Almost done!!

I never would have thought that my blogging days would be so few....who knew?

Anywho...the semester is almost over. I have a final exam Monday, Tuesday, and Wednesday and then I will be done!!

YAY!! I made it through the 1st semester of nursing school....i can't believe it!!! I'm so proud of myself!!

So i promise more blogging time now that i'll have a break from school. I really haven't had a break from school since last Christmas since i only had 1 week in between spring and summer semester and then in between summer and fall semester. So i'm really looking forward to it.

In the health world...things aren't so hot. I starting "dragging" last weekend. Then Monday and Tuesday i got sick....real sick. I missed class Tuesday morning and had to suck it up and go to clinic on Wednesday, which caused me to miss class then too (which was the last week of school--so that sort of sucked). I went to clinic and labs and xray were ok...but i definitely had some sort of respiratory infection because i had been running low grade fevers and had coughing, wheezing, fatigue, and "all of the above." So I got an oral antibiotic to add to my inhaled TOBI. I started feeling a little better yesterday and feel a little better today. If for some reason I don't keep getting better or backtrack, then they said they will do a bronch and restart IV abx. So I'm just praying i make it through next Wednesday. My PFT's had dropped a good bit (but I also haven't done them since June)

So dinner and movie at a friend's house tonight. I've really enjoyed hanging out with my friends i've met this first semester of nursing school! I really hope that some of them are in my clinical groups next semester!

Off for now...but promise i'll be back SOON!!

Random

This is a very random comment....

I figured out a way to make me take a quick shower and not linger.....have a cockroach on the celing above you :)

I HATE bugs...especially cockroaches. I spent the whole time talking to the cockroach while in the shower making sure he wasn't moving any closer to me.

Sorry...I know that was completely random :)

On another note...we have fall Break this week. We get a whopping 1 day off of school. It's technically 2 days, but we are always off on Fridays. This doesn't mean no studying...just no classes. And my Thursday is already booked with appointments. I have my mid-term evaluation with my clinical instructor. I also have a CFF Meeting.

I travel to transplant clinic tomorrow. My health has been holding up, but over the last week or so, I feel like I'm going downhill. I've also started to spike low grade fevers over the last few days. I'm also extremely SOB and more tired than usual. So I'm leaving class early tomorrow (which is a 1st) so I can get to clinic in time. They only have transplant clinic Wednesdays and most of the time they are done by 12 noon. I have to go at 6:00 am to get labwork and chest xray. Then I'm going back to class at 8am until about 10:00 am then hopefully be over at the hospital/clinic by 10:15. Thankfully campus is right next to UAB Hospital, where my transplant center is. And thankfully our instructors are not teaching us anything new tomorrow in skills lab since we are off on Fridays. We are just reviewing what we learned last time. So...I'm hanging on by a string, and I still think it's awesome and feel blessed that I have not been in the hospital since January. I plan to keep that going...but may need a boost of something. I never knew how stressful and exhausting this would be!

I still have the 3 fractures in my foot. They discovered at my last appointment that I have 2 stress fractures instead of 1. I don't really have any pain, but my ortho doc said it would take 6-8 more weeks to heal (and that was 3 weeks ago).

I'm sorry I'm lacking on blogging. Today is the 1st day I've sat and watched TV for a few hours...and that's only because I skipped my morning class and they let us leave early from our afternoon class.

I started watching the news coverage of the Chilean (is that spelled right?) Mine Rescue. I had no earthly idea this had happened. I told my Mom that I need a current event review every few weeks because I never get to watch the news...lol! Isn't this rescue amazing!!

I will post a report from my clinic appointment tomorrow!!

Transplant Clinic Report

I had a transplant clinic appointment this past Wednesday. Overall it went pretty good. My lungs sounded good, lab values good, and PFT's about the same.

The Lisinopril seems to be working pretty well for my blood pressure. I am still monitoring it and may be stopping a medicine soon to see if it might be causing the high blood pressure. The Lisinopril is also known to cause high potassium levels (hyperkalemia); My level was normal at clinic Wednesday, but higher than it usually is. So I will get my levels re-checked sometime next week.

I have been feeling run down and have had a cough and tightness in my chest, lack of energy and shortness of breath. I am finishing up my last week of TOBI and really didn't feel like the TOBI was helping get rid of this infection/cold at all. So my doctor put me on 2 weeks of Cipro.

I'm having to be extra cautious and really proactive with my health right now, since I'm starting nursing school. I really want to be able to go through the entire program without getting pneumonia or having to be hospitalized for any reason. Since my transplant 6 years ago, I've never gone an entire year without pneumonia or bad lung infections that have required IV antibiotics. While I can do home IV's, I usually have to be admitted for at least 1 week to get a boost on feeling better. So this will be a big adjustment for my body, but praying that it will cooperate! I really have had a good run since January's pneumonia hospitalization this year.

