Neverending

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

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

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

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

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

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

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

Clinic Results

I mean to post this update yesterday, but got busy! I had my follow-up transplant clinic appointment Wednesday from when I was in the hospital recently. Unfortunately, it didn't go quite as I expected....wasn't horrible, but not good either.

My PFT's were slightly lower than the visit in December, but higher compared to September/ last Fall. My FVC was 1.58/47% and FEV1 was 0.99/37%. I usually don't have that big of a gap between the two numbers...so I was a little surprised. My midflow (FEF 25-75%) was 0.33 or 10%. Performing the tests today definitely stirred me up....evidently I've got a lot of junk inside (sorry, probably TMI).

In December, my FVC was 1.49/44% and my FEV1 was 1.10/40%. My midflow/FEF 25-75% was 1.05/31%. In November, my FVC was 38% and FEV1 34%. In September, my FVC was 35% and FEV1 33%. So today's #'s were better than September and November of last year. They weren't really concerned and neither was I. And plus, my PFT's don't always accurately reflect the way I'm feeling.

My WBC count was really high @ 15 something. Mine usually runs around 3 or 4...so definitely indicative of an infection. I haven't had a WBC count that high in probably 2 years. But the weird thing is, my WBC count with this last pneumonia was only 8 something...which is still pretty elevated for me. So we were all definitely shocked to see this number. I don't think I'm contagious in that aspect since I've been on antibiotics. However, I'm going to pay extra attention to those around me that might have colds, the sniffles, etc., right now.

I'm really frustrated and "tired" of being sick and not being able to knock out this dang infection. I knew I had pseudomonas growing in my sinuses from my ENT visit (and more than likely in my lungs again), but didn't expect it to be that bad. My xray looked ok, about the same as it was in December, and much clearer than with this past pneumonia. I am very dehydrated as well...which I had a feeling I would be because I've been thirsty like crazy. Also, in the lab this morning, it took them 5 sticks to get blood...UGH. They said my veins were dehydrated. Of course I'm not sure exactly how much of the dehydration caused the difficulty verses the skills of the lab technicians. One tech did get a vein, but I didn't have any pressure/blood flow to get into the lab tubes--weird.

I have completed 2 weeks of Cipro and about 1 week of inhaled TOBI. We (my doc and I) are hoping the TOBI as well as the final week (week 3) of the oral Cipro will help clear this infection up. I also did another sputum culture to check sensitivities, since we are now dealing with a lung infection and not just sinuses. I didn't realize you could have different sensitivities in the lungs verses the sinuses. If I haven't improved much in the next week, then my doc said we would probably have to do IV antibiotics...which STINKS that this is happening again so quick. Hopefully though, if that is necessary, we will be able to arrange home IV antibiotics. That will allow me to still attend classes. I definitely don't feel as bad as I did with this last pneumonia... I'm not as SOB and are not running any fevers. So as long as I don't feel worse, the home IV's will work (of course this is only if the TOBI doesn't kick in). So we'll see what happens over the next week. If you feel led, please pray that this infection resolves quickly, and that it won't interfere or put me behind in my classes again.

My doctor that I saw today did mention that it seems like these infections are brewing when I'm on my "off month" of the TOBI or not on any kind of oral antibiotic. He suggested alternating the inhaled TOBI with inhaled Colistin. I'm not too thrilled, as I don't want to be on antibiotics 24/7. But I guess if that is what it takes to keep me out of the hospital this semester, then I will do it. I haven't used the Colistin since before my transplant....so I'll be interested to see how it works.

My weight was up 5 pounds from December, which is really good, considering I had lost about 10 pounds with the gallbladder issues/surgery (which is a lot for someone my size). I'm very happy that the weight is starting to come back on :)

My back pain is doing better...still there and extremely painful at times...but definitely getting better. I've had to cancel my 2 therapy appointments this week due to a school exam and today due to not feeling well. I'm really going to try to be pro-active and stay well (which may include missing some classes if it is really cold weather outside). We are supposed to have possible SNOW (not just flurries) on Friday. I'm anxious to see if the weather people are right this time :)

At last but not least, I have a neurology appointment on Friday morning to evaluate the extensive shaking I'm having. I thought it was much better, but has been worse the last few days. Although I'm mostly noticing it in my hands verses my entire body like it had been doing awhile back. I'm sure this will be an interesting appointment...not looking forward to answering a million questions :)

Ok...so a long post...sorry. I hope everyone has a great Thursday...almost the weekend.

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!

