Friday, March 25, 2011

You know you're a lung transplant patient when.....

I got this from The Power of Two's (Ana & Isa's) blog. I hope they don't mind my posting it. :-)

You know you’re a lung transplant patient when:

You have pills, masks and antibacterial hand gel in your pocket or purse <----to quote Meatloaf: Two outta three ain't bad.....(I don't carry masks)
 
Your signature looks like you used an Etch-A-Sketch to sign, because of drug induced tremors <---my handwriting naturually sucks anyway. Glad to know I now have a legitimate excuse! ;-)

You know your creatinine, lung function, white cell count, and prograf level intimately. <---*nods* yep

You talk to your healthcare providers like they are friends (or enemies?). <---more like enemies

You frequently spout out four letter words <----oh-so-true ;-)

Your cough-sniffle radar is on high alert in public places and you run away in hysterical paranoia when someone sneezes or coughs near you <----YES!!!

Your diabetes is a piece of cake compared to everything else you’ve been through <----another "yes"

Any day above ground is a good day <----hahahaha.....very true!

You honor and appreciate your donor family with all your heart (or lungs) <----very much so :-)

You freak out with any fever, wheeze, phlegm, shortness of breath, or pain in your lungs <---totally :-(

You are terrified of children because of their germs <----nope, I just use common sense
 
Your insurance company hates you. <---we have a love/hate relationship

You are an “inspiration”. <----I've been told this **blushes**

You have an excuse to weasel out of the dirty housework and gardening. <----yep, though I DO enjoy cleaning the kitchen

You love the wrinkles you see on your face and welcome every birthday. <----welcome a birthday? of course! the wrinkles? ....not so much ;-)

Your mind wants to do more than your body can. <--sadly true :-(

You keep your hospital in business. <---Yes and I'm not proud of that! :-(

You can drive to your hospital with your eyes closed <----LOL! Not literally but yes my sense of direction IS amazing. :-)

You have felt like hell and hated your body at some point <-----every day

You have felt wonderful and loved your body at some point. <----every day

Sunday, March 20, 2011

Rejection This!

Five years ago tomorrow, I was diagnosed with chronic rejection in my lungs.  For many recipients, especially those who have received a lung transplant, this is an experience that almost as bad as end-stage disease.  In early 2006, I was obese for my height and my lung function was dropping at a fast and sudden rate.  A disasterious biopsy didn't help and my doctors were still stumped. 

After going to Tampa General Hospital on March 20, 2006, for a check-up (and more blood work) and lung function still decreasing the doctors sent me home still confused.  The very next afternoon, my co-ordinator called me and said in an excited voice, "Kim!  We know what's wrong! You're going thru rejection!"  I sarcastically thought to myself, "Great..." but inside, I was devastated and started to beat myself up. 

I was hoping to be one of the first ever heart/double lung transplant recipients who would coast on by, not experincing rejection OR infection.  Alas, that was not meant to be.  Though the next day was my sister's 18th birthday (yes, it's also why I can remember the dates so well) my doctors wanted me back on the transplant floor early the next morning to start IV treatment.  They had me on Solumedrol (via an IV that had to stay in my arm for 4-5 days) and increased my Prednisone--by A LOT.  From 5 mg daily to 40 mg, my body went haywire!  I was now very swollen, very hungry, and a bit of an insomniac!  Not only that, but I was now taken off of Cylosporine and Imuran (two anti rejection drugs) and put on Prograf, Rapamune and Zithromicin (Zithromax). 

After an intense year, I lost weight, was weened off the high Prednisone, adapted to Prograf, Zithromax and Rapamune and....brought my lung function back up to a stable percentage.  :-)

It has been almost five years since that diagnosis.  For some, it can be a grim time; sometimes leading to re-transplantation.  Me?  So far, not so!  I continue to keep my lungs at a stable area and keep on working on my weight. I guess there's not much else for me to say except......













REJECTION THIS!!

Thursday, March 17, 2011

FUTURE BLOG POSTS

Here are the blog posts I've either already started writing or are forming in my mind:

  • Life & Death~yes, it's what you think it's about
  • We're All In This Together~different transplants, but still a family
  • Hi-Ho~Transplant via the work place perspective
  • Body Image~self-explanitory
  • "The Call"~won't be posted until June  ;-)
  • "Did You Know...?"~throughout the month of April
  • Religion/Fath~yes, I'm still working on it
If you can think of any other topics you'd like for me to tackle, PLEASE let me know!!  Thanks!  :-)

Wednesday, March 9, 2011

30 years ago....

