I was terrified on this bill. Not long after, I got out the hospital, I got the bill for my first night, which was at a different hospital (Huntington in Pasadena vs USC Memorial). That bill totaled just over $240k - for one night! Of course this night included major surgery and batteries of tests and scans. Sometime in November I got what I thought was the first bill from my longer stay. I nearly collapsed when I read it - it read "Estimated Amount You Owe - $4.2 million" THAT"s RIGHT
If my entire family put every dollar earned toward that bill for the rest of my life, we wouldn't even come close to paying such a bill. But it wasn't really a bill, more of an FYI. Here is where the insurance comes in. That number is in essence a fake number that the hospital comes up with because they know you have insurance, which apparently I have good insurance. This number is the number the hospital produce before the cost is negotiated with the insurance company. Once the hospital and insurance agree on a real bill (which is much less than the retail cost), THEN your insurance coverage is applied to the bill - you know (insurance pay 70% of total bill, something like that), and then you get an actual bill. So, months went by and no real bill arrived. Sometime in February I began to receive actual bills for biopsies and clinic appointments and such (there were many because I was sick in January) that had occurred in 2009. What about my 2008 bills? Finally I mustered the courage to call my insurance company (always a dicey proposition) and inquired about two things. First I wanted to know how much lifetime courage remained on my policy. Once I found out that, I asked the representative about the $4.2 million dollar bill. After some back and with the representative to access the correct bill, he simply said "It's been taken care of". WHAT?!?!? Ultimately, the bill had been negotiated down to $400k+, however, I had already reach my out-of-pocket maximum for 2008, which meant insurance was covering everything at that point. That right, my bill for 2 1/2 month hospital stay, including 2 surgeries, x-rays everyday, a pharmacy full of medication, all of it, ended up being
4.2 MILLION DOLLARS
If my entire family put every dollar earned toward that bill for the rest of my life, we wouldn't even come close to paying such a bill. But it wasn't really a bill, more of an FYI. Here is where the insurance comes in. That number is in essence a fake number that the hospital comes up with because they know you have insurance, which apparently I have good insurance. This number is the number the hospital produce before the cost is negotiated with the insurance company. Once the hospital and insurance agree on a real bill (which is much less than the retail cost), THEN your insurance coverage is applied to the bill - you know (insurance pay 70% of total bill, something like that), and then you get an actual bill. So, months went by and no real bill arrived. Sometime in February I began to receive actual bills for biopsies and clinic appointments and such (there were many because I was sick in January) that had occurred in 2009. What about my 2008 bills? Finally I mustered the courage to call my insurance company (always a dicey proposition) and inquired about two things. First I wanted to know how much lifetime courage remained on my policy. Once I found out that, I asked the representative about the $4.2 million dollar bill. After some back and with the representative to access the correct bill, he simply said "It's been taken care of". WHAT?!?!? Ultimately, the bill had been negotiated down to $400k+, however, I had already reach my out-of-pocket maximum for 2008, which meant insurance was covering everything at that point. That right, my bill for 2 1/2 month hospital stay, including 2 surgeries, x-rays everyday, a pharmacy full of medication, all of it, ended up being
$0
Now tell me insurance isn't worth it. Now I understand, that insurance is expensive, and I am blessed in this capacity, however, if you have the means, please get it, you never know what could happen. You could wake up one day needing a heart transplant.
Now tell me insurance isn't worth it. Now I understand, that insurance is expensive, and I am blessed in this capacity, however, if you have the means, please get it, you never know what could happen. You could wake up one day needing a heart transplant.
Monday, May 11, 2009
Back to the Desert
This past weekend, I drove out to the Mojave Desert to meet my graduate school adviser to work some unfinished business. The drive out was fine, meeting him and his current crop of students went well. I realized soon after arriving, though that it may have been a mistake. A painful nervous knot formed in my stomach. It's slowly grew till almost my whole body was quietly shaking. Fear. It was fear overtaking me, the way detergent spreads oil in water. At first I didn't know why, but I soon realized, remembered why I was feeling like this. When I was...gone...when I was in a coma, sadly, it was not blissful nothingness, in fact to my memory, not a single moment of that long 6 weeks was nothingness, instead is was an unending stream of nightmares. The most horrible, realistic nightmare you could imagine. One the most prominent, possibly the first nightmares, I can remember having took place in the Desert, the Mojave Desert, and to make matters worse, my adviser was there, in my nightmare (not in any sort of sinister manner, he was just there). Lying there in the back of my truck, I couldn't sleep, I couldn't escape. I wanted to cry, but I couldn't. I know, I knew that they were just nightmares, that they hadn't really happened, but even when I had awaken from my coma, it took me several days to be convinced that they had just been nightmares. Still, here they are, a part of me, for the rest of my life, I think, just like my scars. I went home the next afternoon, after the work was done, but I couldn't bear the thought of another night out there.
