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.....