Recap: About Me-Part IV-Final Post

Picking up from the previous post: About Me-Part III......here is Part IV-the 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, who was also a 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 (our back-up donor), who was 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.

I graduated from UAB in May of 2009 with a Bachelor of Science degree in Health Information Management. After graduation, i decided I wanted to go back to nursing school. I am currently in my 2nd semester of nursing school at UAB, and will graduate May of next year (2012). I received a full-academic scholarship, which was only awarded to 2 people in the program. It's a blessing that I'm able to pursue my life long dream career of becoming a nurse. Nursing school is stressful, but exciting at the same time.

So...that wraps up the Recap posts: About Me. I hope this was informative for my new readers/blog followers!

Recap: About Me-Part III

Picking off from: Recap About Me--Part II (Previous Post)

So right before I left the hospital, my CF doctor came to my room to talk to my Mother and me. I kind of had an idea of what it would be about, but didn't want to think about it. My doctor felt that I needed to be listed for a lung transplant; that there was no "bouncing back" from this and a transplant would be the only option to save my life. I denied it of course, went home, and concentrated on finishing up the school year. By the grace of God, I finished up most of the remaining school year at home, and graduated as Valedictorian with a 4.12 GPA. Graduation night was tough and not very fun. As soon as it was over, I went home, aching for the O2.

As I realized I was not getting better, I began to pray and ask God, was this what needed to be done? I cried and fought with him, hoping there was another way. I kept asking him, why me, why now? I then realized that a transplant was the only thing that was going to save my life, and God would get me through this. I immediately jumped on the decision and got evaluated and listed at the University of Alabama at Birmingham. Because I had been listed as a pediatric patient (see previous post), I had already accumulated about 2 years worth of time on the list. The thought was that I would get transplanted sooner than later, and everything would be fine.

However, that was not God's plan. I waited and waited for lungs to come along (and I actually was #1 on the list very quickly after being listed; however I have the 2nd rarest blood type and was very petite, necessitating small lungs). I prayed every day. I also started doing several independent bible studies. I wanted to be prepared and needed some comfort during this rough time. After I got listed, I really never worried about the transplant. I knew there was a possibility that I would not survive the transplant, or die shortly after. However, I had a peace about it, and was more anxious to get it over with than anything. I knew I was in God's hands, and he was in control.

My health remained stable (as stable as it could be) until about January of 2004. At this time, it definitely took a turn for the worst. I went in the hospital in late January of that year. I spent about 2 weeks in, getting the usual IV abx, PT, high calorie foods, etc. I also spent my b'day in the hospital, but had 3 surprise parties that day by different people. It was truly a fun and blessed day. I hadn't really felt any better as I was nearing the 14-day stay. I fudged a little and told everyone I was ready to go home. At this point, I did not do PFT's (lung function tests), because I was to sick. So there was no "measuring" to see if I was well enough to be discharged. I knew I probably needed to stay, but ached to spend just a few days at home, in my own bed, for possibly the last time.

So my theory came true, and I ended up back in the hospital 2 days later, in a much much worse condition. I was getting 12 liters of oxygen, albuterol aerosols every 2 hours, morphine aerosols, constant antibiotic medications, and medications to relive pain and anxiety. I knew it was serious, and knew if I didn't get a transplant soon, I would be in trouble. I don't think I realized how soon this needed to happen, as the next 1-2 weeks of events flew by very quick. I got worse pretty much every day. There may have been a day or two where I stabilized, but not much. I was only getting a couple of hours of sleep at this time, and at times, was so "out of it" I had no idea what was going on.

Because no cadaver lungs had become available, my parents discussed with my CF doctor and one from the UAB transplant team about considering a living donor transplant. Everyone decided to go ahead and prepare for a living donor transplant, but with hopes it would not come to that. I knew that they had talked about it, and many people started stepping up to be tested. But deep down, I kept thinking to myself, that it would never get to that point, and I would get cadaver lungs in no time. And I kept thinking that up until the transplant. Once again, God had a different plan than what I wanted to happen.


To Be Continued (and the next post About Me will be the last).....

Recap: About Me...Part II

So I'm picking up from where I left off. The decision was just made for me to be evaluated for a lung transplant at St. Louis Children's Hospital. I went through the evaluation process and ended up being a good candidate for lung transplantation. So I became listed in the spring of 1998 (7th grade). However, my health actually began to stabilize and hospital stays weren't quite as frequent.