Photo of the first successful heart lung transplant being performed by Dr. Bruce Reitz at Stanford University

I'd like to take a moment and reflect on the 30th anniversary of the world's first heart lung transplant. It was performed by Drs. Bruce Reitz and Norman Shumway at Stanford University. The patient was Mary Gohlke, she lived for five years (an amazing accomplishment considering the time), and wrote a book about her experience.

Thank you to those pioneers for without them, I wouldn't be here right now. 
Doing my happy dance, Snoopy-style!


Friday, March 4, 2011

The U.S. Transplant Games--Part 3

Right after I got home from the 2006 U.S. Transplant Games, I sought relief from the swelling I was experiencing in my body.  A member of Team Philadelphia kept on wondering why I wasn’t on a water retention pill.  I remember thinking, what is she talking about?  But when she brought up the drug Lasix something clicked.  I remembered that I had been on that drug immediately post-transplant to balance out the onset side effects of high doses of Prednisone. 
When I got back to Tampa, I contacted my doctors and brought up the medicine and asked if I could be put on it.  My coordinator brushed off my complaints and simply asked me questions like, “are you keeping your legs up?”  I was furious!  I’d had a miserable time in Louisville walking all over the place feeling like a penguin and needed help!  After back and forth phone conversations, my doctor caved in and prescribed the medication.  (Side note: this was the ONLY time I was ever a “brat” patient and I still stand behind my decision of wanting to be placed on that particular medicine.)
Within a few months, I started being able to move my body again but something was still wrong.  I was constantly going to the bathroom, extremely thirsty, and losing weight rapidly. (I certainly didn’t mind that last part at all!)  I would occasionally ask myself DO I have diabetes.   I kept on pushing the thought away; afraid of the possibility that I just might be medically ill.  Though I knew what the classic symptoms were and had a feeling I was showing them, I figured that if I did have diabetes, my doctors would’ve noticed it in my blood.  Let’s just say I wound up being very mistaken…
Not only was I going through a lot of changes medically, my work was also being altered.  In September of 2006 I learned that the Tampa Field Office for my department would be closing the following July.  I had to either find a new job locally or accept the offer of a job transfer—to Tallahassee.  While the thought of moving so far from everything and everyone I’ve ever known frightened me, I secretly looked forward to the possibility of being very independent and on my own.  I applied for whatever state job I could find, went on numerous interviews and I still couldn’t get an offer.  After being able to post-pone the move by a few months, I moved to Florida’s state capital just 11 days before Christmas of 2007.
I was officially on my own but that first year or so of being an independent woman took a toll on me.  I suddenly had bills to pay, keep my place clean on my own, etc.  During that first year in Tallahassee, the 2008 U.S. Transplant Games took place in Pittsburgh, PA, July 11-16.  I’d lost weight and decided to stick with the 1500m race-walk as well as add 3-on-3 co-ed basketball as my events.  I didn’t want to do too much and just wanted to socialize.  On the months leading up to my trip to “Steel City”, I’d joined various transplant-related websites and message boards.  I was re-connecting with people I’d met via the Team Florida MySpace page I’d created as well as meeting new people who said they’d be at the games for the first time.  I was excited at meeting my new friends face-to-face. 

Jen (from Team Illinois) and me.  We "met" via the Team Florida MySpace page I'd created and meeting her was a higlight for me.

Right before I left for Pittsburgh, I sent up a small prayer to my donor, giving her thanks for having another opportunity at competition and making new friends and asked for some help at the events I’d be participating in. 
I arrived with a new packet of business cards (some of my info had changed between 2006 and 2008) and excitement vibrating inside of me.  I also arrived with a bit of an entourage; my parents were coming!
At previous games, I went by myself.  No friends or family to cheer me on and in all honesty, I didn’t mind.  I liked being on my own and having to take care of myself.  Some people were shocked at how independent I was; others seemed to feel sorry for me.  My parents had heard about the games over the years and decided to finally see what it was all about.  I was actually scared!  My parents are coming?!  Invading MY personal space?? I wasn’t too sure how I felt about it.  When they got there (a day or so after me) they came with a surprise: Nana!  Nana had decided to come too!  I was stunned and so happy to see her!
When I went to team practice for basketball, my first thought was what have I gotten myself into?!  I’m so vertically challenged it’s not even funny and I’ve NEVER competed in any type team sport.  OY!  Let’s just say that I ended up being very grateful for that team practice!  I learned to not be afraid of the ball, how to dribble, what type of shooter I am (I’m a lefty!), etc.  It also gave me a chance to get to know more people on Team Florida!  We played against Team Liberty (NYC and Northern NJ) and lost spectacularly but it was still fun being part of a team.
The sun was shining when I went down to the field on the morning of track and field events.  Unfortunately, I did exactly what I told myself not to do: I went too fast, too soon.   In other words, for the first few minutes when I was ahead of everyone in my age group, but I soon ended up being behind a couple of girls and stayed there.  I crossed the finish line third and thought Alright, I’m a bronze chick again. Imagine my shock when the announcer said that the girl who I thought won gold (and crossed the finish line first) was actually in the 17 and under category.  WHAT?!  That meant that I actually wasn’t third—I was second for my age group!  I won the silver!  And the girl who won the gold in our age bracket (18-29) only beat me by 18 seconds!!  I was stunned and so happy!
Laura (from Team Wisconsin) and me with our medals!

