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.

Sorry-Here is an update

Sorry for the long time lapse since last posting. It's been a little busy around here. I'll give more details and catch you up on what's going on throughout the week.

But just briefly: I finished IV abx April 15. Luckily, i have not had to go back on IVs since then. I am though currently taking oral Cipro antibiotic.

I finished up the spring semester with B's. I actually start summer semester classes today-Monday the 23rd. I had a two week break.

Last Wed i went to the beach with some family. I got back yesterday (Sunday). The weather was beautiful, but very hot Saturday; no rain (which was nice), so i was able to enjoy being outside for 5 days. Definitely a relaxing trip. And i think the beach air really perked me up and i felt so much better. I'm still on Cipro for another week, and still using oxygen, Xopenex nebulizer and oxygen at night. However, my oxygen saturations have been a good bit better and I've been able to decrease the amount of oxygen i wear at night. So praying that i feel great this summer, since i have an extremely heavy load of classes.

Our local CF Great Strides Walk went extremely well! I will post about that later.

Hopefully you haven't given up on me blogging :) I still read your blogs, but hopefully I'll be more consistent with updating and posting interesting, fun things that are going on with me :)

More updates to come!

Cycling

It seems like I've been on a cycle of being sick and not being sick since about October of last year....it's getting kind of annoying. And I Hope this is the last time I'm sick for a good long while.

I did 2 weeks of home IV antibiotics starting Feb 23rd...so ended these about 3 weeks ago. I also did steroids at that time, as well as went on supplemental oxygen at night and during the day if needed. After I finished the 2 weeks of abx, I did feel somewhat better for about 2 weeks. Then last week I started getting sick again....but then had 2 days where i felt pretty good (guess it was the "Calm before the storm"). I already had a follow up clinic appointment schedule for today (Wed); However, Monday I felt a whole lot worse, and my oxygen sats had dropped to 82% while walking to my car at school. They had been around 88-89%, although there was an 85% one day last week. I also had a low grade fever Monday as well, and a productive cough decided to present itself along with everything else. I called my coordinator and I started on Cipro Monday evening; We agreed that I would be ok to wait to be seen until clinic today, after talking with my coordinator again yesterday (Tues);

So the verdict from clinic today was: still nothing major showing on my xray; PFT's about the same as last visit, which wasn't good. I had the choice of coming in the hospital or doing home IVs again; so I chose the home IV route, since I'm still doing clinicals for nursing school. So I'm doing Ceftaz for 2 weeks in addition to oral Cipro; continue the oxygen; and another steroid taper.

We also talked about doing a bronch to check for rejection; he said it was probably not rejection, but that you never know so it's probably a good idea. I haven't had a bronch in about 1.5 years. We are going to schedule the bronch, for hopefully April 11th-a week from next Monday. I only let one particular doctor do my bronchs; I have a test next Monday and other assignments, etc., so he was fine with waiting til the following week.

This really takes an emotional toll on me as well as physical. Round 4 of IV antibiotics since October....definitely not like me (or it's never been this close together); hoping this does the trick or we figure something else out that clears this stuff up for good. It's really hard going to class when you can't breathe very well. But i'm determined to go and not miss class; I'm supposed to take it easy, per doc and coordinator orders.....just trying to decide how and what area I'm going to do that in????

I will definitely update after the bronch or when i know results from it or if anything happens before then; School is crazy and we are, thankfully, nearing the end of the semester. One more exam in each class in addition to ATI exam (which mocks our licensure exam); 1 more pharmacology assignment; 3 more Psych clinicals; we are required to attend an open public AA meeting for Nursing Psych class; so i did just that tonight. It was very interesting. I have several papers to write for that class too!! Crazy!!!

Good night...clinicals tomorrow, so need some rest. Looking forward to the weekend, and most of all, hopefully feeling better, especially more energy and higher oxygen levels.

Recap: About Me...Part II

So I'm picking up from where I left off. The decision was just made for me to be evaluated for a lung transplant at St. Louis Children's Hospital. I went through the evaluation process and ended up being a good candidate for lung transplantation. So I became listed in the spring of 1998 (7th grade). However, my health actually began to stabilize and hospital stays weren't quite as frequent.

