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.

Breathe Easy, Emily.

As I commented on Emily's blog a few minutes ago, I'm not even sure what to say or what to write, other than I'm in extreme shock that she is gone. Just yesterday, she was making good progress and expected to fully recover. What happened today is beyond our comprehension, and only God knows what happened. I'm thankful she is now at peace, in Heaven, with our Lord. She was such a strong Christian and God-loving person, that I know she was not afraid to walk right into the light of Heaven. But still, I am at a loss for words. Emily and I had become good friends. She was transplanted at UAB and followed by UAB as well (same place I am). We frequently talked via facebook, text messaging, and via blogging. And when she came to Birmingham for clinic visits, we tried to grab lunch together. I would visit her in the hospital when possible. She had a wonderful husband and daughter....why would God want her to leave this earth now???

(September 2008)

Please pray for Jason, her husband, and Faith, her sweet little girl (and of course for the rest of the family and friends). I'm still in shock, crying, emotional, and don't know what to do. Emily, Shaun (who passed away last year), and I were good friends and now both of them are gone. WOW! Why did such a freak thing happen like this. I can't be angry...because I know she is breathing easy, and in no pain at all. But it is still going to be tough. I think it is tougher for me to deal with when a CFer passes away that is post-transplant. Because it is from post-transplant complications and not directly CF-related per se. We get the transplant to live a normal life...not to go through all these extra complications. And it scares me too....proving that things happen quickly and suddenly, in which sometimes you have no control over. Her infections have been pseudomonas pneumonia, the same as mine....definitely a wake up call.

(Fall of 2008: Emily, Me, Shaun)

Emily...I love you and will miss you!!!! Thank you for all of your support for me and being the strong, Christian woman you are!

Recap: About Me Part II

Here is the About Me Part II recap post!

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.

My health actually began to stabilize and hospital stays weren't quite as frequent. However, I did have scoliosis at the time, and it got to the point where surgery was needed to correct the curve. I underwent back surgery the summer before 9th grade. The surgery went pretty smooth as well as the recovery process.

Although I went in the hospital several times that summer, 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 3times, 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.

Beginning in 9th grade, I did exceptionally well (for me, that is). I only required hospitalizations once during the summer through the 11th grade. 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! Now, I was (and still am) the type of person to stretch things to their limit. I would usually wait as long as possible to go in the hospital for tune-ups!

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. During Spring Break of my senior year, my health took a turn for the worst, and there was no "bouncing" back this time. I went in the hospital emergency room 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.

To Be Continued....

Steroids/School Update

I haven't really had much of anything exciting to blog about. I did get a pre-nursing advisor assigned to me on Tuesday. I will be contacting her to schedule an advising appointment REALLY soon! I also have been cleared to register for classes...HOWEVER, my "time-ticket" (which is when I can register) is not until August 1st...UGH!! I'm going to see if there is anyway possible I can register earlier than that. I'm VERY worried that the classes I need/want to take in August will be full by then. (in particular the sciences). With a couple of the sciences (Organic Chemistry, Microbiology), the university requires you to take a supplemental course IN ADDITION to the lecture and lab course...so yes, a total of 3 classes for 1 science...CRAZY!! And the best part...you don't get any credit hours for the supplemental course, but it is a co-requisite requirement! It better be for free :) So basically, for every 1 science course, I'm taking 3 classes. That is going to be hard to schedule...so that's why I don't want to wait until August to register for these classes! Other than that...everything is ready to go...I've been approved for everything! I'm still planning on working starting in August...so praying that the school and work schedule will work out together!

