R.I.P. Brandi Thorpe

As most of you know via Facebook, Brandi Thorpe, author of: "Every Breath I Take" lost her life Wednesday, February 15, 2012. I just want to express how much she loved keeping up with all of your blogs and what was going on in your life. She greatly appreciated the support from all of you. This has been a very tough week for her friends and family. I ask you to continue to keep them in your prayers. It has been an emotional roller coaster for me, and I know I will face some tough days ahead. If you feel led, please pray that the Lord will give me the strength to get through this, and stay physically well. Brandi fought a great battle against CF, but never let it define her nor take over her life.

Brandi always lived life the fullest, and always had a smile on her face. She had been suffering these last few months, but more so the last few weeks--but now she is breathing easy. I had the honor of getting to know Brandi like a sister these last 7 years. We became very very close friends. We dedicated our life to helping others with CF and their journey through life. We both supported each other through difficult times. I am grateful for our friendship. I had the privilege of speaking at her funeral today and just being a part of her family this week. I am thankful that I was with Brandi when she drew her last breath here on Earth. She will forever live in me, and I will forever love her.

Photo for chronic rejection

I am starting another round of photophoresis tomorrow, October 17th for the progression of my chronic rejection. I've talked about what this is on my blog before and most of you know I have already completed 2 rounds (15 mths each round). My doctors are hoping that somehow this round will stabilize me some like the last rounds (the last rounds did not reverse or improve anything but apparently it stabilized me somewhat...i like to call it remission). I don't have my hopes up...but I do trust my doctors. More importantly, whatever happens, is God's doing, and is always for his glory. I am having a hard time actually grasping the situation that my chronic rejection status is not good and prognosis isn't good. I believe that everything will work out...that I will graduate in May, and start working as a nurse and go on to live a long and fulfilled life. I am taking it day by day. I'm not at peace with doing another round of photo, as no one at UAB has done that, let alone Duke I think. So it's any iffy chance. But please pray for me and that this photo will work, but more importantly, for me to feel peace from the Lord about whatever plan lies ahead. Thanks :)

IV Abx/Semester over

As I mentioned in the post before last, I haven't been feeling so well. The Cipro did get me through last weekend and the last few days of school this week. I called my transplant coordinator to get the final results of my sputum culture. Unfortunately, it grew moderate amount of pseudomonas. So this is definitely why I wasn't feeling good. I always have pseuodomona in my sinuses, but we try to keep it from going down into the lungs...and that's what it did.

Unfortunately, I'm not fully sensitive to any oral antibiotics that can kill this bug (or really any bugs). So I had to start IV abx. Luckily, she let me start them at home first and see how I feel. If I start feeling better, then i'll continue doing them at home. If I don't feel a whole lot better by Monday, then they will probably admit me.

I really didn't expect my culture to grow anything...but at least I was able to do a culture and get the right abx to kill the infection.

We had our CFF YPB Christmas Party last night. It was a lot of fun!!

I finished out the 1st semester of nursing school with 2 "A's" and one "B." Not too bad. I'm so proud of myself for being able to complete it. It wasn't the easiest thing with my health acting up towards the end and one hospitalization. But the Lord got me through it and I am so thankful. I can't wait til next semester!!!

In other news: My aunt passed away last weekend, so we have a service for her tomorrow. Please keep her family (she has a daughter and a son), as well as my Mom and her other 2 sisters in your prayers. This was definitely unexpected. She was only in her early 60s (i think she just turned 60) and died of a hemorrhagic stroke.

Also, my brother graduates college on Monday. I'm so proud of him. He has also already secured a job, which is great! I love him so much!

Well, that's all for now! I'll update you later! I hope everyone had a great week!

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.

Friday News

I am headed to the lake tonight for hopefully a nice and relaxing weekend. I was wrong about not getting a day off from classes for the 4th holiday. I thought our professor had July 5th on our syllabus, but he didn't, and he verified in class on Wednesday, that Monday is indeed a university wide holiday...YAY. So that means an extra day at the lake. Of course I have to take studying stuff with me. I've been spending the majority of my time studying Microbiology, that I haven't had time to do much for my online Developmental Psychology course. And I didn't do too hot on the last exam. So I will be catching up in this course at the lake. We have an exam due by Wednesday, a project due next Sunday, and a few other assignments. The professor uploads her lectures to the course website (since it is an online course). That is the only thing I don't like. Most of the lectures are 1 1/2 hrs to 2 hrs long and it is very hard for me to sit in front of my computer and listen to them. And then she adds all these extra videos for each unit, that in total, are at least an hour long. It is a lot of stuff, but I have to do better on this next exam, because I really want an "A" in this course.

