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.  


Sunday, December 2, 2018

Winds Are a Changing

Quick note: I wrote this post over a week ago on the plane to Oregon for Thanksgiving :O guilty!  Anyway its a bit of old news are in luck as I will post an update this week!  TWO POSTS IN ONE WEEK!!!!! WHAT?!?!?!?!

Hello Bloggolowers!  
If you haven’t realized by now that my posts may will be sporadic, its time to check yourself as this has been going on for 5 years.  Wait….. WHAT!?!?!?!?!   5 YEARS… wow!  JK I know it has been 5 years did you?  Anyway this is my 6th year with these new used puppies!  Things have been going well…okay.  This latest year brought with it some.. doctorshurdlesproblems excitement.  It all started around this time last year. I had returned from my adventures in London and was a bit sick. A doctor visit and a course of antibiotics later and I was back to my usual spunky self.  Fast forward a few weeks to Christmas.  I had begun to notice that things were not quite right and my breathing was not as good as normal.  I kind of wrote it off as I was in Aspen at the time and going from living in Phoenix at a few hundred feet to Aspen at a few thousand feeling out of breath sooner was kind of a given. However, Christmas morning I jokingly told my mom “I probably have chronic rejection”, you know in the way I used to say I was going to probably get cancer one day…. Uh… I should probably stop saying these things!  I wrote it off and we went about our vacation.  Then I went to the doctor.  This was a routine follow up I had scheduled weeks before and figured it would be good to do as I was leaving for a cruise in a few days.  Long story short this doctor appointment set off a whole chain of events that is still going on to this day.  If you aren’t caught up with what happened check it out here and here.  So now that you are up to date, lets talk about what has happened since.  The Campath worked wonders.  My immune system was wiped out (I had one lab test that actually had the result of 0!), and the plummet down the lung slide stopped.  I was stable for a while and other than some mild tiredness and some occasional joint pain my silly body handled that drug like any good druggie!  Fast forward to July.  I went to the doc had a good report got home and subsequently got sick.  Yup thats the way us lemons like to do it!  Due to a decline in lung function from this sickness and several missed days of work I contacted my doc and was told I needed to be seen.  So back to Duke I went less then 10 days after getting home.  (on the bright side I reached A list status with the airline this year!)  Nothing came out of that trip and I was back to my normal life in a few days.  Then came last week.  I started to feel out of breath more than usual (this time without a change in altitude) without a cough or any signs of infection.  I checked my lung function and whooptie do, I’m down again and a decent amount at that.  An email to my doctor later and I have another trip planned out to the good ole’ NC, for a bronch.  YAY! At this point I have no idea what to expect.  Chronic rejection is a whole new world for me one that, assuming everything works out, will end in another transplant.  Definitely not something I am looking forward to by any means of the imagination but is a bridge I will cross, if and when it comes to it.  For now I try to live my life as best I can while balancing the ever increasing demands of this silly body and trying to adjust back to a similar lung status as I was a few years before my transplant.  I do fine when sitting still but get me walking or doing anything that requires a boost of oxygen and I am out of breath in a minute.  The weird part this time around is I don’t seem sick what so ever.  With CF you are hacking your lungs out all day long so its easy to see why you might be out of breath. This time I seem pretty normal but inside I feel like half of my lungs are missing or broken and I just can’t take a good breath. (which they kind of are).  So thats the dealio with me.  Just, you know, keeping life interesting. 

While all of this is going on I am still trying to maintain my full time job, a puppy (whom I absolutely adore!), teaching English part time (click here if you are interested in doing it too!  You can always contact me with questions Id love to help you get hired!), napping, shopping and watching all the cheesy Christmas movies Netflix has to offer. Plus you know trying to figure my life out and what my next steps are like any normal post college 20 something does.  Saying I have a lot going on is a bit of an understatement, just ask my kitchen and sink full of dishes or the clothes that I pull out of the dryer to wear each day.
Until next time!
Go do something fun! Life is short, LIVE IT!

Friday, July 6, 2018

Day 1728.....uh its been a while

Hello.... Hello..... Is this thing on...
Oh I there! I'm back!  Sorry, it has been soooooooo long, I was just keeping you hanging as all good storytellers do :P.  Nah actually I have been rather busy these last few months with moving, starting a new job, getting a new schedule, seeing the doctor, medical treatments....oh and a puppy :D.  Well, that about sums it up,
Until next time.

