Update Coming!

I promise I haven't forgotten about the blogging world! I have been extremely busy with school, and feel like every free moment is spent studying. In addition, I've been doing a whirlwind of speeches for the CF Foundation, and will share more on that later! I promise to update by Friday and other posts are planned for this weekend as well. I've been able to read a few blog, but not many! I promise I haven't forgotten about you :) I hope everyone is having a great week!.....Back to studying :)

Another Weekend-Wrap Up

Once again, I haven't had much time for blogging. Therefore, I'm doing a wrap-up post, updating from the last week or so.

This week was my spring break. I had 2 goals: catch-up/get ahead on my school work, and do some scrapbooking. Unfortunately, #2 goal didn't happen. The first goal was partly accomplished. This week flew by so quickly, and I wish I was so much more ahead in my school work/studying.

I did several CFF volunteer stuff this past week as well. Wednesday, Thursday, and Friday involved meetings regarding CF Great Strides. Friday also included speaking at our Children's Hospital Child Life Services Retreat. Myself and our local CFF director presented at this retreat. Then afterwards, we met and discussed more on Great Strides. I also attended a bridal tea on Saturday, and babysat multiple times since last weekend. So all-in-all, it has been a busy last few weeks.

Time is definitely flying by, and the end of the semester is drawing near....which means one thing: I better get on a roll and study my heart out so I can do really well on the last few remaining exams. YIKES!

A Health Update: things have been going pretty well. This weekend hasn't been the best however. I'm really hoping I'm not getting sick. I'm only 2 weeks out from my TOBI, so my only option would be to start the inhaled Colistin. I'm going to give it a few more days and see how I feel. My back pain has been going back and forth. I also started exercising...YAY! I'm really trying my best to keep it up. I've also been making myself drink water, as I don't really put forth much effort to accomplish that on a daily basis. I know my body needs lots and lots of it, so I'm trying extra hard to drink 1 bottle per day (I use to drink 1 bottle per 2 weeks). I did get in some good sleep this week, which as helped my energy level some.

In other news...my curtains (valences) are finally up in my room!!! Also, the manufacturing company that makes the decorative stool I bought at Home Goods is willing to ship me one from their warehouse in California. She is charging me the same retail price plus shipping. I was surprised she offered that to me, since they are a wholesale company. She checked all the local stores and no one carried the product nor had ordered on the next shipping cycle. So I think I'm going to accept her offer! I will post a picture soon that shows the valences and everything together (my bed isn't made currently...lol).

This coming week includes a project due for my Nutrition Class, classes, another CF speech, another CFF meeting for Great Strides, an Auburn Singers Concert for my cousin, and 2 PT appointments for my back.

A few more things....today is Brandi's birthday....so head on over to her blog and give her some birthday love!

Have you voted for Jada Bug? Click here to vote! Only 8 days left! And you can vote once each day!

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!

Weekend Wrap-Up

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

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

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

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

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

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

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

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

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

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

TOBI Resources on Facebook

Novarits Pharmaceuticals has created a resource page on Facebook, for TOBI. You can click here to visit the Facebook page and become a Fan!

TOBI (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. TOBI has not been studied in patients under 6 years of age, in those with a lung function outside of a certain range, or in those whose lungs contain bacteria called Burkholderia cepacia. Ask your doctor if TOBI is right for you.

Have you heard about the TOBI Co-Pay Program? Pay only a $10 co-pay for TOBI. Call 1-877-999-TOBI (8624) to confirm eligibility and enroll.

• How should TOBI be stored?


• How should TOBI be incorporated into a treatment routine?


• What's the difference between TOBI and compounded IV solutions of tobramycin used for inhalation?

Find the answers to these questions and other FAQs here, or visit the Tobi official website by visiting here.

There are a lot of us CF Bloggers (pre and post transplant) that currently use TOBI. It is one of the very few drugs that can treat the pseudomonas infections quite well.

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!