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!

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.

Happy Mother's Day!

Happy Mother's Day to all you Moms!!! I'm so blessed to have my Mother. She is so wonderful and has gone above and beyond for me...including saving my life. I literally would not be here today if it weren't for her. And I'm just not talking about giving birth...but giving me a part of her lung to save my life back in 2004! The ultimate sacrifice....and there are no words or emotions that can express my appreciation and love to her! I LOVE MOM!!

And of course I wish my grandmother's a Happy Mother's Day too!

I hope everyone has a wonderful Mother's Day! May God bless and continue to bless all you Moms.

Here is a picture of My Mom and I this past Christmas!

This is from Graduation last May (and yes...my hat did not fit and my hair was kind of funky that day...so I know it looks good...not the point of the picture)!

It's Over!

FINALLY!!! A break from school! I finished my last final Tuesday morning....and I am so ready for some rest. My body has never been so stressed in my life. Not just from school but a few other things too, such as back pain.

So I promise to post more often now! I don't start summer classes until June 1st. I will post more later..but here is a quick update of what's going on and what's to come:

My back is still continuing to give me major pain. I have a very high pain tolerance...so when I'm in pain to where I'm in tears, can't sleep, can hardly move sometimes...it's bad. So we are exploring some options. And I know some of it will get better now that all the studying is over for awhile (because I was spending 4-6 hours sometimes straight studying).

I had a transplant clinic follow-up appointment today. Everything looked good as far as lab work, chest xray, and PFT's. My PFT's were actually up quite a bit and they were very pleased. If I can just get the back pain under control (and having a few stomach issues), we will be good. The only bad thing is that my blood pressure has decide to sky-rocket! It's been fairly high..or rather, on the "edge" between normal and hypertensive probably for the last 6 months or so. I had mentioned it multiple times to the doctor; they didn't really seem too concerned, and it would sort of level off when I would start monitoring at home. But then over the last few months it has steady pretty high. At my neurology appt about 2 weeks ago is was 164/96...so it prompted me to start monitoring it at home again. It remained pretty high. Not as much for the systolic pressure (the top number) but for the diastolic (bottom number)...which is more concerning. And today at clinic, it was 183/115. So needless to say, I have started on blood pressure medicine.

I do have an update from my neurology appointment as well, that I will share in another post. The appointment was in regards to my excessive hand shaking.

I am supposed to find out in about 2 weeks if I have been accepted into nursing school.

I'm preparing for our upcoming local CF Great Strides Walk. We have almost met our team goal...just a little more to go....very exciting! I had plans on volunteering at a few the last few weekends, but was too tired, stressed, and in major pain...so had to miss out. But we have several others coming up, which I'm planning on attending.

I have another speaking opportunity next week as well.

So that is a brief update (although, i guess the length of the post wasn't really brief..lol).

More later...I hope everyone has been having a good week so far!

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.