Take Another little Piece of My Heart

Rather than post up another entry bemoaning my on going trials (and trust me they are ongoing), I decided to write something up about trials past. Namely the procedure known as a heart biopsy. A myocardial heart biopsy is the definitive procedure used to determine if a transplanted heart is showing any sign of rejection.

A heart biopsy is a test in which small pieces of tissue are taken from the heart muscle, and examined under a microscope. Now a heart biopsy is not for the faint of heart (no pun intended) generally it supposed to be a relatively pain free procedure, but I know of several people who have to be sedated to deal with it.

When many hear the word biopsy, most think of long needles pushed into the body by a radiologist to retrieve tissue, a heart biopsy is a bit more complicated and invasive.

The Procedure:

• Prior to the biopsy, you asked to NPO, meaning no eating, no drinking. I had a ironically heart breaking experience in the hospital involving being NPO for a biopsy. Much of my time in the hospital I was nauseous an not hungry at all, one morning, however, my appetite came back, for once I was looking forward to breakfast. I waited almost excitedly for them to deliver my cheerios, only to have the nurse come in and announce that I was NPO - I didn't get to eat for another 3 hours.

• At USC the procedure itself happens in one of the fanciest procedure rooms I have ever scene. It involves fluoroscopy, or real-time Xray, thus there is a rather sizeable X-ray machine. The doctor has one of the monitors hooked up the PC, which he typically uses to listen to music on Pandora, which he unfortunately likes to tune to the Coldplay station. I fucking had Coldplay with a passion and I think Chris Martin has to be the douchiest douchebag to ever pick up a guitar outside of Dave Matthews. Luckily Dr. Barr began letting me pick the music after a while - and no I didn't complain.

• For me the procedure is always performed by my cardiothoracic surgeon and post-transplant care provider, Dr. Mark Barr.

• Before they, dig in so to speak, they clean the entry site, which has ad sometimes lead to partial shave, and usually leaves me with a big yellow splotch on my neck from the antiseptic.

• So now the question is, if they not get the tissue with a long-ass needle, then how do they get it. In most cases, a large vein on the right side of my neck (jugular vein) is used. That's right, the go in through the jugular to get to the heart.

• OK so they are going in through the jugular. They ain't doing this without some sort local anesthesia. They started me with straight Novocaine. Well, guess what, after 3 months in the hospital on everything from Vicodin, Morphine and more potent things, they might as well be injecting me with saline. The first couple biopsies were incredibly painful, the second bringing me to tears, all the while, Dr. Barr telling me, this shouldn't hurt, at all. Finally, one of the technologists suggested a drug cocktail using Lidocaine and Sensorcaine. The sensorcaine, seems to make the most difference, someone penetrating to the deeper nerve endings, and subsequent biopsies have been much less painful.

• After the area is numb, a catheter or tube is inserted into my vein. Which is where I get the most discomfort, Dr, Barr is essentially jamming a big plastic tube into my neck and he jams pretty hard.

• A special instrument, called a bioptome, is inserted through the tube and threaded into the heart with the help of fluroscopy. The bioptome is an instrument with small jaws on the end that open and close around small pieces of heart tissue. Once the bioptome secures a piece of tissue the instrument along with the piece of tissue is removed. I usually feel a few extra beats of my heart when the tissue is removed, but last time I could actually feel the bioptome being removed through the heart and vein. It doesn't hurt, per se, but it is surely one of the funkiest sensations I have every had.

• Once the heart tissue is removed, it is sent to the laboratory for study. If there is any evidence for white blood cells attacking the heart muscle, then BINGO, rejection. But guess what, I've had 9 biopsies and not any indication of rejection, and while rejection is possible at anytime, Dr. Barr doubts that I will have issues with it from now on. That's good, I've got enough issues at this point.

Philosophies differ greatly across the country on the number and frequency of heart biopsy, at UCLA a heart transplant will have up to 14 biopsies in the first year and routinely there after. At USC, where I had my heart transplant, however, the heart transplant patients generally get 8 in the first 6-8 months and then none ever again unless you show other signs of rejection. As I said, I've had 9 because a bout of dehydration made them concerned that I was rejecting.