R.I.P. Richard/Clinic Update

As Kori stated: Richard graced the gates of Heaven today at 12:26 A.M. Since I was at clinic early this A.M., I found out right away...around 7:00. Please keep Kori and the family in your prayers! Since Kori and Richard lived locally to me, I will be going to the funeral this Saturday and possibly visitation on Friday.

Clinic Update: Well, I managed to escape Club Med, but only slightly! I came home with inhaled TOBI and oral Cipro to try and knock this infection out! My PFT's were down about 7-8% (41/39); my WBC count was down to 2.3 (last time it was 5.8), my creatnine was high (1.4, and I usually run 0.8 or 0.9), and I have lost about 8 pounds...not good! So the culprit...some sort of infection. Hopefully these two strong abx will knock it out! If i'm not better by the 1st of next week, well, then you can probably finish that sentence! NO TIME TO GET SICK...work, class, TOO much to do and it's only been 1.5 months since my last admission!

It's been a LONG morning! I didn't get out of clinic until about 11:30. I'm now home..planning on taking a nap before class at 5:30 until 9:50. A friend of mine from Texas is staying with me tonight and tomorrow night. We have plans to go to the lake tomorrow, although my coordinator wants me resting ONLY and not tubing or water skiing. So we'll see. She didn't want me to go to class either, but tonight is our first lab class, and I really can't afford to miss it. If it wasn't the 1st class, I probably would opt to stay home! I'm supposed to start work back on Friday (more info in a post to come), but may postpone it til Monday due to being sick and the funeral/visitation for Richard. We have our annual CFF Gala Saturday night as well (which I know I will be out from about 4:30 to midnight volunteering).

Clinic Report

Today I had my follow-up transplant clinic appointment from being in the hospital. I'm happy to say that the appointment went really well! My PFT's were up (44/46)! This is actually the best they have been in a long time..so yay!! My chest xray had improved since the hospital as well! All my lab values were pretty good too: My WBC count was: 5.4 (due to the prednisone); Magnesium: 1.8; Creatnine: 1.0; HCT: 28 (low....but they won't do anything about that); and my BUN was 23 (which is much better). My 02 sats were 94%, which is ok, but not great. I'm still not happy with that number. But they were pleased with it for now. I'm sure they will get better!

I got the "ok" to go on my cruise. And I got clearance to attend the CFRI conference! He gave me a prescription for Cipro to take prior and/or during the cruise if I need it. Hopefully I won't need it, but I have it just in case, which is nice!!!!

I have restarted the Advair Inhaler back for my wheezing. So we will see if that helps. I have been wheezing the last few days. I am now also off my prednisone taper. My doctor wants me to get my wheezing under control before I start the inhaled TOBI antibiotic. He said that TOBI can actually cause broncho-spasms. And he doesn't want that to make my wheezing worse. So that's fine with me. We will follow up with that in a few weeks.

So overall, everything went extremely well. And as long as I am feeling ok, I can wait to return to clinic at my September appointment!!!

I also got permission to take some Motrin, Aleve, etc. for my knee pain. Hopefully that will help with the pain and the inflammation. We aren't allowed to take much of "ibuprofen" like drugs, post-transplant, because it is very risky for our kidneys. But my kidney function is really good right now, so he said I can take it for about 1 week. Hopefully it will heal QUICKLY so I can get back into exercising!!!

Changing subjects: Brandi and I reserved our hotel room today as well as our plane tickets! We are flying out that Wednesday prior to the conference and returning Sunday evening!! I'm excited!!!

Hospital

Well, the doctor admitted me to the hospital from clinic this morning...UGH! I had actually felt a little better yesterday, and was hoping to escape being admitted. However, this morning/today, I felt so much worse. So I'm glad to be getting some relief. They think it is just a bad infection or bad bronchitis. My xray did show a spot on it, but they aren't sure if it is pneumonia or not. Regardless, they thought it was best to put me in. My chest sounded pretty congested according to the doctors. I was coughing my head off all morning during clinic and most of the day today. I was having a really hard time breathing. I had chest pain, chills, wheezing, etc. I know when I got back to the exam room in clinic, i looked awful. Most of my labs were ok....i'm extremely dehydrated. My creatnine is 1.5 and I'm usually under 1.0. So they are supposed to be pumping me full of fluids (just what I like....NOT!!!) My magnesium was 2.2....WOW!! (and I actually haven't taken any in awhile). My hct was 30, which is great too. My WBC count was 4.1 (a little higher than usual, but not bad). My weight has also dropped pretty significantly. So hopefully once I start feeling better, I can put some pounds back on. They have put me on the same 3 IV abx as the last time I was here since they worked so well: Vancomycin, Tobra, and Fortaz. And I just completed getting all 3 of them!

