Thursday, December 13, 2018

Frequent Flyer

There is a truth in life that we all try to avoid.  Some of us go much longer than others without having to face the reality but one day, everyone, everywhere, in every-time, will come to the reality that we are not in charge.  That our life is not our own, we can not do whatever we want or follow our heart, or become anything and no amount of meticulous planning, saving, working toward a goal can stop the inevitable from happening.  At some point all of us are going to face a moment where we realize just how out of control we are....well ladies and gentlemen, I have reached that point.  Do not get me wrong I have had moments like this before.  Its kind of impossible to grow up with Cystic Fibrosis, get a lung transplant and have cancer while still living in the blissful world of having control.  Having lived life both ways, I am human after all and we are all prone to believing we have control at one point or another no matter how much life forces us to see we do not, I would argue that life is actually simpler and more peaceful when we learn to release control.  Especially when we release control to God, who if I'm completely honest with myself is and was in control all along.   Luckily for us God has a way of forcing us to see this and that is the exact spot I find myself in. (or was in last week when I started to type this) .

I am finishing this almost exactly a week later and my life has settled a bit.  It is still wildly unpredictable but I have had a week to ponder the unpredictable and have had some nights of good sleep in my own bed to help me cope and my peace has returned.

So heres the deal:
Last time I wrote I was starting out on this path to figure out why my lung function had dropped.  One short nap for me, and an exploration of my lungs for my docs and it was discovered that my silly old immune system is acting up again and attacking my lungs.  My doc decided to give me rATG again (the same treatment I did last December).  This med is given inpatient so I was checked into Duke Friday 2 weeks ago.  I was in the hospital for almost a week and got out last Wednesday. The treatment went fine again like it did last year.  I spent the days sleeping off the Benadryl high and the nights walking the halls, painting, watching movies and confusing my nurses with my night time awakeness and strange use of a bed.  We are hoping this treatment will help bring my lung function up at least a bit and stop the rejection as the bronch showed acute rejection which is a reversible kind.  As if this was not enough we also discovered that I might have specific antibodies that are targeting my lungs.  This is another part of the immune system and what a flu shot works on, you give the shot, your body basically makes a key that identifies the flu virus so that the next time your body sees it it can identify it quickly and wipe it out.  Great if it is the flu not so good if it is your lungs.  As a result of this we decided to attack my B cells with another treatment, these are the cells that make the antibodies (keys).  This treatment is one of the medications I received back when I did chemo so it is not a drug I have never had before.  The treatment will be a weekly outpatient infusion for 4 weeks.  It is scheduled to be given at Duke but we are in the process of getting it moved to Colorado.  I got my first infusion of it yesterday at Duke that went alright.   I had an allergic reaction to the medication, which happened last time as well.  My throat got very itchy and stingy and my lungs felt tight.  At the same time my blood sugar was dropping, unrelated to the med, which lead me to feel AWEFUL.  Some juice, a shot of epinephrine, some IV Benadryl and more steroids later I felt back to normal and was able to start the infusion again, this time with no drama, as usual I was super high from the Benadryl and forced myself to sleep it off, so you know there would be no prophesying.  

Hopefully the combination of the two treatments does the trick.  It is kind of silly because unlike a normal medication that helps your body to work better these meds are meant to wipe out my immune system as it is working too well, great for not getting sick much this past year, terrible when you are trying to keep foreign lungs happy in your body.  If these do not work we have a few more tricks in the bag and another transplant is also a possibility.

Although I have some answers and a mild idea of the next few weeks, most things are still quite up in the air.  I have to take a month or two off of work as my doctor feels I need to rest between treatments and should not be retuning to work yet.  This has been hard for me as I have really enjoyed my work and miss getting to interact with my clients.  I also feel bad as my clients have no idea what happened to me all they knew is I would be out for a few days and then back the next week.  Well that has now turned into over two weeks with no return in the near future.  Basically I just suddenly disappeared.  Which has been kind of strange for me to think about.  The other big thing is that I am looking into the possibility of moving back home.  I have been in Phoenix off and on the past 4 years and have been living here long term for the past year.  Although I constantly think about moving back home and miss my family I also really like the warm weather and am not looking forward to going to CO in the winter.  I still am not sure what I will end up doing but I have decided to at least go home while we figure things out so that I am not alone out in Phoenix as these treatments and my decreased lung function have really been affecting my daily functioning and leaving me fairly tired.  So that is the plan for now.  Is it set in stone, definitely not.  This could all change tomorrow.  My lung function is pretty low and we do not have much wiggle room, if I wake up tomorrow to a lower function this whole plan could be dropped and I could be rushed off to Duke to be hospitalized until lungs become available for me.  At this point anything can happen.  So we wait, trust God and go about daily life as best we can.  


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