Although I went in the hospital several the summer before 9th grade..... 9th grade proved to be a very successful year. We began to get calls from St. Louis stating that they had lungs for me. However, because my lung functions had improved somewhat and I felt pretty good, we passed on the lungs. At this time, if you passed on lungs more than 3 times, you had to consider going off the lung transplant list or becoming inactive. During my 9th grade year, the decision was made to be reevaluated and become inactive on the lung transplant list. Being inactive allows you to still accumulate (or it did at that time) time on the transplant list, but not actively be listed. (Note: UNOS has now changed the guidelines/criteria where placement on the lung transplant list is based on severity of illness, not accumulation of time; therefore, the sickest people are put at the top of the list)


Beginning in 9th grade, I did exceptionally well (for me, that is). I only required hospitalizations once during the summer. I was able to go through the school year without missing any school (for CF that is). It was great. I was involved in many honor societies and community service groups, and managed to maintain an above 4.0 grade point average. I really thought things were turning around! I had a great year hanging out with my friends and just enjoying life overall!

During 12th grade, I decided to go in for a tune-up during our Christmas break of the school year. I felt like i could not wait until the summer, like I had done for the 3 previous years. However, after being discharged, i knew my health was not as good as it had been and had not responded as well to the antibiotics this time. During Spring Break of my senior year in high school, my health took a turn for the worst, and there was no "bouncing" back this time. I went in the hospital E.R. during Spring break with an O2 level of around 50%, and having a very difficult time breathing. It was during this stay, that I became dependent on oxygen 24/7. Although I only spent about 3 weeks in the hospital, I was required to finish up the school year at home.

Recap: About Me Part I

So since I just celebrated my transplant anniversary and have so many new followers....I thought I would post some of my first original posts about me (with a little editing).
So..here it goes: About Me Part I.

I was born in February of 1985. I have 1 brother, who is 2 years younger, who DOES NOT have CF. I have 2 wonderful and loving parents and a very supportive family.
I was diagnosed with CF shortly after birth. I had an intestinal blockage at birth, which was the 1st indication I might have CF. I was able to live a fairly normal life until the age of about 7. At that time, I began doing CF therapies and added some additional medications. I also went in the hospital for the 1st time for a CF "tune-up." For those of you who don't know, CF patients go in the hospital for "tune-ups" where they receive IV abx (antibiotics) to help give them a boost and to feel better. CF patients have frequent lung infections, so these "tune-ups" help to halt the infections and/or make them less severe when they do happen. I was then able to wait another 3 years, until the age of 10, before I had to go back in the hospital. I've always attended a public school, and was able to have a fairly normal every day routine and life like any other kids at that time. I danced when I was little and in preschool! I started gymnastics when I was 5 years old and continued until I was 11, in the 5th grade! I LOVED gymnastics, and would have continued it if it wasn't for the g-tube placement.

At the age of 10, my CF started to get progressively worse. Hospital visits were more frequent and I was having trouble keeping up with day-to-day things, especially physical activity and weight gain. In the 5th grade, I went in the hospital about 3 times that year. I also got a feeding tube to help with gaining weight and nutrition. From about the 5th-grade until the 8th grade, hospitalizations were about every 3 or 4 months and things really started to go down hill. Beginning in 5th grade, I started wearing oxygen at night, which greatly limited slumber parties, etc., with friends. Nevertheless, I still attended a public school and was part of many school organizations including the Honor Society, advanced classes, etc. Until about the 8th grade, I never told any of my friends I had CF. They just thought I got sick frequently. My family and I were and still are very strong in our faith of Jesus Christ, which makes these situations so much easier to handle and endure. In the 8th grade, things began to change dramatically.

In January of 1998, I went in the hospital for a what was supposed to be 10-day tune up. During this stay, I "caught" the flu (yes...in the hospital), which made my health take a huge turn the wrong way. I spent 5 1/2 weeks in the hospital that time (which included my b'day and Valentines' Day). The decision was also made for me to get evaluated for a lung transplant. I had just turned 13 at this time. This was a huge shock for me and something I did NOT want to do. But I didn't have a choice and my parents made my decisions for me. In spring of that year, I traveled to St. Louis Children's Hospital to be evaluated for a double-lung transplant.

To be continued.....

7 YEARS!!!!!

Wow! On this day, February 25th, 7 years ago (2004), God gave me the most wonderful gift of all: a miracle; a second chance at life. WOW!!I can't believe it's been 7 years...time flies!!

A special thanks to my donors: my Mom and Jeff (family friend). I know some of you are new to my blog, so I've decided to re-post my "About Me"/Intro posts when i started my blog, that recaps my story. I have been blessed beyond bless and are so excited to see what life has in store for me. I know I have my ups and downs (getting sick), but I always seem to bounce back and jump right back into my normal, daily (sometimes stressful, but wonderful) life. I'm getting closer and closer to pursuing my career dreams!


I've had a lot of close friends pass away recently, some that are really sick (post and pre-transplant) and some waiting for their 2nd chance as well. I am praying for these people every day and for God to touch their life in an amazing way. I'm sure most, if not all, of my followers are organ donors (those that can be-medical-wise)...but if you aren't...i strongly encourage you to be one. It's a wonderful gift that you can give to someone else.


