You've gotta have FAITH!!

When I was 16, I just knew I'd get my transplant in time.  I didn't think God would so something stupid and le me die after going through so much.  The 31 year old "talking" to you is scratching her head wondering how that teenager found the faith, courage, and confidence to believe in a Higher Being.

When I was a kid, I LOVED listening to this Saturday morning radio show, Kids Kingdom. I liked the music (some religious, some from old Disney films) and they would insert various biblical lessons throughout the program.  My sister and I enjoyed it so much that our parents would record it off of the radio and then play it during long family road trips during the summer.  Also, during the school year I would attend CCD (Confraternity of Christian Doctrine) classes at my parish center.  In laymen terms, CCD classes are where I'd learn basic teachings of the Catholic Church. 



I still remember The Prodigal Son and it's because of those CCD classes.  Also, I went to CCD to receive the sacraments of the Church: Reconciliation (yup, the infamous "confession" thing that Catholics are known for and I'm still bad at going) and First Holy Communion.  After my elementary years, I then graduated to youth group.  The lessons were getting harder and were prepairing me for Confirmation (which I would receive in high school) yet the environment  as a whole was a bit more relaxed.  Our youth leader (Kevin) knew that we were in our adolescence and needed fun church-related games as well as nothing-to-do-with church activities.  (The lock-in at the parish center when I was in 6th grade comes to mind. :-))  I enjoyed youth group but when I was in 8th grade something happened--Kevin changed parishes.  Many of us were very sad at this news.

The new leader for our youth group was someone I had known for a long time; in fact, I was friends with two of her daughters.  Unfortunately, youth group was no longer "fun" and the people in my group just went through the motions. 

Also around that time I was asking myself the all important questions but from a slightly different angle: Why am I here?  Why was I born with so many health problems?  What did I do to deserve this?  Am I being punished?

So with a bad combo of slowly deteriorating health and now boring youth group you now had a 15 year old girl who was very much questioning her faith and why she was even on this Earth.

Around the time of Easter of 1996 my family and me went to a church's production of Jesus' life leading up to Easter Sunday.  Many scenes featured Jesus's miracles (turning water into wine, the leper is clean, casting out the devil in a blind and dumb man, etc.) and it was in that moment that I was overcome with emotion and thought 'Okay, God and Jesus MUST have a purpose for me--but what is it?!'  In a way, I think that belief helped me during those last few months pre-transplant.

By the time we moved to St. Louis in mid-April I knew that I needed the transplant but I was still scared.  By late May/early June I thought, How long do I have to wait?! and wanted to throw the beeper up against the wall.   I was just sick and tired of BEING sick and tired.

During the late hours of June 13th, while driving to the hospital, I had some last minute fears. Dad assured me that I wouldn't have gotten beeped if God didn't think it was my time.  This helped put me at ease.  The moment that I walked through the door, I was ready for whatever was in store.  We had two pictures taken of the five of us right before I was wheeled into the O.R.; I was the only one smiling.  I just KNEW God/Jesus/my donor/SOMEONE was watching over me.  Also, it turned out I was receiving my transplant the Feast of the Sacred Heart!  Seriously! Feast of the Sacred Heart is a religious devotion to Jesus' physical heart as the representation of His divine love for Humanity.  (Description from Wikipedia)

 

 

During my late teens/early 20s we had some changes within the parish I attended--mainly, a new priest that I REALLY didn't like.  He started trying to do things differently and for some reason, that shook me and turned me off from the church for a while.  Oh I still attended but I only went through the motions. 

When I moved to Tallahassee in December 2007 I was in a bad place spiritually.  I had lost many transplant friends, had gone through a bad case of chronic rejection less than two years ago, and was just angry at God in general.

Fast forward over two years later I thought, You know what?  Maybe I could start going back to church again. After going online to Google I found out that the closest church was about a 15 minute walk for me.

Okay.....I can do this.  I walked and did the sign of the cross like always and started going through the choral mistal.  I then went through the misalette, remembering the stories I had learned when I went to CCD.

I liked the church but it wasn't until this past Spring I took a giant step~I attended a CRHP (pronounced 'chirp') weekend.  CRHP stands for Christ Renews His Parish.  I'd heard about these weekends a couple of times every six months during mass but I never went.  In March, I approached the sign up sheet.  Afterwards I thought what have I gotten into?! but as soon as I walked through the doors of the retreat, I knew I'd be okay.

I met many women from different backgrounds, ages, life experiences, etc. but we all shared the same common faith.  I was learning a lot more about my Catholic faith (still am!) after that weekend I knew I had to be apart of it.  I now attend weekly CRHP meetings in preperation for the next retreat (which is in September) and for my witness which is (approporiately) New Life in Christ.   :-)

I'M NOT DEAD!!!



I'm sooooo sorry I haven't posted in almost two months.  Unfortunately, for these nearly two months, I've been in a bad funk.  I swear, I'll post ALL of my "Transplantation Education" here soon (HOPEFULLY later today).   Funny enough, I posted them EVERY DAY during the month of April....I just forgot to post them here too.  OOPS!!

Anyway, I'm cyber-back and sadly, have lost some transplant friends since them.  Interestingly, their deaths have inspired a blog post in me.  I hope to post about it during either June or July.

And I have a totally awesome blog post coming in a couple of weeks regarding my "transplant birthday" which I'll be celebrating in 15 days!!  WOO HOO!!

Hugs and Love to my followers   :-)

APRIL IS NATIONAL DONATE LIFE MONTH!

Here is my first "Did you know?"

DID YOU KNOW.....

that as of 5:45 a.m. (EDT) there are 110,605 people on the national waiting list?  That's 88,112 for a kidney, 1,380 for a pancreas, 2,232 for kidney/pancreas combo, 16,154 waiting for a liver, 264 for an intestine, 3,168 for a heart, 1,754 for lungs (single or double), and 65 waiting for heart/lung combo.

Those may look like just numbers to you but they're not.  They're PEOPLE!  Remember: 15 years ago I was part of that number!

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

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!!

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!  :-)

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!