Last CLINICAL Trial Appt & Health Update!

Clinical Trial and My Clinic:

So much to tell about today's doctor visit. I had my last clinical trial today! I started this trial in November and since then it has really helped me remain consistant with my medications. As a Pyschology major (and favorite class was my research statistics course)... Soooo yes, I'm a major nerd that loves experiments and crunching numbers to prove points...Therefore, I can't mess with data. So if Doc wants to keep me consistant with meds then enroll me in a trial. I refuse to mess up data for the well being of other CFers. So doing this trial really helped me keep on tops of all my medications.

And guess what!! Even though this one ended today, I'm starting another trial in two weeks! It's with a new drug/antitbody that is suppossed to help keep the Psuedomonas Aeruginosa under control. I don't want to say much, but I hope I get the exprimental drug opposed to placebo. I really want to see if it makes a difference, I'm excited about this one. It won't take away the PA I have, but IF it proves helpful it could lower the infections/damage the PA does and make it so we need to take less antibiotics. This will run from June- November. Which means I'll have participated in 2 Clinical Trials in one year!

Now, about the numbers I know everyone is waiting for... My weight is still stable between 105-108 (It's a little lowers right now, due to stomach tube problems, so no worries folks). And my lung function is still stable mid 50s. No change, which I'm okay with that. As long as I don't drop I don't loose any years off my life. That's how I see it. I'm still trying to get it to increase, I'll never settle and say "Oh, that's good enough." But, I'll still be happy knowing I'm not dropping at all!

Here are the newest/updated Chart!

Left:This is the Chart that tracks my weight!

Right: This is the chart with my lung function!


Doc said for sure I can get the stomach tube taken out as soon as the surgeon gets it all scheduled. It's leaking a lot and is very raw/sore. It comes and goes. And I haven't used it since last October anyway. I can't wait to get it out! BUT, I still advocate for getting them... (Please READ all about my G-Tube story here)

I gave Doc a flyer for the CF Walk in Princeton and if he can come, he said he will. He's gonna double check his calendar. But since his clinic is open to patients on Saturdays it might not work too well.

I'm done with work on June 15th. I'm off for the week before the walk to get stuff done, then I pack and move to Sycamore, IL. Hopefully, I'll be settled in the new place by end of August.

I'm excited my health is stable, I'm doing the new clinical trial, get some time off work to have this surgery, do the walk, move, etc! It's perfect timing!

Now I just need to get 15 more people to sign up for the walk and raise another $5,000! Our goal for the Princeton walk is $10,000 and 100 people. Fingers crossed! If you want to join as a walker or "Virtual Walker" Just sign up as "Join Our Team" and the walk is at Zearing Park in Princeton on June 28th check in at 9am. Make sure you sign up online to get the lunch that is provided! Join or Donate at this link: Princeton Walk Site!

  Here is our T-Shirt Design :-) Anyone can order a CF2 Team Shirt - for $8. Just contact me if you want one! I can mail them for a little extra!

 

Everything is working out soooo well! Keep ya posted on the new trial and my G-tube surgery!And I can't wait to post some pics of the new Apartment!