Although I went in the hospital several the summer before 9th grade..... 9th grade proved to be a very successful year. We began to get calls from St. Louis stating that they had lungs for me. However, because my lung functions had improved somewhat and I felt pretty good, we passed on the lungs. At this time, if you passed on lungs more than 3 times, you had to consider going off the lung transplant list or becoming inactive. During my 9th grade year, the decision was made to be reevaluated and become inactive on the lung transplant list. Being inactive allows you to still accumulate (or it did at that time) time on the transplant list, but not actively be listed. (Note: UNOS has now changed the guidelines/criteria where placement on the lung transplant list is based on severity of illness, not accumulation of time; therefore, the sickest people are put at the top of the list)


Beginning in 9th grade, I did exceptionally well (for me, that is). I only required hospitalizations once during the summer. I was able to go through the school year without missing any school (for CF that is). It was great. I was involved in many honor societies and community service groups, and managed to maintain an above 4.0 grade point average. I really thought things were turning around! I had a great year hanging out with my friends and just enjoying life overall!

During 12th grade, I decided to go in for a tune-up during our Christmas break of the school year. I felt like i could not wait until the summer, like I had done for the 3 previous years. However, after being discharged, i knew my health was not as good as it had been and had not responded as well to the antibiotics this time. During Spring Break of my senior year in high school, my health took a turn for the worst, and there was no "bouncing" back this time. I went in the hospital E.R. during Spring break with an O2 level of around 50%, and having a very difficult time breathing. It was during this stay, that I became dependent on oxygen 24/7. Although I only spent about 3 weeks in the hospital, I was required to finish up the school year at home.

Recap: About Me Part I

So since I just celebrated my transplant anniversary and have so many new followers....I thought I would post some of my first original posts about me (with a little editing).
So..here it goes: About Me Part I.

I was born in February of 1985. I have 1 brother, who is 2 years younger, who DOES NOT have CF. I have 2 wonderful and loving parents and a very supportive family.
I was diagnosed with CF shortly after birth. I had an intestinal blockage at birth, which was the 1st indication I might have CF. I was able to live a fairly normal life until the age of about 7. At that time, I began doing CF therapies and added some additional medications. I also went in the hospital for the 1st time for a CF "tune-up." For those of you who don't know, CF patients go in the hospital for "tune-ups" where they receive IV abx (antibiotics) to help give them a boost and to feel better. CF patients have frequent lung infections, so these "tune-ups" help to halt the infections and/or make them less severe when they do happen. I was then able to wait another 3 years, until the age of 10, before I had to go back in the hospital. I've always attended a public school, and was able to have a fairly normal every day routine and life like any other kids at that time. I danced when I was little and in preschool! I started gymnastics when I was 5 years old and continued until I was 11, in the 5th grade! I LOVED gymnastics, and would have continued it if it wasn't for the g-tube placement.

At the age of 10, my CF started to get progressively worse. Hospital visits were more frequent and I was having trouble keeping up with day-to-day things, especially physical activity and weight gain. In the 5th grade, I went in the hospital about 3 times that year. I also got a feeding tube to help with gaining weight and nutrition. From about the 5th-grade until the 8th grade, hospitalizations were about every 3 or 4 months and things really started to go down hill. Beginning in 5th grade, I started wearing oxygen at night, which greatly limited slumber parties, etc., with friends. Nevertheless, I still attended a public school and was part of many school organizations including the Honor Society, advanced classes, etc. Until about the 8th grade, I never told any of my friends I had CF. They just thought I got sick frequently. My family and I were and still are very strong in our faith of Jesus Christ, which makes these situations so much easier to handle and endure. In the 8th grade, things began to change dramatically.

In January of 1998, I went in the hospital for a what was supposed to be 10-day tune up. During this stay, I "caught" the flu (yes...in the hospital), which made my health take a huge turn the wrong way. I spent 5 1/2 weeks in the hospital that time (which included my b'day and Valentines' Day). The decision was also made for me to get evaluated for a lung transplant. I had just turned 13 at this time. This was a huge shock for me and something I did NOT want to do. But I didn't have a choice and my parents made my decisions for me. In spring of that year, I traveled to St. Louis Children's Hospital to be evaluated for a double-lung transplant.

