At least there is no saw this time.

Well, it's all set, on December 8th, I get cut again for my cholesystectomy - surgical removal of the gall bladder. I've been having pain in the upper right quadrant of my abdomen since mid-July. In July I was having what I called "attacks", pain so severe that I was doubled over in pain, it was worse than anything I remember from my time in the hospital for my transplant. Gall stones. That was the diagnosis. Each time I passed one, it was an attack. The only thing to help - two vicodin (or the duladid they gave me at the hospital). So by the beginning of August I was no longer having "attacks", instead it was constant low grade pain, as it has been for the past few months. The foregut surgeon and my transplant doctor both agreed that the gall bladder needed come out. The general view is that once you have gall bladder issues you will always have gall gladder issues. Additionally, because of my compromised immune system there is a great danger if my gall bladder gets blocked and infected, as my body can't handle that sort of infection. So out it comes. Unfortunately, it's not that simple. I'm still dealing with ITP and my blood platelets have been bouncing all over the place from 14k to 82k to 46k to ?. We went back and forth about whether I needed a splenectomy as well (the last ditch treatment for ITP) but after an incredibly painful bone marrow biopsy, we backed off of that. Cholesystectomy only. Uggh. But I still have to deal with the ITP. It's not such a good idea to go get surgery (even laproscopic) when your blood doesn't clot so well. Luckily I have B+ blood which make it possible to use the WinRho treatment for my pre-surgery treatment. Which is good, since the only pre-surgery treatment for ITP, IVIG, gave me chemical meningitis last time.

As a result of all of that silliness, I have 4 Dr. appointments before I go for the surgery. The first two weeks of December are going to be busy. Two pre-op appointments, 2 blood tests, and 1 surgery. Additionally, for most people, gall bladder surgery is an out-patient procedure, I will be staying in the hospital overnight. Good thing I have no sick time and no vacation left.

Really, I guess the question other people might ask me about this is "How are you feeling about all this?". Really, I'm not sure. In some respects, I think I'm numb to it all. After all I have been through, this just seems like par for the course. I'm used to it, and to some degree, I'm starting to expect it. Expect the problems. Perhaps as the surgery comes closer I will start to get nervous, but I really don't know. At least this time, a saw won't be part of the surgical equipment.

The 2 year list

Today, 2 years ago, September 24, 2010, I had my heart transplant after waiting only a few hours on the waiting list. Today, is my day for reflecting on my ongoing journey. A to give thanks to my donor and my donor's family. This weekend I'm going rock climbing, which I have been doing since about 3 months ago my transplant. I'm still struggling to get my fitness back.

Anyway, at this time I like to do a kind of checklist or inventory of the issue I'm dealing with thus far and how it going.


1. BK Virus - My virus count are down and I've been Asymptomatic since Jan 2009, so I can't really complain about that.

2. ITP - As of the beginning of August my platelets were 80km as high as they had been in a year, though ~120k is considered safe and 300k is considered normal. Let hope for continued unexplained improvement

3. Gallstones - likely I have passed all of the large one (excruciating pain) though I still get twinges of pain here and there. It's coming out. Luckily it's laproscopic surgery and they will be able to take it out before the end of the year (for my insurance).

5. Barrett's Disease - For those of you who don't know, I now have Barrett's disease which is ..I don't know what to call it, abnormal changed cells in the esophagus. They are considered pre-cancerous and are typically caused by chronic acid reflux syndrome. I don't have acid reflux so it goes down as yet another unexplained issue. Sometimes I think someone is out to get me, but they aren't having much luck, I'm too strong. Anyway, the cells are confined to a very small area and are non-dysplastic, meaning they aren't really mutated, so at this point they are just going to monitor them.

5. Depression- well, I don't know what to say about this. It's still being managed with medications, my dose hasn't changed. I'm feeling ok...better, but I would say it's still tentative. There isn't really a plan to get off the medication right now. I'm just moving forward, and keepin tryin to get better, more optimistic, more motivated.

Well, that's pretty much it. No rejection so far, my BP is well controlled and I haven had a major medication or dosage change in at least a year. Everything with my heart is great, though sometime I kinda feel like the rest of me is falling apart.

