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.

Seeing the shadow

The time has come to learn my fate for the next 9 weeks and unfortunately they will include three more hospital stays. Yes this cancer groundhog saw it's shadow. The good news is that my cancer is responding to my chemo, just not as much as I had hoped.  Its a bit frustrating because people (especially my mother) sees this as good news.  And it is, especially for them, I'm getting better.  It is not good news in my eyes.  I know I should be happy that I am getting better because it could just as easily be the other way around, but I am mostly disappointed because this whole 5 days in the hospital every 2 weeks has gotten old.  I guess my challenge for the next 9 weeks is to remain positive even though things aren't going my way, they could always be worse.  At least I am improving  and I feel pretty good.  Plus I get to do my chemo in CO so I can actually be at home between treatments.  That's all for now folks!  

The Plane!

Well the move has happened.  I am currently sitting in a bed at Duke no longer looking at the mountains but at dense lush forest.  Yes folks Anna is back in the trees.  I was flown to Duke Tuesday afternoon.  An ambulance picked my mom and I up at the hospital and drove us to the airport (we flew out of centennial airport not DIA)  There we got on the med flight.  It was a tiny little plane, there was a paper inside that I think told about the plane (I never read it) but it was for a learjet so I am guessing that was what we were on.  It was not bad, I actually kind of preferred it to a regular flight.  It was a breeze getting to it and on the flight, no waiting around at the airport and no annoying security.  Plus since I was on a stretcher on the plane I got a great nap!  No wedging up against the window for me!  The flight took a little over 3 hours (same as a commercial flight).  They told us this jet can fly just as high and as fast as commercial planes and it sure did.  We got to Durham around 10.  We landed at the regular airport here and were again taken via ambulance to the hospital.

The whole crew at the airport

On the plane, the part you can't see had two seats one for my mom and the other for our stuff!

Since I have been here it has been more of the same, waiting, for the most part.  I had an endoscopy, where they look at your stomach, and biopsy done yesterday, a PET scan today and will hopefully get a bronch done tomorrow.  The tests aren't too bad so far, except that my appetite has returned again, only they keep not letting me eat!  Oh well it makes it that much better when I finally can.  The plan is, as long as things are still going well, to release me from the hospital tomorrow since I don't really need to be taking up hospital space waiting for results.  So now we just sit and wait around and we know how I do with that.  Bronch results have been like a person waiting to see if they have cancer to me, oh wait that is exactly what we are waiting for this time and it doesn't really feel the same as waiting for bronch results.  To tell you the truth, it is actually easier than waiting for bronch results.  With a bronch they have no idea if you have rejection or not, it can only be identified under the microscope, there isn't a "rejection look" or other signs like there is with cancer.  The docs here are fairly certain it is what I have and are really waiting to find out to what degree rather than if it is cancer or not.  To be honest I am kind of hoping it is cancer, not because I want that don't get me wrong, but cancer would be an answer with a treatment plan, so I could move on.  I would love it if the test shows some other definitive answer that is not cancer but is much simpler to treat, but the docs don't seem to have other ideas that are high up there in possibilities so I can't imagine what that might be.  If the results are negative and don't show something else then who knows the barrage of testing I will have to go through to discover the source of my pain and why I had so little blood. 

As far as possibly having cancer goes, like I have said, we are just waiting to find out and we will go from there.  The good news is the kind they suspect is very treatable and they have seen it a lot and had a lot of successful outcomes, I am sure I am in the right place.  They are guessing it is a type of lymphoma that appears after transplant, usually in the first year or about 10 years down the road.  Why those two times my doc has no idea.  Anyway it is called post transplant lymphoproliferative disorder.  Unfortunately there really isn't a pretty webmd version of what this disease is but apparently it is an over growth of b cells, since my t cells are being attacked by my anti-rejection meds.  The good news is it is usually fully treatable and doesn't tend to come back.  As far as what that treatment will be in my case, we will have to wait for the results and hopefully have some answers next week.  Until then we wait (and eat in the few hours I can each day!)

Thats all for now folks

Prograf and Creamsicles

Hello again blogollowers,

I have returned to the ol' NC.  Wait... before you freak out, everything is fine it is just time for my 3 month check up.  (Can you believe it's been 3 months already, and actually nearly 4, wowzers!). My appoiments and bronch are all over so now we just wait to see if there is any rejection.  If there is I will need to be admitted and treated with the lovely (or so I've heard) RATG.

I was really looking forward to this appointment (that is not sarcastic at all)....(no really it's not!). I have been feeling extremely nauseous for about the past 3 weeks.  I had been communicating with my coordinator through it and the best we could figure was that it was some type of stomach bug and I just needed to wait it out.  Well after 3 weeks of puking, eating only creamsicles and orange juice and 20 pounds less...me, (the results of said 3 weeks) I was really getting tired of it and beginning to wonder if something was really wrong.  Once we met with my doctor and had a slew of tests done we discovered the likely culprit was my prograf.  This is one of my main anti rejection drugs and can cause nausea especially if the dose is too high, which it was, sitting at a bit over 32 when my target level is around 12! My prograf level had been high once before (only for a day). I happened to be at clinic that whole day and got so nauseous by the end I couldn't walk.  Mom had to push me in a wheel chair around, only that made me sick too and she ended up having to go at a snails pace just so I could make it without loosing my cookies (not that I had any left in me by that point).  In both cases a few missed doses and then a smaller daily dose seemed to do the trick.

Anyway through this all I have learned that meds suck and make you feel sick and creamsicles taste really good even when you are nauseous (plus they don't taste too bad on the way back up! ;p )

Oh and cars, nausea, pancakes and one super drugged kid (well technically adult) add up to one VERY messy situation but that is a story for another day.... Maybe tomorrow...well today but I'll save it till the suns out! 

Nighty night!