Ok...so the second part of this post...STEROIDS!!!!!!!!!!!!! Have I mentioned how much I HATE HATE taking steroids (ex: high-dose prednisone)????? Prior to transplant, I took Prednisone all the time. I don't remember the doses...probably around 20mg or so, maybe less. I rarely did Prednisone Bursts though and rarely had Solumedrol in the hospital. At 6 months post-transplant, I was put on my life-time maintenance dose of 5mg. I've been on 5mg for pretty much the entire 4.5 years. I think there was one time back in 2006 where I did a Prednisone Burst (for wheezing I think). But then it turned into pneumonia, and the steroids were discontinued. Last May, I had a moderate case of Acute rejection. I was given 1000mg of IV Solumedrol for a total of 3 days (and man, did it make you feel like hell! But it was only 3 days). If you have been reading my blog, then you know this last hospital stay, a lot of inflammation was found in my lungs. The cure for inflammation: STEROIDS! I completed very high doses of IV Solumedrol while in the hospital(starting out at 80mg via IV). Then I was sent home on High-dose Prednisone. I am on a taper, and will be back down to my 5mg next Wednesday, the 24th.

However, in the meantime...this Prednisone Burst has pretty much caused every side effect possible within my body. I hate it! And it has a lot of potential side effects. I sure do hope the benefits outweigh the risks/side-effects! Unfortunately, there is really not much you can do to reverse or help with the side effects, which makes it even harder. The two main side effects: A Break-out-like rash over my entire body, specifically face,neck,back,chest,arms. It's awful, and I'm even embarrassed to go out in public with my face. My coordinator said it "should" get better. Praying it hurries up...I can't stand it. And my face itches and burns too! The other major side effect: shakiness!!!! I can't even tell you how much it makes me shake. Currently, I can barely hold onto any utensils to eat food with. My mom is actually fixing my dinner plate at night, because I have ended up spilling food out of the pots and pans! I can't write (with a pen that is), without my writing looking like a 2 year old. I haven't been able to write my thank-you graduation notes because of this! My legs pretty much shake all day long, no matter what I'm doing. It's a little aggravating when you are trying to drive too. Other side effects: high blood sugars, headaches, no sleep, joint pain, female issues, etc. You'll be amazed at the possible side-effects. The crazy part is that it doesn't affect everyone this way. For the most part, it causes an appetite increase and maybe swelling. I guess I'm just special. OH how I long for this to be over!

So that's my rave on steroids!! I'm going to dinner and a movie tonight with a friend! And tomorrow night dinner again with Brandi at the Melting Pot (I have a gift card and are so excited)! My mom is having a garage sale Saturday, so I have been busy non-stop helping her for the past week. I babysat some kids for a couple of hours yesterday. It's funny to think that I've only been out of the hospital for about 1 week too!

Dad with CF Beats Infertility

I got this article off a friend of mine's blog regarding CF patients and the fact whether or not to have kids. It's a long article, so I'm just going to summarize it. But I highly recommend clicking on the link above and reading the entire article!

"I was also told there was a 99 percent chance I'd never have kids,” he says. “I'd been told that pretty much my whole life."

Today, he is happily married with two children, 9-year-old twins Bradley and Sadie

That Brad and his wife, Pam, were able to conceive children at all is a lesson in perseverance, and the possibilities of modern medicine. They both wanted children, and had discussed it prior to marrying in 1997. The odds were not in their favor. About 95 percent of men who have CF are infertile due to an abnormality of the vas deferens, the vehicle by which sperm is carried from the testes to the urethra.

As Pam tells it: "We went to Brad's physician and told him we wanted our own biological children. We were told it wouldn't happen."

The decision to have children is not one the Hildebrandts dwell on. Asked whether she had considered the fact that she could one day be a single parent raising her children, Pam responds, "Not really. I don't think about it. He's healthy. We live day to day."

Dr. Bruce Marshall, vice president of clinical affairs with the Cystic Fibrosis Foundation in Bethesda, Md., says the foundation, whose work has been critical in advancing life expectancy for CF adults, does counsel adult patients on the decision to have children: "We remind them of the great rewards of child-rearing, but also remind them that they may not live to see their children full grown."

Of course, raising children can be fraught with anxiety for any parent. But doing so while dealing with the physical and emotional complexities of a genetic disease like CF brings some unique challenges to the CF adult. "There has been an amazing shift in the demographic," says Marshall. "Nearly half the CF population are now adults. So it is not just a pediatric disease anymore. CF patients are doctors, firefighters and, as in Brad's case, softball players."