To be continued.....

7 YEARS!!!!!

Wow! On this day, February 25th, 7 years ago (2004), God gave me the most wonderful gift of all: a miracle; a second chance at life. WOW!!I can't believe it's been 7 years...time flies!!

A special thanks to my donors: my Mom and Jeff (family friend). I know some of you are new to my blog, so I've decided to re-post my "About Me"/Intro posts when i started my blog, that recaps my story. I have been blessed beyond bless and are so excited to see what life has in store for me. I know I have my ups and downs (getting sick), but I always seem to bounce back and jump right back into my normal, daily (sometimes stressful, but wonderful) life. I'm getting closer and closer to pursuing my career dreams!


I've had a lot of close friends pass away recently, some that are really sick (post and pre-transplant) and some waiting for their 2nd chance as well. I am praying for these people every day and for God to touch their life in an amazing way. I'm sure most, if not all, of my followers are organ donors (those that can be-medical-wise)...but if you aren't...i strongly encourage you to be one. It's a wonderful gift that you can give to someone else.


We've had exciting news in the CF world as well, with the VX-770 drug getting astounding results. We are looking forward to it being approved by the FDA and get on the market, so it can start saving lives as well. We are definitely making Great Strides in the world of CF!! And i really encourage you to be a part of that.


I'm ecstatic to be celebrating a special anniversary today! God is good; and a special thanks to all my family, friends, and medical team members that have cared for me pre-transplant and now post-transplant..for allowing me to live my dreams and pursue my goals, for taking such great care of me, and for being a wonderful support system!! Thank you!

Question for my readers-Enzymes

I have a question for those of you who follow my blog! As some of you know, Ultrase Digestive Enzymes are not being manufactured anymore and most pharmacy's are out of stock. I had a couple of extra months, but I'm on my last bottle. For those of you that have taken Ultrase MT, what have you switched to? Or have you switched yet? or what are your thoughts? I have been on Ultrase my entire life and hate to introduce something new to my tummy :)   I have a supply of Creon. I've heard different stories of Creon....of it working, and of it not working very well. I read on the directions that you have to take Creon enzymes 1 hour before you eat something. Well....that doesn't really work in my fast-paced world. With school, etc., there is no way possible for me to remember or have the time to take them 1 hour before I eat. Half the time i don't even know when i'm eating. The great thing about Ultrase was you had a 2 hour time-frame. You could take it within 2 hours before or after you ate.

I know the other choice of Enzymes is ZenPep...which is fairly new. Are there any other choices? Having had a transplant, I don't see a CF doctor, although some of our transplant doctors are CF doctors. I haven't had the chance to ask 1 of the docs.

So i have no clue what to do. Advice? Suggestions?

Thanks!

Great news!

Yesterday (Thursday), the U.S. House of Representatives passed S. 1674, the Improving Access to Clinical Trials Act. Following last month's passage by the U.S. Senate, the bill now heads to the President's desk to be signed into law.

This bill will allow people with CF to participate in important clinical research without losing their public health coverage. By removing barriers to participation in clinical trials, we can speed the development of promising new CF therapies and get them into the hands of the patients who need them.

The Cystic Fibrosis Foundation identified a significant barrier to participation in clinical trials and worked with Congress to write this common sense legislation.

This momentous achievement, almost five years in the making, would not have been possible without the thousands of letters written, calls made, and meetings held by dedicated CF Advocates like you.



YAY!!!

Senate Passes Clinical Trials Act!

This past Thursday night, the U.S. Senate passed S. 1674, the Improving Access to Clinical Trials Act, by unanimous consent.

All that remains now is for the House of Representatives to pass the bill as well. Even if you have already asked your Representative to sign on to the bill as a co-sponsor by clicking here. Now is the time to tell the House to pass the Improving Access to Clinical Trials Act.

