Thursday, July 7, 2016

When bad things happen

      It is life, bad things will happen.  As much as we want to believe they won't, they will it is inevitable. I think one of the hardest things to understand about suffering is that there is nothing we can do to prevent it.  No amount of preparing, no amount of security, no amount of money, not even faith can prevent disaster from striking.  Yes, some people seem to get more then others but this could very well turn around and hit someone else.  
     I am sure that it is the same in any situation but since I am most familiar with the health world that is what I will focus on.  The world is filled with ideas and tips on how to prevent our health from failing.  In a single day we are often faced with adds and emails and well meaning friends telling us about, such and such pill, or drink, or fruit, or work out, or herb, or treatment, you name it, that will prevent our health from getting worse, prevent cancer, cure us.  I am sure that there are treatments out there that have great benefit but there is nothing that can 100% of the time prevent the bad from happening, it just does. 
     As a person who has Cystic Fibrosis and is post transplant I have come across my fair share of hardship and seen it in countless friends.  The question I am often left with is why, why me, why them, why not me.  This summer, and really the past year, has been especially hard it seems for my close friends.  One of my first ever friends with Cystic Fibrosis died a few weeks ago.  He had gotten his transplant not that long ago and was doing well until suddenly his lungs were having trouble, he ended up in the hospital and didn't make it out.  In the late spring another one of my CF transplant friends who I met at Duke learned that her lungs have quit on her and she is faced with having to have a second transplant a little less than 3 years after her first one.  The biggest shock of that situation to me is the fact that she doesn't even have rejection.  I had always thought that rejection was what to worry about and that was what would cause a person to need another transplant, yet here she is stuck in the ICU because she is doing so poorly with a new transplant as her only hope, simple because the lungs are done.  When I was going through my cancer treatment I met a guy who was a CF post transplanter who also had PTLD (my specific type of cancer)  Although his treatment went well and he beat the cancer, he ended up getting sick and did not make it.  Another girl I met who also has PTLD was diagnosed a few weeks after me, yet she is still battling it 2 years later.  Last summer out of the blue another one of my CF transplant friends died suddenly after having trouble breathing and being admitted to the hospital.  This past fall a similar thing happened to another friend when he got sick.  With all of these horrible things happening it is so easy to want to find a reason why them and not me.  But the truth is there isn't a reason, or at least not one we can know here on this earth.  
     Yet we all still try to do it, we try to find the answer, oh well they didn't wash their hands enough, or they went out in public too much, that is why they got sick.  They forgot their pills one too many times, or didn't follow the doctors orders.  Some times these answers are so simple we deceive ourselves into believing they are true and we find ourselves, almost crazy with the routines we follow in an attempt to prevent the inevitable.  Our routines give us the false sense of security that as long as we do XY and Z the bad will avoid us.  If I take my pills diligently and always get my labs done on time, I won't get rejection.  If I use enough hand sanitizer I can literally keep the germs away and will never get sick.  In reality infection can still strike no matter how careful one is and rejection can happen despite doing everything right.
      In may the year I got Cancer, I remember being in Mexico and slightly freaking out about using sunscreen and that I wasn't using it as much as I should be.  I remember thinking to myself "Oh no I'm going to get cancer because I haven't put this stuff on enough", then I read an article about how sunscreen may be linked to some types of skin cancer, which as you can imagine caused a real dilemma as it seemed I couldn't win either way.  Well I didn't get skin cancer but a few weeks later I found myself lying on a bed in the ER as life saving blood was slowly dripping back into my body while the doctors tossed around things like, Cancer, lymphoma and Chemo.  I ended up with cancer, which no amount of sunscreen (or lack of sunscreen) could have prevented and ironically was made worse (and sort of caused) by the drugs I  religiously took to avoid getting rejection.  Needless to say I was doing the best I could to do everything right and the storm still found its way in.  
     I think the important thing to remember when things go bad is that it is normal and it isn't the persons fault, sure there are some things that really can be prevented, but for the most part bad things happen despite our best efforts to prevent them.  In fact bad things happening to us is a promise found in the bible,   in John 16:33 Jesus says "In this world you will have trouble.  But take heart! I have overcome the world."   The only thing we really can do is cling to each other and if we believe in God cling to him. 
     This post has been formulating in my mind a good part of the summer.  When I first began writing it I was doing well.  My weight was the highest it has ever been in my entire life (a good thing for me), my appetite was awesome and my latest CF clinic visit produced my highest PFTs to date.  The thoughts on bad things happening were simply observations of friends lives and memories from my past.  Well at the end of May that all changed for me as I began getting sick again.  At first I thought it was any old infection that would be treated with a round of antibiotics, some water and rest.  Well that didn't help.  Two rounds of antibiotics later and I was still coughing a ton, my appetite had dropped and I was horribly out of breath with even slight activity (climbing the stairs to my room for example).  I felt almost like my old pre-transplant self.  To make matters worse my PFTs (the test that checks how well my lungs are doing) had dropped a significant amount.  Luckily all this began happening right around the time of my next transplant clinic visit, so we added an unplanned bronch onto my visit lineup to check my lungs out and get a better idea of what was going on.  As I kind of suspected I have rejection.  I also have (hopefully had, as I am doing much better) a virus.  The bummer about this is that there is no treatment for most viruses, which explains why the antibiotics did not work.  The presence of the virus delays the treatment for my rejection because the treatment involves lowering my immune system more than it already is to stop the attack on the lungs, which is not a good idea when there is a raging battle taking place between my body and the virus.  I don't know about you but I'd rather not take out half my soldiers while the other side is already in the lead.  The delay in treatment means that I will likely be dealing with the effects of the rejection mainly the lower PFTs and the shortness of breath, for most of the summer as I won't begin treatment until close to the end of July.  It also means that my return bronch to check if the rejection is gone will be right before I start school, which kind of messed with my plans to move back to Phoenix.  The good news is that I am doing alright for now, my rejection is mild and likely treatable, I will still be able to go back to school (just a little later than I had planned), and I should be back to my post transplant normal in a few weeks!

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