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!!

Decisions

WOW!! My mind is overwhelmed with decisions that need to be made or will need to be made in the near future! I just got home from my anatomy lab class, and don't feel up to writing the entirety of several issues! But briefly, these decisions involve my health, and basically my entire future. Decisions that I really didn't expect to have to make! And still praying I won't have to make them. But I have to be prepared just in case!

There was no evidence of acute rejection from my bronch. Good? Yes and No. Bad? Yes and No. Bad in that we don't have anything acute to treat. Good in that my lungs are not acutely rejecting! What are the causes of very low PFT's (my PFT's have been declining a good bit over the last 2-3 years),non-response to the IV antibiotics, multiple pneumonias and infections this year: UNKNOWN! Possibilities: SEVERAL. I will begin doing things (tests, etc.,) to rule out these possibilities, but in my eyes, I would rather one of these possibilities be positive, in fear of what the final and last diagnosis is, which would basically be a progression of my chronic rejection of lungs, which was diagnosed in 2006. (But in reality, that is not a good diagnosis, and I don't care what is wrong, I just don't want that answer). I'm not ready to decide my entire future, just yet!

Step #1: Liver tests! Evidently,there is fluid around my liver. I guess they saw this either in the recent CT scan or bronch (not sure). I have NEVER had any issues with my liver or kidney, and never had any lab values indicate that there are issues. But in reality, something being wrong with my liver, could indeed, be the best possibly diagnosis in the great scheme of things.

I kind of want to cry, and sort of don't. I never give up, and will not accept the final and last diagnosis until we've exhausted all other means! And that view stands among all of the UAB Transplant Team!

In other news, I bombed my anatomy lab test..UGH!! Needless to say, I will be studying my butt off all weekend studying EVERY SINGLE muscle in the body, it's origin, its insertion, its action, its nerve supply and finally, yes finally, it's arterial supply! That shouldn't be too hard right? Na, piece of cake! Yea, right :)

Until my next post! All I can ask for now is prayers! I'm sure many of you can read between the lines on what I'm talking about. If not, then I will post about it sooner or later!

Update on grandfather: still hanging on by a THIN, THIN, THIN thread! But not responding to anything! Just waitin on the Lord to take him home!

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!

"Me Facts"

As suggested by Christy, at Color Me Healthy, and as many other blogs have followed her suggestion, I have decided to do a post with brief facts about me (some health-related, some not). I'll try not to make it too long, but sometimes in order to understand one thing, you have to explain another :)

So here it goes....

1. My name is Kathryn Marie, but I go by Katey!

2. I was diagnosed with CF at about 1 month old, after having a meconium ellius at birth.

3. I have 1 brother, 2 years younger, who does not have CF.

4. I had a feeding tube (G-tube) placed in February of 1996. I hated eating and my parents basically had to force me to eat. I only kept my G-tube until 1999 due to the discovery of Megace. I was the 1st patient placed on this drug at my CF Center, and it became a miracle drug for me. Food no longer was a major issue.

5. My health was pretty good until about the age of 7. At that time I went in the hospital for my 1st tune-up. It wasn't until the age of 10 that I began going in the hospital 3-4 times a year.

6. I had scoliosis surgery in July of 1999, where my spine was fused and rods were placed on either side. In June of 2004, shortly after transplant, I had surgery to remove the rods due to them protruding through my skin.

7. I graduated high school in 2003 as Valedictorian and #9 in my class of about 240.

8. During spring break of my Senior year in high school (2003), I became very ill, requiring oxygen 24 hours a day and constant antibiotics.

9. I have a huge addiction to marshmallows!!!

10. My family has a lake house and I love to spend as much time down there as possible. I love to water ski and tube!

11. I became listed on the lung transplant at UAB August 1, 2003. It took lots of praying, denial, questions, etc., to agree to be listed. And from that day forward, I had a peace about the whole situation. I never once questioned my decision, never once questioned God, and never worried about it. God had given me a peace, which proved later on to be another blessing.

