Tuesday, July 29, 2008

Well, it's a little easier to write a post thanks to my husband. My laptop went on the fritz about a month ago. Wouldn't start up at all, just gave me an error message on a blue screen. Apparently, my cute, little laptop didn't come with enough memory to run a diagnostic and fix whatever problem it had, so my husband put in a few more gigabytes of memory. And erased my computer. Which was necessary, but still. Fortunately, the great American novel is still in my head and so wasn't effected.

Work is going ok-I still like the job. I have people thanking me for being their coordinator, which is nice. I have people asking me if they can switch over to me from the other coordinator (we split the alphabet) which is nicer. I can't help it if I'm nice and return phone calls mostly on time. Doggonit, I'm nice and people like me.

I did have one downer moment today. I received a call from an OPO last night, their donor family wanted an update on the recipient who was transplanted a few years ago. I'm only allowed to give basic info, like-they're still alive and the kidney's ok. So I called the person up and asked if they wanted to give any more info to the family. Apparently, they're having a hard time on the medications, they're not feeling well, they've developed side effects and probably "wouldn't recommend anyone to get a kidney." So no, they don't want to get in touch with the donor family. But they're thankful.

I can't imagine that it's worse than dialysis, but then I haven't gone through either. My biggest surgery was getting my appendix out and I balk at taking more than one fish oil tablet a day. One the other hand, I spoke with a person who'd been a living donor today, and she was so excited because for the first time in a long time her whole family was together, including her recipient. No surgery works out exactly the same for everyone and I guess transplant is no different. I like to hear the stories that people are going about enjoying their lives. It doesn't work out that way for everyone. Some have complications and I think for some it just wasn't what they were expecting.

I read somewhere that people given a chronic disease diagnosis usually find it easy to stick with their regimen for one year, then the compliance issues begin. I don't know if that's true, but I'd love to hear from you folks. I know it's hard also for kids to stay the course when they become teenagers. First, because hormones throw everything into turmoil and then add to that rebellion mixed with a bit of "it won't happen to me". I'd love to work with teenagers who need/have transplants.

On a side note, to all you F&F out there-Poot is asleep at this moment and I get to spend some quality alone time!! So I'm off to surf the innernets before she realizes I'm no longer sleeping next to her.

4 comments:

BreathinSteven said...

Hey Beautiful Lady...

I'm sorry about your downer moment... With all of your medical experience, you'd think you would understand this game -- as you mentioned, one might not imagine it could be worse than dialysis -- but I think that possibility exists... And I'm not sure you can be on your end of the stethescope to completely understand...

Maybe it's not even a matter of being as bad as dialysis -- but maybe the combination of problems, along with dashed expectations, makes it seem worse than dialysis. (Though I know that it likely can be worse than dialysis...)

Sometimes I think I had an advantage -- I struggled all of my life -- just under 40 years... But I didn't know I was struggling -- even when it got progressively worse... That simply WAS life for me. ('cept when I got really bad and was coughing blood and sucking O2 -- I knew then that I was struggling...) But TC, this is so freakingly beyong my wildest expectations -- this is so freaking amazing that it blows my mind... Every single day. Maybe it's so much more awesomer because of my almost-40 years without understanding what this felt like... Maybe I've just always had a precious view on life, and this is like that precious view on crack... (assuming crack is a good feeling, because I've never had it...)

But we all don't have similar experiences -- my recovery was incredible... I had my bumps, but all in all they were small -- and I was accustomed to HUGE bumps, so they were kinda-nothin... And I lived almost-40 years with a routine of pills and medications and sometimes side effects. This was all really more of the same. (Though some of the side effects can be a total b*tch...)

It's been over eight years -- I haven't missed a dose of my immunosuppressants -- I'm kinda compliant about that... I've been 6-7 hours late either 2 or 3 times, but then I anally juggled my meds around for 4-5 days to get back on the right schedule...