Pittsburgh was a dream but it also gave me a bit of a nudge.  During each game, I’d always wonder, Is my donor family here too?  Are they searching for me?  Do they even know that I’m still alive?  Do they even care? While in Pennsylvania, another member of Team Florida met her donor family for the first time—24 years after her liver transplant!  That meeting motivated me. 
Immediately post transplant (barely a month) my parents wrote a thank you letter to my donor family.  We never heard back though in hindsight, I’m guessing it was just too soon for them.  After those 2008 games, I was now wanting to know who my donor was, the family, the story—I was finally ready to know who saved my life and how it all came to be. 
In December of 2008, I mailed off my first thank you letter to my donor family.  I purposely had low expectations; it had been over a decade since their daughter had died and knowing my luck, my letter would most likely bring back painful memories instead of making them happy that a part of their loved one was still living in someone else.  In mid-January of 2009, I heard back from the transplant organization in St. Louis telling me that my letter had been forwarded to my donor family.  Ho hum.  I had vivid dreams about my donor and donor family around that time.  I’d love to know if some of the dreams were right.  I wrote another letter right after the 2010 Transplant Games but alas, never heard back from anyone.
The time between 2008 and 2010 was great.  I was becoming more stable financially (2008 was rough, to say the least), finally making friends in my new town, and going back to church.  I also celebrated a big birthday: the big 3-0!  When getting ready for Madison, Wisconsin (which is where the 2010 U.S. Transplant Games were held), I tried to lose weight to get ready for my events but in all honesty, I kept my expectations low.  Why?  I was now going from being in one of the smallest age bracket to one of the largest.  I knew I didn’t stand a chance at winning a medal so I just went in there looking forward at seeing everyone, making more friends and handing out new business cards.
Somehow, Madison topped Pittsburgh.  The weather was perfect, I was happy at seeing my old friends, ecstatic at meeting my online ones face-to-face, and was just on an emotional (and spiritual) high that whole week.  It’s sometimes hard to come back down to earth! Unfortunately, no one knows where the 2012 games will be held but rumors are definitely swirling.  I hope the NKF tells us soon so that my friends and I can start fundraising and training! 
If you’re post-transplant and have never been to the Games, I highly suggest you attend and meet others who are just like you.  If you’re a donor family and still need healing, please go to these games and meet thousands of people who are grateful for what you’ve done for us.  If you’re a living donor, go and be honored for what you’ve done to save a loved one or total stranger.  If you’re a medical professional, you’ll be reminded why you put your own blood, sweat and tears into caring for people like me.  If you’re simply a supporter, go and cheer on your loved one while they’re showing the world what they can do with this precious gift.  If you don’t fit into any of these categories, just go…..and be amazed. 




UPDATE


Hi All!
Just a quick note to let you know that I haven't fallen off of the face of the earth. I've just been really tired lately due to work (last month's busy-ness is finally catching up with me!).  I have about 3 blog posts drafted, Part 3 regarding the Transplant Games is being written (I'm in "stuck" mode right now) and I have another blog post being formed in my mind as we speak.

Also, I have great things in store.  Remember earlier in the year when I said I'd like to feature either a recipient, donor family, living donor, or someone on the waiting list?  I still mean it!  So please leave me suggestions in the comment box as to who you think I should feature first.  Yourself?  Someone you know?  Let me know who and why you think they should get the spotlight!  

Since April is "National Donate Life Month" I thought it'd be cool to do a daily "Did You Know?"   Every day I could post a little bit of transplant trivia and post it here (and the link on my Facebook) to educate people about transplants and the different organs. 

One last thing: I just thought of another idea.  Maybe I could also feature specific transplant centers.  How long they've been doing transplants?  What their specialties are? Etc.  What do you think?  Is this a good idea or should I nix it?

I LOVE comments and suggestions so keep 'em coming!  ~  Kim, Transplant This! creator   :-)