Recap: About Me Part IV-Final Post

Here is the About Me Part IV Recap and final post!

It was Sunday night before the transplant. I was really sick, and didn't know much of what was going on around me. I remember my Dad and brother coming up to see me that night, but that was it. I don't remember anything from that point forward. Evidently, the decision was made to precede with the living donor transplant. Although my parents claim they told me about it, I have no memory of that and seriously had no idea I was about to be transplanted. I think this was another blessing from God, as I didn't have to worry or experience anxiety like most everyone else would before a major surgery like this. God held my hand through this and took all the pain away. The doctors "gave" me just a few days to live, so in order to save my life, this is what had to be done. On Monday, things kept getting worse, and my CF doctor decided that I needed to go ahead and be put on the ventilator. The transplant was scheduled for Wednesday morning at the University of Southern California in Los Angeles. I would fly by MedJet Tuesday morning along with my Mom and my other donor. My Dad would fly out there with our back-up donor, and my donor's brother, would fly out as well.

On Monday, my mom and my other donor had to undergo numerous tests at UAB, so a nurse and close friend stayed with me Monday. My CF doctor came in to discuss putting me on the ventilator and told me that about 50% of CF patients who go on the ventilator are not able to come back off of it. My response to that (as I was told...remember I have no recollection of this)was "That means that 50% DO come off of it, right?). I held my CF Dr's hand as they took me down to ICU and prepared me for the ventilator. My Dr. let me use his cell phone (or someones..not sure who's it was) to call my Mom, who was at UAB at this time. My Dad was preparing for the trip to California (there was a lot that needed to be arranged). I called my Mom and told her "Bye" and that I would see her soon with my new lungs. My Mom said she could hardly hold herself up at that time, being away from me, and knowing that there was a pretty good chance of me not making it through the night.

Tuesday morning came along, and the doctors called my parents early that morning. The plan was for everyone to meet at the airport, but plans changed. They didn't think I was going to be stable enough to transport. My CO2 level had already risen to about 4 times normal and things didn't look good. My Dad told me the weather was horrible that morning too. My Dad called one of our friends, who is also my parents Sunday school teacher. My Dad told him to just pray, pray. This guy, when he got off the phone, called everyone he could and told them to pray. Within 10 minutes of of my Dad making that phone call, by the grace of God, things began to stabilize enough and my Dad said that I had never looked so peaceful as I did that morning. At that moment, he knew everything would be ok.

Upon arrival at USC, I was immediately sent to the ICU. Mom and my other donor had to do some more tests to prepare for the next morning. Shortly after arrival at USC, I began to deteriorate and one of the Transplant Nurse Coordinators tracked down my Mom and told her that the only way I was going to live until morning, was to be placed on ECHMO, which is a heart-lung bypass machine. This machine performed every bodily function for me. At this time, my CO2 level was 5 times normal (211). A person with this high of a CO2 level does not live. A normal CO2 level is between 35 and 40. God helped me hold on until the next morning, February 25th, 2004, and the transplant was a huge success. I was told my lungs crumbled into pieces as they were removed from my body. The surgery definitely had it's worries and concerns. Imagine from my Dad's point of view: his wife, daughter, and best friend all in surgery at the same time, and are running the risk of loosing their lives as well because of the risky surgery. But again, by the Grace of God, everything went smoothly. I made it through the surgery with "flying colors" but I wasn't out of the woods yet. The transplant team expected me to have brain damage, kidney damage, etc., because of the record CO2 level and being placed on ECHMO. Once again, God had a plan for me, and I didn't incur any of those complications.

The recovery process at USC was the most intense and painful experience, both mentally and physically. I stayed on the ventilator for about 4 more days after surgery. As soon as they took the breathing tube out, I realized I could BREATHE...one of the most awesome feelings EVER for a CF patient. Because I was so sick and weak prior to transplant, and with the addition of paralytic drugs, I was completely paralyzed afterwards. I couldn't move any part of my body by myself. This was the most frustrating thing, as I depended on everyone to do everything for me. My arms were so swollen and filled with fluid, they were too heavy for me to lift them up on my own (same goes for the feet/legs). About 2 weeks after transplant, I began to experience stomach issues. I ended up having an intestinal blockage, which required immediate surgery. This was performed about 1 month after the transplant, and in my opinion, was some of the worst pain ever experienced, even more than the transplant.

Because I was paralyzed, I had to re-learn how to walk again (yes..not just strength but even the technique of walking). It was 6 months later (in August) that I was actually able to walk on my own, without the help of a walker or wheelchair. It wasn't until October of that year that I began to drive again. It also took a long time before I could feed or bathe myself. Because of the lengthy and painful recovery process it was hard for me to realize I was improving. But I did, each and every day. We had millions of people praying for us, and an awesome team of surgeons, doctors, physical therapists, etc. at USC. I didn't think it was possible for me to walk again. But then again, God proved me wrong.