The Hardest Part

Probably the most often question asked of me is some variation of "How did this happen?" or "Why did you need a heart transplant?” Sadly the only answer I can really give is a shrug and a weak smile. The truth is I neither know why nor understand why this happened. Not long after I got out of the hospital asked my doctor about the pathology of my old heart. The answer he gave me was pretty vague and wishy-washy even for medical speak. The report described how disease ridden my heart was, how sick it was, how it showed signs of other heart attacks, but really came to no conclusions or how it got this way. My doctor grumbled something about genetics causing premature coronary disease, but really, I have no family history of such premature coronary disease, no risk factors at all. 'Bad luck', people say.

Honestly, I guess there is some comfort in knowing that there isn't really a reason for what happened to me, that there was nothing I could have done. But still, sometimes it feels like living under the sword of Damocles, not knowing what (almost) killed me. It is not an oppressive fear that hangs on me, but it is there. It is incredibly difficult not knowing, not understanding how I came to have such a ridiculous string of health challenges (heart attack, pneumonia, strokes, infections, ITP). It is a question that haunts me, the question that I can't escape. It is a question that is extraordinarily frustrating. Not knowing why this has happened to me, and not knowing why I am to I face these challenges. Among all my current challenges, the depression, the meds, the ITP, not knowing is the hardest part.

Tomorrow is the day

Tomorrow is the day. I will be running in the Donate Life 5k in Fullerton, CA to support organ donation awareness. Thanks to everyone who donated, I 've raised $1300 dollars so far. If you haven't donated, you can do so at

http://www.active.com/donate/DonateLife2010/MStrane1

DonateLife Run/Walk 5k

This is the second year that I'm going to participate in the Donate Life 5k. Last year I walked the 5K with a wonderful group of friends. This year I plan to earnestly run the 5k and have already begun training to do so. I have some distance to go to get to running an entire 5K, however the course is flat and I'm looking forward to the challenge.

I would like to take this opportunity to thank everyone who donated last year. Thanks to your generosity I was able to raise nearly $3,000 and ended up being the #2 fundraiser of all individuals.

You can sponsor me here.

http://www.active.com/donate/DonateLife2010/MStrane1

There is a severe dearth of organ donors right now, so any bit you can give would be greatly appreciated. Also, please remember to register to be an organ donor. You can do that here:

http://www.donatelifecalifornia.org/


or here:


http://organdonor.gov/


If you do sign up, please remember to tell your loved ones of your wishes

Strength and Luck

A few weeks ago I had a chat with an old friend. In fact I've known this person for about 32 years. We were never super close friends but we drifted in and out of acquaintance because of our history and the fact that her brother was an incredibly close friend for many years.

She was very aware of my heart attack and subsequent heart transplant but she didn't know that details. Providing that I'm terribly comfortable talking about my experience with people I know, she asked questions and I answered them honestly. It'd been a while since I'd gotten into this much detail about the nitty-gritty of what I went through, and I've found that it helps me to talk about it in detail every once in a while. As I watched her incredulity at all that I had gone through, physically and mentally, it finally dawned on me. It finally sunk in. Something that people, Wendy in particular, have been telling me for long time that I don' think I ever truly accepted until that moment.

I am strong.

I finally accepted, realized, the incredible strength it took for me to get through and survive the physical challenges I faced. I survived a massive heart attack. I survived strokes, and infections, pneumonia, loss of circulation, having my chest open for 11 days, and three major three surgeries. I survived all of that and I am walking and talking today. I am strong. More over, while I was in a coma, I battled nightmares of torture, kidnapping, drugging, terrorism, and many other terrifying circumstances, and through every nightmare, I fought. I fought to stay alive, I fought to escape, I fought to get home, I fought to save my self and many of my loved ones, through fear and pain and never ending dark I fought, and I can honestly say that I never gave up. I am strong. In fact, I have no doubt that had I ever given up, in those dark places, I would not be here typing this today.

I am strong.

To this day, I have people tell that I am lucky. To be honest, I chaff at this, probably more than anything anyone tells me about my experience. True, at times I do not feel very lucky for what happened to me. Even now, how I came to go through this seems extraordinarily unlucky. But I think I know what people mean when they tell me I'm lucky, and that is really what bothers me. It wasn't luck that got me through. It wasn't luck that I survived. It was passionate doctors and nurses who never gave up on me. It was a mother and girlfriend who never left my side. It was the dozens of cards and messages I received from friends and family, old and new. It was because of these that I survived It was because I am strong, and calling it lucky not only does a disservice to me, but all of the people who worked and prayed to help me live. It was not luck. I am strong

It is foolish of me to deny luck in this though. I am lucky that I live during the time that I do, when medicine can bring me back from death. I am lucky that lived where I did so that I would end up with the nurses and doctors that took care of me. Some may think that me receiving my new heart merely 8 hours after I was placed on the transplant list is luck, but I say, no, it was love. Love of a grieving family who had it in their heart to donate their loved ones organs so that others may live, in their darkest time.