For those of you who don't follow me on facebook, this past Monday, I got some wonderful news. I was selected to receive a full nursing school scholarship. I was 1 of 2 people and it is the best and highest scholarship the School of Nursing gives out. I was so happy, excited, shocked, etc. Totally unexpected. I was pretty sure that I would get some sort of scholarship, because the School of Nursing gives out a lot of money. I knew I had the GPA, resume, good essay, good recommendation letters, etc. But I also knew it was very competitive and we were told that probably 75% of this class met the requirements to apply for a scholarship. We had our 1st Nursing orientation session last Friday. We were told that they had extended the scholarship deadline and we would not find out if we were selected to get a scholarship until the 2nd week of August. Classes start the 3rd week, so as you can imagine, not too many people were happy about that. The particular scholarship that I'm being awarded requires the school to notify the recipients by June 30th. So that is why I found out sooner.

It is such a blessing and such an honor. I'm so thankful and really give God all the glory for this. Our family has been in some really tough financial situations lately. If there was not going to be scholarship money awarded, we were definitely going to have to take out loans. The scholarship may not cover all other expenses, and it does not cover the summer semester next year. But other than that, it funds the entire program and there are no requirements to keep the scholarship (such as GPA, etc.). This is such a blessing and took a huge burden off of my family and myself's shoulders. I had been applying for other scholarships (such as Solvay CF one, Boomer Esiason Transplant Grant, etc.) but had not heard back anything.

This summer is going by so fast, and before I know or realize it, I will be starting nursing school. YAY! Classes will be over the last week of July, with my last exam the 1st week of August. I'm hoping to fit some sort of mini vacation during my 2 week break before fall classes start.

I am babysitting tomorrow and next Friday. Then the next Friday, the 16th, I am taking the required CPR course for nursing school. So since I have classes 4 days a week, these next few weeks are going to be busy busy!

We had a really good CFF Young Professionals Board Meeting this past Tuesday. We are really excited to get this group up and going for our chapter. We have tried in the past, but the right people were not in the right place at that time. We are confident that the members on this board are very passionate about CF and really want to help find a cure. I was elected Secretary of the group, since I love taking notes, organizing, etc.

I hope everyone has a safe and fun holiday weekend!!!

Brief Update

Just when you think your life has calmed down....it gets crazy again :) Sorry for no blog posts like I had intended to do during my 3.5 week break from school/classes. I was busy volunteering with our CFF Chapter, busy preparing for my walk team, babysitting like crazy and then just daily life stuff like sleeping and eating :) I volunteered at our last local CF Great Strides Walk on Sunday. It was a hot day...a fun day, but it flat wore me out.

We did get to go to the lake over Memorial Day Weekend. Despite rain off and on, we had a good time, and Monday ended up being a pretty good day....which included some tubing...in which I am still completely sore and back pain city. Oh well!

Anywho...classes for the summer semester started back last Wednesday. I have classes 4 days a week...which is a bummer. Usually you can schedule your lab and lecture class on the same day. However, they did not give us that option this semester. And since it is a shorter semester than the fall or spring, we have lab class 2 days a week, whereas during the other 2 semesters, it is only 1 day a week. So needless to say, I'm busy again and back into studying already. We have our 1st Microbiology Lecture Exam next Monday (a week from today). I have found that I don't like the Microscope very well in laboratory...not very talented at looking at things. Hopefully that will improve. In addition to my Microbiology classes, I have an online Developmental Psychology Course.

I am babysitting occasionally on Fridays and weekends...although it has slowed down a lot compared to when I was off from classes for a few weeks. I am teaching Vacation Bible School next week in the mornings...and then I will venture to classes shortly after the kids leave. Usually you have 2 Adults/teachers in each class. But due to limited volunteers, I am on the only adult/teacher for 6 lovely (hoping lovely) 1 year olds Monday-Wed, and 7 lovely 1 year olds Thursday and Friday. I will have 1 teenager helping me. So I have to prepare a lot more than I usually do this week. Usually I just kind of swing it...look at lesson plans, activities, etc., as we go throughout the day. Not this time. Most of the kids are 1 1/2 -2 yrs old, but not yet officially turned 2 yrs. I'm excited, but it will be a crazy week!!!