I am going to make sure I get the pneumonia vaccine at my next clinic appointment.(I've never had one, but the transplant team puts it on our list of things to get, but it's never been mentioned to me). I still have a few more vaccines to get that are required for nursing school.

Please continue to keep me/my health in your prayers! Also, my hands seem to be shaking worse, despite being on the medicine that is supposed to help/take it away. It may be due to stress, back pain, etc. But I really need steady hands for nursing school, and don't want this to be a hindrance during labs and clinicals.

MIA/Update

I promise I'm still here and plan on blogging. My schedule has just been way to crazy. So I apologize. I hate not having the time to blog :( I'm up late studying, and couldn't stand the thought of me not having posted anything since the 1st week of July.

We had our Nursing School Info Session on Friday. We ordered our uniforms and registered for classes, amongst other things. We have a more detailed orientation session the week before classes start. I have a CPR class on July 16th;

My Blood Pressure Saga continues with a new medicine as of Friday. So far, it is magical and doing the trick. Last week we had increased the dose of HCTZ (the diuretic), but for some reason, my BP decided to get worse, instead of better, or even just stay the same; overall, the HCTZ was good for removing the fluid I had gained, and really keeping off any excess fluid I may be retaining, but not much in the Blood Pressure situation; I am now on Lisinopril, and my BP has dropped dramatically within just 2 doses of it; But it may be just a tad too much; not sure yet. Will re-address with transplant coordinator on Monday.

My back pain seemed to stabilize and actually get better, until I decided to go tubing on Memorial day weekend. However, finally, it has calmed down somewhat. I had taken a break from my physical therapy appointments, because I didn't want to use up all my visits too soon; I decided to go in for an appt week before last, and I will go again this week; so hopefully that will help.

Two exams next week (Micro Lecture Exam) and midterm for Microbiology Lab Class. And other assignments, etc. for my online Developmental Psychology course.

Babysitting tonight for several families combined

Our local CF Chapter has a Young Professionals Board, in which I am a part of. We have a get-together/meeting Tuesday night. Oh, and our CF chapter finally got its results in for our local (Birmingham) Great Strides Walk. As most chapters are required to send all the money/collections from each Great Strides Walk to a third party now, it takes awhile before everything gets credited to the Great Strides teams, walkers, etc. So far, our Miracles Team has raised a little over $8,730. We may have a few more donations coming in; I'm very proud of my team and all their hard work; and I personally met my goal of $4,000.....raised about $4,375.

I have transplant clinic on Wednesday. I'm on week 3 of my TOBI; i think a Sinus infection has creeped in my body (hoping that's all it is); I have to get all my medical forms signed and vaccinations required for Nursing School Medical Clearance.

Babysitting this upcoming Friday, then headed to the lake for the weekend. Unfortunately, we don't get a day off from classes, like most companies/work offers for the July 4th Holiday.

I really want a beach vacation. Trying to decide about oil spill situation....and if I can go due to my crazy schedule, that works with the other parties involved???

Ok, going to try and get some sleep :)

It's Over!

FINALLY!!! A break from school! I finished my last final Tuesday morning....and I am so ready for some rest. My body has never been so stressed in my life. Not just from school but a few other things too, such as back pain.

So I promise to post more often now! I don't start summer classes until June 1st. I will post more later..but here is a quick update of what's going on and what's to come:

My back is still continuing to give me major pain. I have a very high pain tolerance...so when I'm in pain to where I'm in tears, can't sleep, can hardly move sometimes...it's bad. So we are exploring some options. And I know some of it will get better now that all the studying is over for awhile (because I was spending 4-6 hours sometimes straight studying).

I had a transplant clinic follow-up appointment today. Everything looked good as far as lab work, chest xray, and PFT's. My PFT's were actually up quite a bit and they were very pleased. If I can just get the back pain under control (and having a few stomach issues), we will be good. The only bad thing is that my blood pressure has decide to sky-rocket! It's been fairly high..or rather, on the "edge" between normal and hypertensive probably for the last 6 months or so. I had mentioned it multiple times to the doctor; they didn't really seem too concerned, and it would sort of level off when I would start monitoring at home. But then over the last few months it has steady pretty high. At my neurology appt about 2 weeks ago is was 164/96...so it prompted me to start monitoring it at home again. It remained pretty high. Not as much for the systolic pressure (the top number) but for the diastolic (bottom number)...which is more concerning. And today at clinic, it was 183/115. So needless to say, I have started on blood pressure medicine.