Too Much Information

Warning: A lot has been going on with me over the past couple months, some of it good, some of it bad, all of it going seems to continue to on and on

It is a time of good news and bad news for me. First the good news, my one year anniversary was on September 24, 2009. Outside of car accident that left Wendy without her car for a month, it was a good day. Wendy and I visited the hospital, delivered a cake and some thank you cards, and went out to a great dinner at Providence . Actually one of the best meals I've ever had. It was a significant day. It's been a year and I still have zero signs of rejection.

I continue to be on fairly low doses of anti-rejection drugs and tolerating it well, which is nice.

Unfortunately, from my perspective right now, that is about the end of the good news. In August, I let myself get a little too dehydrated and ended up getting a biopsy; of course it came up negative. Unfortunately, it was the start of a disturbing downward trend of my blood platelet count which culminated if me being admitted to the hospital. My platelet had dropped to 9k putting me at extreme risk of an inter-cranial bleed. They gave a treatment called IVIG, which had me hooked up to 2 liter IV bottle for 18 hours. Unfortunately, the pharmacy seemed to mess up the mixture and it gave me a 4-day migraine. Finally I got some relief from Imitrex. Unfortunately, since then, I've battled minor headaches, and I'm not allowed to take any meds for them. However, between the hospital, the migraine, and doctor’s appointments, I've been missing a lot of work, not good, as I was long ago out of sick time. Luckily, the IVIG treatment worked, and my platelets bounced up to 380k. I thought I was through it; I finally managed to get back to the Hematologist last weekend, only to find that my platelets were back down 19k. The ITP is beginning to look like a chronic problem, rather than an acute problem. The most frustrating part of it is that it is idiopathic, meaning they don't know the root cause of it. ITP itself is idiopathic, not just my case. The treatment for now is pulsed steroids, 4 days of Decadron every two weeks, with blood tests every week. It also means I'm on Zantac, because the steroid, tear you up. I started taking it in the evening but found that it keeps me awake; I will start taking it in the morning on the next pulse. NOW, last night I took the Decadron with the rest of my medications and now I'm suffering the most intense episodes I've ever felt. Every time I stand up, the world goes a little dark; I even fell to my knees once. Luckily I am at the end of the pulse, drinking lots of water, and hoping that once I get the Decadron out of my system it will go away. Still I have confidence in my doctors, I understand the difficulty of this particular problem, not knowing the cause, and having some many others health issue to thread it around. Speaking of which, I am still battling the BK virus. My viral count went back up to 40 million, which is to be expected with my increases in steroids. The goods news in this is that I'm still asymptomatic and another Dr., an expert on the BK/polyoma virus, said that that number is "Amateur", both I and Dr. Barr feel better about this.

So the out come of all of this is that I'm grounded. No mountain biking, most likely for 2 months - 2 months, which is unbelievably frustrating. Not just because I can't do it, but because I keep losing my fitness, it’s a struggle, I'm not making any gains in my climbing - on the bike and on the rocks for that matter. I have things I want to do, next year and I keep getting these set backs.

So with all this, I have begun to take Lexapro. For those of you who don't know, Lexapro is a anti-depressant. When I left the hospital, I was suffering from minor PTSD and recovering from Psychosis that I suffered while in the ICU. I finally went to a therapist in March, and as the PTSD clear up, it revealed a more deep seeded depression. After a couple months of therapy, my therapist finally advised me that she was worried that my depression was becoming a little more chronic and suggested an anti-depressant. Of course I was reluctant, but open, because I know I'm still having trouble, being sad for no reason, moody, unfocused, and generally unpleasant. So I went to a Psychiatrist, he agreed with my therapist’s diagnosis and prescribed Lexapro for me.

So the struggle continues for me. I have to admit that all of these issues are affecting the rest of my life, my home life, my work, but I won't go into those details. Right now, I'm kind of feeling like I just want this year to be over, to start over again.

Now, I know that as far as transplants go, I have it very very good. NO rejection, minor problems, great supportive doctors, great support at home. So I feel guilt for complaining, but I just felt like I needed to dump, I hope you don't think less of me for it.

