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.

VX-809 Research Update

This week, we gained important new ground in our work to advance the development of new cystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial. VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508.

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.

VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.

The data from this trial pave the way for future studies of VX-809, including testing the therapy in combination with VX-770. Also developed by Vertex, VX-770 is an oral investigational drug that showed encouraging Phase 2 results in restoring the function of CFTR in patients with the G551D mutation of CF.

Research in the laboratory suggests that using two therapies in combination may increase CFTR function in cells with the Delta F508 mutation when compared to using a single therapy alone.

To read the full article (press release) or for more information on this study, click here.

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!

CF Resources/Websites

I have posted a new website (blog) that provides information and resources for Cystic Fibrosis patients and families. CysticFibrosis.Net has a wide array of information on CFers staying healthy, the latest news regarding CF research and medications, suggestions and advice for parents on managing their child's CF and much more. I hope you will take the time to visit the website/blog. The site allows comments on all posts.

Great Strides

I have posted the Great Strides Widget on the left of my website. I never removed the widget, but it has been updated and linked to my 2010 Great Strides Miracles Team. I know most of my followers are CFers or CF caregivers and form their own individual Great Strides Teams. If any of my followers do not have a direct connection to CF or are not dedicated to donating to a particular team, feel free to make a donation to my Miracles Team.

Great Strides is the CF Foundation's most successful fundraiser of the year. Great Strides Walks happen all over the country! We use these donations (and all donations from other events as well) to fund clinical trials and research to find a cure for CF. We have made so many advances over the last year towards finding that cure....and now are extremely close. But we cannot continue making these advancements without your help...physically and monetary. So I highly recommend making a donation to CF to help make this happen. All donations are tax deductible and you will have the wonderful feeling that you are truly making a difference in the lives of those with Cystic Fibrosis.

I have had a Great Strides team for many many years, and are very excited to see what 2010 has in store for our local Chapter walks. Clicking on the Great Strides widget to the right will take you directly to my Great Strides Home Page, where you can make a donation and/or sign up to participate in the walk-May 22nd for Birmingham, Alabama.

Thank you in advance for your support. And thank you to all of the CF families that have created a Great Strides Team....we really appreciate your effort and support.

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!

Checking In...

Sorry for not blogging much this weekend. As you know, I was discharged from the hospital last Wednesday afternoon. Thursday was spent resting and just hanging out at home. Friday, my Mom and I began moving furniture downstairs, cleaning, and moving stuff back in the house from the garage.

We finally got our carpet installed downstairs this past Thursday. About a year and a half ago, we had a plumbing leak, and it flooded several rooms downstairs, including part of the den. Ever since then, our floors have been concrete and covered with rugs. The entire downstairs has been recently painted, and the bathroom is being renovated as well. The decision was made about a year ago for me to move downstairs, so I could have my own little suite. FINALLY!! I love my parents very much, but I've also really really needed my own space. So now the carpet is installed and we are moving furniture in, out, around little by little. Friday night through tonight was spent working really hard. It will still probably be another week or so before everything is moved downstairs.

I will have a bedroom, own bathroom, and another misc. room that I am using for scrapbooking and storage. I will be able to use the den to watch TV, hang out with friends, etc., instead of having to share the upstairs great room with my parents. We have a so-called bedroom also downstairs (in addition to the other bedroom). It doesn't have a closet, so it can't technically be a bedroom, but it's a really good size/space. I am finally going to have an area for scrapbooking, space to spread out, scrapbook storage, etc. I'm more excited about this than anything :)

Tomorrow I start my school semester (for me that is). This is actually the 3rd week of classes, but the 1st day I am able to attend. I'm really nervous and don't like coming in behind. Last Thursday I still didn't feel that well, so did not attend classes. My nutrition class instructor has been very nice and posts everything online, including her audio lectures. So I'm not worried about that class. My physiology lecture instructor knows I was in the hospital with pneumonia and is excusing me from missing class. However, I know I am behind in reading. He has posted his power point notes online. My physiology lab instructor is deducting points off my grade, despite me providing him with an excuse (luckily it's only one class). He said there were more penalties for unexcused absences. But it still really frustrates me that I have to loose points because I was sick with pneumonia and in the hospital. I think that is just WRONG!!

Sorry for the long post!! I will definitely be back on track for blogging. I hope everyone had a great weekend!!

Home, Sweet, Home!

I'm home! I got home yesterday afternoon and are thoroughly enjoying it. I didn't feel up to going to class today. My plans are to get back full swing into classes on Tuesday. I'm looking forward to a restful 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.