Sunday, August 2, 2015

The roller coaster of life called transplant

I've passed the 9mos mark since my transplant and the 1yr lungaversary is just around the corner. My 40th bday is days away (gulp) and I can't help but reminisce about this past year.
Before you are transplanted the team warns you about various probable setbacks that occur after transplant.  When you hear those things, I thought those sound horrible but doable-I can't breathe anymore-what could be worse?!?! I was told by the social worker before transplant that 'everyone rejects in their first year', I still remember that and I'm just waiting for that to HIT me one day. But then I realize just because she said it doesn't mean its going to happen. She is nice and wonderful but she cannot predict the future. She doesn't hold my future in her hands.
The last 9 1/2 mos have been a major roller coaster rider with the last 2 mos more smoother.  When I think back to that call that came on a beautiful sunny mild afternoon in October it makes me emotional.  All my docs pre-transplant said I would do great and I believed them but I forgot they don't my future either and what happened post-op was definitely not great. Chest tubes weren't coming out or if they did my lung would collapse and I had to go back for another, my CXR on the right still looked funny. I wasn't able to get back to GR, MI as soon as I thought I would. And just when I was feeling stronger and getting semi-used to all the meds I was being pumped full of (and my eyes were back to normal after seeing squiggles on the walls and peoples pants from the huge amounts of steroids), I was told I had to go back to surgery and reopen the right side of my lung so the RLL could be removed and a muscle flap could take its place. That was devastating-I'm crying right now thinking about it. When I first saw that wound (on top of the original that stretches armpit to armpit) on the right I cried. I have a indentation where ribs were taken out and I thought I looked like a mutant. Looking at it now still upsets me.
I finally got to come home days before Thanksgiving with 2 chest tubes, somehow one fell out a week later and I ended back inpatient at the local hospital Butterworth.
I continued to battle the nasty ever changing bacteria pseudomonas--this was found on numerous bronchs during my hospital stays and I had to stay on IV antibiotics until this past Feb (4mos). I then developed a nasty colon infection that occurs from antibiotic use called c-diff early March. I haven't had a normal bowel movement since before transplant.
In June, my bronch grew out some rare fungus and worry again ensued my transplant team. We are still watching this closely but thankfully after much more testing things look stable.
You are warned pre-transplant about all these possibilities but nothing could ever prepare you. I am certain I have some post traumatic stress from my experiences from last fall-I didn't mention it up there but when you are awake with a tube down your throat it is the most AWFUL experience and I've made it clear to many around me don't ever want to be intubated again.
I could also go into the ICU psychosis that develops post op from the meds, shock to your body, and severe lack of sleep. Greg has good stories he's keeping.
The point being not only do I have a healthy fear of hair, now I am paranoid about catching any germ, bacteria, fungus, allergen, etc. I walk in anywhere and can hear the cough/sneeze 3 aisles down, 10 booths away--those with me don't hear it but its like I have Bat ears--the sonar always working.
 I don't want to have acute rejection and be pumped full of high dose steroids and potentially lose the precious lung function I 'm working so hard to gain. That's the other thing--when you have 2 healthy lungs and God forbid you do have rejection and lose some you usually have something to work with. I don't have a lot of wiggle room with Charlie (my left lung) and I haven't named my remaining healthy right upper lobe. (Suggestions welcome)

So thanks to all your prayers and support currently I'm doing good besides the paranoia that I'm working on.  I also want to encourage you to take care of yourselves. Do you worry about what you put in your mouth--was that vegetable cleaned? Is the meat cooked thru? That's part of my life now, it is was it is but just be aware.  Also, I find it very disheartening when able bodied people don't take care of themselves. There is nothing physically wrong with you and you don't exercise because you don't want to ? Its too boring? REALLY?!!! S*@*@*#*@#*@ How lucky you are to have that choice and shame on you for not treating that body like the well oiled machine it is. I hate sweating and I've never sweated like I do now, and I can honestly say that exercising is not some great fun activity for me.  I've heard all the excuses-but there is always something you can do positive for your body--can't run or walk-then bike-don't have access to a bike-do chair exercises-walk up 3 stairs a few times a day-DO SOMETHING. You don't have to agree with my opinion, that's fine. I have a responsibility to these lungs to take care of them, as well as to my family so I can be here for them.
These lungs of mine--given to me by someone's grieving family--think hard about is almost an impossible concept to wrap one's mind around. Someone has died so I could benefit.
Thank you letter next on my list to my donors family, how difficult...

The roller coaster is taking off again--hang on tight!

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