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!

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