Friday, July 14, 2017

Once a Lemon Always a Lemon

      Being a lemon is not temporary it is a problem deep down at the very core.  You can get a new paint job and put in all new upholstery and although the car might look shiny and great, drive it off the lot and around the town for a few days, weeks if you are lucky and pretty soon the check engine light will be flashing and another $1000 bill will be added to the pile.  As much as I try to hide it, or tell myself it isn't true I really am a Lemon.
     I have been pretty lucky up until this point (and really considering my lemoniness I am still fairly lucky).  For the most part, since the whole cancer thing was dealt with, I have been able to enjoy a pretty normal life.  I have had a few bouts of rejection here and there but that is about it, until this year.  If you have been following my story closely you know that the new year, brought some new bugs, a few weeks long sickness and the end of my no hospital stay streak.  Well since then I have had a cough.  This pesky cough was what I thought, a sign that I had rejection.  In May I had a bronch to check that theory, which was correct.  I did a 3 day dose of heavy duty IV steroids and my cough went away.  Or so I thought, a week later there it was again.  
     In June I went back to Duke for a follow up bronch.  I was prepared for another round of rejection treatment, but no rejection.  So why this cough?  My doctor thinks it may have something to do with my sinuses and told me to get checked out by the ENT (ear, nose and throat doctor).  
     The results of that visit were less than ideal.  At 25 I think I have become an official member of the Cystic Fibrosis club as I too, like many of my friends before me, will be having sinus surgery.  The biggest down side, as if having surgery weren't bad enough, is that it seems the only time to have my surgery messes with my travel plans for the summer.  Not cool CF, not cool!  
     For probably the first time in my life I am having something medical done that does not have to occur at a specific time.  I am not sick, this is not sudden.  It is being planned and yet, I still find myself forced to cancel plans and miss out once again.  To me this is one of the most frustrating aspects of having a chronic illness, my health always seems to get in the way.  The lesson learned from all the changed plans and disappointment is good, life is completely out of your control.  No amount of planning, no meticulous medication schedules can prevent illness and changed plans, which has been good for me and really helped me to have more of a go with the flow attitude then is my true nature.  Unfortunately, the path to this discovery is littered with dissapointment, feelings of being left out and frustration.  This surgery is simply more of the same.  What makes it so difficult is that it is planned.  It did not have to be one more missed event in the book of my life, and yet, despite my best effort it is going to be.  In addition, the surgery comes with another hospital stay, so there is that too.  

     In other news, the climb is next weekend!  You all have been a huge help so far and we have raised a fair amount of money.  Thank you! 
    For those of you still thinking about donating, DO IT!!! The money goes towards helping find better treatments for people with CF, with the ultimate goal of finding a cure, so people can stop missing out on life!  OR at least miss out less.  So please, please help!  Even if you only have a dollar, if everyone gave a dollar it would add up real quick.  (feel free to spread the love around, it all goes to the same place whether you donate to me or another teammate!) 
                                 To Donate to our team, click any of the TEAL words!
   Also in case you are wondering, the CF Foundation is one of the top non-profit organizations and has a fantastic model to use the money most effectively, many companies look to the CF Foundation to learn how to go about this themselves, so your money will be used well!  

Friday, May 12, 2017

Bumps in the Road

Hey guys!
Sorry I've been kinda MIA this year, but like I said before this is a good thing, it means I am out living my life.  This year I really have been!  School is out and once again I am back in Colorado, this time for most of the summer, no awesome travel plans to Europe for me this summer.  Can you get withdrawals from lack of travel because if you can I have them.  I miss being in Europe so much and can't wait until I can get back there.  Next summer anyone?

Anyway, this semester went well, even with the slight hiccup at the start, which ended up causing me to basically miss the first two weeks of class.  My classes were all super interesting and I really learned a lot.  My social life has also seen a few big changes.  Remember those great friends that I mentioned in my post from January??? Well one of them has become a little bit more than a great friend!  That's right, I'm dating now!  It has been going really well and is definitely an exciting new path in my life, neither of us is sure where this leads yet but it is an adventure and we are both enjoying getting to know each other better!