Mostly I'm doing well, I just hope I don't pass out when I stand up from writing this...

Platelets up, Migrain gone

Well, I can easily say that the last 4 days have been the roughest for me since leaving first leaving the hospital after my transplant, just about a year ago. Over the past few weeks my platelet count had slowly been decreasing. Last tuesday, my platelets had dropped to 11,000, prompting my post-transplant doc to refer me to a hematologist. She ordered a platelet transfusion, which bumped the count up to 32,000, which was about half the response they were hoping for. Back on Friday to see if I'd had an more recovery, my platelets were back down to 9,000 - something in my body was destroying my platelets. The was no choice, I had to be admitted to the hospital for IVIG, which is basically a protein treatment - antibodies to go against existing antibodies which had been destroying my platelets. What was going to be a couple of boring days in hospital soon became the toughest days I've had in about a year. They started the IVIG at 1AM on Friday, and as is typical in the hospital, they don't let you sleep. By 11am, I'd begun to get a headache, which I didn't think too much of, I was short on sleep, but when you are low on platelets you are at risk for an inter-cranial bleed, CT came up clean, but nothing was helping my head, Tylenol - nothing, vicoden - nothing, morphine! - nothing. By 11 am on Sunday, my platelets had rebounded up to 83k, but my creatinen was rising so they stopped the second IVIG treatment and let me go home. For the next 2 1/2 I had the worst headache my life, that nothing would relieve, no vicoden, a late night dulaten treatment offered a couple hours of relief but nothing real. Finally back at the hospital for follow up blood work, one of the hematology fellow prescribed Imitrex for me. My platelets had rised up to 325k, and the Imitrex worked - my headache has abated. I'm back at work today, but very weak, because I haven't eaten much in the last four days. I've also got some rip-roaring indegestion from not eating and taking so much painkillers on an empty stomach - word to the wise. I can only guess that ll that extra protein from the IVIG really ticked off my chemical balance - I've never had a migraine like this before, but my God am I glad it's over.

Another Anniversary Approaches

On Monday, I had some extra blood because some previous blood work had shown that I had very low platelets. Well, the platelet count is continuing to go down. As result, I was taken off my last non anti-rejection med, Lipitor, and one of my anti-rejection meds, Arava (which was a replacement for Cellcept). I'm not even 1 year out from my heart transplant. Even before these reduction, my post-transplant Dr., said I was on next to nothing. Now I 'm down to 2 mg of Prograf twice a day, and 5mg Prednisone. In addition to a Calcium supplement twice day, and a multivitamin. Don't get me wrong, I kind of like that I'm on so few medications, especially so soon after my transplant, but I can't help but feel uneasy about the whole thing. Still, I haven't had a hint of rejection, and they even took me off of my blood pressure meds because I was getting into better physical shape. It's hard for me to believe that this time last year, I was waking up from a coma, just barely breathing without a tube, unable to eat, unable to sit up, let along stand or walk. You know for some reason it sort of bothers me, people keep telling me how lucky I am, but I know it's true

One Year

Hello everyone. One year ago today I had a heart attack. That evening, I was riding up the Chumash Trail to Rocky Peak in Simi Valley. I was struggling and I didn't realize it the time, but I was already have the heart attack that would change my life forever. I died that night, but I came back, after the fight of and for my life.

So tonight, I will head back to the Chumash Trail to Rocky Peak, and attempt to ride the trail again. It is not a terribly long trail (5 miles round trip) or difficult, but it will be a challenge for me, just as it was a year ago.

This is the first of several important anniversaries for. I will celebrate the date of my transplant for the rest of my life. However, with this bike ride, I hope to put this date behind me, and never "celebrate" it again.

The last year was truly the best and worst of my life. But I'm happy to have it, and even happier to be starting another. Thanks all who been there for me during the darkest and brightest days.

My pharmacy - we own the night

So last entry I went through the medications that I take in the morning. Now I am going to discuss my evening medications. There are some repeats, some that don't even really qualify as medications, and some that are not directly related to the transplant per se.