I do have an update from my neurology appointment as well, that I will share in another post. The appointment was in regards to my excessive hand shaking.

I am supposed to find out in about 2 weeks if I have been accepted into nursing school.

I'm preparing for our upcoming local CF Great Strides Walk. We have almost met our team goal...just a little more to go....very exciting! I had plans on volunteering at a few the last few weekends, but was too tired, stressed, and in major pain...so had to miss out. But we have several others coming up, which I'm planning on attending.

I have another speaking opportunity next week as well.

So that is a brief update (although, i guess the length of the post wasn't really brief..lol).

More later...I hope everyone has been having a good week so far!

Weekend Wrap-Up

Once again, here is an update post from the last week or so. I promise I will get back into frequent posts, it has just been a little crazy, especially with school.

A lot of my "free time" has been spent studying. I had two more exams last week. My next exams are in about 3 weeks. I also have a project due in 2 weeks for my Nutrition course.

An update on my health: things have been pretty stable lately. The only thing really bothering me is energy level and just being really tired. I'm hoping to get back into exercising soon, now that my back pain has subsided some. I finish my TOBI inhaled antibiotic on Monday. I will give myself probably a week or so to see how I feel before approaching the subject of starting inhaled Colistin. I am hoping some of my lab values have returned to normal from the last clinic appointment back on February 10th. My transplant coordinator has not made me come back to get them recheck. She is just going based on my symptoms. I will probably go to clinic for a follow up appointment in April, if all goes well the remainder of this month.

In about 2 weeks, my 2nd most busiest time of the year will begin. April and May are always insanely busy. One reason is because I'm taking classes again. Also, we have all of our CF Great Strides Walks within those 2 months as well. And I always try to volunteer at as many as possible. I also have 1 wedding in March in Louisiana, and another one for a cousin here in April. Then there are several birthday parties, Easter, bridal tea, etc. Also, I am continuing to speak for the UAB Benevolent Fund, which coordinates and controls which charity organizations UAB supports. I spoke the last week in February. I'm speaking again this coming Tuesday, then again on the 24th and 30th of March .

I have also had a few babysitting jobs recently, and have a few more coming up. I hope those continue, as its my only source of income :)

I'm still finalizing a few decorations in my room. I changed out my light switch plate on the wall. It was the basic bright white standard plate. I bought a bronze metal finish one at Target yesterday. It matches my decorative accents in my room as well as the wall color better than the stark white.

I'm hoping to get my curtains (Valences) up tomorrow as well, but I need my Mom's help on that one. I also bought a decorative ottoman-like stool for the end of my bed. I wanted something to put there that I could use to set clothes out one, etc. In my former room upstairs, I used my big, nice chair for stuff like that. But now my chair is out in the den, because there wasn't enough room in the bedroom. I love this stool...it matches my room perfectly (especially my wall art above my bed). I wanted two of them, but HomeGoods only had 1. I've been checking back frequently to see if any more come in stock. One of the ladies that work there said they should get some more in...so I'm really hoping they do. The company that makes this particular decorative furnishing is only a wholesale businesses and I can't find any online stores that carry their products. We only have 2 HomeGoods stores in Alabama. So if any of you ever see a duplicate to this...let me know :) I really want a 2nd one!!

The design matches my wall art almost perfectly!!!! And the material of the stool is suede-like just like my comforter on my bed!!!

If any of my blog followers are local and are not participating in a CF Great Strides Walk currently, I highly encourage you to do so! You can click on the Great Strides Widget at the top right of this blog for a link to my personal team. Or you can send me an email! SUPPORT CF!!

I think that is about it...not much to report.

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.

Tuesday Tid-bits

Sorry for the lack of posting this past week. It's been very very busy. So once again, this is sort of a "catch-up" post.

*Tomorrow I have my follow-up transplant clinic appointment from being in the hospital. Hoping to get good results....really have no idea how things are going to turn out since I'm still fighting the pseudomonas.

*School is busy...I had a physiology lab exam last Thursday and an exam in my nutrition and health course today. It was pretty hard, so not sure how I did. I do feel pretty good about my lab exam though, but won't get my grade until this Thursday night.

*I had a great birthday weekend. I can't believe I'm 25 yrs old...yikes ;)
My parents took me out to dinner Friday night.....and I had some really really good food. My mom and I went to get some ice cream afterwards at Coldstone Creamery. Brandi and I ate lunch out on Sunday. We had a good time and she was sweet to treat me to some good Chinese food. Sunday night we did cake and ice cream at home. And the birthday celebration will continue this week as my parents will give me my gifts probably this weekend. So it's been a stretched-out birthday....kinda nice. My brother's birthday is the 19th!

