Cycling

It seems like I've been on a cycle of being sick and not being sick since about October of last year....it's getting kind of annoying. And I Hope this is the last time I'm sick for a good long while.

I did 2 weeks of home IV antibiotics starting Feb 23rd...so ended these about 3 weeks ago. I also did steroids at that time, as well as went on supplemental oxygen at night and during the day if needed. After I finished the 2 weeks of abx, I did feel somewhat better for about 2 weeks. Then last week I started getting sick again....but then had 2 days where i felt pretty good (guess it was the "Calm before the storm"). I already had a follow up clinic appointment schedule for today (Wed); However, Monday I felt a whole lot worse, and my oxygen sats had dropped to 82% while walking to my car at school. They had been around 88-89%, although there was an 85% one day last week. I also had a low grade fever Monday as well, and a productive cough decided to present itself along with everything else. I called my coordinator and I started on Cipro Monday evening; We agreed that I would be ok to wait to be seen until clinic today, after talking with my coordinator again yesterday (Tues);

So the verdict from clinic today was: still nothing major showing on my xray; PFT's about the same as last visit, which wasn't good. I had the choice of coming in the hospital or doing home IVs again; so I chose the home IV route, since I'm still doing clinicals for nursing school. So I'm doing Ceftaz for 2 weeks in addition to oral Cipro; continue the oxygen; and another steroid taper.

We also talked about doing a bronch to check for rejection; he said it was probably not rejection, but that you never know so it's probably a good idea. I haven't had a bronch in about 1.5 years. We are going to schedule the bronch, for hopefully April 11th-a week from next Monday. I only let one particular doctor do my bronchs; I have a test next Monday and other assignments, etc., so he was fine with waiting til the following week.

This really takes an emotional toll on me as well as physical. Round 4 of IV antibiotics since October....definitely not like me (or it's never been this close together); hoping this does the trick or we figure something else out that clears this stuff up for good. It's really hard going to class when you can't breathe very well. But i'm determined to go and not miss class; I'm supposed to take it easy, per doc and coordinator orders.....just trying to decide how and what area I'm going to do that in????

I will definitely update after the bronch or when i know results from it or if anything happens before then; School is crazy and we are, thankfully, nearing the end of the semester. One more exam in each class in addition to ATI exam (which mocks our licensure exam); 1 more pharmacology assignment; 3 more Psych clinicals; we are required to attend an open public AA meeting for Nursing Psych class; so i did just that tonight. It was very interesting. I have several papers to write for that class too!! Crazy!!!

Good night...clinicals tomorrow, so need some rest. Looking forward to the weekend, and most of all, hopefully feeling better, especially more energy and higher oxygen levels.

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).....