The Improving Access to Clinical Trials Act would allow people with CF who are on public benefits to participate in important clinical research without losing their health coverage. To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove barriers to allow more people to do so.

Tell your Representative to pass the Improving Access to Clinical Trials Act today!

Creon Survey.....Paying $50!!!

Patients taking the pancreatic enzyme medicine CREON ® (pancrelipase) are needed to participate in assessing the CREON drug safety program. Eligible patients or their caregivers will complete a 15-minute internet or telephone survey and will be paid $50 for completing the survey. Patients and caregivers may only take the survey once. For more information and to see if you are eligible to participate, please contact BioTrak at 866-866-5856 or support@biotrak.com

I don't take Creon, but on CysticFibrosis.com, several people have commented they have taken the survey and gotten paid! So check it out if you do take Creon enzymes!!

This was in the latest issue of CysticFibrosis.com email newsletter.

CF Great Strides Walk Survery

Have you completed the Cystic Fibrosis Foundation's Great Strides Walk Survey?

You walked the walk, now talk the talk!

As a part of Team CF, your input is very important to the National Cystic Fibrosis Foundation. Tell them about your GREAT STRIDES experience by taking a brief survey.

It takes less than five minutes to complete the GREAT STRIDES survey. Your feedback helps us improve future events to better serve the CF community. I really want to encourage everyone who participated in a Great Strides Walk this year to complete this. So...take a few minutes right now to take this survey..... it is VERY SIMPLE, and literally, takes less than 5 minutes! Your feedback is important!!!

Also....as a huge advocate and volunteer with my local CF Foundation....I would love to hear your feedback as well on your local Great Strides Walk that you participated in. I would love to hear what activities you had, if any; what food was provided, if any. Did you have a team? What did you do to fundraise? to recruit team members? What works best for you? I find it beneficial knowing how other Great Strides Walks work in different parts of the country. It gives each of us ideas, that we may have never thought of. Or we might can help you come up with ideas for next year's Great Strides Walk. I love giving feedback, and helping wherever I can. Not only do I have my own team, but I've also worked on staff at our local CF Foundation and have experience "behind the scenes." I usually try to attend all of our chapter's walks if possible!! So feel free to share your experiences and feedback as comments to this post, or you can email me!!!

THANK YOU!!!

Register for CF Webcast!!!

Produced by the Cystic Fibrosis Foundation, this innovative series of Web casts brings the cystic fibrosis community together in a “Virtual CF Education Day” forum to learn from the experts about living with CF and the latest in CF research."Take the guesswork out of working with your CF care center!"

When: Thurs., Aug. 19 (8:00 p.m. ET) for a live Web cast, "Partnering for Care: Help Your CF Care Center Help You Thrive"

Watch this free Web cast for tips on working with your CF care providers to maximize your or your child's CF care.

The Web cast will feature CF experts:
Peter Mogayzel, Jr., M.D., Ph.D., Director of the Johns Hopkins Hospital CF Center and Pediatric Lung Transplantation

Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program

Drs. Mogayzel and Boyle will address questions about the following topics:

• How to partner with your child to reach your goals in managing CF
• How to partner with your care center in the transition from pediatric to adult care and the varying aspects and concerns with the change
• How to partner with your adult care center to successfully manage CF in your daily life
• How to partner with your care center when considering lung transplantation.

You can submit questions when you register and also during the live broadcast.

Click here to register for the webcast!

Honoring Americans with CF

This was information sent out by the CF Foundation in a recent email!

As we celebrate our nation's birthday, the Cystic Fibrosis Foundation is proud to honor all of the Americans with cystic fibrosis who celebrated birthdays of their own this year.

Like so many people across the country, the 30,000 children and adults with CF dream of a better, richer and fuller life.

We asked a few of these special people with cystic fibrosis, as well as others in the CF community, to share their own unique dreams for the future. Their dreams humble and inspire us.

Will you give a gift today in honor of your fellow Americans with CF? Your gift helps fund lifesaving research, care and education programs for people with this disease. With your continued support, people with CF will celebrate more Independence Days, birthdays and holidays of all kinds.

Click on the links/thumbnails below to donate either to the CF Foundation National Chapter or my Great Strides Miracles Team!