12. In February of 2004, CF had basically taken over. I had 1 hospital stay the 1st part of February and another the last 2 weeks of February. The 2nd stay I was on 12 liters of O2, morphine aerosols, pain medicine, treatments every 2 hours, and MUCH more! I had also dropped to about 60 lbs (for a 19 year old).At this time, my doctor told my parents I only had days to live. Therefore, my parents moved forward with a living donor transplant. I had this type of transplant due to not receiving cadaver lungs in time. And on a side note...due to how sick I was, I had no idea this was being done....not even a clue!

13. My transplant was performed at USC (University of Southern California), which was the only hospital at the time that was performing living donor lung transplants.

14. Monday, prior to my transplant on Wednesday, my CO2 levels were so high and my O2levels were out of whack, that I don't remember a single thing from that day, even though I was told I had several conversations. My doctor put me on the ventilator that afternoon, and I called my Mom (who at the time was going through tests to be a donor) from PICU to tell her bye!

15. I was flown Tuesday morning by MedJet to California along with my Mom and a family friend, who would be my donors. My Dad, a back-up donor and a family friend flew out a little later that day. Prior to departure that day, my doctor called my parents to tell them I was too unstable to make the flight and they needed to get to the hospital soon, in fear of me not making it.

16. Upon arrival to USC, the decision was made to place me on ECHMO(Extracorporeal Membrane oxygenation), a heart-lung bypass machine. My C02 level was 211 (normal is about 30-40). Yo DON'T live with this high of a level, but God had plans for me. This machine artificially pumps blood through your body. This machine was made for the purpose to use on babies. But this was my only option to make it through until the next morning (the 25th). An artificial lung and heart kept me alive for about 24 hours. ECHMO can cause brain damage and multiple organ damage.

17. By a miracle from God, the surgery was a success and I had no side effects from the ECHMO. My lungs were perfect. From the Monday prior to transplant until 4 days later- Saturday when I woke up from the surgery, I was unaware of anything. I describe this period as God taking me "home" for a few days!

18. A month after my transplant, I had a major intestinal obstruction, and had surgery to remove it.

19. I remained at USC for 2.5 months, and in a nearby hotel for about 2.5 weeks. I returned to Birmingham on May 5, 2005.

20. Because of the severity of my health prior to transplant and being on ECHMO and receiving lots of paralytics, I was completely paralyzed after my transplant. It took me 6 months to learn how to walk again and gain the strength to support myself. I finally was able to walk without the help of anything in August of that year.

21. I started college full-time in January of 2005. I had taken several online classes that summer and fall semester before. I attend University of Montevallo with a major of MIS(Management Information Systems) until Fall of 2006. I transferred to UAB in January of 2007, with a major of HIM (Health Information Management). I will graduate this May with a BS in HIM.

22. In August of 2006, I was diagnosed with chronic rejection of my lungs. I have added multiple meds, immunosuppresants, and infusion therapy to help reverse or stabilize the effects of chronic rejection. Unfortunately, not much has helped. But God has kept me going strong!

23. My current lung function averages in the high 30s/low-mid 40s. This is thought to be due to the Chronic rejection, and also because I have 2 lobes and not actual full-sized lungs.

23. I'm a member of my church's singles ministry and I love to go on retreats and spend time with the Lord. He is my rock and salvation and is the one that got me through this journey and continues to bless me every day! I've always been a Christian, but never have longed for a close relationship with God until he showed us his mercy, grace and power through my transplant journey!

24. After my transplant, I realized one of my purposes (besides spreading the gospel and glorifying God), was to be an advocate for CF. I soon joined the staff of the CF Foundation, which was one of the most rewarding jobs ever!

25. I will start nursing school next May, as long as my health allows! I've always wanted to be a nurse, and I feel that is where God is leading me right now.

26. I have a port-o-cath for the chronic rejection treatments and also because I get pneumonia several times a year which require IV abx. But by another blessing from God, I never had to have a port prior to transplant.

27. I have relatively good sinuses, and had my 1st sinus surgery summer of 2007.

28. I've had one bout of acute rejection, last April, which was cured with IV steroids!

30. And last but not least, tomorrow, February 25th, I will celebrate my 5 yr transplant anniversary and my renewed strength with God. I still face multiple complications, but know God has a reason and plan behind each and every one of them! I will never take anything for granted again, because of having basically been on my death bed! While thanks goes to all my doctors, nurses, friends and family, God is the sole reason I'm alive today!

