Wednesday, November 5, 2014

My Lungs Inspiring Me

To Do a Bucket List for Cystic Fibrosis:


Lung function is one never ending battle we face. We can do all our meds, be compliant, and try really hard, then still see a decrease in lung function. We never know where we will pick up some bacteria or bug that will undo the work we have done! Its exhausting to think I do 9-11 breathing treatments and over 3 hours of therapies a day and see a decrease. I hope someday this will change.

I had Clinic (regular CF appointment) on Monday. My mom went with me to keep me company. I live an hour and 45 minutes from my Doc office, so it can make for a long day. This appointment was faster than most (lately I've had Trial appointments at the same time). My lung function (FEV1) was 52% by my Doctor's standards. Normal (non-CF lungs) tend to be between 90-120%. I'm okay with 52, but I wouldn't say I'm happy about it. My lung function has been pretty stable in the 50s lately. BUT, my goal is to always keep it above 50% & strive for 65%. In October 2013, I reached 64% after two weeks in the hospital. Obviously, after 2 weeks of IVs I was at my highest. Shortly after coming home I was around 58. So I'm using 56-58% as my baseline. Take a look at my lung function since 2010 (when it was at its lowest ever).

I'm proud of the overall increase, but I need to keep trying to increase it.























So yes I did decrease more in lung function from 55 to 52. I go back in 3 weeks to end the clinical trial I'm in and Doc will see how I'm doing then. Of course, his usual rule of thumb for me is: If I fall under 50% then its time to consider a "tune up" with IVs, but try to wait until 49% so not to have too many tune-ups & become resistant to the IV meds (Also I'm allergic to all of the antibiotics that fight my Psuedomonas). We try to avoid using too many antibiotics for that reason alone. We have pretty exhausted most options, so we have make sure the timing for IVs in just right.

Also, another issue brought up is weight. I've always had a very difficult time with weight! And I lost a lot about my G-tube was taken out: Read About it Here! It dropped because most of what I ate and drank leaked out. If you read the post I linked you will understand why I had all these issues and why it wouldn't heal. This of course lead to a surgery 4 months later to close it up. Then I was on a liquid only diet for 5 days, and soft foods for a few days after that.. I dropped to 98 lbs. Now I'm going between 99-100. I can get it back up to 108 lbs, but it will take some time. My stomach has shrunk from not eating and the stitches made it smaller. Also, with my typical CF digestive issues I don't absorb all the calories.

So my goal is to be back to 55% lung function and 103 lbs by November 24th ( my next appointment).

But wanna know what else I get to do at that appointment in 3 weeks! 

I get to dicuss 3 other clinical trials that my doc's office with be participating in and I will be deciding which one I want to enroll in. I'm excited to be doing another study, apparently with my DDF508 mutations, stable lung function, and 100% compliance I'm a good candidate. So keep enrolling me, I love being a part of active research!

This will make a total of 5-6 trials now! I did 2 or 3 when I was a child. Pulmozyme and Creon enzymes were both trials I did before the age of 15. Now, in the last year and a half I will have done 3! This last one with the antibody or placebo was my favorite! I can't wait until it is published and I can give you all the details and know which I received! Some new meds will decrease the numbers of pills we have to take everyday. If you could get rid of some of these meds, wouldn't you want to?

 My daily pills laid out on the table, with my breathing treatments and some equipment.

I think being invovled in research is important, It's just as important as the fundraising we do at the Great Strides Walks. How can I expect CF advances to be made if I'm not willing to help out. Also, I feel it is my job to do the trials, since not every CF patient will fit the criteria for the studies. It is up to the Individuals with CF to help in the research when they can, because it will take CF patients with all different mutations, ages, and lung functions to really find a the combo of meds we need to "cure" cf.  There has been a lot of talk about the new Vertex drugs for people with DDF508 and it is exciting, but it isn't a cure. It's a step in the right direction, learning more, and making our lives better. It does increase our lung function & weight for the most part, but that's it. We still have all the same meds, appointments, troubles as before. However, Vertex isn't the only drug company doing research. Right now there is a big push for companies to jump in to research CF (competition has been helping advance our drugs). Which is why I push to do as many trials as I can AND why I started the Princeton Great Strides Walk (click to read about it)!

I'm going to be 30 in April and now if ever is the time for me to stand up and do as much as I can. Before I have kids (& I'm super busy), before my lung function gets worse (& I'm unable to) , and now while the research for CF is "Moving Fast" (& it makes the most difference).

This is how I will remain active:

Behold: My "Making a Difference" Bucket List for 2015: 
  • Being involved in at least 1 research trial
  • Attend 4 Great Strides Walks (Champaign, Peoria, Princeton, Dekalb)
  • Attend 2 other CF Foundation Events (CF Climb, Chicago FestivAle)
  • Have over 200 people attend our PRINCETON WALK
  • Raise over $20,000 at the PRINCETON WALK
  • Do the CF Climb with Andrew next year! 
  • (also I want to do a 5K for ALS- not CF, but near & dear to me all the same)
Here is what we are doing to finish off 2014! Andrew is doing the CF Climb trying to bring our yearly total to $15,000. We are only $550 away from that goal! 

Check out the Promo Clip:

          
If you would like to donate to Andrew's goal: Andrew's Fundraising Page Here!    
















Following a  Bucket List seems like one simple way I can make a difference! I'm doing this not just for my health, but for any future generations (of my family or anyone) with Cystic Fibrosis. I'm fighting to help advance the reaserch for this disease because it has taken all my friends with CF at too young of any age. Most of my friends never saw their 18th birthdays and Laura was only 33 years old when she lost her battle this September. It's just not good enough.

So while my lungs are at 50% ish, some CFers are not so lucky. I've known 12 year olds who have already been through a double lung transplant. I'd never wish that on anyone. So all I can do is fight to cure CF.

What would your "MAKE A DIFFERENCE" Bucket List Look like???

PLEASE consider "liking" our facebook page to spread word & follow along our Journey through our bucket list (including updates about the Princeton Walk)  click here to "like" our Facebook Page 
 

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