Ok..due to limited available blogging time and me really needing my sleep lately...that is about all I can share tonight....other than 2 more quick things!

First...if you don't follow me on facebook...then you haven't yet heard...I got accepted into Nursing School. So yes, lots of stuff to do for that this summer as well. Classes will start in August..but there will be lots of info sessions, meetings, and other stuff to complete this summer. Nevertheless, I am thrilled and so excited! Please pray that my body/health will cooperate throughout the nursing program!

And one more prayer request: I am still having issues with my Blood Pressure. I'm not sure if I have mentioned this or how much detail I have discussed? I went off the Norvasc, as apparently it was causing my body to retain fluid badly...and I mean seriously...I gained 7 lbs of fluid in my tummy and feet/ankles. It was awful. Upon determining that there was no more blood clots in my feet, the Norvasc was stopped, switched to HCTZ and Lasix for 3 days. I peed off the fluid eventually, but now the fluid is coming back into my tummy off and on. Last week, between Tuesday night and Wed night, I had gained another 4 lbs of fluid, but yet lost it at the end of the week...and the cycle continues. My BP has dropped somewhat, but I continue to have very high peaks (150s/100s) and on average, it is still running in the high 120s/mid 130s over 80s-90s, with the occasional peaks. Please pray that we can get this under control!

Off to bed and will hopefully post more soon. Sorry for the long post...but if I don't do it all at once, it won't get done.

Checking In....

So much for the idea of posting more often :) I've actually been pretty busy despite being on a break from school right now! I have had tons and tons of babysitting jobs, which has been great!!!

I thought I would share this interesting little bit of info....I woke up last Wednesday with a swollen right foot. And when I say swollen, I mean major swollen. You couldn't even see my ankle bone, nor feel it. It was swollen on the top of my foot, and on the left side and underneath of the leg. I was like, what is the heck is going on. I didn't think much of it til later that afternoon, when my Dad urged me to call my TX coordinator. So I did that, and she told me to watch it and call her the next day. And to keep it elevated as much as possible. Usually the causes of swelling are: infection, injury, or blood clot. So the next day, it was a lot better when I woke up, but got worse gradually throughout the day (after I had already called my coordinator). I was already going to the doc Friday morning for some lab work, and she had told me to call her when I was done with an update on the foot. I told her how it had gotten worse the day before and it was a lot worse Friday morning. So we opted to do a xray and ultrasound. We really didn't think it was an infection, because the swelling site wasn't red, and my WBC count was normal. It wasn't injury...and she didn't think it was a blood clot, but wanted to make sure. So after waiting for about 4.5 hrs, I finally got the ultrasound and xray.

My coordinator called me several times Friday afternoon....first with a report that nothing was wrong, and they would just do lasix to try and remove the fluid. Then she called me back after my TX doc had reviewed the report and said I did have a blood clot. However, it was a superficical blood clot and not a deep thrombosis, which are the ones that can travel to your lung and heart and block off blood supply. Thank goodness. It was in my right calf vein, and the treatment is warm compresses and elevation, but to also not be immobile...to resume normal activity. Because immobility is usually a cause (although I definitely had not been immobile). So anyway..the swelling is almost completely gone as of today. Hopefully it has dissolved for the most part. Just thought I would share that with you. I haven't had any swelling since right after my transplant, due to fluid buildup/steroids. SO....be careful, and if you ever get swelling like that all of a sudden....get it checked out!

Will post again soon!! I am staying busy gearing up for our Great Strides Walk this Saturday.

I hope everyone is having a great week. Please keep my friend Tony in your prayers, as he is fighting for his life. He is a CFer and was transplanted last July. He has been fighting a bad infection/bacteria since November, and has just taken a turn for he worse.

Life to the Fullest-RIP Emily

I know many of you were following the recent journey of Emily Haager (better known for her blog, "Life to the Fullest." She went home to the Lord yesterday, as she lost her battle with CF. Just from reading her blog, and commenting with her back and forth, and reading the daily updates from her family, I know she was a wonderful person, and truly lived life to the fullest. I was always amazed at how healthy she was and with her love of surfing! This was such an unexpected journey Emily's body went on....and no-one expected the outcome. This just reconfirms how CF can take unexpected and sudden turns in life. I felt a little more connection to Emily, as I had my transplant at USC. USC was her CF center and where she had spent the last few months battling constant infections and other complications. I know the team at USC did everything they could and truly cared and loved Emily.

