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