It is taking me time to process this experience that I have been through, and am going through. It is still one I'm going through, and I have far to go, but I can now tell you this:

I am strong.

It's the little things, ain't it?

I do think that at some point I should stop looking back, however, this morning, I started thinking about all the little things. What little things am I referring to? When someone has a long hospital stay and devastating health crisis like I had, the focus is on the major health issues and not on all the little annoyances that go along with a long hospital stay and being on high doses of dozens of medicines, things that I may not have mentioned previously.

Being in a coma, obviously, much of your normal hygiene routine falls by the wayside, and for various reasons, does not get taken care of. When I was very sick, my heart had trouble keeping my blood pressure high enough, to help it, I was on blood thinners. Because of that, it was important that I did not get bleeds. This meant they couldn't brush my teeth properly. Instead of a normal tooth brush, it was an essentially a piece of foam on a plastic stick. I remember this because they were still using these "brushes" after I woke up. The problem with these things is that they don't really clean your teeth of plaque and tartar, so when I woke up my teeth were encased in plaque and tartar. Maybe not that big of a deal, but all the gaps between my teeth had filled in - so much so that my teeth actually kind of hurt - it was uncomfortable. So uncomfortable in fact that I used to fantasized, in my delirium, about them having a dentist come in and clean my teeth.

After my transplant, I finally convinced my mother to bring in the sonic toothbrush and after a couple of days of using that I was able to free my teeth from their tartar imprisonment.

In addition, to not being able to properly brush my teeth, they also refused to properly cut my toe nails, for fear of cutting the cuticle. This wouldn't be such a big deal, except for the fact that I have a couple of minor hangnails that need attention. The nurses at the hospital had no idea how to deal with them, and thus refused to cut my nails, nor would the let me (not that I could, but I'll get to that later). I wasn't able to cut my nails until I left the hospital, and by that time my nail, while not that long, again my mother had actually managed to trim them for me a bit, had reached a thickness that I didn't think was possible for nails- I would say 1mm, but it sounds like an exaggeration. I'm not sure, but I do know that I had to cut my nails with big scissors because nail clippers wouldn't cut it, literally. Anyway, after a month or so trimming my toe nails were back to "normal". I suspect that the medications change the biology of my body in some way and caused my nails to grow in this weird way.

This brings me to my hair. When I left the hospital, I noticed that my hair had taken on a straw like quality that no amount of washing would relieve. Only the strongest of conditioners would seem to soften it up for a bit. Again, I suspect it's from the medications. Eventually my hair went back to normal (albeit with a few more gray hairs), but really don't think it really recovered until it had all grown out.

Speaking of hair, one thing that I did not like about being in the hospital, aside from having to go to the bathroom in a bed pan and be helped by someone, was the sponge baths. In addition, to it being humiliating to have some one else, including men, clean you with a sponge, it was cold. Sure they would use warm water, but you are still open to the air, the only good things about it was 1)being clean afterward, 2)the pre-warmed blankets they would put on you afterward. One good thing about being in the hospital though was how they cleaned my hair (on occasion, since they only did this a couple times). One way to clean your hair was to put this shower cap sort of thing on your head, which fit pretty tight. They (the nurse) would break something in the cap and it would be filled with shampoo and warm water. It felt so good. I loved it, though some crazy nurse told me that it would make me lose my hair - not a very nice thing to say to a psychotic hospital patient.

Other things I think people don't think about for those in a coma. You lose your voice from having a tube down it for weeks. You lose you appetite because they kept your stomach full through a feeding tube. Your hearing becomes very sensitive...because I don't why, but to this day I have ringing in my rings whenever I hear a cracking noise, like for example, every time I hear a carabineer shut closed.
You get amazing knots in your back from lying in med some much- when I got out the hospital I had walnut-sized knots in my back -it was impressive.

Still, all of these were minor annoyances, yet somehow, I remember them almost as vividly as the actual horrible things that happened to me.