Thanks to generous support from people like you, the length and quality of life for people with CF have improved dramatically. Nearly half of all people with CF are age 18 or older.

CF Great Strides Walk

We had our local CF Great Strides Walk this past Saturday. The weather was beautiful and we had a great turnout. And more importantly, lots of money was raised to help find a cure for CF. My Miracles Team had a great time. Thank you to all who came out to the event and to those who supported CF via donations. My team did exceptional on the fundraising....and the fundraising is still going on. I originally set my team goal at $5,000. As the days and weeks passed, my team was doing so great, I increased my goal to $7,000. We have surpassed that. Our totals have not been added yet from what was turned in on walk day, but my guess is over $8,000....which is AWESOME. Go Team Miracles! I also exceeded my personal goal of $3,000 and are currently a little over $4,000....trying to reach $5,000!

I have a few extra Miracles Team t-shirts available if anyone is interested. Here are pictures. They are navy blue; Gildan Ultra Cotton/Pre-shrunk brand; Sizes available are: 3 Adult Smalls, 1 Adult Medium, and 1 Youth X-large. (The sizes run big....much bigger than in previous years. I usually wear an Adult Small, and actually wore a youth X-large this year instead). The t-shirts are $10 each (not including shipping). Let me know if you would like to purchase one. Your payment (with the exception of shipping costs) will be donated back to the CFF. Thanks!

I will post more pictures from the walk later this week!

CF Foundation Announces Congressional Briefing

The CF Foundation is delighted to announce that Dr. Robert J. Beall, president and CEO of the CFF and Dr. Francis S. Collins, director of the National Institutes of Health (NIH) will brief the United States Senate on the ongoing efforts to develop promising medical research for rare diseases this Thursday, May 20.

The briefing will discuss how funding for medical research at NIH can be used to more quickly create new therapies for patients and save lives. The NIH is the primary federal agency for conducting and supporting medical research. Speakers will also discuss the lessons learned from the cystic fibrosis community’s successes in medical research that can map the way for other diseases.

Dr. Collins, a distinguished geneticist who led the international effort to map the human genome, is the co-discoverer of the cystic fibrosis gene. He will examine how funding for medical research at the NIH can be used to speed the development of new treatments for patients, and discuss the lessons learned from the cystic fibrosis community's successes that can map the way for other diseases.

Click here to listen to Dr. Collins talk about his dream for Cystic Fibrosis.

We need your help to make this important event a success. Click the below link to contact your senators!

Call your senators today and urge them to attend this exciting event!

Don't forget that May is National Cystic Fibrosis Awareness Month!

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.

CFF National Volunteer Week

This week is National Volunteer Week for the Cystic Fibrosis Foundation, and we’d like to thank the many volunteers across the country who support our lifesaving mission.

Each year, extraordinary people like you give their time, talents and money to the search for a cure.

On behalf of the Cystic Fibrosis Foundation and all those affected by this disease, thank you for your generosity.

Our progress in the search for a cure would not be possible without you!

I would highly encourage those who don't normally volunteer to contact your local CF Chapter for volunteer opportunities!

Sincerely,
Cystic Fibrosis Foundation

Take Your CF Deductions!!!!!

Join KnowCF members members LouLou, VMHoward and Julie in their first video conversation about Taxes and CF! I have not listened to this video yet, but based on the topics covered, I am very interested. I highly recommend checking this out, as a lot of CFers and CF family members are not familiar of what they can and can't deduct on their taxes related to CF!

**Moms/Dads**....definitely check this out if you are unfamiliar of what you can deduct! Look at the Nutrition and the Back at Home topics below!

This topical video series (three segments) focuses on United States tax law and deductions that may be allowed for health reasons. This engaging team has worked hard for your benefit, doing extensive research, sharing their stories, and designing a meticulous yet simple-to-grasp spreadsheet for you to model as you organize your own savings possibilities.

Three of the KnowCF e-Patient members, Lauren, Victoria and Julie have organized information on CF healthcare costs and tax deductions. These Health Opinion Leaders (HOLs) explain which expenses qualify for deduction and how to track expenses. They have created roughly fifteen minutes of engaging and polished footage on this very valuable topic.