And once again, our transplant unit is full, but I've been told I should be moved by Friday. Dr. Y is on call at least for the remainder of this week, possibly longer....UGH!! However, he was very sweet and sympathetic towards me today. I didn't see him in clinic, but he rounded late afternoon. He really took me seriously (probably because I looked awful). So hopefully he will be ok this round! At least I have a nurse practitioner to handle things as well.

I had to wait on my bed assignment in the admitting waiting room earlier today. Usually they send me straight to a room from clinic, but one wasn't available yet. It was awful. I was so cold that I had a sheet and blanket covering me up on top of the jacket i was wearing over my shirt. I was shaking, breathing hard, coughing, etc. I think I got so overwhelmed and feeling so bad that I started panicking. I started crying and really feeling like I was going to pass out and throw up. And every time i stood up, i was dizzy. I didn't think I was going to be able to wait on the room to become available. So plans were in the works to find a chair somewhere to go ahead and start meds. But thankfully, my room finally became available, and I arrived in it about 1:30 or so. I immediately layed down on the bed and probably cried for over an hour. This is SO UNLIKE ME....so not sure what was going on...i just felt so bad, was in pain and felt like I couldn't breathe. The nurse practitioner finally came around and got orders put in. I got IV phinigren for my nausea and Lortab for pain. And then it wasn't much longer when I got Benadryl for one of the IV meds. I feel much calmer now...but not great!

So that's all the details for now. I will update again soon. My laptop computer is actually not working, so I'm borrowing Brandi's for tonight. Her dad is bringing a 2nd computer up this weekend for me to use...how sweet! I think I would go insane without a computer up here! On a side note: Brandi got admitted today for her usual CF tune-up, so please keep her in your prayers as well. Overall, I'm pretty frustrated with the whole situation of being sick AGAIN (and 3rd hospitalization this year). But I'm thankful I'm here and able to get immediate relief.

Sorry for the delay in this post! I'm hoping to get some good sleep tonight! Please pray that I will bounce back quickly, and that I can move rooms very soon to our usual transplant floor. I'm currently in W606 for those that usually ask where I am each time I come in. Thanks again for all of your recent comments and prayers!

Back at Club Med

So I spoke to soon. I woke up this morning with high fevers, major chest pain, sob, coughing, etc. I called my tx coordinator and she told me to come to clinic. And sure enough I have pneumonia. My xray showed right lower-lung pneumonia, and my WBC count was up as well. I felt SO SO bad this morning. I felt like an 800 lb man was sitting on my chest. So they admitted me to the hospital. I'm guessing I will be here awhile.

I'll update more later....don't feel very good right now.

Clinic Report

Well....this morning I awoke at 5:30, and made my way to my transplant clinic appointment. I was a little concerned, as I am continuing to spike fevers and feel sick. I'm still coughing up nasty junk, very short of breath, tired, and just overall, sick. Everything went pretty smooth this morning. There were only 7 patients scheduled for the day. However, I didn't get out of there until about 11:30.

The good news is that I don't have pneumonia! But I do have a respiratory infection (which to a CF patient is very common...but to get them after transplant, is not so common). My PFT's were down from December 3rd. My FEV1 was down to 33% from 43% and my FVC was down from 43% to 35%. The number though that the transplant team looks at the most is the FEV25-75% which was 0.93, down from 1.29 on December 3rd. All my labs were pretty good. My WBC count continues to be low (2.7), which right now they are contributing it to an infection. My chest xray was clear.

So the plan...continue the Cipro. My doctor felt like it hasn't had enough time to kick in yet. If I'm not feeling LOTS better on Monday, then he will add a 2nd oral antibiotic. But if I get worse or continue to run fevers, I am supposed to call! I was sort of hoping for IV abx...I know...you are probably saying what? why? Well, the reason is that I rarely have any luck with oral abx, because I'm sensitive to only 1 or 2. AND--I want to be feeling 100% prior to the start date of my internship. But it's ok, I'm happy with the plan right now! I've been doing albuterol breathing treatments, which seem to help. And I think I will continue them at least for a few more days. It's always weird when I do them because it takes me back to my "CF Days." My doctor did want to get a new sputum culture, so see what my sensitivities are and to see what bugs are growing. Unfortunately, I can never cough stuff up on the spot! But lately, my cough has been pretty loose. (But of course it wasn't at clinic...never is). He gave me a breathing treatment to see if that helped..but no luck. So if I'm successful, I will take one by the clinic on Friday; if not, he said not to worry about it!

