Thanksgiving & Update

It is time for a long overdue update-i do apologize. But first, I want to wish everyone a very wonderful and Blessed Thanksgiving. Give Thanks to the Lord, for he is good, for his steadfast love endures forever!!!! Remember who to thank-Our God, our one and only Savior. I am thankful for so many things, but most importantly, I am thankful for the Lord giving me a second chance at life, and the opportunity to glorify him in all that I do. Although this road may be difficult, I know he is leading me into this ministry for a reason.

As a short update, I was in the hospital from November 9th through the 19, which started out as chest pain and nausea, and turned in to infection. Thankfully this stay was a tad bit shorter, and i did not miss too much of school. As usual, it will take me awhile to gain my energy and strength back. My school semester is nearing the end. I have some exams coming up in the next few weeks, then I will be officially entering my last semester of nursing school.

So many people have asked lately: How are you doing nursing school. And i've talked a little bit about this on my blog. But my 1st and foremost reason, is because this is the path I believe the Lord is leading me down. This is a ministry for me. I have such a huge passion for children, and a love for the lord, that I cant' wait to put that into practice. There may be difficult times down the road, but I truly believe the Lord will get me through them, because this is my way of serving the Lord. It's very hard now to see this, as i've had many trials through nursing school that question will I be healthy enough to work. Honestly, I've never thought about that in detail. I always assume I will be healthy enough. This year I have had some progression of chronic rejection. I have started back treatment, for the 3rd time as well for it. As I started to ponder, I actually got really scared about what was going to happen. Will I make it through 1 more semester? Will I live to work? What if type of questions. I never thought that the sentence in the newspaper about my transplant in 2004 would be true: "This transplant should give Katey another 5 years of life." (even though I am almost 8 yrs post transplant). Heck....I was actually pretty mad at that statement, because I had plans on living til I was 90 something years old. And I'm not saying that isn't possible. But the possibility that the chronic rejection could progress to the need for a 2nd transplant sooner than later, definitely worries me. I'm not scared of Death, but i just didn't think the possibility of it could come sooner than I thought.

But then after tonight's Thanksgiving service at my church, I realized that God's love endures forever....whether I continue to live on Earth, or not; whether I graduate with my BSN and work in pediatric nursing. Only God has those answers right now. I need to be thankful for God, and for the wonderful and amazing things he has given me and my family. I honestly need to go back to taking it one day at a time. When trouble comes, deal with it, then pick back up on my feet and keep running.

So this Thanksgiving, remember to thank God first and foremost. Be thankful you can breathe. Be thankful you are alive and well. The Lord's love endures forever, despite your pitfalls, failures, or even death. Be thankful for that this Thanksgiving.

Please say a special prayer for my friend, Amy Crews. She and I have a special bond, and she is currently waiting for her 2nd lung transplant. Please lift her up in your prayers over the holidays. Thank you!

Love to you all,

Photo for chronic rejection

I am starting another round of photophoresis tomorrow, October 17th for the progression of my chronic rejection. I've talked about what this is on my blog before and most of you know I have already completed 2 rounds (15 mths each round). My doctors are hoping that somehow this round will stabilize me some like the last rounds (the last rounds did not reverse or improve anything but apparently it stabilized me somewhat...i like to call it remission). I don't have my hopes up...but I do trust my doctors. More importantly, whatever happens, is God's doing, and is always for his glory. I am having a hard time actually grasping the situation that my chronic rejection status is not good and prognosis isn't good. I believe that everything will work out...that I will graduate in May, and start working as a nurse and go on to live a long and fulfilled life. I am taking it day by day. I'm not at peace with doing another round of photo, as no one at UAB has done that, let alone Duke I think. So it's any iffy chance. But please pray for me and that this photo will work, but more importantly, for me to feel peace from the Lord about whatever plan lies ahead. Thanks :)

Questions for those @ Duke/update

I have a question for my fellow bloggers that go to Duke-that have been transplanted, currently thinking or evaluating for transplant there.

But first-quick update: I was discharged from the hospital Aug 15th-1 day before classes began. I spent 3 weeks in the hospital-the most I've ever spent since my transplant. I completed 7 days of thmyoglobulin. My low grade fevers ended up being due to C-Diff infection which completely wiped me out. I have now completed almost 5 weeks of oral Flagyl and 2 weeks of oral Vancoymcin. After returning home, the effects from the thymo were horrible, and still remain somewhat. I am slowly getting better. My oxygen saturations have been much better-upper 90s at rest and 88-90 with exertion (with no oxygen) which is better than 82-83 with exertion before the hospital and around 85-88 at rest before the hospital.