I spent 3 months in California, before returning home to Birmingham. I missed every one at home so so much, especially my brother. It was a truly hard experience but I wouldn't trade it for anything. And if you don't call this a miracle from God, then I'm not sure how you explain it. I truly am a miracle from God and are alive today to share this with others and continue to glorify him in everything I do. As of right now, I was the sickest patient USC has ever transplanted, and had a record CO2 level that anyone at USC, Children's and UAB had ever seen.

Currently, I'm doing pretty well. I have had my share of post-transplant complications in addition to several other things. But transplant complications are so much different that what CF patients experience, and in my opinion, are far easier to deal with.

"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!

Dad's Journal Entry #1

(Remember these are very brief as a LOT of stuff had to happen prior to transport to California. And my Dad was unable to fly with us out there on the MedJet).

February 23, 2004: "Had to put Katey on the Ventilator today. Went to see her at 8:00 p.m." This was the Monday prior to transplant. I had become progressively worse, and needed to be put on the ventilator in order to make it to transplant. During this time, my Mom was over at an adjacent hospital completing the testing, and my Dad was at home arranging a million of things. I had a favorite nurse stay with me that day. That afternoon, my doctor came in and asked for my permission to put me on the ventilator. I have no recollection of this, but evidently i gave him permission. But the neat part about it is this: Ok, all dr's have to explain associated risks, etc. So my doctor told me that 50% of CF patients that go on a ventilator never come off. And my response was, But that means that half do, right? So there it was. The hard part was that my parents weren't there and I had to call my mom from the ICU right before I was placed on the vent. Imagine that and not knowing if you or from my mom's perspective, your daughter, if you will wake up. Again, I have no recollection of this and have never had since the day I woke up from transplant.

February 24th: (Tuesday morning- lift off day). "The Dr. called at 5:25 A.M. and said that Katey was worse. Mucous was bad and C02 was horrible. Can't transport at this time. I (my Dad) called David (our back up donor) and asked him to pray. Dr. called back in 15 minutes and said Katey was ok now and to come on to the hospital. Miracles! Dr. on the plane was a friend of Jane/Fred (my aunt and uncle). Respiratory Therapist on the plane was a long-time friend of ours. Miracles!!" Pretty amazing..huh? If you haven't read my "about me" profile, my CO2 had risen to about 4 times normal at this time, and my lungs were pretty much non-existent. But because of God's wonderful grace and prayers, I was able to be transported. And having 2 "friends" on the flight was able to calm my mom and Jeff's nerves quite a bit!

About Me...Part IV and Final Post

It was Sunday night before the transplant. I was really sick, and didn't know much of what was going on around me. I remember my Dad and brother coming up to see me that night, but that was it. I don't remember anything from that point forward. Evidently, the decision was made to precede with the living donor transplant. Although my parents claim they told me about it, I have no memory of that and seriously had no idea I was about to be transplanted. I think this was another blessing from God, as I didn't have to worry or experience anxiety like most everyone would before a major surgery like this. God held my hand through this and took all the pain away. The doctors "gave" me just a few days to live, so in order to save my life, this is what had to be done. On Monday, things kept getting worse, and my CF doctor decided that I needed to go ahead and be put on the ventilator. The transplant was scheduled for Wednesday morning at the University of Southern California in Los Angeles. I would fly by MedJet Tuesday morning along with my Mom and my other donor. My Dad would fly out there with our back-up donor, and my donor's brother, would fly out as well.

On Monday, my mom and my other donor had to undergo numerous tests at UAB, so a nurse and close friend stayed with me Monday. My CF doctor came in to discuss putting me on the ventilator and told me that about 50% of CF patients who go on the ventilator are not able to come back off of it. My response to that (as I was told...remember I have no recollection of this)was "That means that 50% DO come off of it, right?). I held my CF Dr's hand as they took me down to ICU and prepared me for the ventilator. My Dr. let me use his cell phone (or someones..not sure who's it was) to call my Mom, who was at UAB at this time. My Dad was preparing for the trip to California (there was a lot that needed to be arranged). I called my Mom and told her "Bye" and that I would see her soon with my new lungs. My Mom said she could hardly hold herself up at that time, being away from me, and knowing that there was a pretty good chance of me not making it through the night.

Tuesday morning came along, and the doctors called my parents early that morning. The plan was for everyone to meet at the airport, but plans changed. They didn't think I was going to be stable enough to transport. My CO2 level had already risen to about 4 times normal and things didn't look good. By the grace of God, things began to stabilize enough and my Dad said that I had never looked so peaceful as I did that morning. At that moment, he knew everything would be ok.