*All of my wall art/hangings are finally up in my new room...yay!! The last thing to do is put up my valences on the windows. The scrapbook room is completely done...now if I can just get some time to actually scrapbook. Here are some pictures of it:

*It is freaking COLD COLD here, especially the last few days...and will continue throughout the week. Maybe some snow flurries this weekend???

*I have been given an opportunity to speak to a group of people about CF/transplant at UAB next week...very excited about that.

*I am hoping to make some progress on my Great Strides Team this weekend...as far as writing my letter, sending emails, etc. The walk will be here before I know it.

*I have been busy babysitting the last 2 weeks....4 jobs in 1.5 weeks...pretty good. Now, if I can just keep that up, i would be good. I'm hoping to get one or two Valentine's jobs this weekend, but I'm not entirely sure if it will happen or not.

*I can't believe Alli from The Batchelor TV Show chose her job over taking a risk and staying for Jake. I don't normally watch this show, but for some reason have been hooked to it this season. I'm rooting for Tinsley now :)

Well, I think that about wraps things up! I will post tomorrow with a clinic report. I hope everyone is having a great week.

Post-Christmas Update

Wow, it's hard to believe Christmas is over. It's also hard to believe that I haven't blogged in almost a week and didn't blog on Christmas Eve or Day..sorry! I definitely had plans to blog and actually a couple of things to share. Oh well! LONG POST AHEAD!!!!! Quite a bit of updating, and hate to split it up. Sorry!

It was crazy around our household....working until the 18th, cooking, cleaning, babysitting, parties/get-togethers,family, shopping, etc. We had a great Christmas. My mom and I went shopping the day after, and found some good deals. I really enjoyed it and it wasn't that bad, as far as the crowds and traffic went.

I am actually working this week (Monday-Wed). The place where I have been working was going to have a really small skeleton crew, and the manager asked if I wanted to come in and cover for the girl I had been working with. I jumped at the opportunity (especially since it meant earning a little more $$$). It was really slow today.

I had a transplant clinic appointment on the 16th. It went pretty well. My PFT's had gone up a pretty good bit, my 02 sats were 99% (which is the highest they have been since April or May this past year). All in all it was a good appointment. We think that some of the breathing and 02 sats have been better due to the removal of my gallbladder. My shaking has continued to be really bad, and there are setting up a consult with a neurologist, just in case something is going on.

I am still having a really difficult time gaining my weight back. I lost about 12 pounds before/during/after the surgery. I have yet to gain 1 pound back, and I am at a whopping 86.5/87 pounds, which is NOT good. I am really trying, but my stomach is really having a difficult time eating a lot at once. I'm also experiencing a lot of nausea, which is interfering as well. Hopefully this will turn around soon. I hate it...and none of my pants/jeans fit me right now. I had to go buy 2 new pairs of jeans.

I am all registered for classes this next semester. I am taking Physiology (the 2nd part to anatomy). It will consist of a lecture class and a lab class. I am also taking Nutrition, which is one of the pre-nursing electives required. I'm excited and praying this semester will be much less stressful :)

I have been off and on as far as feeling good. I have been really exhausted and not sleeping the best. I have had a really bad sinus infection for several weeks now. I started on some oral Cipro back on December 11th and are taking it for a total of 3 weeks (21 days). I only have a few days left. I am also on my month of TOBI (and are a little behind on starting it).

Today, unfortunately, I had not been feeling the best, but though it was just my sinuses and being tired. About 2:00 or so, all of a sudden, it hit me. I felt awful. I managed to stay at work until about 4:20 (our day ends at 4:30); I checked my temp in the car, because it felt like I had one. Sure enough I had a low-grade temp. I got home, unloaded and climbed in the bed, and checked my temp with a different thermometer (instead of the one that stays in my car 24/7). It was higher at 99.8 (which is high for me). Currently, my temp is 100.9 and is not going down with Tylenol. I have no idea what is going on. My chest is hurting, back aching, coughing up junk, and very sob. I hate this, especially since I was working this week. UGH!!!

I will keep you all updated. I may be making a trip to clinic or the hospital this week. Sorry again, for the long update. I hope everyone had a very blessed Christmas. And if for some reason I don't get around to posting again before Thursday...HAPPY NEW YEAR!!!!

November Already???

I can't believe it is NOVEMBER!!! Time Flies!! Did everyone enjoy their extra hour of sleep last night? I have always said that (in school terms) the fall semesters go by much quicker than the spring semesters. I apologize for not much blogging still. I did manage a few more posts this past week than before. This upcoming week is crazy, with something every night after work, so the blogging, once again, may be few this week.