I am scheduled to begin photophoresis within the next week or two. I am thinking about getting a 2nd opinion regarding my chronic rejection and history this last year. Although I don't doubt I have chronic rejection, part of me feels like there is something the docs are missing. I am not 100% positive that I need photophoresis or that is the right treatment protocol for me right now, considering I've already done it twice in years past. I'm not in complete agreement with my docs on how much the chronic rejection has progressed. Although I only have 30-40% lung function, I'm not convinced some of that is due to only having lobes and not full lungs. I know Duke is familiar with living donor transplants.

If I do precede with getting a 2nd opinion, I will travel to Duke, as I feel its the best center that is the closest to me. So if you have any experience with chronic rejection or transplant at Duke-i would love some info. Even just general info about the docs and transplant team. Or-if any of you have had different treatments for chronic rejection at another center-please feel free to discuss as well as my options are open right now. I want the best for me, and my lungs have definitely deteriorated over the last year or so.

I am managing to make it through classes, but still get really wiped out. I started my 1st IV on my patient last Friday. Off to clinicals again tomorrow and again Monday.

Hospital

I know I have been horrible with updating my blog...i just haven't had the time with nursing school. I hate that :(

Anyways, I have been in the hospital for about 19 days now. I have been treated for a respiratory infection and are now doing treatment for chronic rejection (again), which includes Thymoglobulin and photophoresis. It's definitely been a roller coaster ride this visit with many tests and studies to rule out every possible thing that could be going on. It ultimately came down to progression of chronic rejection.

My fall semester classes start on Tuesday, the 16th. Please be praying that I am out of the hospital and feel up to attending classes. I will do everything possible to finish these next 2 semesters, but I would love it if I could make it through with minimal suffering.

I've still had major issues with high heart rate, shortness of breath, and low oxygen saturations with exertion. Thymoglobulin is a drug that wipes out your immune system completely (to about a WBC count less than 1.0). I am currently on my 3rd dose, and will probably complete 5 doses because my WBC count is still too high (about 10,000 right now); This medicine is also known to make you feel like you have the flu. I am premedicated with solumedrol, Tylenol and benadryl. When i completed this treatment back in 2006, i tolerated the medication well, but for about 5 days after i felt horrible (like i had the flu) and even ended up back in the hospital for a few days. So this is a very crucial time as i am very susceptible to infections; And with nursing school, that doesn't make it much better-lol.

I have been having low grade temps the last few days as well. We definitely need this to go away NOW!!!

Sorry for the long overdue update. Sorry this is quick, but haven't had much motivation to blog. I did finish the summer semester with all A's...which i was ecstatic about :) Two more semesters to go until I become an official RN!!

Sorry-Here is an update

Sorry for the long time lapse since last posting. It's been a little busy around here. I'll give more details and catch you up on what's going on throughout the week.

But just briefly: I finished IV abx April 15. Luckily, i have not had to go back on IVs since then. I am though currently taking oral Cipro antibiotic.

I finished up the spring semester with B's. I actually start summer semester classes today-Monday the 23rd. I had a two week break.

Last Wed i went to the beach with some family. I got back yesterday (Sunday). The weather was beautiful, but very hot Saturday; no rain (which was nice), so i was able to enjoy being outside for 5 days. Definitely a relaxing trip. And i think the beach air really perked me up and i felt so much better. I'm still on Cipro for another week, and still using oxygen, Xopenex nebulizer and oxygen at night. However, my oxygen saturations have been a good bit better and I've been able to decrease the amount of oxygen i wear at night. So praying that i feel great this summer, since i have an extremely heavy load of classes.

Our local CF Great Strides Walk went extremely well! I will post about that later.

Hopefully you haven't given up on me blogging :) I still read your blogs, but hopefully I'll be more consistent with updating and posting interesting, fun things that are going on with me :)

More updates to come!

Neverending

Crazy. I can't think of a better word to describe my life right now. Some of its a "good crazy" but not all of it.