I guess I could give you a little (or a lot) more detail.  When we talked last I was in the hospital getting pumped full of bunny immune cells.  Well I am hoppy ;) to report that I am still human and going about my life merrily.  Unfortunately, the rATG did not work but I did not have any major side effects so that was a bonus.  Plus now I know what it is like and that it is not that bad, at least for me. I had a fear of getting rATG pretty much as soon as I heard about it pre-transplant, yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming.  Trust me I know from experience God really meant it when he said "DO NOT BE AFRAID". There really is no point it does nothing but get us all worked up, steal our present moments and lock us in a box of fear.  Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up.  And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over .... okay you get the point.  Not being afraid is something I have to constantly remind myself.  My latest mantra is the little bit of the song "don't worry, about a thing, cuz every little thing is gonna be alright" and it is true!

Alright, rant over!  Anyway like I said the rATG did not work. I went back in February only to discover my lung function had dropped a bit more.  This time there was no evidence of infection so the doctors were pretty certain it was from rejection and likely, chronic rejection.  They went ahead and did a treatment called campath.  I had heard about this fun med a few times before, from other transplant recipients and knew that it is a gnarly drug that basically wipes out your immune system for at least a year :O.  But at that point in time my doctors felt that it was my best option and really the only tool in the tool box against my (Joe's? Freddy's?...)lungs.  So at the end of February, I was shot up with the stuff.  And....... it seems to have done the trick. So far I have had one appointment since and everything was stable.  I go back in about two weeks and will see if these lungs are holding out, but until then I go about my life.

Having chronic rejection really has not changed my life much.  There are days where my breathing kinda sucks, a bit like before transplant and I am WAY more tired all the time and I definitely can feel the lack of function when I try to do anything physical, but other than that life is dare I say... normal.  I am working, paying bills, shopping at target... you know all the adult stuff. It is pretty easy to forget that there is a ticking time bomb inside of me.  Honestly apart from the lack of lung function things really are the same as before I got rejection.  Rejection is pretty much a guarantee at some point for us transplant folks and if we do not ever get it, it simply means we died of something else first.  So for me, the biggest difference in having rejection is that I know I have it rather than waiting for it to show up.  I can also work on mentally preparing for a second transplant as that is likely in the nearer future than I would like, but who really knows there are people who live years with rejection (by the way when I refer to rejection in this post I mean chronic rejection or Bronchiolitis Obliterans Syndrom (for those google crazy folks ;P), as it is sometimes called, similar name, but completely different disease than acute rejection).  So I just keep on going.  Waking up each day and living it to the fullest.

This new, or really old, way of life for me has made working a little bit hard. I enjoy my job but I would also love to be off traveling the world and spending time with my family and friends and when I try to live each day to the fullest, being stuck at work kinda does not really fit into that plan.  I am currently working as a behavioral health tech at an independent living site out here in Phoenix. What that means is that I work with people who have mental illness and a history of substance abuse learn to live the life they want.  I would not say it is the most rewarding job ever as I literally have the same conversations with the same people about the same issues day after day after day, but it is nice that I get to have a small part in making someone's life better, and... I have three days off a week!  I am also in the process of starting a new job.  It is with a company called VIPKID and I will be teaching English online to Chinese kids!  The best part, I set my schedule and can teach anywhere where I can get internet access, meaning I can teach and travel.  For now, I am working on building up my client base but I hope to one day make this my fulltime job and have more freedom in my schedule.  If you are interested in signing up or learning more you can use my referral link here ( I do get paid an incentive if you sign up, but I am really just sharing this as I think its a pretty cool way to make some extra money. You do need a degree but that is about the only requirement)  I am very early in the process and have yet to teach an actual student but I have my first real class tonight! Wish me luck!  I'll let you know how it goes.

Besides that, I have been trying not to melt in this ridiculously hot weather here.  You do get used to it and it is true it is more tolerable as it is a dry heat but man is it hot, for instance, yesterday it got up to 115 :O.  The hardest part is it doesn't cool off at night so there literally is no relief. Oh and I'm forced to go out in it to take my puppy to pee, yup I got a dog.  She is very sweet, fairly calm and much more suited to weak lungs and apartment living then pepper was. Her name is Islay (pronounced eye-la).  If you are a scotch fan you might recognize that name :P.  She is psycho and does not seem to mind the heat.  Her talents include jumping on and in everything, like a cat, chasing balls, laying in the middle of the road, being super cute and speaking Spanish!  She definitely brought a needed friendship to my life as I have been pretty sad and lonely out here in the desert.  (Get it, it is a desert for real but also kind of one metaphorically :P)

Well that is about all that is going on with me.  I will try to keep this thing up more regularly!  I hope you all are doing well.  If you have any specific topics you want me to cover, let me know in the comments.

Until next time
Your friendly neighborhood Lemon ;)

P.S. I've been thinking about doing a vlog (that is a video blog for those less techy types) any interest in watching that?  My biggest hurdle currently is how silly I feel talking to myself and a camera!  But we will see I think it could be fun!  Plus it is like all the rage and who am I if not a cutting-edge trend follower :P.

Monday, January 1, 2018

Bunnies and the New Year

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!)