I have another photo session next Monday and Tuesday. I told my coordinator today that it would be my last one..that I'm quitting! She is going to talk with another doctor (my fav and the head of the tx program) to get his thoughts on it. And of course I want to know his thoughts as well.

I did not have to see Dr.Y today at clinic (the one I've been mentioning). YAY!! The one I saw is my 2nd least favorite..but it's been 7 months since I've seen him, so I was VERY thankful he was there and that a new set of eyes, hands, ears, etc. examined me and actually did something about it. And he did seemed concerned and that he cared...and for me, that's all that matters to me!

On another note...I had to cancel my other (2nd) GI test yesterday, because I just couldn't get out of bed, and didn't feel like going in for a 2 hour test. However, I did get the results back from my ultrasound on Monday. Evidently, I don't have such a hot gallbladder! The report had some terms that I wasn't too familiar with. Basically, my tx doctor said that the stuff that the gallbladder produces (bile) is getting clogged up or something like that. Or...another possibility is gallstones. I need this 2nd test to give more detail and to tell us what exactly is going on with my gallbladder! This was one of the GI doc's main concerns! So I guess he was right...and ordered the right tests! Hopefully I can get in for that other test next week (hopefully).

I am supposed to get together with some family tonight to just relax, play games and have fun! I'm going to take a nap, and hopefully I will still feel like going. The next few days are going to be filled with LOTS of rest! Although I would love to go shopping :)

I hope everyone has a safe and happy New Year! I wish all the best for you in 2009! And for those of you that are going to be out partying tonight...please be careful. It's sad to say, that most of our transplants happen around holidays like these. I know we need the organs, but I hate to see them come in this sort of way! So PLEASE--be careful!

Love to All (more posts to come later with more updates on stuff)! I have to NAP now!!

Where does the time go???

WOW! I can't believe it's Saturday, and more importantly, that I haven't posted all week. SORRY!!

So where do I begin??? It's been an EXTREMELY BUSY and CRAZY week. I've had finals this week and have been working a lot of overtime at work, including 5 hours today (Saturday).

Monday night I had a final after work. Then I went to Sips N Strokes with Ashley and painted a beautiful Angel picture :)

Tuesday I had another final after work. Then I had a Christmas Party with the the church i babysit for. Tuesday night I did not sleep well and was coughing the majority of the night. We also had bad weather too.

Wednesday morning I worked, then had my photo treatment session that afternoon. Before photo, I visited with Emily, to see how she was doing. After that, I came home and took another final exam. That night, I woke up randomly at 3am throwing up....which lasted awhile. I pretty much felt crappy the rest of the night.

Thursday morning I had photo again until 12:30. Then I had a meeting with one of my professors at 1:00 to evaluate my clinical paperwork. After that, I went back to work until about 6:45. Then I went out to dinner with a friend of mine who was in town from Louisiana. He has CF and had a transplant 1 year ago, Friday. One of our nurses from HTICU joined us as well. I felt better Thursday, but was still dragging, and just flat out exhausted.

Friday I worked all day (from 8:15 to 7:30 pm.) When I got home, I ate dinner then had to do some last minute flow charts for my clinical class and turn them in to my professor.

Today (Saturday), I went to work at 8:30, left at 1:30 pm. Ran a couple of errands, and here I am. I have our Christmas Party for our Sunday School class tonight.

Tomorrow (Sunday), my church is having their music concert during Worship hours. And then the church my parent's attend (my former church) is having their Christmas concert tomorrow night, which I will be attending with my parents. I love hearing Christmas music, especially at church, and love worshiping with Christmas songs.

SCHOOL IS OVER FOR THE SEMESTER. And as far as I know, I made all A's...which I am ecstatic!!! I had 5 hard classes, and this has been the most intense,stressful and difficult semester ever. Not just the courses, but trying to keep up from being sick.

Next week is busy, but not too bad! Classes are through...and that's all that really matters to me right now. I'm very exhausted and are still battling some sort of lung stuff...whether it be just a cold, infection...who knows. I would really like some cooperation on the part of the doctors..or at least a little concern. My lab values from Photo were ok...WBC Count dropped back down to 2.4 and my HCT is a little low too!

I promise I will post again soon. I actually have a post I want to do based on last Sunday's sermon at church. Maybe I will do it tonight. For now...I'm going to take a quick nap!

I hope everyone is having a great weekend!

I can't believe Christmas is less than 2 weeks away!!!

Frustrating Day

Quickie:

It's been a LONG LONG and frustrating day. I'm not going to go into major details...but wanted to write a quick update in case time takes control of me.