To update: I had my bronch last Monday, the 4th. All went well. I did require more sedation than last time, but for some odd reason it didn't take me as long to sleep it off. Once I got home, I slept for about 4 hours. When I awoke, I was sort of in a panicky-agitated mode. I couldn't breathe. I was extremely nauseated, shaky. I couldn't move. These are common side effects after a bronch, but the extent to which i was experiencing these was much more than I had in the past. However, I just told myself it would go away, and I spent the next 5 hours trying to overcome these adverse effects. At about 9:30 or 10:00, clearly things were getting better and I was having an extremely difficult time breathing. I called my doc (the doc on call was the one who happened to do my bronch-and my fav); he was concerned and told me to come to the ER. One of the concerns after a bronch is a pneumothorax. I was having pain on the side they did the biopsy, so it was definitely a possibility.

(on a side note: I did notice that my WBC count had increased that morning to 10,000 from 6,000 the week before. That is very unusual for me, and it actually pretty high, as I normally run around 3-4,000. Also, I had felt ok prior to the bronch, and even went to take a Psych Exam at school prior to the bronch)

So on arrival at the ER, my Dad signed me in, and I sat down. Then he told them about how i was transplant, and had a bronch that morning. My ER does a really good job about taking transplant patients right back-even skipping triage area. So once they signed me into the computer and took baseline vitals, everything went extremely fast. I did have a fever when i arrived, a high heart rate, and O2 sat of 85% on room air. Once I got back to the room, they did blood work, stat xray, EKG...the works. After about an hour or so, things finally calmed down. I was on 4 liters of oxygen, hooked up to all sorts of lines. They wouldnt even let me get out of the bed too pee without my oxygen (even thought I knew i would be ok-UGH). My lab work came back and it was all out of whack. My WBC count was now 16,000. My xray was also suspicious of pneumonia. UGH!

So I got admitted...finally arrived in a room about 2:45 AM. LONG day/night. My doc thinks it was just a reaction to the bronch. He said since they stir a lot of things up down in your lungs, you can have increased WBC counts. However, he said they never see them that high. I did receive 2 doses of IV Vanomycin, Tobra, and Ceftaz while admitted. So my doc thought it was safe for me to be discharged. I told him i had to be at clinicals Thursday anyway...and i was already doing IV Ceftaz at home. My NP, however, was concerned, and didn't want me to go. But i guess the doc wins in that situation. When I left, my WBC count had actually increased to 18,000. So she just told me to have a really low threshold and report any minor/little thing.

I ended up feeling fine on about Friday last week. I felt pretty good over the weekend too, and soaked up a lot of sun. However, yesterday I felt horrible and had a really high resting HR. Today was some better, and I'm hoping yesterday and today were just off days. I finish my IV antibiotics Friday, and return to clinic next week. My oxygen levels are still struggling, as several days that have been below 90% at rest. They are 86% and below with excertion (even saw an 82% today-UGH). But then i've had days where they are in the mid 90s...so it's really a confusing cycle here. Still sleeping with oxygen. I'm praying that this infection will be rid of for a very very LONG TIME as it's been really hard keeping up with school.

Tomorrow is our last day of Psych clinicals. We have 2 more weeks of classes until the end of the semester..YAY. Definitely ready for my 2 week break.

Bronch moved up

My bronch has been moved up to this coming Monday, the 4th. The doctor that is doing it was booked solid for the Monday we had planned on, and he didn't want to wait any longer, so it's scheduled for this Monday. BLAH! Now my studying stuff is going to be off. I have a Psych exam Monday from 8:00 to 9:00 am. So I'm going to go take my test (have my Mom drop me off), then leave as soon as I finish to get to the appointment, which is at 10am, but they like us to be there about 30-45 minutes before, not to mention I have to get labwork before the Bronch. Maybe I'll do that before my test???

I've very tired and very short of breath today. But I did manage to get one chapter of Psych notes typed up. I'm going to end up being out of commission the remainder of Monday after the bronch and possibly most of 1/2 of Tuesday..and have a lot to do, including a major Pharmacology Assignment, which usually takes at least 10 hours to complete. Yikes! Class Wednesday too, and clinical Thursday. So I guess I'll work on the Pharm assignment as much as possible Tuesday, Wednesday night, Thur night, and Friday up until the time it is due. I can't work on it this weekend, because I have a test Monday that I need to study for...AH....this sucks.

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).....