But some people have a rough journey -- whether kidneys, lungs, hearts, livers or varietal other parts and combinations... I'm still very involved with my hospital's lung transplant support group -- I'm a major cheerleader for people going through this -- I've seen very-very bad cases, several who didn't survive -- I've seen a lot of medium cases who really struggled from time to time for 6-12 months -- I've only seen one person who recovered like me, Lizzy... I've blogged about her and I miss her dearly -- she had almost five years...

Some people have reactions to the Prograf or prednisone or Cellcept or the dozen other meds that are truly pure hell... (I'm on 18 meds right now, but I'm getting along with most of them...) Imagine being nauseous for 4-5-6 months, or having the trots for as many or more months... Some are dealing with raging headaches / migranes...

Then there is the "R" word -- it's as scary or scarier than the "C" word (cancer, not the other one...) The fear of dealing with regular biopsies and finding you're in rejection -- maybe multiple times... I sometimes think that's scarier with lungs or hearts or livers -- but what if it were a gift from your spouse or sister, and you're rejecting their gift?!?! Was it your fault?!? Did you eff up a few doses one time or other? Sometimes there is a lot of stress in this game...

And then you might have CMV and EBV and PTLD and OMG-WTF looming too...

I probably agree with you for many people and their chronic disease diagnosis, sticking with their regimine for one year -- you can start to get lax -- I'm lax in other ways and wish I wasn't... I think maybe living your entire life with a chronic disease may shade things differently, but not even always -- sometimes we're given this incredible gift that frees us from freakin' everything we knew that was troubling us, yet really not-so-much...

And teens -- good luck with that... You're already the proud owner of one (and I use the "owner" term loosely) so you know that can be rebellion mixed with anarchy...

Like it hurt you today -- hearing something like that hurts me too... I know they're thankful to their donor family, and it's probably not fair (and they probably know it) not to recommend this to anyone -- but I'm sure there is a huge element of "why is this happening to me" over and over...

Sometimes I think it's a freakin' numbers game... For lungs, 80% of us survive a year... and sometimes we forget that 20% don't... Still -- a lot more end up staying on the right side of the grass...

I'm glad you still like the job -- I guess this means you decided to stay and I think that this field is what you were made for, in one way, shape or form... It's how I met you and I'm glad I met you... Would that suck for both of us if we never did?!?!

I'm going to bed... I'm glad your'e alive, TC... I'm glad I'm alive too -- I'm glad I know the girl who saved my life... Her smile is on my mind and in my heart always... But you know that...

Love,

Steve

BreathinSteven said...

Hey!!! My note is longer than your post... Slacker...

Love,

Steve

p.s. Laura was just telling a friend how I love to hear myself talk... God, I know how to marry them smart!!!

Ashley said...

Hi TC...I just found your blog a few days ago. I was searching Transplant Coordinator on Google and somehow got to your blog! I am so glad I did too. I am not currently in the medical field, but I feel I am suppose to be. I am only 2 classes short of applying to nursing school. However once I’m done I wasn’t sure exactly what I wanted to do. I have been watching Hopkins and they do a lot of Transplant stories. Before watching the show I wasn’t familiar with how the transplant process works. I have always been a huge supporter of organ donation but never knew someone other than a trainer surgeon could have a career in this area. So now that I know TC's exist I am trying to learn everything I can about them so by finding your blog and reading about your experiences has just been amazing for me...so thank you!! I know I know short story LONG :)..but just wanted you to know your blog has given me a inside look into something I truly feel I might be meant to do. I could ask you a million questions..but I'll save them for another day :)>. Thanks again!

BreathinSteven said...

You GO, Ashley!!!

I've been taken care of by medical folks all of my life -- often they become like family... My nurse coordinator cares deeply for me -- I freakin' adore both of my procurement nurses -- I was at one of their weddings!

There is something very special about transplant -- and there are so very many players... It seems the medicine is about helping people live -- transplant seems like a double serving of that... You're also helping deliver a gift of life from one person and family to another, and helping maintain it...

I hope you've found your passion... It's a cool passion...

Love,

Steve