We've had exciting news in the CF world as well, with the VX-770 drug getting astounding results. We are looking forward to it being approved by the FDA and get on the market, so it can start saving lives as well. We are definitely making Great Strides in the world of CF!! And i really encourage you to be a part of that.


I'm ecstatic to be celebrating a special anniversary today! God is good; and a special thanks to all my family, friends, and medical team members that have cared for me pre-transplant and now post-transplant..for allowing me to live my dreams and pursue my goals, for taking such great care of me, and for being a wonderful support system!! Thank you!

BOMBARDED!!!

You think things are going well....but then they just go backwards. I have been having migraine headaches for about 8 days now (since last Monday evening). I had been unable to identify the underlying cause, and nothing was really relieving the pain. I'm not one to get headaches period, so to have migraines is a pretty big deal....especially when unresponsive to Advil, Tylenol, Excedrin Migraine, etc. So I finally called my transplant coordinator who had a call into the doc to call me in a specific drug to treat migraine headaches. While waiting for her to call me back, My mom asked me to check my oxygen saturation....which i feel kind of dumb to have not thought of that myself, considering I did that all the time before my transplant. After transplant, you tend to not check those things as frequently, and I don't normally have issues with my O2 sats anyway.

So when I checked them they were in the 80s (87-88%). Crap! So I called my coordinator back and she had me come to clinic today. After checking my O2 sats yesterday, i started putting some pieces together. First of all, I have been extremely fatigued/tired...probably 90% worse than normal. Last week I did start coughing junk up, but it subsided with the initiation of TOBI and Xopenex aerosol. I just haven't felt great the last week or so, but didn't really think anything about it. This morning before I left my house, my oxygen saturation was 88%.

So the verdict from clinic today: No pneumonia (which is good)..probably bronchitis or other respiratory infection. My lungs actually sounded ok. My PFTs, however, dropped 15% from 3 weeks ago (today it was 34/32%, compared to the first of February being around 49%). My oxygen saturation was initially 94% when checked. However, my coordinator had one of the nurses "walk me" around clinic and monitor my sats while doing so. They ranged between 88-89%. So based on my signs/symptoms, oxygen levels and PFTs.....this is what my doc prescribed:

Oxygen 2 liters at night (during the day if I feel like I need it)
IV antibiotics (home version)
Steroid boost
Finish round of inhaled TOBI

So not exactly happy with the outcome, considering I haven't had the best record of staying well the last 6 months. This is the 3rd round of IV abx since October..plus the GI hospital stay. And...I haven't had to use oxygen really since my transplant (with the exception of temporarily during 2 hospital stays with pneumonia). Doc said the oxygen should be temporary. I'll go back to clinic in 1 month to be re-evaluated.

So...with all said, hopefully these "scripts" will knock this infection out for good. Psych clinicals start next week....tests galore...crazy!!! Busy week this week with other stuff too....what the heck...every week is busy...LOL!

I did manage to get a B on my Pharmacology test last week...however, after studying for 2 straight weeks, I had high hopes of making a "high B" or better yet an "A." Maybe next exam.

Speaking of transplant, this Friday, February 25th, I will be celebrating God's wonderful gift given to me 7 years ago....the 2nd chance at life. 
 

Wow!

I can't believe it's mid-February, and I haven't posted since January. My apologies. I'm guessing most of you don't get your hopes up anymore for me to post. Nursing School has control of my life right now :)

But I wanted to write a quick update. Picking up from where I left off...being discharged from the hospital...everything is going well. No more stomach issues. Things seem to be back to normal. I had lost about 10.5 pounds from this hospital stay. I have managed to gain back about 3-4 pounds (depending on the day). I've also switched to Creon Enzymes, due to Ultrase not being manufactured anymore. So I'm also trying to adjust that to where it needs to be. So far so good. For the most part, the lungs are doing well...just a minor cold here and there.

School is good, but extremely stressful. Being out for 2 weeks at the beginning of the semester through me back, especially with having to take an exam the day after I was discharged, and another exam the following week. Needless to say, I didn't do too well on those 2 exams. I had my 2nd Pharmacology Exam today, which I made a B on. While I'm happy, I had my hopes on making a high B or an A, considering I had been studying non-stop for 2 weeks.

In other school news, I had to medically withdraw from my OB class/clinical at the suggestion of the professors. I had missed a couple of labs while in the hospital, and upon meeting with the professor, I was told I couldn't make those labs up. So 2 classes were knocked off my schedule for this semester. I will take the OB lecture and clinical this summer. Thankfully, it won't put me behind, I'll just have those extra 2 classes this summer on top of the other 3 classes. So I'll have 5 classes and 16 hours in about a 10 week period...YIKES!! But again, I would have hated to have to drop back and lose my great friends I've met in nursing school. So I thought this semester would be much lighter, which is still is, compared to what it would be, but it's still extremely busy and stressful! My Psych Clinicals start March 3rd. I have to say, that out of all the Nursing Classes, this is the one that I'm NOT looking forward to!!