First I'll cover the repeats:

1. Prograf (Tacrolimus) 2.0 mg - Prograf has a 12 hour lifetime to the body at it's effective dose. As uch I have to take it every 12 hours to maintain a safe level of it's immunosuppressive affects. You may notice that the dose has dropped from 2.5 mg to 2.0 mg. This is not because I take a different dosage in the morning vs the evening, it's because it the time between writing the A.M entry and this one, my dosage has dropped, from 5.0 mg a day to 4.0 mg a day. I'm again, having trouble with my white blood cell count, so I'm not entirely sure that it will stay at this level. Either way, less meds is good, because it generally means that I'm doing well and my liver won't have to work as hard AND my kidney won't be in as much danger (it's doing fine right now)

2. Os-Cal - Apparently I have to take this twice a day as well. Hell, it's only a calcium supplement.

Here are the rest of the medications - Prograf is my only evening immuno suppressive

3. Valcyte (450 mg) - Valcyte is a n ant-viral medication that I take because I am susceptible to the CMV which can be extremely dangerous to transplant patients. So far, my experience has been that it does not cause any side-affects. Unfortunately, Valcyte is an extremely expensive medication that was not initially completely covered by the insurance company ($175 for a 1 month supply vs. $25). Luckily this was resolved through a number of methods. Also, of all my medications, this is the one that I know for sure I will be taken off of at my 1 year anniversary. Not long now.

4. Atenolol (5 mg)- Atenolol is beat blocker used primarily to control high blood pressure and elevated heart rate. I was put on this medication at the beginning of the year when my BP was running in the 145/1120 range (crazy high). This is normal for a transplant, because the heart is disconnected from the nervous system, so I don't have the same regulation wiring that most people have. I was in fact placed on two BP medications at this time. However about a week after being being placed on these medications, I started having extreme exhaustion in the afternoon and evenings, as well as some episodes of lightheaded-ness - I ever feel down a couple times. One evening, I nearly passed out driving home from work. Because of this my dosage was reduced, and the other med - Enalapril, was stopped completely. I'm now on one pill in the evening at a dosage of 5 mg. I still have issues with being light headed when I stand. Atentolol however isn't really for my BP, instead I take it to regulate by heart rate which was also running in the 110 bpm range. As such, now, on this dosage my BP runs ~ 110/76 and my heart rate is around 83 bpm.

5. Lipitor - We've all heard of this one from the TV commercials. It's a is a cholesterol reducer. Why do I need it, since my total cholesterol is 123? Well, now one is really positive why this happened but when I had my heart attack one of my ventricular arteries was completely blocked with plaque and my heart was covered in fat, the heart of an unhealthy 60-year old - which I certainly was not. Lipitor is NOT a typical post-heart transplant drug - for me it is prophylactic - a guard against whatever genetic/hereditary condition caused this.

6. Bactrim - This medication acts to prevent pneumocystis carinii pneumonia is one of the opportunistic infections frequently seen in patients taking immunosuppressive drugs. It's basically a prophylactic to keep from getting pneumonia since I'm immuno-compromised. My feeling is that I will likely never be taken off this one.

7. Prenatal Vitamin - Really this is just another multi-vitamin for me, to help replace essential minerals and vitamins that my other medications deplete. I honestly don't know why it is a prenatal vitamin, but that's what what they give me so I take it. Not that this is my attitude about my medications, but hell, it's vitamin, what does it matter.


So there you have. All of the medications (and pills) that I currently take. I expected things to go down with time, eventually reaching what they call a "maintenance" dose sometime after my 1 year anniversary.

In my next entry I will address how I feel about this - my frustrations, concerns, and overall perspective on having to take so many medications, and some for the rest of my life.

My pharmacy - steppin to the A.M.

