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 :)

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!!

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.

Hospital

I know this is way over do. I have been in the hospital pretty sick since last Monday-Jan. 10th. I developed a very very sudden and severe small bowel obstruction and have been fighting it since. I had an NG tube up until this past Tuesday. But after that, things turned the wrong way again, and another tube was put back in. The tube came out again this afternnon, so I'm hoping it can stay out. We are still working on resolving the obstruction. I had hoped to be home by now, but things are just moving a lot slower. Upon admission, i was extremely sick and very acidotic. i had no bicarbonate in my blood. In addition, i had been in extreme, extreme pain. Luckily the pain is better.

THey have started me on clear liquids right now. I will have to remain on a full-liquid diet for about 2 weeks before resuming a solid-food diet. THis will be hard, but know it is necesarry. Please pray the obstruction will clear itself very quickly. Pray that the NG tube can stay out. Pray for improved strength, and energy. Also, just as importantly, pray i will be able to catch up on schoool stuff. I have missed a lot of stuff.

I'll try and update again soon!
Thanks!!!

Hospital Day #6

Going on day #6 in the hospital. I have cabin fever really bad. As I mentioned before, I had hoped to be back in class yesterday (Monday) or at the latest by today for clinicals. Unfortunately, that didn't happen. Hopefully Thursday will be the day. I will still be going home on Home IV's though. I have several things on Friday, including a Nursing School Luncheon that i'm working at and a CFF Young Professionals Board Fundraising Event. I also have a Pathophysiology test Monday.

My Heart rate over the weekend was higher than it had been earlier in the week. On Sunday, my doctor decided to walk me around the nurse's station and monitor my O2 saturation while walking (since my Heart Rate had been higher). He got a reading of 83% (which wasn't good). I'm not entirely sure it was accurate. I re-walked myself, while monitoring it later that night, and it ranged from 87-90%. So it's still too low. I also am having some really low BP readings (one day is was 80/38). They held my BP med yesterday and today. And tomorrow they are starting it back but at a much lower dose.

So the doctor on call this past weekend, suspected that maybe something was up with my heart. So I had an ultrasound to check for DVTs (deep vein thrombosis...blood clots). I also had an ECHO today. The ECHO technicians kept talking (which I hate when I can't see the screen or they "talk behind my back." However, one of the techs asked me if I knew I had pulmonary hypertension. I said no....no one has ever said that and I never have had it. So I'm guessing I might have some now? A little worried about that.

So..my heart rate is still really high...but other than that, everything is going ok. Still need my O2 sats to get better as well. I can tell that they are low, because i'm getting these massive headaches.

I did have a rough day yesterday morning with nausea and throwing up. And then that sent me into tons of pain. So yesterday was definitely not a good day. No sleep at all. And plus I was drugged with so many meds yesterday including pain meds, that today I've been really sleepy.

My clinical instructor from school came by and saw me today on her way to our unit where we do our clinicals. I wasn't as nervous as I thought I would be with her coming by. She was really sweet. And it looks like that missing clinicals this week is not going to affect me passing the semester, because I had been doing really well so far. We'll see.

Ok...so I'll update again soon!

Hospital

Ok, so I totally thought I posted Wednesday morning after my doctor's appointment. But I guess not. Needless to say, I got admitted Wed to the hospital (HTICU) after my appointment. I did go home and pack a bag, then came back. So going on day 4 being in the hospital.


The main reason I was admitted is because I wasn't responding to the oral antibiotics with this infection. I'm only sensitive to 1 oral abx (Cipro) and it wasn't doing the trick. So IV abx was really my only option. I really didn't expect to be admitted...seriously..and was kind of surprised that is what they wanted to do.

The original plan discussed during clinic was to come in for a few days, then go home on home IV antibiotics. Plans change all the time, and honestly, I don't know when they are going to let me go home. I have clinicals this week for school (pre-clinical Tuesday then clinical Wed and Thurs) so I really want to be out by Tuesday morning. I'd like to be home by Monday. I thought I would be going home tomorrow, but that's out of the question.

Nothing really different to report other than the same ole stuff. I'm getting IV antibiotics, and just being watched carefully. I had been having these episodes of chest pain, which know one has identified the cause to yet. In some respect, they are monitoring this, but the main doc said I could come for some tests as an outpatient that he didn't want me doing them with an acute infection.