This was the post on the CarePages USC site from her family earlier yesterday:

"Today Emily peacefully went to a place without CF, a place where she can run, surf and breathe without worry. She lived her life exuding love and grace, impacting everyone who ever met her and showing the power of the knowledge of the resurrection of Christ in our lives. We already miss her and are so grateful for the support of everyone who knew Emily and loved her as much as she loved everyone else. We will post with more information at a later time with information about the memorial."

Please keep her family in your prayers during this difficult time. I know she is now in an eternal place with God, and with a pure body, free of CF.

Easter Update

I'm finally posting a much overdue update!! This has been a crazy and stressful week! I had 2 major exams (1 in Physiology Lecture and the other in my Nutrition Class). After studying almost non-stop the majority of last week and weekend and every day and night this week until Thursday morning....I'm finally taking a day off! I never knew how much studying could exhaust you! Many late nights...too much information to learn. I didn't do as well on my Nutrition Exam as I wanted. The physiology lecture exam wasn't as bad as I expected. I won't know my grade until Tuesday! I'm really praying for a "B", but not completely sure! It is nearing the end of the semester....and it has definitely gone by extremely fast!

I submit my nursing school application in 2 weeks. And I have a lot to do on that! I need to edit my resume. Our university has an online option where you can submit your resume to the career services center and they will critique it for you. That have specific people that know how a nursing resume needs to look and say. So I plan on submitting it to them by Wednesday of this coming week. I also have to write a 1 page essay on why I think I would be a good nurse and why the School of Nursing should accept me. I would really appreciate the prayers these next few weeks as I prepare my application, and then more importantly, that I will be accepted.

On to news other than school.....I've been doing a lot of stuff with our local CF Foundation. I have a more detailed post with this, as I don't want to make this post too long that you won't want to read it! Basically, I've been doing a LOT of speeches and have been really involved in our CF Great Strides Walks that start this month!

Tomorrow I plan on attending church for Easter Sunday. I'm really excited, especially since I have not yet been able to get back to church and Sunday school due to school/studying and/or needing to sleep. We will be having Easter lunch at my Aunt's house tomorrow afternoon. I'm definitely looking forward to that and spending time with family! Last year, I had an extremely bad case of Vertigo, and had to miss out on Easter lunch and the entire weekend in general!

Unfortunately, after Easter activities tomorrow, I will be back into studying and doing school work. I have a online quiz due Monday. I have to listen to an online lecture in order to well on the quiz. I also have a Physiology Lab Quiz on Thursday, which I will need to begin studying for!

That is really all I have to update on! I'm extremely blessed to be celebrating Easter and are truly thankful to Jesus for dying on the cross and rising again! I received my transplant 6 years ago on Ash Wednesday (which that year was February 24th). I never knew that until my wonderful CF doctor pointed that out. Easter is a wonderful season for miracles. And I'm praying that some of you awaiting that miracle of new lungs, gets a wonderful gift SOON!

Brief Health Update: overall I'm still feeling ok. The stress from school the last week or two hasn't been the best, as I've been extra tired. I am coughing a little and are having some chest pain. I can start the TOBI inhaled antibiotic this coming Monday. So I plan on starting it at least sometime next week, and hopefully that will keep any infections at brew away! I will probably go to transplant clinic the 2nd to last week or the last week in April, depending on how I am feeling. My back is hanging in there too. I have my bad days and my good! My shaking is out of control, and I have asked to reschedule the neurology appointment.

I hope everyone has a blessed Easter and a great weekend.

Prayers for Emily

I know many of you follow Emily H's blog: Life to the Fullest! If you haven't heard or read the latest post, Emily has been in the hospital for the past month battling a serious lung infection. In addition, her kidneys shut down for a brief awhile, but that situation is getting better after completing a round of dialysis. However, the lung infection is really taking it's toll on Emily's body and not really getting any better. She was intubated this afternoon in order for her body to get some much needed rest, for her oxygen levels to rise, and to get some much needed nutrition. She was just unable to continue to fight the infection on her own. Please pray for Emily. If you would like to follow daily updates, her parents created a Carepages.com page for Emily. Her Mom posts at least every day, if not more. You do have to sign up, but it is free. I highly encourage you to sign up so you can continue to pray specifically for her and to stay up-to-date. You can click on the above link to take you directly to Emily's Carepage or click on the link provided on her blog.