(This is a quote from my friend Brandi): "What amazes me is that these people fail to realize that while there are mutations in the genome that cause disease (like Cystic Fibrosis), those same mutations also PROTECT people from diseases such like cholera. People were much more likely to die from cholera a hundred years ago due to lack of available treatment, and those that had the "flaw" of having CF or being a carrier of CF seemed to have some protection. I guess that is just one reason (among many) that we humans are still here on planet Earth."

For me, I have always dreamed I would have kids, and haven't really thought of having my life any other way. I believe God will bless me with kids and a husband when the time is right. I will pursue all methods possible to conceive kids naturally (meaning not adoption, etc.). However, if God leads me towards adoption, then I will be happy with that too.

People have asked me why would I want to run the risk of bringing a child into this world, only for him or her to have CF. It's hard to explain. I think about what would have happened if my Mom decided to not have any more kids after me. I wouldn't have a wonderful brother! What if the child I bring into this world DOES NOT have CF? There is a good chance it will be perfectly healthy as this article depicts. If my child has CF, then I will consider it a blessing from the Lord and use my knowledge and experiences to raise that child the best I can. I'm not going to NOT bring new life into this world. And I'm not going to pursue alternative means just to make sure I don't have a child with CF or any other genetic disease for that matter either.

And then to add to things...while I still run a greater risk of not being able to become pregnant due to CF, I will be putting my body at an even greater risk since I've had a transplant. But that is a whole new post in itself.

I know MANY CF Moms and Dads today who chose to have children. And they are WONDERFUL parents! And so far, none of their kids have CF.

I just can't even imagine NOT having kids!

Better

I just wanted to let everyone know that I am feeling better...thanks for your prayers. I went to the lake Friday evening and just got back a little while ago. We had a great time and great weather! I'll post some pictures later!

I did have a very bad case of vertigo Thursday-Saturday. I think I must have had fluid in my ear since I had a sinus infection going on. That was the only thing I could attribute it to. It was the worst dizziness I've ever experienced and could hardly stand up straight. My head felt like it was swimming constantly. However, it was a lot better on Sunday and it is gone today. PRAISE GOD!! I got to enjoy most of the weekend!

I hope everyone had a fun and safe labor day holiday! I will post again in the next few days. I'm going to take it easy tonight. I am back at work in the morning, then have a photo session tomorrow afternoon and Wednesday morning.

Update

Here's a quick update in case any of you are wondering. All my lab work from Wednesday morning was perfect (well, for me that is). The only thing that was off was my WBC count. It was 2.3, which is pretty low. I've been having a hard time keeping it up lately, which worries me a bit. The normal range (for a normal person) is between 5 and 10. I used to run about 5 or 6. However, in the last few months, it's been between 2 and 4. The transplant team is pretty comfortable with it 3 or above. But anything below that, is really too low. It puts me at greater risk of infection. And last time it dropped this low, I got a really bad virus with a fever for 6 days along with other symptoms (not fun). So I'm a little concerned, since I'm leaving for the beach next Thursday. I do not feel very good at all. I think it's a sinus infection, which may not be that serious. However, I've had sinus infections turn into lung infections and pneumonia before too. I had sinus surgery last summer (for the 1st time ever) and haven't had any sinus trouble since then. So I'm a little shocked. I have to return in about 2 weeks to recheck labs. I might request some antibiotics before the beach trip, but not sure yet. I'm going to see how I feel over the weekend.

Continuation of Post-Tx Complications

Here is more information regarding post-tx complications. This post and the previous one about rejection, is more of an informative post. Please don't think I'm complaining about any of it. Like I've said many times already, I would NOT trade the post-transplant side for anything. It's worth it to go through some of these complications and be able to live a fairly normal life and to be able to BREATHE! So please don't get the wrong idea....Some people just don't realize all the stuff that can happen post-tx. (BTW: Tx=transplant)

OK...so I reviewed the rejection and it's possibilities. Another possible complication is infections. Because your immune system is highly suppressed, you are more susceptible to catching "colds." Getting an infection post-transplant is much different than before, with CF. With CF, usually the infection was related to CF and either oral or IV abx for 2 weeks would cure it. It wasn't infections like the normal person would get, and your immune system is much stronger prior to transplant. CF infections were called "CF exacerbations."