I'm trying to walk as much as possible. Today I've been much more SOB and have had a much higher heart rate while walking. But hopefully that will get better.

I told myself I would study today. Did that happen...NO!! I'm watching the Alabama Football game now. Maybe study tomorrow. I'm so behind :(

I'd appreciate your prayers for a speedy recovery and for everything to work out with school. I'm stressing big time about school.

I hope everyone has been having a good weekend

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!

Quick Sunday Update

This a brief post, but wanted to post an update like I promised.

Once again, the lungs are good and keep getting better. My energy is pretty good as well. I am still off the oxygen, and finally getting some breathing relief. The stomach is still giving me major problems. I went through so many narcotic pain meds last night, it was insane. I was in tears for several hours (and I have a HUGE HUGE pain tolerance). I finally got some relief at 2am with a dose o Dilaudid (spelling..sorry). This was after 2 does of Morhpine, oral Ultram, and IV Toradol. The Toradol took a minimal amount of pain off, but not near enough. They wanted me to try that 1st since it easier on the stomach. The Dilaudid worked like a charm, and I was finally able to get some rest. The nurses are in awe and very shocked when they see my stomach get as distended as it's been doing each night. There is still no answer...and FINALLY, my doc ordered a GI consult for tomorrow (Monday), as well as an Abdominal ultrasound and xray, in which I had performed today. I think the ultrasound may have shown some things, as she brought up the fluid that I have had around the area, and she was clicking away on pictures of my abdomen.

The same pattern presented itself today. Tummy was fine this morning and mid-day. It gradually started getting distended, and by 7pm or so, I was in extreme pain again. I got a dose of Dilaudid, and hoping i knocks the pain out for good (at least for tonight). I will update tomorrow, with hopefully some answers.

My new goal is to be discharged Tuesday morning where I can still attend my Physiology Lab Class that night. Keeping my fingers crossed.

Saturday Update

Once again, sorry for no update until now. The computer I was using sorta crashed, and I was unable to use it at all. I am borrowing Brandi's computer, and very thankful she is allowing me to borrow it. Thanks girl! Brandi just got admitted Friday, so if you haven't visited her blog yet, go ahead and let her know you are thinking and praying for her.

As for me...the lungs are doing good...much better. I am now completely off oxygen. Last night was my 2nd night off the O2, and my oxygen saturations seems to be holding ok. I've definitely got a little bit more energy and definitely feel better. I'm not completely better...but definitely on the road. My goal is to still go home Monday on home IV's, so I can attend classes on Tuesday. We will see!

I ended up getting a unit of blood yesterday (Friday). My HCT dropped 3 more points from Thursday, down to 19. So that gave me a little more energy as well.

As far as my tummy....it really sucks. It has not gotten any better, and last night was probably the worst night. It descended majorly...looking like I was pregnant with triplets. It really was uncomfortable and the morphine was helping much. I managed to tolerate it after 2 rounds of IV morphine and finally fall asleep. Of course this morning is was better. It has started to distend as of now (4pm CST), and I'm not sure what will happen. Several people (nurses, docs, etc.) were really pushing me to get an NG tube to get the air out. I've been really trying to avoid it. I can handle anything else accept for NG tubes, and was seriously traumatized by them after transplant with my bowel obstruction. I talked with my doctor this morning and he said it was entirely up to me. And he wasn't 100% sure it would cure the problem either. He said we could watch it today and see what it does. He is more than willing to give me some more pain medicine to see if that helps. And if it doesn't, he will probably order an ultrasound. The xray only shows air/gas, and I'm doing everything humanly possible to resolve it. I hate this and it's more frustrating that we don't know what is causing it to build up in my stomach. We know it's not an obstruction, because everything is functioning in that area. He has cut back on one of my oral antibiotics: Azithromycin. I usually take this M, W, and Fridays, but the doc who admitted me changed it to every day. So my doc now is changing it back to M, W, Fridays like normal. Please pray that this issue will resolve itself ASAP and it won't affect me going home. I'm still sick and not over this infection/pneumonia, but feel good enough to resume treatment at home, so I can keep up with classes.

The only other issue is my sinuses. I am still congested in my head and cannot hear out of my right ear at all. And none of this has resolved since admission. Usually the IV antibiotics help with that. So I'm not sure what we will do about this. Because a lot of the times, my sinuses are the cause of the lung infections.

