Partial Blog from March 30, 2022

A Little Bit Crazy

Okay first off I owe all of you an apology.  Life gets busy, people get sick, a little depressed, and blogs get forgotten.  A lot has happened in the last 3 years (can you believe it has been that long, I sure can't) and not just in the world but in my own life as well.  I will fill you in overtime but the quick version is, I moved back home while waiting to be sick enough for my second transplant.  I ended up getting it in October of 2019 and moved back home right in time for the world to shut down.   I spent the next few months taking it easy and working on healing.  So far I am doing well, these lungs are holding up and aside from being more tired and worn out than before I am doing well.  And that is the quick version so let's dive into our story for today.

What it's real?  Have you ever asked yourself this?  Do you ever wonder, have you ever not been able to tell?  I have.  3 times now.  The most recent being 5 days ago.  

It is a pretty scary experience.  This time was the worst as in my "dream" world I went from being in the car to what I thought was a pretend hospital room.  When I came to and was still in the "pretend" hospital room saying I was confused is an understatement.  The details aren't really important but this experience more so than the others showed me how bad our mental health care is in this country.   I needed psychological help and it was not given to me.  Instead, I was put in a room alone without anything familiar to hopefully come back.  When I did my questions went unanswered and I could not figure out why I felt "awake" from my dream yet was still sitting in the room it took place, rather than in the car where I was supposed to be. 

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!

Pumpie, and Dex

It has finally happened!!!
I have my insulin pump and my continuous glucose monitor (CGM) hooked up and working!  I love them.  The CGM is great since I don't notice when my blood sugar is low until it is REALLY low (we're talking in the 30s or lower here :O )  For those lucky readers who know nothing about diabetes, your blood sugar is supposed to be from about 70 or 80 to about 140.  You may have experienced what I like to call hungry feeling.  If you experience this you often get hot, unable to think hard or focus, shaky, and of course super hungry, usually for sugary foods.  This feeling means your body is experiencing a low blood sugar.  Your body can usually correct this and most healthy people would not pass out or die from this, however a person with diabetes takes insulin to bring blood sugar down, which when too much is taken can result in an extreme low causing the person to pass out and even die.  In fact we (diabetics) have to carry a special syringe with us incase we pass out from a low, kind of like an EPI pen only ours gives our body the quick burst of energy it needs.  I have never passed out (knock on wood!) though I have been as low as 27 :O (yikes!)   Like I mentioned above I don't notice my lows until I am really low, this feels awful and isn't good either.  Enter Dex, my continuous glucose meter.  This handy little invention goes under my skin and sends a blood sugar reading to a hand held device every 5 minutes.  It shows me trends which are helpful in adjusting my insulin doses as well as to know when I must eat.  Twice my CGM has alerted me of an impending low before the symptoms hit, allowing me to eat some quick carbs and fix the problem before I started to feel like crap!

Dex

My next new "toy" is pumpie, my lovely insulin pump.  The pump has a little tube that goes into me and stays there, hooked up to a little device that has insulin in it and can give me insulin throughout the day without any pokes!  I also have the ability to enter my carbs that I eat to get insulin for my food.  Before my pump I used to have to give myself a shot every time I ate, this tended to drive me away from food.  For instance with dinner say we are having pasta, I would have to decide at the beginning how much I would eat and then give myself the insulin needed.  inevitably I would wind up still hungry and want another serving or "surprise" there is super yummie chocolate cake for desert.  When this would happen I would either have to deny myself the delicious food (not a great idea when you are trying to gain weight) or give myself yet another shot. (not a whole lot of fun)   With the pump all of that is gone, I can now eat and eat and eat without a single shot, just a few pushes of buttons on pumpie and boom more insulin is sent right into me!

Chocolate cake you say?  Bring it on!!!!

My lovely pump

How my pump hooks into me