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.  

TTYL

Anna  

Bunnies and the New Year

Hello!
Sorry it has been so long since I last wrote.  Life has been kinda crazy lately.  Since my last post I had my sinus surgery, which went well but left me unable to smell... anything :(.  I also got to go out and visit Michael's family and home town for a much shorter time than planned but at least I still got to go.  I started and finished my final semester of college, graduated with honors, got a new apartment and a job!  Oh and took a semi spontaneous trip to London which was fabulous. You can say things are going pretty well, and they are... or at least were.

Around Thanksgiving I began to develop some shortness of breath. A trip to my doctor confirmed that my breathing was indeed down.  We decided to keep an eye on it, start some antibiotics and go from there.  I did well, was able to enjoy Thanksgiving with my family, return back to school and finish my last few weeks strong.  On Thursday of this past week I went back to my doc and unfortunately discovered that my lung function had dropped even more and this time much more sharply.

All my doctors were understandably concerned and had me fly straight to duke (do not pass go do not collect $200... oh wait wrong thing :P) Anyway.  I got to Duke late Thursday night and was given a bronch the next morning to figure out what was going on.  The results came back as I suspected, I have both froms of rejection :(.

I have dealt with acute rejection up until this point but this is the first time I have had chronic rejection.  Although the names sound similar they are not the same thing.  The biggest difference between the two is that acute rejection can be stopped and reversed.  Chronic rejection is not really something that can be treated it is more managed or slowed.  Luckily the doctors believe we caught it early and that the treatment will be somewhat helpful.  Only time will really tell.

My treatment is a medication called rATG.  It is a substance derived from rabbits that essentially attacks human immune cells.  (I've done a lot of research so if you want to know more let me know).
This treatment is the next level of rejection treatment and will wipe out my immune system even more.  It will be crucial for me to be carful about germs from the next few months at least.  Hopefully this treatment will do the trick to fix the acute rejection and at least temporarily delay the progression of the chronic rejection, but only time will tell.  I will have to come back to Duke more frequently for bronchs after this and to keep an eye on my white blood cells and red blood cell count as this treatment can flare up my cancer again.  Luckily my treatment is going well and I have had almost no side effects. If I were to experience them they are some pretty nasty ones, so I am quite please with that.

This whole ordeal comes once again as a reminder that life is extremely unpredictable and things must be held onto very loosely.  I am currently sitting in a hospital room in North Carolina.  A week ago I was sitting in my Grandmothers house in Aspen enjoying Christmas time with my family and dreaming of sitting on a boat this week enjoying fresh sea air as I was scheduled to go on my first cruise ever.  What I find kind of ironic is my cruise was to celebrate the end of cancer.  Hopefully I will be able to go at some point.  For now I'm where I need to be even if it isn't exactly where I would like to be.  At least it is still a break for me so it isn't interfering with my new job and Michael is not in school right now so he was able to fly out and spend time here, which has been awesome.  Having people around really does make it much more tolerable!

Anyway until next time!
Anna the lemon (or bunny lemon as we are saying now!)

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!

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!