The Inspiration Dilemma

Several months ago I managed a feat that had not managed since before my illness.  I managed to ride my mountain bike up to the Brown Mountain saddle above JPL without stopping.  I'm still ridiculously slow to be sure, but this was an accomplishment of monumental significance for me.  As well, to be sure, for anyone who rides with any frequency, this is not really that big of deal.  For me however doing this ride, without stopping represent some momentous, to me it represented recovery.   For all that went through, the coma, the strokes, the pneumonia, I'd come back.  Perhaps I’m not entirely what I used to be, but this is a level of fitness, a level of normalcy that I'd at times not thought possible.  Sadly I was alone with no one to share this moment, but there are certain times in your life when guess you aren't supposed to have anybody, you know?  There are certain doors you have to go through alone.  

As I have gone through this struggle to reach this point, I have watched my friends go on adventures and reach goal that to a small degree could not imagine.   I have seen them reach beautiful adventurous goals.  Watching this has always been a little bittersweet for me, because, at the risk of sounding a little petty, I was jealous.  Jealous that they were going on the adventures I wanted to do, that once, I did thing equal or greater.  Upon reaching the Brown Mountain, I realized that many of these goals were still there, were reachable once again.  I could once again reach high peaks and descend mountains at fantastic speed; the adventures of younger days were not so far away.  So I've become more active striving to regain even a little of that.  

Unfortunately, I've run into great resistance. Not from other people, but from within myself.  Even as I am inspired by watching others go on their adventures I've found a great wall keeping me back in the form of my own motivation. I've struggled to explain it to myself just as I'm sure others would struggle to understand it.  Recently, though, I had a small revelation that may help explain this struggle, this dilemma.  A friend was describing to me her recent solo trip to Guatemala and Belize and she mentioned how much she enjoyed the challenge both physical of the various hikes and other activities she did, as well as the emotional challenges of travelling solo in a foreign country.  Almost immediately as she described this, realized that I don't enjoy those things anymore.    I'm tired, mentally and emotionally exhausted from the past 4 years of devastating health problem, job loss and break-ups, and loss of long and short term friends.  My well of strength for being to deal with psychological and emotional challenges is dry and for now I don't know how refill it.  Is it time for new dreams and different kinds of adventures? - I'm not convinced.   I still long to climb peaks in impossible ways and ride my bike to place of immense beauty.  My mind has wandered to outlandish dreams that I can't seem to pursue with any real honesty or passion, thru-hiking the Pacific Crest Trail, pursuing a job in New Zealand, among others.  It is a source of sadness for me, as see the years of my life slowly passing by and these adventures and dreams fading.   I guess all  can do for now is keep doing what  can, what I can motivate myself do, keep trying to find dreams and adventures that inspire and motivate me, and hoping and searching for a way to refill the well.

The letter

Because of a recent interest, of a just a couple people in this blog, I've decided to add of few more posts. A lot has happened in the last year and I may go into so of all of it, I will saw that MOST of it has nothing to do with my health or my heart transplant. For this one, I decide to post the text of the Thank You letter I have written to my donor family. I will give this letter to my transplant coordinator at my next clinic appointment and she will pass it on the family. The whole process is initially anonymous.

It may seem like 3 1/2 years is a long time to write this letter. However, I was not ready. Because of the sudden and unexplained nature of my illness and how quickly I got my transplant, it has taken me a long to to even begin to wrap my head around what has happened to me. I've finally reach a point where I could write such a letter late last summer. I wrote the letter. I felt that it was important for me to hand write the letter. So I decided I needed proper stationary and a proper pen. Yes, I was delaying and I don't know why. It is a short letter, hand writing it took about 10 minutes but it has taken me months to actually sit down and do it. I cannot explain why I was procrastinating. Tonight, I finally did, now all I have to do is remember to bring it with me on my next clinic appointment, which I have yet to schedule.

Anyway, here is the text.

Dear Family,

I hope that this letter finds you well. My name is Michael. On September 24, 2008 after a devastating illness, I received the amazing gift of life in the form of a heart transplant.

"Thank you" is an expression which is used quite often and sometimes just in passing. This is a different kind of "Thank you." It is a "Thank you" that defies any language. How can mere words express the gratitude that I feel for your loved one and you. Still, I would like to thank you for your generosity in giving a part of your loved one to me. I am very sorry for your loss.

Since my transplant I have made an almost full recovery, despite a few complications. My new heart beats strong and I consider it my greatest duty and pleasure to live my life to its fullest in honor of my donor.

Although, I feel the words are not adequate. Thank you.