I hope everyone is having a good weekend. I will update again tomorrow. Oh...and ROLL TIDE!! BAMA IS #1

Wednesday morning update

Sorry for not updating again until today. Monday was a really good day. However, yesterday was not. I spent the entire day, literally, throwing up due to a new medicine they had started. Feeling sick and throwing up made my heart rate stay high and I constantly felt like I was out of breath. Therefore, I was on oxygen all day yesterday. I am feeling much better today, and praying things will finally start going in the right direction.

Evidently, I'm only sensitive to very few antibiotics right now that will treat this infection/acute pneumonia. The cefipeme, that I was getting, was not one of the sensitive medicines. There was only one 100% antibiotic that was sensitive to my bug, and that was Meropenem. Well, evidently it is in the same class at Zosyn (which I'm allergic to), so it really made me sick. Consequently, I didn't eat anything all day. The docs removed the Meropenem and switched to Ceftaz. It is only intermediate sensitivity, but hopefully with the Vanc and Tobra it will be ok. However,now, it's basically like starting over with a new antibiotic.

I did have some visitors Monday, and may have a few today. I'm definitely ready to get out of here, but my body is definitely just now beginning to fight this infection. And plus, I don't have oxygen at home, and don't want to have to use it at home either.

I am missing my 1st day of classes tomorrow, which really sucks...I'm so mad. But I can't do anything about it, unfortunately.

Please pray that things will only continue to move FORWARD and not backwards. I hope everyone is having a good week. I promise I will update more frequently.

Baby Steps

Sorry for no update until today. I haven't really felt great at all these last few days. But I feel like today could be a turning point.

Yesterday I was able to eat 3 meals, which is a 1st in a LONG LONG time. And I really hadn't eaten anything in about 1 week. So that is definitely a praise! So hopefully the nausea will hold its on, and I can continue to eat and gain some of this weight back that I have lost.

Yesterday I was having a really hard time breathing. I had been on continuous fluids since admission (Thursday) and that on top of eating yesterday sort of sent my heart rate over the top. I couldn't get it below 130. I knew it was from the fluid, because my stomach was exceptionally full and big and it was pushing on my lungs. I finally got the on call doctor to discontinue the fluids. He also said I had some edema, some excess fluid, so he gave me a dose of Lasix, which seemed to help a little. Not having those continuous fluids has been a huge relief and I have been breathing much better today. Last night was very rough and I was very restless as well. They ended up giving me a dose of Ativan, which seemed to help calm me down a little.

Right now the infection is due to pseudomonas bacteria, which is usually the culprit of all my infections. The antibiotics I'm on are currently sensitive and should cover the infection pretty well. So my doctor wants to continue with what we are currently doing. My WBC count
is down to 5, which is better for me. I usually hang around 3-4. My kidney functions are much better as well.

I have still been using the oxygen. However, I just had some visitors stop by and I decided to take off the oxygen about half way through the visit to see how I felt. When they left, I checked my O2 saturation and it was 95...YAY!!! So I'm hoping that at rest, I can remove the supplemental oxygen and just use it with activity, walking, etc. (and possibly at night while sleeping). That would be a huge step as I have been worried about the oxygen usage.

My hematocrit level is 21, which is pretty low. My nurse practitioner wants to make sure it is true anemia and not from the fluids. If it is true anemia, then they will more than likely give me some blood, which in turn will probably make me feel much better, or at least give me more energy. My favorite doctor came on service today along with an NP. I didn't have an NP upon admission and through the weekend. My guess was because it was a holiday and weekend. So I'm glad to have an NP, because it makes communication so much easier.

I'm still feeling crappy, but feel like I have made some baby steps toward getting better. I really wanted to be out by Wednesday so I could start classes on Thursday, but doubt that will happen. We'll see though. I'm not putting it out of the question just yet. If I can get off the oxygen, then he would probably let me go home on home IV's..maybe.

Thank you for your continued prayers...they definitely mean a lot to me and really work. This is a tough infection that hit me hard out of nowhere...totally unexpected. I hope everyone is staying warm and well!! And I hope all of you have a blessed week! I will update again tomorrow!