Clinic went fine...pfts, lab work and xray were all good. However, I feel like crap...very crummy. Usually my labs do not show when there is an infection due to being so immunosuppressed...they never have. The doctor I saw seems to not really care and pretty much dismissed everything. Which kinda of ticked me off. That's fine with me, but when it comes back to bit him in the....it's gonna serve him right. I don't make up these symptoms...coughing up junk, fatigue, and shortness of breath. I'm very active and choose to be able to work and go to school. I don't like my health interfering. But when it continues to do so for several months and nothing is done about it, this is usually when it will take a turn for the worse.

Nevertheless, in addition to clinic, I had to get my flu shot and my port flushed. Technically, I'm not supposed to get a flu shot within 1-week of my photo treatments (which I have next week). The photo technicians are very adamant about it. However, this particular transplant doctor didn't seam to care and said he wanted it done anyway. It's not that I care one way or another about actually getting the flu shot, but I tend to try and follow the guidelines.

I skipped my ENT appointment as I didn't get through with everything until about 2:00. And my appointment was at 2:30 about 20 minutes away. I felt horrible and tired, and really wanted to go home. I came home took a brief nap, got up and took a final exam, and then I will leave for work in about 1 hour.

I'm tired and very frustrated and very fed up with some of the transplant team. It's almost pointless to go to clinic if the outcome is going to turn out like today. And to get there at 6:30 and not leave actual clinic until 11:00...that's ridiculous, and in my opinion is not really worth it.

One final interesting fact about today's appointment is this: My WBC count was up to 4 something. It's been in the "2"s and even lower. I have not had my photo treatments since September and one of the theories was that the photo was suppressing my white blood cell count on top of the medications, etc. I think it's interesting that the wbc count was up today and are beginning to think there may be a connection. Hint my idea of stopping photo might not be so bad after all. However, the 2 doctors that have those theories were not at clinic today, bummer.

Well, I've got a long day ahead of me tomorrow....and just really don't feel good and are very very frustrated. I guess all I can do is trust God and have faith that everything will work out for the better and just go on with my life. It's not that I don't trust HIM to take care of everything, I just get frustrated sometimes and feel like I'm this little hole in the wall...and sometimes are not really payed much attention to.

Oh yea...my friend Brandi is in the hospital right now for her routine CF tune up. She got admitted last Monday and will be in for a total of 3 weeks. Please keep her in your prayers!

Clinic

The dreaded Clinic...I don't think I'm ever going to go back (j/k..I have to). But seriously....rough day. It took 5 sticks in the lab to get blood. Ugh! Then soon after I find out that one of my best CF friends past away last night. Then I get into clinic...wait a good while. I couldn't go get something to eat, in fear that I would miss the doctor. I woke up at 5:15, left the house at 6:15, signed in at 6:45..and lo and behold...I was #2 on the list! Evidently, luck was not with me today, because I saw the exact doctor I didn't want to see. So of course, nothing was done...except encouraging me to get a GI consult regarding my recent weight loss. So I'll probably go ahead and get the consult, just to be on the safe side. But as far as my chronic fatigue..not really sure. My labs showed that I was dehydrated and my WBC count dropped from 2 weeks ago. My PFTs were also down, but then again, I didn't have the energy to put behind them. I'm probably going to email another doctor tonight to get a second opinion. The other possibilities are that I am still too immunosuppressed, that my body cannot fight off these viruses I keep getting. So one doctor would like to see me stop the photopheresis to see if that helps bring my energy and WBC count back up. Also, it still could be Mono. Or thirdly, it could just be the chronic rejection. But today I felt like I've never been so fatigued in 4+ years. So we'll see how things play out.

Tomorrow I am volunteering and speaking at our local CFF Golf tournament. I've done this for the past 3 years. I'm excited, and are just praying I have the energy!! Tomorrow afternoon/evening I will travel along with a few other people to the visitation services for Angel (about a 2 hour drive). Then on Friday, I will attend her funeral service, and will have a few people tagging along as well. I'm going to try and work a little Friday morning before leaving for the funeral (which is at 12 noon). Lord give me the strength and energy to get through the next few days.

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.

Results

This morning I went for labs...ah..such a pain when you don't have any veins. It took 2 sticks to get enough blood and the final stick was in my wrist where they get blood arterial gases...

Anyway...here are the results:

Prograf: Still WAY WAY high...which explains my nausea and shakiness. So I'm decreasing my dose and will get it rechecked next week at clinic.

Magnesium: 1.6...which is pretty good for me. You would think it would be higher though after 2 rounds of IV mag.

HCT: 36---WOW!! I don't think I've ever had it that high. The blood must have done some good...to bad I feel like it's a "2" instead!

Kidney Function: A little elevated, but more than likely due to the high prograf level.

