all I wanted was a Pepsi

"all I wanted was a Pepsi, just one Pepsi, and she wouldn't give to me..."

- Suicidal Tendencies, "Institutionalized" (1983)


2009 has come to a close and I find myself in much that same position I was in a year ago. I risk this becoming a whine-fest, but my life is what it is, and I've been pretty honest so far, so I see no reason to change at this point. The year ended with a good trip back east to visit family, it was somewhat crazy, driving (well, riding for me) back and forth from Philadelphia and Pittsburgh.

Here it is almost the end of January and I have yet, to review 2009 or look much forward to 2010. I guess I’ll start with my goals for 2009. I know I went through this back in March, but I think it bears going through again.

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 climbed some this year, but perhaps not as much as I would have liked, I did manage to climb a few 10s as recently as November.

2. Run a 5k (specifically the Donate Life Run/Walk on April 25th. Want to sponsor me? http://www.donatelifeoc.org/ - I walked the 5k this tear, but it is the end of January and I am going to start training to RUN it this year, again, I would love it if you would sponsor me - http://www.donatelifeoc.org/, though I have not yet registered

3. Finally, finally finish publishing my work on the Lenwood fault. Ummm, Keeping up with my regular job has been enough.

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 - I did this with the Pasadena Mountain Bike Club, I did not make it to the top, but I still had fun.

5. With much luck, stabilize my meds enough by May so that I can go to China for a wedding. I ultimately decided that stable meds or not, China was not a good idea for me, perhaps next time.

6. Not miss phoning or sending a card for one single relative or friend’s birthday. - I tried, but I did not do so well with this :-(

7. Do everything I can to take care of my new heart. - I did well with this until November when feeling not so good from my ITP treatments lead me to not do so well with my diet, between the steroids and my diet I've put on some weight. I'm feeling better now, and exercising more than I have in about 5 months.

8. Personally thank, as many of the people who phoned, emailed, wrote on my care page or visited me in the hospital as possible. - I created a personalized card, and was able to thank everyone at the hospital.

I would love to say that I'm doing better than the last entry and, honestly I am, at least than I was doing several months ago. I'm still battling ITP, I'm trying to be optimistic about the whole thing - my platelets have stabilized, though at a level that is not really satisfactory (40k at last check). The BK virus has been cleared from my blood but is being stubborn in getting out of my bladder, luckily I'm still asymptomatic. I'm feeling well enough to get back to exercising again, unfortunately to some degree I feel like I'm back to where I was at last January, basically at zero. Honestly, I'm not that out of shape, but certainly worse than I was in August, when I could actually see a glimmer of normalcy.

I know that recently I mentioned that I'd begun taking Lexapro to deal with some depression, and honestly, it's worsened. I'm not entirely sure why, though I guess that is the nature of depression. Some of it may be some difficulty at work, some of it may be due to my lack of activity, not being able to bike or climb recently, some of it may be unresolved issues from the transplant, and some of it may just be. I honestly don't know. I'm fighting it I guess, but I'm not sure I really know what that means. I understand, those who think I should just snap out of it, and be happy that I'm alive, like I said, I don't know why I can't. But hey, at this point I'm still trying, I get up everyday and go work, I try, I take care of dogs, I try to get exercise when I can, I try. I sometimes do feel like I should just run away from it all.

Anyway, it’s another year and I can't believe it's been so long since I left the hospital. My doctors appointment ARE getting less and less, and despite everything, I am expecting a good 2010 - and why not, it is the year of the Tiger (starting Feb 15).

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.