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.