After transplant, CF still remains in your sinuses and digestive system. So you are still prone to getting sinus infections which can move into your chest if you are not careful. Usually, if you catch an infection soon enough, a round of oral abx can cure it. However, sometimes you might have an infection and not know it until things get a little more severe. For some reason or another, my body gets infections 4-5 times a year. A few times, oral abx are able to treat the infection. However, several times mine have turned into pneumonia (or maybe even started that way). Usually (not always) I will start running a fever and I usually don't feel too great. Because of the fever, my coordinator usually makes me come in and get evaluated. After that, my chest x-ray will usually show a spot on my lung (pneumonia). When I get pneumonia, I usually stay in the hospital for 1 week, then go home on home iv abx for another week. I will also get albuterol aerosols for a few days to help clear the pneumo up. And sometimes, depending on my breathing, I might use a little oxygen at night. Last year, 2007, I had pneumonia 4 times. It's not fun to get, but treatable if you catch it quickly. If you don't, it can be extremely serious and life-threatening. (which has happened once, but won't go into detail about that here). So....keeping your sinuses clear and paying close attention when you start feeling bad is VERY important, especially if you are prone to infections. You can also diagnosis infections by a high White Blood Cell Count. However, using that lab test doesn't always indicate an infection. For me, mine count is rarely elevated during infections. They usually say, once you get pneumonia once, you are very likely to get it again. And so far, that's proved to be true. I've had it at least twice every year since transplant, and have been hospitalized for all occasions.

Because CF remains in the sinuses, sinus infections can be frequent depending on the person. Usually, a CF patient has sinus problems anyway. However, for me, I never had trouble prior to transplant. Last year I began having major sinus problems (which once caused pneumonia) and ended up having sinus surgery last July. Since then, I've stayed pretty clear and have not really had any problems. Thank the Lord!

This post ended up being a little longer than expected, so I will do one final post summing up the remaining possible post-transplant complications.

One quick note: Although these complications are POSSIBLE in all post-transplant patients (mainly CF), that doesn't mean that every CF post-transplant person experiences them. I have many CF/transplant friends who are 4 and 5 years post-transplant, and have never had pneumonia. Most do have sinus issues and may get a very mild infection, but nothing serious like pneumonia.

Post Transplant Complications

Sorry I haven't posted in a few days. I've been having extreme back pain, and sitting at the computer typing does not exactly make it feel better.

I thought I would do a post on complications that can happen after lung transplants (and in some cases any kinds of transplants). And some are unique to CF patients as well. I'm going to divide this post into 2 different posts, so it won't be extremely long.

As I've said previously, even though I've had my share of post transplant complications, I would never trade this side for what it was like prior to transplant (CF Days). I know God gave me a 2nd chance at life for a reason, so he will get me through these complications no matter what.

Recovery after transplant and post-transplant complications is very different for each individual person. I have friends who have had very minimal complications, many complications, and no complications so far.

The main post-transplant complications that we face is rejection of our new lungs. Sometimes the body doesn't recognize the lungs and the surrounding tissue. It treats it as a foreign object of the body, so therefore, rejects it. There are two types of rejection: acute and chronic. In the Fall of 2006, I was diagnosed with "chronic" rejection. With chronic rejection, it's mostly associated with "long-term" rejection and usually does not happen immediately after transplant, only with time. There is no test to "prove" or confirm chronic rejection. There are, however, signs that indicate it. One of the main signs is your breathing/lung function tests dramatically reclining. And that was the indicator for me. Usually, the transplant team or doctors will test you for everything else, before diagnosing you with chronic rejection (such as bronchoscopy, infection, etc.). My lung functions kept declining, and my team of doctors and coordinators could not find anything else wrong.