Ok...so I said it wouldn't be short...but hopefully it wasn't too long for you to read! Sorry!

Clinic Results

So today I had my follow up clinic appointment. It really didn't go as I expected. Here's the scoop:

My PFTs dropped a good bit from last time. When I looked back at my previous ones, they were actually about the same (with the exception of last time), but are still much lower than they need to be. They were 37/36 and last time they were in the mid 40s. So this concerned the doctors a good bit. The rest of my lab work was pretty good. HCT and Creatnine are really good. Mag was low, but not too bad (normal for me). WBC count was up to 3.1, which is much better. So at least that is going in the right direction. It's still low, and lower than its ever been since transplant, so it is still putting me more at risk for catching stuff.

At the time of clinic, my prograf levels were not back yet. And I never heard from my coordinator today. So either my levels are fine, or she forgot to call me. I'll probably touch base with her in the morning just to make sure, since I remain nauseated and have no appetite.

While I'm feeling better, I'm still very fatigued and "run down." I'm still somewhat SOB, and have not felt like eating much at all. While the doctors are concerned, they still don't' know what is going on. A couple of them think that I still might have had or have a slight/mild case of Mono, and these symptoms could be from that. Others just really aren't sure. One possible theory is that my immune system is so suppressed right now, that my body can't fight the littlest cold, and is therefore making me feel very fatigued and sick feeling.

PLAN: They want me to have a bronch done within the next two weeks just to make sure all is ok. When PFTs drop and stay consistently low, that is usually the 1st thing the doctors want to do. Although with me, I don't get bronched routinely, and have complications somewhat with my bronchs, so they don't automatically jump on that decision. However, they feel it is definitely necessary right now. I don't mind getting bronched, it just puts me out for at least 2 days, so I am not looking forward to missing more work or more school.

If the bronch doesn't show anything, then they brought up the subject of taking me off either one of my immunosuppressant drugs or the stop the photo treatments. I'm currently taking 3 immunosuppressent drugs (Prograf, Rapamune, Imuran), Prednisone, and doing the photo treatments. So my immune system is extremely suppressed right now. So their theory, is that maybe if they discontinue something, my immune system will regain its fight some and that I will feel better and have more energy. But that will be a decision that everyone has to agree on. It seems like things need to be balanced. On the one side, you don't' want your body to reject the lungs. But on the other hand, you don't want your body to stay so immunosuppressed that you keep catching things and feel sick all the time.

I'm going to also undergo a few stomach tests to make sure I don't have any acid or reflux issues. I've been through multiple tests before, and everything is always fine. I got another "lecture" today on how sometimes you don't' always "feel" the reflux, but it can be causing problems, especially with transplant patients, which in turn can make you have trouble breathing,be fatigued, etc. I refused 2 of the tests they were going to redo, but agreed to another one, that is less invasive.

The team also decided that I needed to be followed more closely in clinic and not once every 3 months. Although, I usually end up going at least one other time in between that 3 month period anyway. So they want me to return to clinic in 2 weeks, and have the bronch before then.

I feel like I'm being experimented with. It's getting SO SO FRUSTRATING and I'm tired of being tested for all these things, and yet I never get an answer. I know the doctors wish they had an answer too, and I will do everything I need to do to get an answer. It's just really hard sometimes. I've been subject to this my whole life with CF. And when you get a transplant, you expect to be relieved of this stuff for the most part. Normally, you don't have all these complications post tx. But then again, I still wouldn't trade them for anything, because I am still so thankful that I am just alive today and able to live a much normal life than pre-tx.

Please pray for answers and that all these upcoming tests will go smoothly over the next month or so. While I don't want any tests to turn up positive, a positive result would mean an answer and possible treatment to feel better. It's a difficult decision. Please pray that I am able to keep up with my school work and still be able to work and continue with my daily activities.

Christie was given the clear to go back home to Tuscaloosa today. She will return once a week for clinic visits. I know she is thrilled and will recover much more quickly and comfortably at home.

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.