Most of my summer will be spent at home or working.  I am going on my usual Mexico trip, but for a lot shorter time this year.  Then at the beginning of June I am in a few weddings.  I have reached that age where all my friends are getting married.  The funniest part of all is that both of my groups of friends (School and friends from home) are at the marrying age despite being 5ish years apart.  It's what happens when the younger ones are part of the Christian crowd, why is it that Christian people often get married so young?

As far as my health goes, I've hit a bit of a road block.  Rember that crazy sickness I had back in January well, ever since then I have had a bit of a cough.  I had met with the transplant team in Phoenix and they didn't seem to think too much of it.  However I had this sneaking suspicion that it was linked to rejection.  After a bronch at my most recent Duke trip, it was confirmed that I do indeed have rejection again.  (What is this like my 6th or 7th time?  It seems like my only break from rejection was right after chemo, killed two birds with that one stone)  Luckily, so far I have only needed the lowest form of treatment they have for rejection, which is what I will be doing this time too.  I will start an IV steroid treatment tomorrow afternoon that will last for 3 days.  I will have to go back to Duke later in June for a follow-up bronch to make sure the steroids do the trick.  Steroids are not my most favorite thing in the world but I am thankful they are available and effective in treating my rejection.  Hopefully this time the IV goes in a little smoother than it has been in the past,  last time it took 6 tries!

With this last bout of rejection have been getting a lot of people wondering why I have rejection again, doesn't your body get used to the lungs eventually?  Unfortunately, the answer is no.  Rejection is always a threat with lung transplant and sadly is one of the leading causes of death for people post transplant.  The transplanted lungs are not my own cells and they never will be.  Our immune system is designed to recognize self versus others and respond to the presence of other by attacking and destroying the foreign cells.  Great when it is a bacteria invader, not so great when those cells are another's organ that is keeping me alive.  As of right now there is no treatment that completely prevents the immune system from attacking the lungs while still providing the necessary protection against bacteria and other harmful substances.  That is why it is so important to put off transplant as long as possible.  Transplant helps give a person more time but it is not a permanent fix.  One way you can help people like me delay the need for a transplant as long as possible is by donating to the Cystic Fibrosis Foundation which does ongoing research into new and better treatments for CF.  They are not governmentally funded at all, yet they provide amazing support and treatment for all people with CF.  They are a major part of the reason I made it as long as I did without a transplant.  In July a group of us will be climbing the stairs at the football stadium to raise support for the foundation.  If you are around and interested we would love to have you join our team.  Please also consider donating (that's a link, click it!) to our team.  All the donations go directly to the Cystic Fibrosis Foundation!
Thank you so much for your support!

At the Sand Dunes with Anniken (My Norwegian sister!)

Adventures with this crazy kid!

Art Night with these Cuties!

Some of the Climb Team from last summer!

0 days since last hospital stay

Blog post written back in January (oops, sorry guys!)

They say transplant is trading one disease for another, it's easy to forget this when things are going well, but inevitably post transplant "disease" has its way of keeping it on your mind.  For most of this year things have been going fairly well.  I have been mildly sick here and there but nothing major, well... until now.  New year, new germs, or something like that.  Anyway, I got pretty sick after the start of the new year, probably the sickest I've been in a long time.  It all started with what I thought was a cold but quickly realized it was much more.  I was still at home so I went in to see my CF doc there.  I was sent home with a few meds in hopes they would do the trick and they did... or so I thought.

Fast forward a week and I was sick again.  This time much worse than before and I was back at school.  I ended up doing a little research and found a transplant hospital in Phoenix so I decided to go there.  I figured they would know what to do and I wouldn't risk getting trapped in the ICU again (read about it here).  Luckily I made the right move.  This place seems pretty good and they have been doing exactly what I would think they would do.  I've only been in a couple days and already I am doing much better.  I was on oxygen when I first came in because I couldn't breathe and I am off of that completely now!  Hopefully I will keep on getting better and be able to get out of here in a day or two.  The semester just started and I really need to get back to class!

 My hospital streak is gone, but I am where I need to be for the moment.  I will have to start a new streak once I get out of here!  Thankfully I have some amazing people here who were willing to help me out, from taking me to the hospital and hanging with me for hours in the ER, to helping my mom get my car and just being here hanging out with me and playing games.  I am so thankful for the people I have in my life!
The start of this whole thing, I think Nora knew something was wrong