Aztreonam Approved!!!!

I know several of you actually participated in studies of this drug. I actually was in the study as well, but discontinued it due to side effects. However, on Monday, the FDA approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. The drug was made possible by significant support from the Cystic Fibrosis Foundation, including an early $1 million investment to help develop the therapy. The approval of Cayston demonstrates that our drug development model, fueled by donors and volunteers like you, is working and making a real difference in the lives of people with cystic fibrosis.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics. Cayston is used in a 1 month on, 1 month off cycle, similar to TOBI. Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics. This shortened delivery time reduces the burden on patients, who -- on average -- have a treatment regimen of three to four hours per day.

“The Cystic Fibrosis Foundation’s early funding and ongoing support for Cayston played an important role in bringing this new therapy to patients,” said Bruce Montgomery, M.D., senior vice president, head of Respiratory Therapeutics, Gilead Sciences. “We are thrilled to help meet an urgent medical need for CF patients, and to support the Foundation’s mission to improve the lives of people with this terrible disease.”

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians. You can also visit their website for more information. Also, attached here is an official drug information sheet for patients.

The Cayston Access Program assists with reimbursement and access to Cayston. The Cayston Access Program reimbursement specialists can answer questions related to insurance coverage, financial assistance, specialty pharmacy referral, and claims appeal support. Attached here is a brochure with more reimbursement information.

6 YEARS!!!!!!!!

Today, February 25th, 2010, I celebrate my 6th Transplant Anniversary. God has given me this miracle gift and I am so thankful for it. I'm thankful for my Mom and family friend sacrificing their lives to give me a chance at living again. It's amazing...especially since I received a living donor transplant. It's been a rough year, but I'm so thankful I am still alive, and able to pursue my dreams and goals in life! Nothing will stop me from doing that!

I will share more later! I had a major physiology lecture exam earlier today and are currently studying for a physiology lab quiz tonight (in about an hour)....so can't "play" on the computer! Will update later tonight!

Thank you to those who have already left comments on facebook. I'm so honored to be a part of this Wonderful CF Community of Bloggers!

Novartis CF Facebook/Twitter Resources

The CF Team at Novartis Pharmaceuticals Corporation is delighted to inform you that CFVoice has just joined the 300 million plus people on Facebook, where more than 45,000 are fans of CF-related pages. Novarits is proud to provide an online community for people living with cystic fibrosis. CFvoice is a place for motivation, inspiration and connection to the CF community.

Christopher Morgan, the fictional character from the Becoming Christopher and Christopher Chronicles films has joined Facebook and the 13 million people on Twitter. Christopher Morgan was created by Novartis Pharmaceuticals Corporation as an educational resource for the cystic fibrosis community. His story is inspired by research and interviews with people with CF, their friends, healthcare providers and caregivers. Join today to start receiving CFChristopher's tweets and to become a fan on Facebook.

Check out the CFVoice Facebook fan page for great CF content. This gives the CF Community another CF resource to keep up-to-date on CF-related news. And plus, most of us are on Facebook anyways, so it will be very convenient.

Lack of Posting/Misc Update

Sorry for the lack of blog posting this past few weeks. Things have been crazy...school is crazy and if I have any free time, I'm trying to spend it studying. I have a huge physiology lecture quiz due tomorrow, an exam next week that I really need to do well on, and several other things for my other 2 classes.

A quick health update: the TOBI has seemed to work pretty well in keeping this pseudo sinus & lung infection under control. I haven't felt any worse since my clinic appointment last week. However, I finish my oral Cipro tomorrow (which I was on for the sinus pseudo infection). I still have 2 weeks left of the TOBI, so I'm praying the infection will clear up even more. I still don't feel 100%, and could really use some additional energy.

My back is still very extreme/sever pain, and it's getting really frustrating. It has prevented me from attending some classes, and overall being able to do a whole lot. Driving irritates it, so I've been limiting my driving. I'm not sleeping well, because i can only lay on one side without being in too much pain. I had missed my physical therapy appointments last week, but got back in yesterday. I'm hoping those visits will help. I'm taking so much pain meds, it's crazy...and when I get in a lot of pain, it makes me feel like crap. I have a HUGE pain tolerance, so when my pain level is over 10...it's bad. And today it's bad. I would love some relief.

I had the opportunity to speak to a group of people about CF on Wednesday. It was a committee that is in charge of deciding which organizations to support for the University of Alabama at Birmingham. They have been supporters of CF for awhile, and wanted one of the "agencies" they support to come talk at their meetings. So the council president invited the CF (in particular me) to come speak. They had written an article about CF/our local CFF/and myself for their newsletter publication. So their 1st meeting, which consisted of the council/committee members was Wednesday. There were probably about 25-30 people. I talked for about 10 minutes and according to other people, the speech went exceptionally well. Some of the members asked questions at the end...which I love. To me, asking questions, indicates they really paid attention to what I said and are really interested in Cystic Fibrosis.

I will speak at 3 more of their meetings in March, in which employees are invited to come and see what agencies the Committee supports and how they are involved in the community. I'm really excited about those meetings as well, as it will be employees showing interest in what this committee does, which in turn means interest in Cystic Fibrosis.

My brother's birthday is tomorrow, and he is coming home this weekend to celebrate. Other than that, I plan on resting this weekend and studying like crazy.

Oh..and I did not attend my Neurology appointment last week (which was for my intense hand/body shaking) due to the weather (snow). I have not rescheduled it yet, and may be delaying it somewhat.

I hope everyone's week is going well. Just one more day until the weekend :) I will try my best to post updates more frequently. Next Thursday, I will celebrate my 6th Transplant Anniversary. God has been so great, and I feel so blessed to be here, alive today, and able to pursue my dreams.

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.

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!