WBC Count: 2.4-which is up a smidge..but still wish it was higher. That's still pretty low. But I don't think they are too concerned now...it depends on which doctor you talk to.

Parvo results: My coordinator said, that they are NOT completely sure it's negative. The doctor yesterday got her to order a follow up test on it. So now, I have to wait for those results. FRUSTRATION with a capital "F."

I have had ZERO energy today. I woke up this morning feeling like I had been asleep for 5 minutes. I had to get up at 5:30 to get to labs early so I could get back to work as close as to 8:00 as possible. I dragged throughout the whole day. Boy...I would give ANYTHING for energy!

Last night I fell asleep in my bed while studying for my midterm tonight. I didn't quite get everything studied that I need to. Evidently, I left my highlighter opened and it bled through my sheets and left a nice yellow circle. As I've been told, I fall asleep in the middle of studying and doing school work quite frequently. HINT the pen marks on my sheets and comforter.

Christie, my CF transplant friend, is doing great! We saw each other this morning while we were getting labs. She made a cute joke earlier today that we should just build a condo on top of UAB....(since we are both there so much). I thought that was pretty funny...but so true. I feel like I live there 1/2 the time (which is NOT supposed to happen after transplant).

Oh well....back to studying...not looking forward to the midterm...wish my luck...or rather pray that it goes well. I know I need it!

Parvo Virus

Today I had to go my coordinator's office to get a school excuse, in order to make up an exam I missed last week. I was already at UAB doing my clinical and visiting several CF patients, so it was very convenient. While in her office I asked her if the results from the Parvo virus test were back yet. There were...and it was somewhat interesting. Evidently there are two immunoglobulins (IgM and IgF) that indicate whether or not you have the virus. One of them, indicates if you have it actively, and the other indicates if you have been exposed to it or had it in the past. I don't know a lot about this, and probably need to research more. These immunoglobulins are triggered probably by the antibodies in your blood. Evidently, the one that indicates I've been exposed to it, is positive. The active one is mostly negative. This may not mean anything. However, she asked me she doesn't know how I would have been exposed to it. So that's a concern. Also, it could mean that I did have the virus recently, and when they drew the lab work last week, it wasn't actively present, or showing up on my lab results. So this could have been the cause of the virus and all of my symptoms. Or it may be nothing? My coordinator is confirming this with one of the transplant doctors, and will let me know.

I knew something was up by looking at her face while checking the results. Usually...if it's a done deal and very evident, any coordinator will jump out and tell you it's negative. I watched her looking at the computer, and she looked at it for too long of a period, and kept saying "hang on." I return in the morning to have more lab work done, and will call my coordinator tomorrow to find out the results from that. At that time, hopefully she has an answer to the Parvo situation. The Parvo virus can attack your immune system, and cause a low WBC count. It also has characteristics of making you anemic and decreasing your magnesium level, both of which has been going on. So it would make perfect sense, but I don't want to jump to any conclusion!

My clinical went well today. Although, I set my alarm for 7:00 am, thinking that's when I needed to get up. Well...oops! That was when I was supposed to leave. And I've been doing this clinical since June. I guess I just wasn't thinking. I stayed at my clinical until 12:30. Then I had lunch with Brandi, a CF patient. Then I walked a couple of blocks to the Children's Hospital for my study visit. Then I walked back to UAB to visit with Brandi a few more minutes. Then I went and saw another CF patient. And then finally, I went to pick up my excuse. I left UAB around 3:45 (by the time I got out of the parking deck) in route to my next appointment, physical therapy for my back. I got home around 7:00, ate dinner, and are now about to study for a midterm I have tomorrow. BUSY BUSY DAY!!!!

I will update tomorrow! Pray for answers!!

Quick Update

I wanted to write just a quick update!

I am feeling better, but still not 100%. I'm very tired, since all last week I was sleeping a good portion of the day. In addition, my iron levels may still be low, I'm not sure. My nausea also seems to not want to leave me alone. I go through phases when I am nauseated all the time, and others where I'm not. I've been nauseated a lot over the past week. Also, as of Sunday, my prograf level had skyrocketed, so if it hasn't dropped yet, that could also be causing nausea. I haven't eaten anything yet today.

I am returning for lab work Thursday morning. We will then evaluate where my WBC count is, and what my magnesium and hematocrit levels are. Hopefully by then, we will also have the results from the remaining virus test. All I want is answers!

I am also returning to clinic next Wednesday. And then I will have photo the following week. So at least I will be around my doctors and be getting lab work for the next 3 weeks (including this week).