So I made it back to Pasadena late afternoon, prepared for a restful evening of hanging out with Cady. Instead, though, my friend Nick invited me to his house for BBQ. At first I was going to refuse, but I remembered that his parents were in town. Without his parents help, I would not have been able to create Wendy's engagement with nearly the success that I had. So I wanted to see them. I packed up Cady into the car (she likes to play with Nick's dog Hank), and headed over the valley. Everything, was fine until just before dinner.
Minutes before the food was ready, I began to experience pain, in my chest, and in my left arm. For those of you not paying attention, I was at Nick and Nora's for a BBQ the night that I had my heart attack. My instinct was that it wasn't a big deal, yet that was exactly what I thought at first on July 30th. The pain never got too terrible, just annoying, but I decided to excuse myself from dinner, head home, and check by blood pressure (the first check for problems). On the drive home, I resolved to call my Dr. , even though it was 10pm on a Saturday night. I knew he would be annoyed, but I also knew that he would be ANGRY if I didn't call. So when I got home, I called him (the Cardiothoracic Surgery Dept has a night answering service). He assured me that the pain wasn't my heart (it's disconnected from the nervous system, I CAN'T feel heart related pain) and that is was likely muscular. I'd overdone it with all the cross-country hiking earlier in the day and my body wasn't so happy with me.
Honestly, this wasn't as bad as the previous night, but it was just too much for me. But, just as the night before, I realized that that night will always be with me, like my scars, as a reminder, a painful reminder, of what I went through.
So I made it back to Pasadena late afternoon, prepared for a restful evening of hanging out with Cady. Instead, though, my friend Nick invited me to his house for BBQ. At first I was going to refuse, but I remembered that his parents were in town. Without his parents help, I would not have been able to create Wendy's engagement with nearly the success that I had. So I wanted to see them. I packed up Cady into the car (she likes to play with Nick's dog Hank), and headed over the valley. Everything, was fine until just before dinner.
Minutes before the food was ready, I began to experience pain, in my chest, and in my left arm. For those of you not paying attention, I was at Nick and Nora's for a BBQ the night that I had my heart attack. My instinct was that it wasn't a big deal, yet that was exactly what I thought at first on July 30th. The pain never got too terrible, just annoying, but I decided to excuse myself from dinner, head home, and check by blood pressure (the first check for problems). On the drive home, I resolved to call my Dr. , even though it was 10pm on a Saturday night. I knew he would be annoyed, but I also knew that he would be ANGRY if I didn't call. So when I got home, I called him (the Cardiothoracic Surgery Dept has a night answering service). He assured me that the pain wasn't my heart (it's disconnected from the nervous system, I CAN'T feel heart related pain) and that is was likely muscular. I'd overdone it with all the cross-country hiking earlier in the day and my body wasn't so happy with me.
Honestly, this wasn't as bad as the previous night, but it was just too much for me. But, just as the night before, I realized that that night will always be with me, like my scars, as a reminder, a painful reminder, of what I went through.
Wednesday, May 6, 2009
Repeating Sadness
Not long after I posted the last entry, a month after I started, I realized that I repeated myself. Yes, I did have three, yes three, strokes, so maybe my brain is a little addles, but mostly I think I'm a moron. That's OK, I'm pretty sure it will take me a month to finish this entry and I'll probably repeat myself again. Seriously, though, with the about of crap that is rattling around in my head, I'm sure I should have something a little bit more original to say.
I'm now into my 7 months since all this happened. I still have many people asking me many questions. How am I doing? What is it like? Endless questions about the things that happened while I was in the hospital. None of this bothers me. I don't mind answering questions at all. There are few things that I'm unwilling to talk about, and if someone asks me about those, then I politely say "I can't talk about that", and leave it.
