Monday, November 24, 2014

Doc Appointment Today

Clincal Trial Appt Outcome:

As you may have read on my Facebook or My Twitter I was a little nervous that I'd end up on IVs today. I was also very nervous about driving in this CrAzy weather. Luckily, Andrew was able to drive and after the appointment we stopped for Subway real quick. I mean $2 subs who can say no?!  And a subway cookie- heck yeah!

The appointment today was my final appointment for the KB001-A Trial I was doing, if you want to read the basics about the trial (posted on CFF) then click HERE! I didn't mind have the 2 hour IV once a month (for roughly 6 months), I'm just excited to read the results and that I got to be 1 of the 180 particpants in the nation that got to be involved!

Right before that psuedomonas antibody trial I did a trial that helped proved the effectiveness of switching Cayston (inhaled aztreonam) & Tobi every other month. That trial was super easy in the sense that I have already been doing that for years. If you want to read the details on that study it is right HERE!Of course, insurance & other reasons need data to back up the reasons that Docs are rotating these drugs. That trial had an electronic diary I had to fill out every night between 6pm and midnight. I had to keep all the used/empty vials too. That was the hardest part. Remembering the journal (I only missed one night in the 6 months) and I'm so used to throwing the empty vials in the recycling that half the time we'd have to dig throgh the whole bag and pick them back out.

So the KB001-A Trial I finished today started 3 weeks after my Cayston/Tobi (Gillead Trial) ended. So pretty much I've been doing trials since November 2013 non-stop. AND the most exciting part is I'm enrolling in another study and start the screening process next Wednesday! This tiral is 6 months. So November 2013- May 2015 I will have done three trials back to back. This study is to looking to a new med/ way to thin the mucus & help it break up! Around 400 particpants will be entered into this study & my Doc's office is accepting 5- 10 people. So I'm super excited to be invovled. The basic info on the trial for Inhaled Mannitol is right HERE for you to read!

Picture: Us waiting for our Appt!

So I'm excited to get that study started! AND now for what you may be wondering about... my numbers!

Well, my first breathing test wasn't so great, but I have to do at least 3 for the trial. And each time it got better and my numbers got higher. Finally, I got around 50% 3 times in a row. So I'm only down 1% from last clinic. That nots too bad and my weight is 100.7 lbs. Its increasing super slowly, but at least it is increasing. I hope this holiday season helps that continue to increase. I explained to Doc about my wheezing, extra coughing, and tightness in my lungs. He listened to my lungs and with my test being almost the same as last time, he said we'd keep an eye on it. It probably is the weather irritating my lungs, I also have really bad asthma component to my CF and my rescue inhaler has been out for over 2 weeks. The pharmacy was having some issues, but Doc is getting that resolved. And since I go back next week for the Screening for the trial (and I go for Clinic every month), He'll be able to keep an eye on me.

I love that he allows me to try to increase the number on my own, instead of always jumping to IVs or oral pills like my old Doc. This might sound crazy, but it is smart for my case. I'm allergic to Bactrum, Keflex, Levoquin, and Ciprofloxacin. This means every single antibiotic that targets psuedomonas aeruginosa (which I have cultured every sputum test since I was a child ) I can't have. The Cipro allergy developed over the years and got bad in 2013-2014. So, Doc thinks my body is becoming resistant/fighting them and we don't want to exhaust all options. Plus, my body bounces back fast (luckily) So I use other methods first. Sometimes a low dose of prednisone or extra therapies. Ususally it works, but his rule of thumb is under 49% usually means 2 weeks on IVs for a tune up to jump the number back up. For example, in 2013, I  went from 48% to 64% in one week on IVs. So as much as I'd love to just have that 64% again. It would slowly decrease again, and constantly going on IVs isn't going to be the best option. So make those numbers last and stay up as long as possible to put off IVS until I have bad infection or big drop in numbers. He's very smart and thinks long term. I loved hearing him tell me about his 70 year old patients (he enver breaks hippa and says personal stuff) etc. Just that basically how old some are getting and how well I can continue to do if I work at it. I love how much he loves that we (his patients) are succeeding.

So my weight is slightly up, lungs 1% down, Asthma issues, but overall my lungs are still okay and Doc thinks I can get my numbers up without Antibiotics! So what I thought would be a bad clinic, its was overall pretty decent! Whew... you just never know.

Besides all those antibiotics I'm allergic to...Did you know I have life-threatening allergy? Besides my immediate family how many people know what it is? I've been looking into medical alert bracelets and for a good reason too. But, I'll save that story for another time!

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