Tuesday, February 24, 2009

"Me Facts"

As suggested by Christy, at Color Me Healthy, and as many other blogs have followed her suggestion, I have decided to do a post with brief facts about me (some health-related, some not). I'll try not to make it too long, but sometimes in order to understand one thing, you have to explain another :)

So here it goes....

1. My name is Kathryn Marie, but I go by Katey!

2. I was diagnosed with CF at about 1 month old, after having a meconium ellius at birth.

3. I have 1 brother, 2 years younger, who does not have CF.

4. I had a feeding tube (G-tube) placed in February of 1996. I hated eating and my parents basically had to force me to eat. I only kept my G-tube until 1999 due to the discovery of Megace. I was the 1st patient placed on this drug at my CF Center, and it became a miracle drug for me. Food no longer was a major issue.

5. My health was pretty good until about the age of 7. At that time I went in the hospital for my 1st tune-up. It wasn't until the age of 10 that I began going in the hospital 3-4 times a year.

6. I had scoliosis surgery in July of 1999, where my spine was fused and rods were placed on either side. In June of 2004, shortly after transplant, I had surgery to remove the rods due to them protruding through my skin.

7. I graduated high school in 2003 as Valedictorian and #9 in my class of about 240.

8. During spring break of my Senior year in high school (2003), I became very ill, requiring oxygen 24 hours a day and constant antibiotics.

9. I have a huge addiction to marshmallows!!!

10. My family has a lake house and I love to spend as much time down there as possible. I love to water ski and tube!

11. I became listed on the lung transplant at UAB August 1, 2003. It took lots of praying, denial, questions, etc., to agree to be listed. And from that day forward, I had a peace about the whole situation. I never once questioned my decision, never once questioned God, and never worried about it. God had given me a peace, which proved later on to be another blessing.

12. In February of 2004, CF had basically taken over. I had 1 hospital stay the 1st part of February and another the last 2 weeks of February. The 2nd stay I was on 12 liters of O2, morphine aerosols, pain medicine, treatments every 2 hours, and MUCH more! I had also dropped to about 60 lbs (for a 19 year old).At this time, my doctor told my parents I only had days to live. Therefore, my parents moved forward with a living donor transplant. I had this type of transplant due to not receiving cadaver lungs in time. And on a side note...due to how sick I was, I had no idea this was being done....not even a clue!

13. My transplant was performed at USC (University of Southern California), which was the only hospital at the time that was performing living donor lung transplants.

14. Monday, prior to my transplant on Wednesday, my CO2 levels were so high and my O2levels were out of whack, that I don't remember a single thing from that day, even though I was told I had several conversations. My doctor put me on the ventilator that afternoon, and I called my Mom (who at the time was going through tests to be a donor) from PICU to tell her bye!

15. I was flown Tuesday morning by MedJet to California along with my Mom and a family friend, who would be my donors. My Dad, a back-up donor and a family friend flew out a little later that day. Prior to departure that day, my doctor called my parents to tell them I was too unstable to make the flight and they needed to get to the hospital soon, in fear of me not making it.

16. Upon arrival to USC, the decision was made to place me on ECHMO(Extracorporeal Membrane oxygenation), a heart-lung bypass machine. My C02 level was 211 (normal is about 30-40). Yo DON'T live with this high of a level, but God had plans for me. This machine artificially pumps blood through your body. This machine was made for the purpose to use on babies. But this was my only option to make it through until the next morning (the 25th). An artificial lung and heart kept me alive for about 24 hours. ECHMO can cause brain damage and multiple organ damage.

17. By a miracle from God, the surgery was a success and I had no side effects from the ECHMO. My lungs were perfect. From the Monday prior to transplant until 4 days later- Saturday when I woke up from the surgery, I was unaware of anything. I describe this period as God taking me "home" for a few days!

18. A month after my transplant, I had a major intestinal obstruction, and had surgery to remove it.

19. I remained at USC for 2.5 months, and in a nearby hotel for about 2.5 weeks. I returned to Birmingham on May 5, 2005.