My anatomy test last week was ok. I don't think I failed it, but neither did I ace it. I should find out tomorrow night what i made...keeping my fingers crossed that all the guesses were right :) I have another anatomy lab practical test this Wed night. This class is driving me INSANE and stressing me out big time. After this week's test, I don't have anymore until the last and second to last week of the semester (December).

I will be venturing to transplant clinic this week. I have not been feeling good at all. My throat is really sore, coughing, sob, no energy, etc. The results from my GI tests last week will be reveled in a post TOMORROW....definitely check it out, very interesting!

It's been a lazy weekend. I've been resting after a busy and hectic week. I attended my cousin's senior concert on Friday night. He is part of Auburn Singers (their university choir) and each senior is required to put on a concert with them only. He is such an awesome singer. We had a reception afterwards (my Mom helped with the food) for him, which everyone enjoyed! I didn't make it to church, once again, UGH!!! I passed out candy to the trick-or-treaters last night. My favorite was a little boy (probably about 1 or 1.5 yrs old) that was a UPS Man. ABSOLUTELY ADORABLE. Here is a picture of me, my brother, and cousin (Christopher who i mentioned above) one Halloween. I think it was around 1990, but don't know the exact year!

Oh yea: Not sure if I mentioned this last week or not, but we transplanted again last Tuesday night. The girl is doing great! But please keep her in your prayers. She is alone, has no family and no friends with her. Her Dad recently passed away and her Mom is in stage 4 cancer. One of my dear CF friends, Brandi, has been her angel, visiting her every day, multiple times a day. Her phone number is the "emergency" number left with the nurses. We've talked about trying to come up with a plan, because you can't go through the transplant recovery process alone. You need someone there to help you physically and mentally. I know the nurses will take good care of her, but it's not the same without a friend there. So please pray for this situation. She is in good spirits and doesn't regret anything. But I know deep down, she wishes she had someone to support her as well as her mother there with her.

I have a busy week! It is filled with work, doctor's appointments, class, a wedding Friday night, and much more!!! I'm praying I have the energy to make it through. I hope everyone has a great and blessed week!

Clinic Report

So...LONG MORNING at transplant clinic. My doctor decided to extend the IV antibiotics another week. I had a CT Scan appointment this afternoon at 3:00 to make sure everything was ok, and to follow up with the inflammation from back in June. However, I ran home to grab a bite to eat, and rest for about 30 minutes. I felt horrible, nauseated and had a low grade fever. I couldn't' get up to get back down to the CT scan. So therefore, I missed it. There was just no way I could be down there for another 1-2 hrs (depending on when they took me back), then back at class, with my exam. I didn't leave clinic (or rather didn't get home until about 1:30pm. My coordinator said she would try to reschedule it for tomorrow.

I am also having a bronchoscopy next Monday (or sometime in the next week or so). My PFT's were down a good bit. My FEV1 was 33% (down from 39%); my FVC was 35% (down from 41%); FEF25%-75% (which our transplant team looks at, was 0.66 or 20% (down from 0.88/26%....not good). My lab work was ok for the most part. I still have a really low WBC count, but it has come up a little bit. My magnesium level was 1.4, so I really need to get that up. If it drops anymore or doesn't go back up, then I will have to get IV magnesium. My chest xray was unchanged from my last appointment. My 02 sats were only 92%, which I meant to ask about, but forgot. So all in all, definitely a not-good feeling kind of day.

My doctor still isn't sure exactly what is going on (causing the fevers, sob, cough, etc.). My previous cultures showed sensitivity to the antibiotics I'm on, so there is really no point in changing them. Hopefully the bronch and ct scan will provide some insight.

On the up side, last night my uncle ended up talking with the doctor who is handling my grandfather's case (he just happened to be there when the doctor came in). He knew the situation, and told my uncle that "we" were definitely not dealing with an end-life thing here, and there is no-way that he (the doctor) would let that decision be made under his care (meaning he will not discontinue the antibiotics). My grandfather has been doing good today, even managed to do some rehab. But I know there have been some major issues with my step-grandmother (according to my Mom)today as well. I will know more later!

My Anatomy Lab practical exam was HARD!! And coupled with feeling crappy, including a head that felt like it was going to explode, it didn't go as good as I wanted. I didn't fail it per se, but wanted to make an "A." It was pretty tough, but hoping I pulled out of it with a "B". We'll see! Now I have to study for my anatomy lecture exam on Monday...UGH! I missed/skipped tonight's lecture class (which is right before lab class). I hope that is not going to hurt me upon taking the exam next week.

Tuesday Tid-Bits

I've seen this done by Erin over at Livia's Hope. I thought it would be appropriate for my post today! And I apologize for the lack of blogging lately!