Hospital

I apologize for just now posting this. I got a lot sicker Wednesday morning. My coordinator had me come in to get labs and chest xray, then sent me to our outpatient room on our trasnplant floor. My xray actually looked ok; my labs were a little off, but not too bad. My doctor decided to admit me to see if we could figure out what was going on. I was begging inside that I would get admitted because I felt so bad. I am having the hardest time breathing. It's the worse it has probably been since before my transplant. I had to use a wheelchair to get around while I was getting my labwork and xray done. Right now, I get so out of breath just walking to the restroom, which is probably 5feet away.

They are waiting on cultures to come back to see what's going on. This breathing is serious. They have me on 3 liters of oxygen, because my O2 saturations were dropping below 90. I am on 3 IV antibiotics right now and albuterol nebulizer treatments around the clock. I have also been throwing up for the last 3 days or so. So I am taking IV phenergan and Zofran around the clock as well. I haven't been able to hold anything down and haven't eaten anything really since Tuesday morning. My fevers have seem to subside. My creatnine and some other kidney functions are out of whack. That's understandable....and they have me on continous fluids right now.

I will try and post updates when available. I'm not feeling like doing anything. And I literally can barely breathe....looks like I have a ways to go before being discharged (that's not even in the plans right now). Classes start next Thursday, so I'm praying I will be well by then.

I hope everyone had a great New Year's Eve and Day today! May God Bless the upcoming year for all of us.

Ultrasound Report & More

Apparently the ultrasound I had on Thursday to check out the fluid in my abdomen turned out normal. The only thing they saw was pelvic fluid. I was told by my regular GI doctor that the pelvic fluid was normal, and just sympathetic womanly fluid. I may discuss that with my GYN though just to make sure. My GI surgery nurse coordinator was going to ask my surgeon if there was anything else she wanted to check out. This was Thursday, and she never called me back. So I guess not. It's a little frustrating, because my stomach is really big, bloated and pregnant looking and very uncomfortable/painful at times. I'm praying that maybe I just need a little more recovery time and that will get better. The more frustrating part is that I can only eat very little and only certain things. I haven't gained any of my weight back yet, which can be concerning and dangerous. I have to talk with my transplant coordinator again on Monday to see what they want to do about the liver lab values being too high.

I really don't want to have to schedule more appointments or go back to my regular GI doctor right now. (at least not before Christmas). So we'll see how this next week goes, i guess.

I worked 12 hours yesterday (Friday)...work is so slammed right now and I really need the extra/overtime hours. Our boss had approved a half of day (4 hrs) for everyone to work today (Sat) and really wanted everyone to come in. I had plans on it, but just couldn't get out of bed this morning. After the stressful week and pulling 3 all-nighters, my body was aching for some sleep. So I decided to just that. We also had a CF event going on today which I was helping out at. But with not feeling that great and with it being frigidly cold outside, I decided against that too. Tomorrow I have a few fun things planned and are hoping I feel good and energized for those. I have to fit some studying in as well for my final Anatomy lecture exam this coming Wednesday, although I'm not even sure if it's possible to pass the class now. I'm so upset and stressed with that!

I hope everyone is having a great weekend! I should have time not to keep up with blogging more frequently. I'm not sure how many of you follow Brandi's blog, but we have a dear CF friend of hours who recently was transplanted. She is having some complications including 40 lbs of fluid build-up, a severe aspergillus infection and induced pneumonia from the aspergillus. They put her back on the vent last night. So if you feel led, she could definitely use your prayers. Her name is Lauren and she is a sweet heart. She has no family or friends down here with her, and her mom is in end-stage cancer, and was just turned over to hospice yesterday!

Surgery SOON!

My surgery (to have my gallbladder removed) is Monday. I have to be in the admissions area at 6AM...EARLY!!! But hey, I'm all about EARLY as I want this done and over with NOW. This week has definitely been a struggling week: missing work, missing classes, including my final lab class before the final exam. The pain is unbearable, with some days not even being able to stand up and walk. On those days, I'm basically sleeping, taking pain meds constantly and using heating pads constantly. So, needless to say, i am SO SO ready for the surgery. I've also lost about 6-7 pounds (not good for my little petite body). I'm taking anti-nausea meds around the clock, and food just isn't getting along that great with my stomach. I did manage to work the last 2 days...trying to get in extra hours since I will be off work all of next week.