Other Miscellaneous news...I had a Birthday on February 4th....26 years old. I feel old. I wish I could go back a few years!! My 7 yr transplant anniversary is coming up on February 25th (next week), which I am extremely thankful for.

I need to start on my stuff for our upcoming CF Great Strides Walk. Our Young Professionals Board is going well. I am Co-Chair of our board this year, which means I will be Chair of the board for 2012. I'm really excited.

I'm trying to keep up with everyone's blogs, but my time is limited. For those of you on facebook, I'm able to keep track more often :) I hope everyone is having a great week. I'm about to go out for the night...get my mind off school. Tomorrow and Friday will be spent doing a Pharmacology Assignment.

Until next time.....

HOME~

I'm finally home after two grueling weeks in the hospital...this stay was extremely hard. My stomach is working normally now...but I am on a full-liquid diet for about 10 more days. I return to transplant clinic next Wednesday for follow-up.

I am attempting to attend a clinical orientation class tomorrow and hopefully class and an exam on Wednesday. I'm extremely weak, so not sure how much I will be able to endure. Please pray for strength and endurance over these next few weeks.

I hope everyone is doing well. I miss blogging!

Hospital

I know this is way over do. I have been in the hospital pretty sick since last Monday-Jan. 10th. I developed a very very sudden and severe small bowel obstruction and have been fighting it since. I had an NG tube up until this past Tuesday. But after that, things turned the wrong way again, and another tube was put back in. The tube came out again this afternnon, so I'm hoping it can stay out. We are still working on resolving the obstruction. I had hoped to be home by now, but things are just moving a lot slower. Upon admission, i was extremely sick and very acidotic. i had no bicarbonate in my blood. In addition, i had been in extreme, extreme pain. Luckily the pain is better.

THey have started me on clear liquids right now. I will have to remain on a full-liquid diet for about 2 weeks before resuming a solid-food diet. THis will be hard, but know it is necesarry. Please pray the obstruction will clear itself very quickly. Pray that the NG tube can stay out. Pray for improved strength, and energy. Also, just as importantly, pray i will be able to catch up on schoool stuff. I have missed a lot of stuff.

I'll try and update again soon!
Thanks!!!

Happy New Year/Back to School

HAPPY NEW YEAR TO EVERYONE!! I Hope everyone had a wonderful Christmas! I know this year is going to be awesome...and I can't wait to see what is in store for 2011!!
I start back classes tomorrow-Tuesday...wow...time flies by! I'll do my best to keep up with blogging. Hopefully it won't be as busy or stressful as last semester :)


I started getting sick again at the middle of last week. So, I started on another round of oral antibiotics (Cipro) for 2-3 weeks. I've only been off the IV antibiotics about 2 1/2 weeks...so praying the Cipro knocks whatever this out and i can start the new semester off feeling good!

A Couple of New Year's resolutions:
1.     To be a better Christ follower. To make more of an effort to attend church and Sunday School more often (I did a horrible job of this last year....using excuses of school and health...although a lot of times it was legit). I attended Sunday School yesterday-Sunday-and joined a new life group, which is sort of like a small bible study and accountability group. I think that will be great and help keep me connected during the school year. I get caught up so much with school and other stresses of life, that I forget and don't make time to spend with God.

2.     Another resolution...to be on time!! I used to always be on time or even early. Now I find myself rushing everywhere...either arriving just on time or a little late.

3.     I also want to decrease the procrastination I have in me when it comes to studying...lol!! I don't wait til the night before, but I really need to start studying every day so i don't have to cram before exams :)

4.     EXERCISE!! I say this every year. It's more of a time conflict than a motivation issue. I am motivated and want to do it. But with nursing school, there is literally zero free time, and if you have free time, it's spent studying. So I'm going to try to at least do the exercise bike we have at home a few nights a week. I do get a lot of exercise (more than before) in with nursing school, and I think it has helped me feel better and increased my breathing capacity (although i feel like i can't breathe..lol) as well as my O2 saturation. So we'll see where this leads too!.

5.    And last, but not least: be a better sister. My brother and I get in so so many fights (verbally) when he comes home for holidays. I always tell myself that it's not going to happen and I'm just going to ignore things he says that makes me mad, and try to watch what i do as well. But it seems like it never happens. So I am really, seriously, going to make an actual effort to get along with my wonderful brother...always :)

Ok...I'm up late...need to go to bed. Lots of stuff to do today (Monday) before class tomorrow! For all of my fellow CF and Transplant Blog Followers...I will be praying that 2011 will be an awesome year for you and that you will feel amazing and be able to do amazing things. Hang in there! Love you all!!


Happy 2011!!!