So...I have almost completed 2 weeks of my IV antibiotic: Ceftazadime/Fortaz. Thursday morning will officially be 2 weeks. I have also completed 2 full weeks of oral Cipro, and 3 full weeks of inhaled TOBI (with 1 week remaining). Unfortunately, I have not really felt much better. The fevers would seem to go away, but then randomly spike again; i am extremely short of breath (thought I was going to pass out last night after walking to class); my body is severely shaking; occasional coughing, and just overall major fatigue and BLAH feeling. So my doctor and transplant coordinator want me back in clinic tomorrow. Usually by the end of 2 weeks of antibiotics, I am feeling SO SO much better.....that feeling usually kicks in well within at least a week. However, this time, no such "kick in-effect" has occurred. I know they are still trying to do everything they can to keep from admitting patients, due to the flu and swine flu cases.

I have a MAJOR, MAJOR, did I say MAJOR? Anatomy Lab Practical Exam tomorrow night! I've been studying, but due to work, classes, and being sick, I haven't studied as much as I would like. And to top it off, I haven' gotten much sleep lately. The last 2 nights I've stayed up studying until 5am. Then up for work at 7am. I'm very nervous and still have some items to study. The test (non-multiple choice-straight fill in the blank-like answers--really not even fill in the blank) covers every bone in the body, every bone marking in/on the body (foramen, fossa, condyles, tubercle's, sutures, etc.), the types of tissues in the body (their characteristics, functions, locations...and being able to identify them from a slide), and FINALLY....every joint in the body!! Lovely huh??? I would appreciate all the prayers I can get! For God to give me the ability to retain all of this knowledge; to not worry or stress out to much, where my mind goes blank or freaks out tomorrow night; and just for confidence in doing well on the exam! Our lab teachers informed us that the majority of the lab students make a high "D" or low "C" on the first exam. YIKES!!!!

I have my 1st Anatomy Lecture Exam next Monday. I plan on cramming for that Thursday-Sunday this week. I can't study for it before the lab practical.

Work has been crazy, but I've managed to make it through the day (although I probably should be resting).

My brother contacted the swine flue last weekend/week. I am glad to say that he is now over it and feeling much better.

It has literally rained here for the last 7 days, it seems like. And it really likes to rain during class times..ugh!!!

Week Wrap-Up

Wow...it has definitely been a crazy and hectic week....good things and bad things! I know I did a few posts earlier in the week, but am now just going to briefly wrap up the week!!!

As most of you know, Richard McCulley passed away Wednesday morning at 12:26am. He was 47 years old and had CF. However, cancer was what took him home to the Lord, and not his CF! Please continue to keep his wife Kori and their 2 boys in your prayers. Richard is no longer in any pain and is rejoicing with his Lord and Savior in Heaven. Brandi and I attended his visitation and funeral services Friday night and Saturday. It was very nice and very well attended! Kori seems to be doing pretty well. Thank you all for your support for them over these last few hard months. In lieu of flowers, the family is requesting donations to the McCulley Trust Fund, which can be found on their blog (if you have access to it-the blog is set to private). If you do not have access, please let me know and I can get you more information!

We had a family friend pass away this past week as well, and another in the hospital with a shattered shoulder, and possible bone cancer!

I have not been feeling good this week, and really, it hasn't gotten much better. Although I've been very busy these last few days. You can read how my clinic appointment went on Wednesday, here. I did attend class Wed night after clinic (5:30-10pm). It was a LONG night, but glad I was able to make it through! And for those of you that had been reading my updates on my friend Tony, who was transplanted about 5 weeks ago, he is doing exceptionally AWESOME!!! I've seen him several times over the last few weeks at clinic and other places. He also spoke at Richard's funeral on Saturday, and did a great job! He is feeling so great and is happy to get back to daily life with his wife and son!!! God is definitely amazing!

Thursday, my friend Katy from Texas, and I were able to spend some time at our lake house. Although the weather wasn't too great towards the end of the day, we still had a great time. We were able to tube for a little while (which I was glad because I haven't "tubed" all summer). She stayed with me Wed night through Friday morning!

In addition to the funeral yesterday, we also had our annual CF gala! As you all know, I'm very involved with the CF Foundation and try to be at every event possible. So as soon as the funeral was over, I high-tailed it back to Birmingham and arrived to help with our gala about 5:00. It was a great night, and I think everyone had a great time. It was a crazy night as well, as we were short MANY volunteers. Due to the other 2 Alabama-CFF employees being out of town, I was really 2nd in charge of activities throughout the night and keeping everything in line. So I was basically running around like crazy with my head-cut off! But hey...I always enjoy doing it!!! I will post pictures and more info about the actual event later in the week. I didn't get to take a lot of pictures, since I didn't have the time, but I did take a few. I think we (myself, our CF chapter director and our Chairman of the board) left the venue about midnight. After getting home, unloading, and eating, I think I went to sleep about 2:30am! I slept til 1:00 this afternoon...YIKES!! That was definitely not planned, but I know I needed the sleep!