I will update Monday-hopefully-depending on how sleepy and drugged I am :) I will be admitted to the hospital right after surgery to our transplant ICU; as far as how long I will remain admitted is unsure of right now. Definitely until Tuesday; the estimate is Wednesday. Hopefully I will be able to enjoy Thanksgiving with the family and get back into the normal day-to-day routines! It just all depends on how my body tolerates the surgery and recovery. Unfortunately, I have some sort of cold, and my wheezing is out of the roof...crazy and very annoying and making it hard to breathe. I'm hoping everything is just related to sinuses; but it does make me a tad bit nervous about Monday. My blood pressure has been sky-rocketing, which is unlike me. But my transplant coordinator feels it is due to the pain; (so that's my hope too). The pre-op nurse at my surgery consult appointment last week wasn't too pleased. But I assured her it was being taken care of.

Please pray that everything goes well with the surgery and recovery!!! This weekend I will be resting, running a few errands, building a lymph node for an anatomy extra credit project, and last but not least, studying for anatomy lecture and lab finals, which are the week after Thanksgiving. I hope everyone has a great weekend!

Gallstones, really?????

So...here are the results from my GI tests I had done last week. Very surprising....and totally unexpected. The tests were ordered to check out the fluid around my liver to make sure it was not anything bad. I had the tests (ultrasound and Doppler of abdomen and associated organs) at our Children's hospital which was kind of nice. The technician I had actually performed some tests on me back in 2003, and he remembered me. We had some great conversations and he was the nicest person. It was kind of nice being in a "children's setting" again.

Evidently, the fluid is fine. Some of it is pelvic fluid, and is apparently just there because I'm a female. And some of the other abdominal fluid is "sympathetic" fluid and supposedly a lot of CFers have some. So no worries in the fluid department. Now, for the shocking news: I have a BIG (4.22mm to be exact) gallstone (and possibly more that are just unseen). The ultrasound made this evident, but it it is believed that it has been there for sometime because ultrasounds don't always show gallstones. Unfortunately, the stone is too big too pass. I am having surgery to remove it (and the gallbladder from my understanding) the 2nd week in December right after semester exams. My GI doc feels like it can wait til then and really wanted me to be able to finish up the school semester. I'm with him on that decision!!! I have a consult with a surgeon at UAB who will be performing the surgery probably sometime this month. My GI doc can't do the surgery, because he only has admitting privileges at the Children's hospital. In addition, because of transplant, I have to have it at UAB. I will be on transplant services, and the surgeon will just consult everyday. From what I've read and been told, the surgery isn't too big of a deal, but I will be in the hospital for a little while. I think I will feel so much better.

As I researched more on gallstones, it sounded like I've been having gallbladder trouble for awhile. Back in January I spent a whole day in the ER throwing up bile (TMI sorry) and I had several tests indicating my gallbladder was not emptying properly. It was a "bad" winter/early spring in the stomach department. But for some reason it took until NOW to figure that out. I've had multiple ultrasounds, but without contrast. And without contrast, it is difficult to see gallstones. Having gallstones can also cause fevers and mild to severe back pain. And most of us are attributing some of my severe (putting me to tears) back pain to this gallstone. So I'm ready for that to go away. My weekends and whatever time I have free, I'm usually laying down with heat on my back, and taking Ultram, Lortabs, Aleve, muscle relaxers, Tylenol, etc. I'm so tired of being in pain. The pain may not all be related to the gallbladder, but I am definitely interested to see how much of it is. I hate that I have to have the surgery. At least it won't interfere with school, but it means taking at least 1 week off work, during our busiest time of the year. But oh well, you got to do what you got to do, right?

So that is basically the gist of the results. My liver is enlarged a little due to the gallstone. I have "ascitis" of the liver. So that should go away after the gallbladder is history. I also started on Actigall to help remove other small stones and "sand" which apparently my GI doc thinks I have as well. It will also help to prevent future gallstones. I looked up ways to prevent gallstones at home, and there really isn't much you can do. It did say to make sure you eat, that starving yourself isn't good. Not that I starve myself, but I do have days when I feel sick or times when I'm in the hospital that i will go for a good while not eating or eating very minimal. It also said to avoid foods that are very high in fats. I do a pretty good job of that already. So we'll see!!!