Love

Michael

Tracy Morgan, Steve Jobs and THE LIST

I am in no means a consumer of celebrity news, however, one piece of recent news that did catch my eye was the news that Tracy Morgan, of 30 Rock fame (a show I do not watch), recently had a kidney transplant. For many, this hearkened back to April 2009, when Apple founder and CEO Steve Jobs had a liver transplant. In both instances there seems to be two predominant responses to the news. The first response is fairly typical of anyone who has gone through a relatively serious medical treatment, which is well wishes, which I personally think is entirely appropriate. The second response, which I've notice in both the instances of Tracy Morgan and Steve Jobs is usually very cynical and in my opinion very myopic and ignorant. The response is to complain that these two people got special treatment because they are rich. That they jumped ahead of other deserving people on the transplant list. That somehow there was something inherently unfair or underhanded about these particular people receiving their transplants. In fact, I admit that my initial gut reaction to these pieces of news was very similar. After some thought and consideration, however, I have a little bit of different view. I'm still not 100% sure that everything regarding these transplants was "above the board" so to speak, but consider this.

1. The news never mentions how long these guys waited for their transplants, just that they had them. Personally, I have no idea how long either of these people were on the list. In case of Steve Jobs, there had been reports of him being SERIOUSLY sick for years prior to his transplant, he could have been on the list that entire time. In the case of Tracy Morgan, I seem to recall hearing several years ago that he too was sick, so again, who knows how long he was on the list. They both MAY have waited just like everyone else.

2. All cynicism about how the transplant list works, aside, the list is need based, and I find it some what difficult (though not impossible) to believe that these guys got their transplants before others of greater need. In the case of Tracy Morgan, it could have simply been a case of finding a match, which helps A LOT with kidney transplants. So I tend to believe that the didn't somehow cheat the transplant list. See my next point for more about ghis

3. In Steve Jobs' case, he was on multiple lists in multiple states, to better his chances of getting an organ. He was able to do this because, yes, he is rich, and he could afford to travel to all those different places multiple times, and at a moments notice. I don't know a single person on the transplant list, who, if they had the financial wear-with-all, would do the exact same thing. I know I would have (though I was so ill before my transplant that I couldn't leave the ICU). I cannot fault him for doing this. There is nothing, dishonest, mean-spirited, or unfair about it.

4. Lastly, as I have already alluded to, we do not get the whole story from the celebrity news, so really, we don't know the true circumstances of the transplant and are not really in a place to judge its appropriateness.

I know the situation can seem unfair, especially to those people who are on the transplant list waiting, but I personally can't fault either of men for receiving their gift of life.

One note, this is certainly only my perspective, and should taken with a grain of salt, especially since, even though I have had a heart transplant, I have essentially zero experience with the transplant list. When I was placed on the list, on September 23, 2008, I was placed at status 1A, greatest need, because of this, and my chances of success with a transplant, I was placed at the top of the list for my blood type in my area. Furthermore, I live in Los Angeles, CA, where, unfortunately, many people lose their lives everyday from all manner of things. Because of these factors, I was only on the list for 8 hours, as my heart was found the very same day. Keep that in mind when reading this note.

The Weight

Everyone one of us has heard the phrase "I feel like a great weight has been lifted from my shoulders". For a lot of people, most I bet, I think this is a purely metaphorical thought. For those that it is literal, I imagine a person hefting off a large backpack after a long hike in the wilderness. I always knew what a person meant by the phrase and even felt it myself, after a school paper was submitted, a large project at work was completed, when some great psychological or emotional weight is removed.

A few weeks ago, I felt something that I had not felt before, something I never really thought would happen. A few weeks ago, as the psychological and emotional worries and troubles that I have allowed to continued to allow to build upon me, I felt a physical weight lower itself onto my shoulders. I don't know how to describe it, other than like a sandbag, wrapped from shoulder to shoulder around my neck like a yoke. Honestly, to me, I swear this thing has real weight. Some days the weight feels so heavy that it slows me down, physically - my walking even slows. Without going to into details, I can even pinpoint the exact moment I felt it. Some days it's not so bad, others I can barely get out of bed. Don't get me wrong, I know it's all related to my depression., and I know it's some sort of psychosomatic reaction to all the stress I'm feeling these day. Still, this strong of a physical reaction to all this has really surprised me.

Sometimes I feel very lost with the direction of my life. It's similar with this weight as well. I think I know vaguely what I need to do to lift it, but at the same time I just can't seem to see how that would work. I don't mean, that I don't believe that I can't get rid of it, more that I don't understand to process, which just makes me feel even more lost.

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.