As a follow up to my last post, after a year of silence, I offer this. It has occurred to me that the days of personal blogs being a public forum to pour your heart out. These days people just take care of these sorts of things through Twitter and Facebook. Some thoughts, some idea, take a little more space to get out, and so for those sorts of occasions, I keep this.
I am patently aware that continuing to dwell on the unfortunate events of my life in the past few years is a sad expression of my failure to move on from these events. I know that it is perceived as whining by some. I actually try very hard not to dump all my struggles on others. Maybe it's my own insecurities that cause me to feel like that - this idea that everyone I know is tired of me "dealing with it" Hell I know I am. Regardless I get the impression that I'm not very successful at it. I digress, though, this isn't really what this post is about. I'll just go ahead and call It what it is "Self-indulgent catharsis". Ultimately, I think I write these things in an attempt to have others...understand.
When others go through similar experiences. I often hear them talking about "Putting their life back together", as if, after these events your life is a broken vase, or a unmade, messed up jigsaw puzzle. I understand this metaphor. It makes sense. For me though, I have begun to realize that it is different. When I was in Pittsburgh visiting my family over the holidays, I discovered that one of my nieces liked puzzles. The first puzzle we did together was a small puzzle, maybe 40 pieces with a castle, some princesses and a unicorn. But we ended up trying to put it back together without the picture. I found it hard to even find the edge pieces, let alone have an inclination as to where they went. For me, I feel my life is like that at this moment in time. If I think of my life as that broken jigsaw puzzle, this beautiful portrait that has been shattered, and I go back to pick up the pieces and put it back together, I'm finding that I don't have all the pieces anymore. Moreover, the ones I have don't fit together the way they used to. There aren't even enough pieces left to make the picture anymore. Sure, I could go find a new puzzle, a new beautiful portrait, but I have no idea what that would look like. So there is nothing to put back together, I can't even find the edge pieces, I can't find many of the pieces at all. All I have are these random pieces from my old life that used to be lynch pins of a beautiful scene but now they are just a puzzle piece. But a puzzle piece that I don't want to throw away, because it was once part of something great and I don't like giving up the idea that these pieces, these parts of my life, if I'm being specific, mountain biking, and rock climbing and even my profession, can someday be part of something great again, something new and great and beautiful. For now though, I stay lost, because I don't know where to start again.
Tuesday, January 8, 2013
Wednesday, January 2, 2013
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.
Sunday, January 1, 2012
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
Tuesday, December 21, 2010
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.
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.
Thursday, December 2, 2010
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.
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.
Wednesday, November 17, 2010
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.
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.
Friday, September 24, 2010
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.
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.
Friday, June 18, 2010
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.
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.
Friday, April 30, 2010
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
http://www.active.com/donate/DonateLife2010/MStrane1
Wednesday, April 21, 2010
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
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
Monday, March 29, 2010
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.
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.
Wednesday, February 10, 2010
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.
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.
Tuesday, January 26, 2010
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
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
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
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).
Friday, November 20, 2009
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.
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.
Sunday, October 25, 2009
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 onSeptember 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...
It is a time of good news and bad news for me. First the good news, my one year anniversary was on
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...
Wednesday, October 7, 2009
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.
Thursday, September 17, 2009
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
Thursday, July 30, 2009
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.
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.
Tuesday, July 14, 2009
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.
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.
Saturday, June 20, 2009
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.
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.
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