Have any of you had your gallbladder removed? I know it is common among CFers. I would love any feedback, suggestions, etc. The surgery is laproscopic, but I haven't had any surgery, per se, in about 3 years...so a little nervous. I'm also a little worried about the whole putting to sleep thing since my lung functions are not good. I'm sure there is nothing to worry about!

Recap: About Me Part IV-Final Post

Here is the About Me Part IV Recap 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 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 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. My Dad told me the weather was horrible that morning too. My Dad called one of our friends, who is 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.

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!

Under-the-weather

I've been feeling a little under the weather lately, and feel like I'm getting worse and not better! UGH!!! No time to be sick! So I called my transplant coordinator and are going to clinic in the morning. I have a scheduled appointment next Wednesday and REALLY REALLY wanted to hold out until then, but my coordinator really wants me to come. I'm still debating...but I guess I will go! I'm just not looking forward to getting up at 5:30 AM!

I've lost about 6-7lbs, which is a little more weight than I can afford to lose...that puts me at about 90-91 pounds. I've also had a low-grade fever a couple of days, chest pain, sob, major fatigue, and major wheezing. I'm praying I can escape clinic with some oral abx!

I have a friend coming in from Texas and she is spending the night with me tomorrow and Thursday. We are going to the lake on Thursday, providing the weather is good! So I am excited about this and really hope I feel great!

I have class tomorrow night too...and this is the 1st night for our anatomy lab class...so i'm definitely curious, but not looking forward to more studying :) My lecture and lab class last from 5:30pm-9:50pm (long night)! I've got to get organized and start studying EACH night for this class, or come test night, I'm going to be in deep trouble!

ALSO...I start back work on Friday...yippee!!

I have some exciting news to share with you, in which I will post about later this week!

Also, for those of you following my updates with Emily, she was scheduled to get a trach put in today. She has kind of taken a backward turn, so we are praying she will turn around in the POSITIVE direction quickly!

Update on Emily

Please continue to pray for my friend Emily! As her lungs have gotten MUCH better, the plans were to extubate her this past Thursday. Unfortunately, that has not happened yet, as she has hit another obstacle! Her kidneys have completely shut down, and they have started her on dialysis as of Thursday night. We are praying this is just temporary, due to some of the medicines she has been on. Yesterday was a tough day, as she was extremely agitated, and throwing up as well. Extubation is not out of the question, but has been put on hold until she is stable once again! Please pray specifically for her kidneys to start functioning (even with the dialysis), for her to remain stable so she can come off the ventilator, and for God to give her a peace about the situation so they can get her agitation under control. She is now approaching about 3 weeks on the vent. She is still at UAB on HTICU. We know God is right there with her, holding her hand! Thank you for your continued prayers!

For those of you that have not been following her blog, or my updates, Emily is a CF/transplant patient who became infected with the swine flu! You can click here to visit her blog, in which a friend of hers updates almost daily!

Back to School

Today I start back to school...or college rather! I am beginning my pre-requisite classes for nursing school!! Yay....I'm very excited!!!! Not that I'm looking forward to studying again, but that I'm one step closer to my dream career!!!!

My classes will be Monday nights from 5:30-6:45pm and Wednesday Nights from 5:30 to 9:50 PM!! Since I can't officially start the nursing program til next August...I am spacing out my pre-req classes instead of taking them all at once!

It was nice to have the summer off....no studying, no classes!!! Now I'm adding 2 more years of school...UGH!!! But at least I have a degree to fall back on if I need too!!!

I have been babysitting like crazy...people calling every day...people asking for the same days....very crazy! But I've considered it a blessing...because I've needed these jobs this summer to have a little income!

Oh...and for those of you following my updates on my friend Emily (CF/transplant who has the swine flu)....she breathed on her own for 6 hours yesterday!!! The doctors weren't even sure if she would be able to handle 30 minutes!!! But she surpassed their expectations! We are praying that she can come off the ventilator fully by Thursday!!! God is definitely good and has definitely been answering our prayers!!! Thanks to all of you who have been praying! Please continue to do so! If she can continue on this track today of coming off the vent....then she can avoid getting a trach put in. She's been on the vent for about 3 weeks now. My hope is that I can actually talk to her this weekend since I will be up on our transplant floor at UAB.