Tomorrow I start back work at Sweet Pea (my usual Fall/temporary job until December). I love this job and are excited to be going back. If you have never checked out our stationery products, I highly recommend it. We have some awesome designs!!! I love all of them (although they aren't the cheapest, they are extremely good quality and professional looking). I've been used to not working the entire summer, and I know it will take a little while to get adjusted to working again. I haven't decided on my hours yet, as it will still be part time (probably around 30 hrs) for right now! I need to have a little time to study for my classes too!!

Well, I think that's basically the week in review! I hope everyone has had a great week and weekend! I've got another busy week ahead of me, and are praying I start feeling better SOON!! I will probably make a call into my transplant coordinator tomorrow. I was supposed to call her Thursday, but wasn't able to!

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).

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!

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!

Health Update!

I'm going to clinic tomorrow....so I will update afterwards! I feel about the same. My fever is gone, but I've also been taking Tylenol around the clock! Not sure what's going to happen tomorrow. If my xray is clear, then I'll probably come back home. If it's not, then I'll probably be admitted. Thanks for all of your comments and prayers. The summer months are usually my best months...so not sure why i'm sick right now!

Clinic Report

Yesterday, I had a follow up transplant clinic appointment. And it went really well! It's the best appointment I've had probably in a LONG LONG time. And I have felt so much better than I have in a REALLY LONG time (except see update at bottom of post). My chest xray was clear. My PFTs were 43/42, which is 10% higher than December, and overall higher than they've been in a LONG time. My lab work was good. Several of my levels are screwy: I'm dehydrated: Creatnine was 1.4 (i stay around 0.8 or 0.9), HCT was: 27 (which contributes to why I feel tired, but they don't ever do anything about that); Magnesium: 1.4-low, but they let me skip out on supplemental IV mag for now; and my BUN was high as well. I'm not sure why I'm dehydrated, but are instructed to try and drink LOTS and LOTS of fluid. The only symptom I have had the last few days is some major wheezing and a little bit of sinus stuff. They were really proud of yesterday's results!

My doctor also started me on Bactrim. Evidently, they are putting every single one of their patients back on this drug, regardless if the person is 6 months post-tx, or 5 years post-tx. They said it prevents a type of pneumonia: PCP, and that recently, when patients have contraced this type, it hasn't been good results. I'm all about preventing, especially since I get pneumonia so much. But I hate to add another pill to my regime. Oh well!

I had two good friends at clinic yesterday (CF/tx), so we spent a lot of time visiting and two of use ate lunch afterwards. I also managed to land a media relations job...where I will be the feature of a graduation story on the news and UAB media site. Not sure the details yet. It was very random. The local news was there interviewing another patient. My coordinator told the UAB medial relations person about me, and we started talking. She was so excited..and so am I! I've already signed consent forms! I can't wait!~

So yesterday after clinic when I got home around 3:00 or so, I was very exhausted and very nauseated. I rest for several hours, then headed to babysit at 6:30. I was dragging, but just thought I was tired. At the house where I was babysitting, I kept dosing off on the chair watching TV and was very cold...again, just thought I was tired and that the temperature in the house was cold. I got home, lied down, and BAM...I had a fever....totally unexpected. Real quickly, I started feeling crappy. Pissed....frustrated...you name it, I feel it. My mom was sweet and doped me up on Tylenol all night and attended to my needs. I felt some better this morning and made myself get up to go to my internship. This was my final day and I need the hours. I really wasn't feeling that great after a few hours there. So I explained the situation to my instructor and she let me leave early, still counting as many hours as I needed to. THANK heaven for a great and understanding instructor. So needless to say, I'm home, and resting. My fever is currently 99.3 (which is still a little high for me). My coordinator/doctor decided to start me on 2 weeks of oral abx, Avelox, to knock whatever this out. It just doesn't make sense to me...everything was perfect yesterday. The only thing we think it could be is a sinus infection. My Dad thinks maybe I reacted to something they did at clinic, but I really can't think of anything that would. It really amazes me...how I got for about 1-2 weeks of feeling great,perfect clinic appointment, and all of a sudden, I start running fevers again. It makes me mad...I have LOADS of school work to finish up this week. Oh well! Please pray that the oral abx kick in SOON and I'll be back on my feet in no time! I have a great strides walk I'm supposed to be working at on Saturday as well.