Pretty much every person who knows or finds out about my transplant eventually asks me about my medications. It's a reasonably well know fact that transplant patients have to take medication for the rest of their life. I am no exception. With so many questions about these meds, I thought it might be useful to post up a detailed list and description of my medication list so that people know what I'm dealing with here. Right now I take two medication twice a day, every 12 hours. For me, because of my work schedule, that means at 7am and 7pm. The combinations are slightly different in the morning than the evening, both because some meds only need to be taken once a day, and because when I first got out of the hospital I have lots of trouble with nausea, like 24/7 nausea, and one solution was to cut down taking all my once a day meds at once. All that has changed, though as my medication has slowly gone down in the last 7 months. Anyway, here's a list of the medications that I take and a brief description of what the do:

AM Medication:

1. Prograf (Tacrolimus) 2.5 mg - Prograf is an immunosupressive drug whose main use is after organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. This is my main ant-rejection medication and one that I will be on for the rest of my life. The dosage may change, but it likely at the lowest it will go for me. Many people have side effects with Prograf at higher dosages (common for other type of organ transplant, especially kidney and liver, but not for heart), as far as I can tell, I've had no side effects. One of the most serious side effects is nephrotoxicity.

2. Prednisone 5 mg - Like several of the medications on this list, prednisone has a number of uses, which are too numerous to list here, but it is is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It can, therefore, be also used in autoimmune diseases, inflammatory diseases asthma, severe allergies, rheumatoid arthritis, among many others. It common for many transplants patients to start on prednisone, but eventually be taken off of it. I, however, will be on prednisone for the rest of my life because my doctor "doesn't believe in steroid-free". Yes, it is a steroid, though as far I can tell, it isn't making my muscles huge. It does have some typical steroid side effects, most of which have faded as my dosage has gone down (5 mg is the minimum dose). At one point, I had a moon face, abnormally fat from the steroids, as well as more black heads (especially on my forehead) than I've have in 20 years. Another side effect of prednisone is Steroid-induced osteoporosis. Because of this, I wasn't allowed to begin mountain biking in earnest until recently. It also require me to take the next "medication"

3. Os-Cal (I don't know the actual dosage off the top of my head, to me it's one tablet) - Os-cal is a calcium supplement fortified with vitamin D. It's a huge green caplet, but it's coated so it isn't too difficult to take. I take the Os-cal to counteract the steroid-induced osteoporosis caused by the prednisone. As with most supplements, it doesn't seem to have any side effects. As I said, my doctor doesn't believe in steroid free so I'll be on this one the rest of my life. Not a big deal unless it somehow gives me kidney stones.

4. Arava (Leflunomide) - This could be the strangest of all my medications. It's also the newest. Back is March, after my 8th and final biopsy, it was found that my white blood count had dropped to nearly nothing. My Dr. attributed it to a sudden sensitivity to my medication Cellcept. Which made sense to me. In about of blind optimism I wondered if this was evidence that my body was accepting the new organ. Here was my logic. Because of the transplant, my body had received a foreign body (my new heart). My immunoreponse of course is to get rid of this foreign body (rejection!). To prevent rejection, I take immunosuppressive drugs which suppress my white blood cells. Baasically the immune system over produces white blood cells, and the drugs suppress this. But what if the body accepted the foreign body? Would that mean that the body suddenly doesn't need to over produce the white blood cells? I don't know, but this was my thinking. If my body stopped over producing, then an immunosuppressive drug would cause the white blood cell count to go waaay down. So, does this mean that I'm accepting the new heart - I don't know, but I'm certainly not gonna change what I'm doin unless my Dr says so - I recommend the same any heart transplants who read this. So the Arava - the Doctor took me off the Cellcept and a couple weeks later, after my white blood cell count returned, they put me one Arva (Leflunomide). Funny thing - Arava is not an immunosuppressive drug - it is a rheumatoid arthritis drug. It is a rheumatoid arthritis drug that has both immunosuppressive side affects and anti-viral side affects. Yes, I'm still have trouble with the BK virus and that was one of the reason why he put me on that. The rough thing about Arava is that out of all my meds it has the worst side affects. That's not saying much though, and they aren't that bad. I had pretty frequent GI issues, about every other day - I'll just leave it at GI issues. Also, I have an on-and-off rash on my hands.

This is the first installment of two, with one more about my PM meds. At the end of that I'll ruminate a bit on my meds and I will give some hints of what I know about my future with my meds.

a guaranteed cry

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.

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

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.

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.

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.

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.

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. 

------------------------------------------

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.