What I can say is this. At times, since this all started, I've been overcome by overwhelming sadness. Now yes, of course this was true while I was in the hospital. Anyone would be sad, waking up from coma, to find their life shattered. But here I am 7 months later, and if anything my life is better than it has been in a long time. I'm engaged. My relationships with all of my friends and family are deeper than I ever thought myself capable of. My job is going well. I'm back rock climbing, and I'm back mountain biking. I'm luckier than person deserves to be. I nearly died, fighting demons you can't even imagine, and yet to this day I'm at times overwhelmed with sadness. There are many things that can cause this, some that I don't understand.But the thing that truly makes me sad, though, is thinking or hearing about what my friends and family went through while I was asleep. I can't even imagine. All I can say to those people is "I'm sorry" and I really am. I'm sorry.
I'm now into my 7 months since all this happened. I still have many people asking me many questions. How am I doing? What is it like? Endless questions about the things that happened while I was in the hospital. None of this bothers me. I don't mind answering questions at all. There are few things that I'm unwilling to talk about, and if someone asks me about those, then I politely say "I can't talk about that", and leave it.
What I can say is this. At times, since this all started, I've been overcome by overwhelming sadness. Now yes, of course this was true while I was in the hospital. Anyone would be sad, waking up from coma, to find their life shattered. But here I am 7 months later, and if anything my life is better than it has been in a long time. I'm engaged. My relationships with all of my friends and family are deeper than I ever thought myself capable of. My job is going well. I'm back rock climbing, and I'm back mountain biking. I'm luckier than person deserves to be. I nearly died, fighting demons you can't even imagine, and yet to this day I'm at times overwhelmed with sadness. There are many things that can cause this, some that I don't understand.But the thing that truly makes me sad, though, is thinking or hearing about what my friends and family went through while I was asleep. I can't even imagine. All I can say to those people is "I'm sorry" and I really am. I'm sorry.
Thursday, April 2, 2009
Climbing Up the Mountain
Everyday, on my way to and home from work, I pass Towsley Canyon, which is a little local park just off of I-5 right as you come over Newhall Pass from Los Angeles. It's not the swing set and grassy field kind park, it the undeveloped hiking trails kind of park. Unlike a lot of parks in the area that bizarrely give a lot of preference to horses and discriminate against bikes, you can actually mountain bike on the trails here. In fact it was one of the first places I rode when I moved to CA a couple years ago. It's not a particularly long trail, 4 miles round trip, but it's challenging, the climbing is steep with sharp switchbacks, and unrelenting. At the top, you are afforded a view of the Santa Clarita Valley, not much to look at, but I wonder, if it was ever really clear, you might be able to see the southern tip of the Sierras.
For some months now, looking up into those hill caused a tinge of sadness in me. It made me sad, I that I couldn't, was unable to ride them. It reminded me that I couldn't ride at all. Then a month ago at my final biopsy, I realized that in all likelihood, my prednisone level (prednisone is a steroid) had reached its minimum dose. why is this important? Because prednisone can cause osteoporosis, in fact I'm on permanent calcium supplements, because I take it. Finally being, at the minimum dosage meant that my bones could recover, which meant that I could finally resume high-impact activities - like mountain biking. And I am back - Towsley is a long way off for me, but each day I pass it, and each time I ride I know I'm close. But honestly, Towsley is an intermediate goal. My true goal is this
Chumash is the trail that I road the evening of my heart attack, when all this started. I will never be able to leave what happened to me behind, but I think this may be a good start to moving on. So, on July 30th, 2009, exactly 1 year to the date of my heart attack, I plan to ride this trail again, and this time, I will survive.
For some months now, looking up into those hill caused a tinge of sadness in me. It made me sad, I that I couldn't, was unable to ride them. It reminded me that I couldn't ride at all. Then a month ago at my final biopsy, I realized that in all likelihood, my prednisone level (prednisone is a steroid) had reached its minimum dose. why is this important? Because prednisone can cause osteoporosis, in fact I'm on permanent calcium supplements, because I take it. Finally being, at the minimum dosage meant that my bones could recover, which meant that I could finally resume high-impact activities - like mountain biking. And I am back - Towsley is a long way off for me, but each day I pass it, and each time I ride I know I'm close. But honestly, Towsley is an intermediate goal. My true goal is this
Chumash is the trail that I road the evening of my heart attack, when all this started. I will never be able to leave what happened to me behind, but I think this may be a good start to moving on. So, on July 30th, 2009, exactly 1 year to the date of my heart attack, I plan to ride this trail again, and this time, I will survive.
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)
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.
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