Tomorrow I have another CF study visit, to start back on the 28 days of the inhaled Aztreonam. I'm not really thrilled about starting it back, but don't want to quit the study, because I know it is very beneficial to our CF research center. So I am going to try and stick with it.

A CF Blogger friend of mine, Katelyn, sent me a sweet care package while being hospitalized! She was so sweet to think of me. Thanks Katelyn!

Also..Christie, a recent CF transplant, who I have blogged about a few times, was discharged from the hospital today to the Townhouse. The Townhouse is like a hotel/apartment where transplant patients stay for at least a few weeks when they don't live in town. Christie only lives about 45 minutes away, so she will probably only have to stay here about 1 week. She is doing awesome, but still has hurdles to jump in this recovery! By no means is it easy!

Going Home

So I am escaping from the hospital this afternoon. My antibiotics were discontinued last night. The doctor I saw this morning (who was the same as yesterday) thinks I have something viral and it is just going to have to run its course.

My WBC count is lower today than yesterday. He still thinks it is drug related, but wants me to be set up with hematology just to make sure. And he wants me to return to clinic in a few weeks.

I still have a few tests awaiting results, and he said my coordinator will call me with those results.

I'm really tired, have a headache, and are breathing a little harder today. It will be good to be back home. I have decided to take off work tomorrow, and return on Tuesday.

I'm also behind in school work, so have a lot of catching up to do. Thank you for all of your comments, and prayers! I really appreciate them.

Hospital Day 5

So the doctor that has been on this week was on the unit this afternoon, and I requested to speak to him to discuss what the other one told me this morning.

This particular one, does agree that what I have is a bad virus, and that the iv antibiotics are probably not necessary. He was planning on stopping them anyways (which I didn't know). So at least they both agree on that. And I'm fine with it now, knowing that is his opinion to. However, he does believe I was infected with some sort of bad virus, maybe mono, or something else. And whatever it is, will just have to run its course. The doctor that saw me this morning, acted like nothing, not even a virus, was going on, and that I should not have been admitted. Of course, he didn't see me earlier in the week, either. And I had 2 different doctors that wanted me to be admitted.

The issue upon which they disagree is my low WBC count. It is up to 2.3 today, which is better, and going in the right direction. However, the doctor I saw today, believes it is from a drug I'm taking, and the other one that's been on all week, believes it is being caused by the virus or something else, and is still somewhat concerned.

I feel like this particular doctor is somewhat biased, and the one on this week agreed with me as well. And he said he will uphold his opinion until he is proved wrong. WOW! Totally different sides on this issue.

I think the part that bothers me the most is why this doctor I saw today, questioned the fact of why I was admitted. I don't think anyone should do that, especially when I had 2 other doctors that made that decision.

So as long as everything goes ok tonight and tomorrow, I will be discharged tomorrow. I am supposed to contact my coordinator Monday and schedule a day to recheck my WBC count and to keep monitoring it. The doctor who has been on during this week also said if my symptoms continue, then to call and come to clinic. So I'm basically going behind this other doctor's back. But he does this sometimes, and never is a very proactive person.

So, as of tonight: Final Diagnosis: VIRUS with associated anemia (which the blood did make me feel better)

PLAN: Discharge tomorrow (Sunday) and continue with my normal, daily routine and activities, which means work and school. I will probably take off work Monday if I'm discharged tomorrow, but go back on Tuesday.

I will update again tomorrow. The only thing that we are waiting on is the results from a couple of more viral tests. So unless, those come back positive, I'm certain I will go home (which I'm fine with).

Oh yea..., my CF friend, Brandi who is admitted as well, brought me Steakout for dinner tonight. It was a great change from hospital food. Thanks Brandi!

ROLL TIDE!!!!

Saturday Update #2

Well, I just saw the transplant doctor who is on service for the weekend. I hate the fact that there will be one doctor on service for the week, and a different one on service for the weekend. Almost always, each doctor has their own opinion. While I like each one of the doctors on our transplant team, it gets very frustrating when each one tells you something different.

The doctor I just saw doesn't really think I have anything. He thinks the low WBC count is due to one of my immunosuppresent drugs, Imuran. Evidently, it is known to suppress the bone marrow in the body, especially when you have some sort of a virus. So he basically, doesn't have any other explanation, and really doesn't think there is one.

On the respiratory side of things, he really doesn't think anything is going on either. He thinks it's probably just a virus, and thinks the iv antibiotics are useless, and not necessary to continue. (that really pissed me off). The doctor that admitted me did so for a reason, I didn't ask to be admitted. And my symptoms were all respiratory related, including cough, wheezing, shortness of breath, fatigue, etc. And the initial plan was to do home iv antibiotics anyway since I had already been on the oral abx that would work. So now, to just have 4.5 days of iv abx...kind of ticks me off. Who do you believe??