There are several different treatments for chronic rejection, but not really a cure. Each transplant center has it's own method of treating this type of rejection. Here at UAB, they usually do what is called "photophoresis" and IV administration of Thymoglobulin. I like to describe photophoresis or "photo" as a type of dialysis. You are hooked up to a machine for about 4 hours, in which is removes blood from your body and filters it through the machine, which then returns it to you at the end of the session. The machine exposes your blood's white blood cells to ultraviolet light and a type of chemical, which in turn is supposed to balance your immune system and help your body not to reject the cells anymore. It's very complicated to explain, and I'm not the best person to explain it. For lung transplant patients, you go for two consecutive days, starting out at every 3 weeks. The treatments eventually move out to every 6 weeks, over a period of time. It's not a painful procedure and doesn't really have many side effects, but does take a lot of time and for me, gets very frustrating when you are trying to work and go to school.

Prior to the "Photo" treatments, you are given Thymoglobulin, which is an immune globulin. It suppresses the body's immune system, so it can start "brand new" in building it back up. The entire treatment cycle takes about 15 months. I finished my 15 month cycle in February of 2008, only to have to start it back this May. (I'll explain why later). For some people, the photo treatments greatly improve lung function, other's it stabilizes, and for some, does not help much at all. For me, it stabilized my lung functions somewhat.

Then 2nd type of lung rejection is called "acute." This type is mostly associated with short-term and is present immediately after transplant (usually within the 1st year). It is curable with high doses of IV steroids. Acute rejection is diagnosed by doing a bronchoscopy and biopsying the lung tissue. Indicators of acute rejection also include a drop in lung function tests, and usually the person does not feel that great as well. However, some people can have acute rejection, and feel perfectly fine. Usually in this case, a routine bronchoscopy identified the rejection, and not other indicators. This past April, I had not been feeling that great, and my lung functions had taken about a 15% decrease, which is much more than I can afford for my little body. My transplant doctor decided to do a "bronch" to make sure everything was ok. It ended up showing mild acute rejection. I was treated with high doses of IV steroids (Solumedrol), which cleared the rejection. A follow up bronch was performed a month later.

My transplant team, however, was worried that my lung functions were still not wear they needed to be, even though the acute rejection was gone. The theory was that the photo treatments maybe were preventing me from getting acute rejection and stabilizing me more than we thought. So the decision was made for me to start another round of the photo treatments for another 15 months this past May. I have different opinions on this decision and don't 100% completely agree with it. I'm a full-time student, trying to live my life, work part-time, and it greatly interferes with me trying to live my life. So as of right now, I'm not sure how long I will do these treatments or if I will continue them after the fall semester.

The next post I'll will describe a few other post-transplant complications such as infections, pneumonia, diabetes, etc., that affect patients, including myself.

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.

About Me Part II

I was going to wait to post this til next week. But in order for me to post about certain other things, I feel I need to go ahead and finish posting about me.

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.

My health actually began to stabilize and hospital stays weren't quite as frequent. However, I did have scoliosis at the time, and it got to the point where surgery was needed to correct the curve. I underwent back surgery the summer before 9th grade. The surgery went pretty smooth as well as the recovery process.

Although I went in the hospital several times that summer, 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.

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!

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.

To Be Continued....

Very Rare...

I have a 62 year old Aunt that was just recently diagnosed within the last few weeks with CF. VERY and EXTREMELY RARE! We are all in shock!! She has undergone 2 sweat tests and a blood test to confirm the diagnosis. She has no pancreatic deficiency that we know of. She's also been a smoker for most of her life. It's amazing that she is still alive. I don't think the doctors are really going to do anything different for her except treat her lung infections now with IV antibiotics. My entire extended family is in shock. There have been only a few people in my family who have actually been tested to see if they have the CF gene. I imagine now, that number might increase a bit. I still don't know what to think....as we've never been able to trace CF back among the family line.