And...one last thing..I got my cap and gown yesterday...YAY!!!

Weekend Wrap-Up

I thought I would do a short post on my weekend and wrap-up of this past week. WOW...this week has flown by! But it didn't fly by without it's struggles and difficult times. As you know, I lost a very close friend on Wednesday! I've had a very difficult time dealing with this, but just keep trusting God and reminding myself that God called him home for a reason. On Wednesday, after I visited with Shaun and his family, I visited with another CF/transplant patient who was in the hospital. I also had lunch with one of our CF/transplant doctors who has become increasingly involved with the CFF. We had a nice lunch! Afterwards, I went home for a much needed nap, and babysat that night!

I did not make it to my internship on Thursday. My body was so exhausted, I could not get myself out of bed that morning. That was not my plan, but really couldn't get up and going. I think the events of the day before, coupled with no sleep at night, contributed to that feeling. I got some much needed down time on Thursday. Thursday night, Shaun's mom called me to give me funeral arrangement info. I think talking to her stirred up my emotions again, and it took awhile to regain my composure. I also had to call several people to pass along the info, which was hard to do.

Friday I got up and went to my internship til about 12:00. Then headed to get my hair cut @ 1:00. I'm so glad to have my hair shorter, re-highlighted, and a little thinner. It feels SO much better and I don't like having really long and thick hair when I go to the beach. After a 2+ hour hair appt, I came home and took a make-up school exam. It was a busy day, but I felt pretty good overall. But the thought and memories of Shaun and his family were with me throughout the entire day. Thank goodness for supportive friends and family.

Yesterday (Sat), I had a CF speaking engagement. The event was a Church Women's luncheon and fashion show. And they chose to have me speak about CF and my testimony briefly. It was a lot of fun, and I was glad to get the opportunity to do this. My Mom tagged along with me! The speaking went pretty well, although I think I spoke a little too fast (one of my flaws). I think they got a good bit of donations though, and the ladies who asked me to come were very appreciative of me being there. This was a difficult decision for me to attend this event. Shaun's funeral was being held at the same time, down in Louisiana. I wanted to be there...my heart really wanted to go. But I knew that Shaun wanted me to be speaking about CF instead of driving down there. And multiple people reassured me of that too. His Mom initially told me not to come anyway(it's about a 6 hour drive), because I had been really sick this month. And she wanted me to take care of myself. But it was still so hard to not be there! But as someone reminded me, Shaun is now in Heaven, and that although is spirit would be at the funeral, He wouldn't. So I decided (after much emotional havoc) to speak on his behalf.

After the event yesterday (it was about 1 hour away), my Mom and I spent the remainder of the day together. We had some good mother-daughter time. We decided to go shopping when we got back in town, and ended up staying out til about 7:30 pm. We haven't done that in awhile, and it really was not in the plans for the day. But as we were driving home from the CF event, we looked at each other and said, hey...let's go shopping! I had had an extremely stressful week, and what better way to help that other than shopping??

We ended up at Wal-mart last night as our last stop. As I was walking in, my right foot buckled out from under me, and now it is severely sprained, if not broken. I am in so much pain from it, and can't walk on it at all....seriously. I can't put any pressure on it, and it hurts to even use my leg muscles to life my foot up. As soon as my Mom gets home from church, I'm going to get my dad to xray it. (He's a vet and has his own practice). I'm really frustrated and mad, because I HAVE to be at my internship tomorrow. But as of now, I can't even touch it! So now, more stress has been added to my week! I'm not very good at hopping around either, because of my decreased leg strength.

Well...that's my week in a nutshell(ok...a little longer post than planned). I'm glad it's a new week. I have plans on attending my internship 4 days this week. I have 1 CF event Thursday night. I am babysitting Tuesday night. I have several school exams/quizzes. And Wednesday I am supposed to return to transplant clinic to see if my pneumonia has resolved. However, I may be skipping that appointment if I have to miss a day of internship due to my foot. I'm feeling like the pneumonia has cleared, as my only remaining symptoms are ones that are going to take awhile to recover (such as energy, and breathing). But I'm not sure if my coordinator will let me skip it. So please pray that my foot will heal quickly and enough where I can stand to walk on it. Please pray for me as I'm still having a hard time dealing with the loss of Shaun, and please keep his family in your prayers!

Next weekend is Easter, and then I'm supposed to go to the beach that following Wed! (and at that time, my internship will be over with...if everything goes as planned).

I hope everyone had a great week, and has an awesome week to come!! Thank you all again for your love, support, and prayers for my friend Shaun! It means a lot!

Oh...and the layout of my blog will be chaning, as soon as I have time to install the changes!! But be on the lookout!