A lot of us CF bloggers have lost some dear friends recently from some bad infections. Emily is battling 2 strands of bacteria, one being psuedomonas. She will win this battle, but is in serious condition right now.

Thank you!

Wrap-Up Wednesday

Ok...so my promise of blogging more obviously didn't happen last week nor this week. It has been SO SO crazy, I just haven't had time to blog. In addition, my computer got a virus the end of last week. So I had to take it to get it removed and just got it back and set up in my new room yesterday. So today, Wednesday, I'm going to do another "catch-up" post. BEWARE: LONG POST (but I do hope you will read it)

I have officially moved downstairs...YAY! I really love having my own space. I was going to post some pics of my scrapbooking area, but my computer is not cooperating right now. So I promise I will post those later this week, hopefully sooner than later. Sorry! I finally have all (or most) of my scrapbooking stuff organized. Now I can finally start scrapbooking (I'm so far behind).

My bedroom is complete, with the exception of my wall art, decorations, etc. I had to buy a new desk because the one that I had in my "old room" was too long. In addition, it was really heavy and bulky, and we were not sure we could get it out of the hall and down the stairs without disassembling it. So my Mom is going to use that desk. I also bought some cute valances for my windows, and are hoping to put those up this weekend as well (I didn't have curtains in my old room). The valences are "suede/velvet-like" which exactly matches my comforter. The colors are exact too...and even more exciting was that they were on clearance at Target!!

Ok...so a few more things just to catch you up on.......

Thank you to those who left comments on my blog regarding Emily Mulkey's passing. It's been tough...but ok. For those of you who would like to write a response to Emily's Memorial Service, a letter to Faith, Jason or another family member, or simply express how Emily's life has affected you, changed you, encouraged you, or inspired you (whether you knew her or not), you are welcome to comment on her blog (specifically by clicking here). These will be printed and bound for the family.

Ok...onto another subject. I had a visit with my ENT last week....only to find out my sinuses looked really good. I was a little confused, as my transplant team as well as myself thought my sinuses were the culprit of this last admission with pneumonia. It may very well have been, but no one knows for sure. My ENT did a culture just to make sure everything was ok. And about 1 week later, the nurse called me to say that my culture grew out moderate pseudomonas. So I am back on Cipro oral antibiotic for 3 weeks...yay! My body is tired of antibiotics...needs a break. But I could tell I was very junky...so I'm glad he did a culture. I started doing an occasional Xopenex inhaled neb treatment to help get the junk out. I also start my inhaled TOBI this weekend. I'm trying to stay well and OUT of the hospital.

School is going ok....I bombed my 1st physiology lecture exam this week...yikes. I knew I wasn't 100% prepared. It's been hard coming in 3 weeks into the semester...still have some catching up to do. I'm praying I can bring my grade up. I have my 1st physiology lab exam tomorrow (Thursday). I also have a nutrition class exam next week as well as a project due.

Tomorrow (Thursday) is going to be a very busy day. It is my 25th BIRTHDAY. I have my 3 usual classes, including my physio lab exam. I also have a nursing school application session where I will be informed of everything I need to apply to nursing school. I'm excited about that!

One more thing...I have been experiencing some severe lower back/hip-area pain. It is really bothersome and really painful. Please pray that this resolves quickly, as it is interfering with going to classes, driving, sleeping, etc. I am attending physical therapy like I have been, and doing some other things to try and relieve the pain. Thanks!

I think that about wraps everything up! Sorry for the long post....I'm going to do my best to update and blog more frequently!

Breathe Easy, Emily.

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

(September 2008)

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

(Fall of 2008: Emily, Me, Shaun)

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

Friday Fragments

Ok...so the title of this post may sound a little childish...but I had to think of something catchy. I wanted to do a post with little updates (similar to Tuesday Tid-Bits and other catchy blog memes). So here it goes...

1. Classes went ok this week. I ended up missing classes yesterday morning due to feeling sick and running a low grade fever. But I managed to attend my lab class last night, and it wasn't all that bad. My professor decided to deduct 20 points off my grade (not happy about that) for missing the 1st class, which I missed the first 2 lab "experiments." But from what I've been told, the class is not all that hard, and I should be fine. Keeping my fingers crossed.

