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.

1 comment:

  1. The heat ain't that bad... Glad to hear that your not letting rejection stop you from having fun!