Then he asks me or rather states, "You aren't having any sinus issues are you?" And I replied with a "yes, I've been having sinus issues, and think this is all where it started from. We've been trying to knock out the pseudomonus my ENT cultured about 1month ago." Then he asks me why isn't it documented? Well, I don't know. But I sure did tell the doctor and CRNP that admitted me. But then again, he thinks the iv abx will be pointless, and thinks that I should be discharged tomorrow. I don't have a problem with being discharged, but I do have a problem with not continuing the iv abx. Rather, I'm really really frustrated with his plan. I guarantee you if the other doctor from this week was on right now, he would probably keep me a few more days and let me continue the abx at least at home. It's almost like you have to convince some of the doctors you are sick, because they just don't believe you. Why and how could I fake wheezing, coughing, shortness of breath, fatigue, etc. And why would I want to do that? I have a job and are in school full time. I want to miss the least amount of days possible. I didn't ask to come in the hospital, but thought I needed it and it was for a good reason.

So, now I really don't know what to think. I'm kind of in a foul mood right now. One of two things are going to happen: Whatever this is, ends up being just a virus, and it runs its course, and everything is ok. My WBC count will come back up. Or, 2)this is some sort of respiratory infection, it doesn't get knocked out since he is stopping the abx, and it later turns into actual pneumonia. And if that happens, you know good and well, who I will blame for that.

Sorry for my ranting...I'm just really ticked off right now.

Saturday Update

And so the craziness begins once again!! I just saw a doctor from Infectious Disease, and now they are saying that I DON'T have Mono. They did a more specific antibody test for it and it came back negative. So now we are back to square one.

I think the respiratory stuff isn't really the main issue. It's still probably broncho-pneumonia or upper respiratory infection. The issue is what is making my WBC count to be so low. We are still waiting on results from a few other tests. I haven't seen my transplant doctor yet, and probably won't until later on this afternoon. I just wanted to go ahead and update regarding the Mono. So once again, I DO NOT have Mono (which is great, but now we don't have an answer).

I didn't get much sleep during the night last night because I was hooked up the majority of the night until about 3:30 A.M. I eventually took a Trazadone for sleep and IV phinigrin, which pretty much knocked me out until about 11:00 this morning.

My parents are coming up a little later this afternoon to watch the Alabama Football game.

I will update later tonight once I have more info and have seen the transplant doctor.

Hospital Day 4

Today has been a crazy day. The doctors are continuing to run multiple tests to figure out why my WBC count has been extremely low. I'm still being treated for broncho-pneumonia. The diagnosis of Mono still stands. So...I have broncho-pneumonia and Mono. What a combination!!!

I have felt a little better today, and are mostly contributing it to the antibiotics. My hematocrit is also really low for some reason, so I am about to receive a unit of blood. I usually run around 30, and today it was 24, so that's kind of a big drop. Hopefully this will also give me more energy.

I have not been able to sleep at all during the day today due to multiple things going on. It seems like they keep coming up with different things to test me for. And the Infectious Disease people aren't completely sold on the Mono. They think something else is suppressing my bone marrow (immune system). So they have requested that a few other tests be done (all of these are lab tests, for the most part).

There is no talk of when I might be able to go home. I know some of these tests take 3-5 days for the results to come back. So I will probably be here until we get those results. It could be Monday, or next Friday. I really have no earthly idea. We have a different doctor on call for the weekend, and the one that was on call this week, will be back on next week.

Christie and I have been able to have some good talks. Our rooms are right next to each other. I also have 2 CF friends that are in as well. Although I can't leave my unit, one of them came to visit me on Thursday, and I text the other one throughout the day. For CF patients, once you have a transplant, you are seen solely by the transplant team. You have no more contact with the CF team, and if you have to come in the hospital, you come in on our HTICU (Heart and Lung Transplant ICU).

I kind of held off on visitors today due to the Mono diagnosis. But I think it will be ok for visitors to come as long as they aren't sick, and if it's a CF patient, they wear a mask. Not just because of the Mono, but also because I basically have a non-existent immune system.

I'm going to try and lay down and maybe get some rest. It's so hard to sleep in the hospital, hence the sleeping during the day. And I haven't been able to sleep all day, so I am really anxious to get some rest for the night.

As always, thank you for your continued prayers. Please pray that if anything else is going on besides the two current things, it will show up quickly and that it can be treated. Usually with viruses, they have to run it's course, and the only thing you can do is treat the symptoms.