2. ENT Appointment yesterday: Sinuses evidently look good (despite them being the culprit of last pneumonia and causing havoc the last few months). Doc took a culture to make sure nothing is growing. If so, I will start on an antibiotic. He gave me a script for bactroban topical cream steroid and wants me to mix it in with my sinus Neil Med Rinse....not too sure about that...lol). Oh..and my deaf right ear I've been having is due to fluid. So he told me to try and pop my ears 3-4 times a day and it should resolve...who knew???

3. The moving of "me" downstairs is coming along and I hope to be moved in this weekend. If not then, the next weekend for sure. We have to have a little "brotherly" help moving some of the furniture pieces!! I will post pictures soon!

4. I renewed my CF Great Strides Team this past week. Excited to get started on that as well as helping out with all of the other walks our Chapter hosts!

5. Wednesday I had the opportunity to eat lunch with our CFF staff, which included our new executive director.....like her very much and excited to have her join our chapter.

6. Looking into buying a mini laptop (Netbook). Need one for those times in the hospital and to use on vacations, etc. I think my Mom and I are going to split the cost, so she can use it for work as well. But this is just an inexpensive purchase....not like when I customized my awesome desktop from Dell. We basically just want Internet access and then need something like Microsoft Office so I can download school documents and my Mom can download work documents into Word, Excel, etc. Any suggestions though? I really want to stick with a Dell or HP!

7. Prayer Requests:

Brandi, who is in the hospital and unfortunately, not seeing much improvement, if any. Please pray that the doctor's will get her on the right regime of meds and whatever else needs to be done to get her feeling better! Click here to visit her blog!

Guy (name will remain anonymous): Post transplant-CFer (was transplanted in July), currently suffering from pneumonia since late November/early December; continues to have fevers (and HIGH fevers) for several months; He has been hospitalized and completed home IV abx multiple times and the fevers still remain, as well as some other symptoms. He has been treated for a fungal infection, just in case. He underwent a surgical biopsy this past week and most cultures have come back negative, with the exception for pneumonia with pseudomonas as the bacteria causing agent. They are still awaiting more culture results. Please pray for ANSWERS, so he can be rid of the pneumonia, fever, and other symptoms. It's almost like his body is not responding to meds, despite all the cultures and sensitivity testing.

Emily, who is currently fighting pneumonia again, and was put back on the ventilator yesterday. She has definitely been going through a rough time and can't seem to fight these infections. Visit her blog for more info and prayer requests.

Ok...so I think that is the end of my "Friday Fragments." I thought maybe I had more things to share...and more "fragments"...not necessarily paragraphs...oh well!!!

I hope everyone has a great weekend!

Going Home

I'm finally escaping Club Med tomorrow (Wed) after 14 very long and rough days. I do feel a lot better and are ready to get back into my daily routine. I'm still very tired and weak. It will take me awhile to recover from that. This infection really knocked me down, and it's going to take some time to get back to my usual self. I have a lot of weight gaining to do as well. I've lost so much weight between the gallbladder surgery and being sick. I'm "sick and tired" of being sick and didn't like starting off the new year in the hospital. Hopefully I will remain healthy and feeling good for a very LONG while before getting sick again.

I was really frustrated that I was not able to get out on home IV antibiotics so I could attend classes today. The doctor wanted me to stay the full 14 days. I will return to transplant clinic in 2 weeks, unless I need to go before. My transplant coordinator made it clear that I really need to rest and take it easy as much as possible at home. My plan right now is to attend my physiology lecture class Thursday afternoon. And then the following Tuesday, begin attending all 3 classes. I'm looking forward to resting and just being at home this weekend AND sleeping in my own bed.

My stomach is continuing to misbehave. I do feel like the distention is some better, and some of the nurses agree as well. I've had a Lortab for pain tonight and trying to tolerate it without any other pain meds. They really don't want to give me any, which I understand. And once I'm home, I won't be able to get the good, strong, narcotic IV Dilaudid. So hopefully tonight will be a good night. I've been pretty nauseous today and yesterday, so I'm taking the phenegren pretty regularly. Thankfully, I have phenegren at home I can take. The docs still feel like the cause of this is due to all of the antibiotics I've been on the last month or so (a whole lot). So I'm expecting the stomach distension and pain to resolve once the antibiotics get out of my system.