Upon arrival at USC, I was immediately sent to the ICU. Mom and my other donor had to do some more tests to prepare for the next morning. Shortly after arrival at USC, I began to deteriorate and one of the Transplant Nurse Coordinators tracked down my Mom and told her that the only way I was going to live until morning, was to be placed on ECHMO, which is a heart-lung bypass machine. This machine performed every bodily function for me. At this time, my CO2 level was 5 times normal (211). A person with this high of a CO2 level does not live. God helped me hold on until the next morning, February 25th, 2004, and the transplant was a huge success. I was told my lungs crumbled into pieces as they were removed from my body. The surgery definitely had it's worries and concerns. Imagine from my Dad's point of view: his wife, daughter, and best friend all in surgery at the same time, and are running the risk of loosing their lives as well because of the risky surgery. But again, by the Grace of God, everything went smoothly. I made it through the surgery with "flying colors" but I wasn't out of the woods yet. The transplant team expected me to have brain damage, kidney damage, etc., because of the record CO2 level and being placed on ECHMO. Once again, God had a plan for me, and I didn't incur any of those complications.

The recovery process at USC was the most intense and painful experience, both mentally and physically. I stayed on the ventilator for about 4 more days after surgery. As soon as they took the breathing tube out, I realized I could BREATHE...one of the most awesome feelings EVER for a CF patient. Because I was so sick and weak prior to transplant, and with the addition of paralytic drugs, I was completely paralyzed afterwards. I couldn't move any part of my body by myself. This was the most frustrating thing, as I depended on everyone to do everything for me. My arms were so swollen and filled with fluid, they were too heavy for me to lift them up on my own (same goes for the feet/legs). About 2 weeks after transplant, I began to experience stomach issues. I ended up having an intestinal blockage, which required immediate surgery. This was performed about 1 month after the transplant, and in my opinion, was some of the worst pain ever experienced, even more than the transplant.

Because I was paralyzed, I had to re-learn how to walk again (yes..not just strength but even the technique of walking). It took a long time before I could feed or bathe myself. Because of the lengthy and painful recovery process it was hard for me to realize I was improving. But I did, each and every day. We had millions of people praying for us, and an awesome team of surgeons, doctors, physical therapists, etc. at USC. I didn't think it was possible for me to walk again. But then again, God proved me wrong.

I spent 3 months in California, before returning home to Birmingham. I missed every one at home so so much, especially my brother. It was a truly hard experience but I wouldn't trade it for anything. And if you don't call this a miracle from God, then I'm not sure how you explain it. I truly am a miracle from God and are alive today to share this with others and continue to glorify him in everything I do. As of right now, I was the sickest patient USC has ever transplanted, and had a record CO2 level that anyone at USC, Children's and UAB had ever seen.

Currently, I'm doing pretty well. I have had my share of post-transplant complications in addition to several other things. But transplant complications are so much different that what CF patients experience, and in my opinion, are far easier to deal with. I will post about some of those issues with the next day or so.

What is a living donor double lung transplant?

Some people have asked me what a living donor lung transplant is and how it works. Keep in mind, that this type of transplant is extremely rare and only about 100-200 have been performed ever in the U.S./World. This type of transplant is usually for those who have been waiting on a list for cadaver lungs for a VERY LONG TIME. In addition, the recipient must be pretty sick and not able to withstand the wait for cadaver lungs. For me, I had "acquired" about 2 1/2 yrs of time on the list, but had not received any possible cadaver lungs. I'm very petite, and had a rare blood type. I became progressively sick, and were given days if not hours to live. I was placed on a ventilator and my CO2 level was rising very fast. My parents decided to move forward with a living donor transplant, with hopes of it being successful.

With this type of transplant, you must have 2 very healthy donors. Typically at least one of them is related to you. For me, it was my mom and a family friend. They undergo extensive testing, almost just as much as the recipient does. The surgeons take one lobe from each person. Remember, your right lung has 3 lobes, and your left has 2 lobes. The lobes do not regenerate in the donor, but a person can live with 1 lobe of a lung. The lobes in the transplant recipient (me), eventually fill the entire space, where once my old lungs resided. According to UNOS, and other organizations, living donor lung transplant tend to have a higher success rate because your donors are better tissue matches, than cadaver donors. However, it does vary from person to person. For me, I've had acute rejection, chronic rejection and usually get pneumonia 3 times a year. Each time I get pneumonia as well the one time I had acute rejection, it has been in the family friend's lung and not my Mom's. (Just a little interesting piece of info). Since UNOS has changed the guidelines for lung transplantation listing, there have not been any living donor lung transplants performed since 2004 (as far as I know). It's a major decision and one that's not taken lightly. But it is an option people with end-stage lung disease, such as CF, should be aware of, in case cadaver lungs become hard to get. Click on the below link for more information. If anyone has any questions, please feel free to ask.

http://www.cts.usc.edu/livingrelatedlungtransplantation.html