These are the topics they will cover: (I have not listed every single topic and question. You can visit the website for more information and details)

1. What sort of medical expenses are deductible?

2. What is AGI or adjustable gross income, and how do I know if I should itemize or just take the standard deduction? How much do I need to have in deductions in order to be able to use them?

3. Can a caregiver use these deductions too?

4. What about special equipment and materials for cleaning my nebulizers?

5. What about things we wouldn’t be doing if it weren’t for CF, such as special disinfecting cleaning products and HEPA filters for indoor air purification?

NUTRITION:
6. Obviously healthy people eat food, how do I know what I can attribute to CF?

9. Are my vitamins deductible?

8. My child drinks nutritional drinks recommended by the doctor. Are those 100% deductible, or must a percentage be deducted that would not be attributable to CF

EXERCISE:
11. Is there a way to deduct my gym membership?

CF CLINIC:
12. the travel to my CF center deductible? Can I deduct miles to and from the doctor?

13. Can I deduct anything related to my transplant?

14. What about when my child is inpatient, can I deduct visitation mileage, parking, hotel and food?

BACK AT HOME:
15. Are home improvements deductible? / Can I claim home improvements that I made as a deduction?

16. Can I deduct the cost of trash?

17. How do I deduct electricity?

Click here to visit the KnowCF website! I personally have never come across this resource website. It branched from the CysticFibrosis.com Website. It looks like it can be very beneficial.

ACCESS - SHARE - GAIN AWARENESS

VOTE for CF!

I have a very special and close CF friend of mine who is currently waiting for a transplant. She is very sick and needs one soon! Toyota Racing's Sponsafy Your Ride Contest is currently under way! I'm not sure the exact details the winner received. However, the design that you are voting for will be applied to a 2 seater Nascar Show Car and the winner will also receive a trip package to see the Nascar Sprint Cup All-star Race! This would be huge for CF and Organ Donation....getting that awareness out and people recognizing JadaBug's Car...."Cure CF and Be An Organ Donor" for Jada!



Click here to Vote for JadaBug! There are 13 days left and you can vote every day! There are over 9,000 entries, so she really needs your votes! As always, thank you for your support!

New & Improved Pancreatic Enzymes

Although pancreatic enzyme therapies have been around for decades, they are now undergoing a more rigorous review to help ensure that people with cystic fibrosis receive only the best, most effective and safest enzyme treatments.

In 2004, the U.S. Food and Drug Administration (FDA) required that all pancreatic enzyme replacement therapies currently on the market be reformulated and undergo clinical testing in order to receive FDA approval.

More than 90 percent of people with cystic fibrosis take pancreatic enzyme replacements to help the body absorb essential vitamins and nutrients. In CF, thick, sticky mucus builds up in the pancreas, preventing the release of important enzymes that aid in digestion. This build-up can lead to malnutrition. Pancreatic enzymes combat this problem.

The first pancreatic enzyme replacement therapy to be evaluated and approved under this new mandate was CREON® by Solvay Pharmaceuticals, Inc. CREON received approval in May of 2009.

In September 2009, Eurand N.V. announced that the FDA approved its enzyme product, ZENPEP™ — the second enzyme therapy to be granted FDA approval.

In addition, Alnara Pharmaceuticals, Inc. is completing a Phase 3 long-term safety study of an enzyme called liprotamase. Following completion of the study, Alnara will carry out clinical and regulatory activities needed for FDA approval.

Other companies completing clinical trials for pancreatic enzyme products include Axcan Scandipharm (Ultrase® ), Digestive Care, Inc./DCI (PANCRECARB® ) and McNeil (Pancrease MT).

FDA review is an important step to ensure that people with CF are getting the maximum benefit from their pancreatic enzymes.”

Because there is a connection between better lung function and higher body weight, pancreatic enzymes are a vital part of CF care. It is important for people with CF to take pancreatic enzymes with all meals and snacks.

You can click on any of the links above for more information on a specific enzyme, or pharmaceutical company!