The pneumonia has cleared up on the xray. My heart rate is still pretty high (150 with exertion, walking, etc.). It is a little better at rest, hanging around 100. I know that will get better once I'm moving around more. Thank you to all of you for your prayers and good thoughts these last few weeks. I will update tomorrow when I get home or sometime soon thereafter. I hope everyone is having a great week.

P.S. I did have pneumonia this admission, and it was showing up on xray. I'm not sure why I wasn't notified of that upon admission and could have sworn that he said my xray was fine. But evidently it did show some lower lobe pneumonia. The bacteria causing the pneumonia was Pseudomonas.

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!

Ultrasound Report & More

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

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

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

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

Checking IN.....

I guess my plan for blogging more frequently just didn't happen last week nor is it going to happen this week! SORRY! Studying, work and my health is taking up my time!! I have 2 Anatomy finals tonight (one make up and my lab practical final). I'm not prepared and are so worried. I definitely need the prayers and miracles. I pulled an all nighter Monday night studying. Worked about 9 hours Tuesday, then attended a anatomy lab study session last night from 6:30 to 8:30 pm. Came home, got some dinner and ended up crashing and falling asleep. NOT MY PLAN! I had planned on studying the entire night, or at least most of it. I took off work today, but didn't wake up until 10am. And i feel awful, like i've been run-overed by an 18 wheeler truck. Not sure why and hope I'm not sick! I'm finally getting a little more alert and energized, and will studying 24/7 until about 4:30 today. My anatomy lecture make up test is at 5:30 pm and my lab practical final exam is at 7:00 pm. I'm more worried about that than the lecture make-up! So if you read this today or tonight, I would greatly appreciate any prayers! I know that is not technically something to pray for, but hey, I'm on the verge of passing the class, and I'm going to ask for all I can!

My liver has decided to continue acting up post-surgery. The fluid in my abdomen has not decreased and is actually getting pretty painful and very uncomfortable. I had some lab work rechecked yesterday. Not sure if i mentioned this before or not, but I had to get some lab work done this past Friday due to lots of fluid accumulation. Some liver values were high, I was started on some lasix, and then was re-evaluated yesterday. The lasix really didn't work that much, and my lab values decided to go up a tad, to the point where the transplant team is a little concerned. I spoke to the GI surgery nurse coordinator yesterday. They have decided to do an ultrasound to make sure nothing serious is going on. So I have an ultrasound tomorrow morning. It seems like I can never get away or never get a break from all this health stuff. I have been eating better, but not that much, and really have not been able to gain any of the 8-10 pounds or so I lost. So I really need that to get better as well!

Well, that's all the time I have for blogging. I have a Christmas party to attend tomorrow night (Thursday) and a couple of things going on this weekend. I have my final/3rd Anatomy Lecture Exam next Wednesday, December 9th. I am so ready for all of this to be over with, but want a HAPPY ENDING!!!

I hope everyone is having a great week!

Pain

I'm in so much pain, it's insane. I want to scream!!!!!! We are not sure how much of it is due to the gallstone or not? And unfortunately, my doctor yesterday didn't know anything else to do other than wait til after the surgery. I'm going to try to get back into an orthopedic afterwards as well.

My clinic appt was so-so. PFT percentages are about the same. My mid-flow is way down..down to 0.15 (almost non-existent)..ykes. My BP was really high and my oxygen sats were really low at 91%. Ever since my transplant they have been at 99 or 100. With this last hospitalization for pneumonia and inflammation in May/June, I had a lot of trouble with my sats. They were dropping at night below 90% and during the day were hanging around 90-93%. They have been low each time I've been to clinic since then but nobody has really said anything. Today I brought that up because I'm concerned. If you have an o2 sat of 90%, that could definitely be causing some of my shortness of breath. So my doc told me to come by the clinic each day to get it checked..yea, right, like I'm going to drive 25 minutes every day to do that. We have our own monitor but it needs a new probe and battery. So I'll just go that route!

My weight is down..i think the gallbladder has caused me to lose my appetite.