20. Because of the severity of my health prior to transplant and being on ECHMO and receiving lots of paralytics, I was completely paralyzed after my transplant. It took me 6 months to learn how to walk again and gain the strength to support myself. I finally was able to walk without the help of anything in August of that year.

21. I started college full-time in January of 2005. I had taken several online classes that summer and fall semester before. I attend University of Montevallo with a major of MIS(Management Information Systems) until Fall of 2006. I transferred to UAB in January of 2007, with a major of HIM (Health Information Management). I will graduate this May with a BS in HIM.

22. In August of 2006, I was diagnosed with chronic rejection of my lungs. I have added multiple meds, immunosuppresants, and infusion therapy to help reverse or stabilize the effects of chronic rejection. Unfortunately, not much has helped. But God has kept me going strong!

23. My current lung function averages in the high 30s/low-mid 40s. This is thought to be due to the Chronic rejection, and also because I have 2 lobes and not actual full-sized lungs.

23. I'm a member of my church's singles ministry and I love to go on retreats and spend time with the Lord. He is my rock and salvation and is the one that got me through this journey and continues to bless me every day! I've always been a Christian, but never have longed for a close relationship with God until he showed us his mercy, grace and power through my transplant journey!

24. After my transplant, I realized one of my purposes (besides spreading the gospel and glorifying God), was to be an advocate for CF. I soon joined the staff of the CF Foundation, which was one of the most rewarding jobs ever!

25. I will start nursing school next May, as long as my health allows! I've always wanted to be a nurse, and I feel that is where God is leading me right now.

26. I have a port-o-cath for the chronic rejection treatments and also because I get pneumonia several times a year which require IV abx. But by another blessing from God, I never had to have a port prior to transplant.

27. I have relatively good sinuses, and had my 1st sinus surgery summer of 2007.

28. I've had one bout of acute rejection, last April, which was cured with IV steroids!

30. And last but not least, tomorrow, February 25th, I will celebrate my 5 yr transplant anniversary and my renewed strength with God. I still face multiple complications, but know God has a reason and plan behind each and every one of them! I will never take anything for granted again, because of having basically been on my death bed! While thanks goes to all my doctors, nurses, friends and family, God is the sole reason I'm alive today!

Ok...so I said it wouldn't be short...but hopefully it wasn't too long for you to read! Sorry!


Tooter's Mommy (Courtney) said...

It is wonderful how positive you are able to remain even when so many problems have been put in front of you!! Keep that positivity - it no doubt keeps you going!

Sarah said...

That wasn't too long. I liked reading it personally. I wanted to tell you I learned a new spine exercise yesterday. Have you ever heard of "The Pelvic Clock?"

The Smithson Family said...

Katey ~ I really enjoyed reading your story. You are amazing! And to think people usually complain about the stress of college...while you are going through so much AND going to college! :)

CFlover said...

So let me just say you have made it to my "hero wall"
You are AMAZING!!!!

Christy said...

Thank you so much for sharing all of that. What an inspiration you are with your positive attitude and quest for life!

I had no idea you were going to start nursing school. I wish you the best!! :)

Curious about your comment on USC being the only one doing lobar transplants in 2004. Had Duke stopped doing them at that time? I only met 2 others at Duke who got them, but I do know at one time.. a couple of years ago, I heard there had been 9 of us adults. It was weird.. most of the 9 had died from other things like cervical cancer and other things not related to the lungs. I think Barnes Jewish (the children's hospital) has been doing them a long time on children, but not adults.

Katelyn said...

Wow. All I can say is Wow! AND I'm glad we're friends. You are amazing!

Somer Love said...

Wow! I loved this post I didn't know all of this thanks for sharing it!

Happy 5 year anniversary! That is SO awesome!

65 Roses for Marcia said...

Katey,you truly are wise beyond your years,but you have also been through so much more than most people your age.I love how you give God all the glory:)Happy 5 year anniversary today!

Carrie said...

Wow Katey...you have been through it girl!! All of you older cf'ers are such an inspiration. Your strength and positive outlook are just amazing. All I can think of is...WOW!!!