I feel good about my anatomy test last night...yay (or at least i hope)! Having a bad day today...had to stay home from work. Been sleeping all day, in tons of pain, headache, etc. My doctor "asked" me yesterday if I wanted an antibiotic? I'm thinking, that's not my decision, you tell me. But I told him I wasn't sure if the fevers were due to gallbladder, pain, or infection. So I am going to continue on my TOBI and see what happens!!! PLEASE PRAY for relief of pain...it's bringing me to tears and I hate taking all these medicines for it.

I will update soon, but haven't felt like blogging too much. I'm praying for all of you that are sick, in the hospital, or just need a little prayer uplifting! Have a great rest of the week!

Weekend Wrap-Up

WARNING: LONG POST! I know I haven't blogged much this week...sorry! I wanted to write a brief update on my health and other stuff, since I really haven't talked about that in the last few weeks! I have been swamped with studying, work and other stuff!!

(oh and before i begin, for those of you that commented on facebook about my bad week of charlie horses; the potassium tab helped...no spasms last night!)

Until this past week, I had actually been feeling really good. This was definitely a blessing, as it was the best I had felt in a long while! However, since LAST Sunday, I haven't felt too good, but was hoping it was just a bad few days. After talking with my tx coordinator on Tuesday, she was concerned and told me to call her back on Wed. Well, Wed and Thursday I felt better, so I opted not to call back and see how this weekend went. Well, needless to say, I currently feel like I've been run-over by an 18-wheeler truck and in the midst of a spinning tornado! No, it's not the flu and I don't think its anything as serious as pneumonia, but I really don't know! I've been having extreme issues with my body shaking!! And I mean REALLY bad. It's been worse ever since my steroid burst back in June. But over the last month it has been insane and I don't know what to do. Any suggestions or thoughts? I had my prograf levels checked about a month ago, and they were fine..even low. And I haven't been able to make my team of doctors figure this out. But now I'm to the point where i have to. The other day when I was in the gas station getting a snack for class, the register guy and I exchanged the normal "hello, how are you." Then as I'm getting money out of my wallet, he asks me several times if I'm ok? Very embarrassing!

Anyways, in addition to the shaking, I'm having severe rib/chest pain (achy and sharp) and are not sure what it is related to either. My back has decided to start spassing up again, which when this all happens together, it makes me extremely sob!

I FINALLY had an appointment with my GI doc last week. I am scheduled for a few tests October 28th to hopefully find out the origin and reason of the fluid hanging out around my liver. He doesn't think it is anything serious, but really doesn't know. Depending on the results of the tests, we may do some tests on my heart, to make sure it isn't coming from there!

In other NON-HEALTH-RELATED news....my anatomy class is kicking me in the butt!!! I am in grave danger of passing the course and feel so overwhelmed with it right now. Some of you may think no big deal. But I've always been a great student...very high GPA, top of the class, etc., I've never had this much trouble with a class. I'm looking into some additional resources and are praying every day that i can just "pass" the class; although I'd prefer a much better grade (but unfortunately can't make that happen now). So I could really use some prayers for this. I can't drop the class; i have to have it!!!

We had a memorial service for my grandfather last Monday! It was really nice and a lot of his friends and family got up to share some wonderful memories, including myself! I miss him but know he is in heaven re-uniting with his loved ones!!! And as someone mentioned recently, he is probably playing his violin in Heaven's orchestra!!

I have not been able to make it to church/Sunday school in several months, and this really breaks my heart and frustrates me more than ever. I want to be there and I need to be there. But sometimes my body has other plans! I miss being in God's presence on Sunday mornings, worshiping with others! Every Saturday night i say to myself that I am going to get up no-matter what and go to church, but then Sunday morning rolls around and my body just can't do it. And then later in the day, I think to myself, why didn't i just push a little harder??

Sorry for the long post!! The blogging this week may be short, as I'm really trying to study for an upcoming test the following week! I'm hoping for some health answers as well and will definitely keep you updated when I know something!! We have had 2 people recently get transplanted and they are doing awesome!!!

I hope everyone has a great week! I am reading your blogs and trying to comment when able! I still have several things to share with you, which hopefully will be soon!!I am praying for all of you!!! Oh yea...ROLL TIDE!!!!!!!!!!!

Grandfather

The Lord finally decided to take my grandfather home last night!! It is so comforting to know PaPaw is pain-free and in the best hands ever!!! He definitely was the strongest person I knew and definitely put up a fight!!!! I will miss him very much, but know he lived his 95 years of life on this earth to the fullest!!!