Tuesday, November 12, 2013

My Clinical Trial Mess

A Clinical Trial Mess:

Monday, I had an appointment for a clinical trial evaluation. Let me start out by saying, I always get  amazing care at my doctors...HOWEVER, this evaluation was done by a third party brought in to handle the research. The research nurse was a flibberty jibbet. She was nice, but kept just re-organizing her supplies, like she didn't know what to do. She seemed nervous. She mentioned she usually had another nurse with her.

She took my weight, height, urine test, pre-med spirometry test (PFT-pulmonary function test)

Next she decided to draw the blood, while waiting for the pft results to print. She got out the supplies and the sterile paper that she places it all on. She dropped te paper on the floor and proceeded to place the packaged needles and supplies on it.... So in my head I tell myself "Okay...(inhale control exhale my germfreak...) it's okay, it won't kill me..it only touches the bottom of my arm, not the actual place that she is drawing blood from"

But still... Then she proceeded to prep the area for the needle with an adhesive remover wipe... um, not alcohol, but a greasy adhesive remover wipe. My arm had the greasy remover on it and she still hadn't steriltized the area yet... then she picked up the needle to access me.  I told her she didn't use alcohol and used remover by accident. She had no clue.. I mean I had grease on my arm.. it didn't look or smell like alcohol either. (read the package...see pics on right)
So after she alcoholed my arm and put the needle in. She proceeded to lose my vein while switching out the first vial with the second vial. When she pushed the 2nd vial in, it wasn't filling with blood. She kept trying to re-find the vein..but was angling the needle like upwards. I thought it was going to poke out of  my skin (like a safety pin). I mentioned that she was above my vein, I could feel it on top of it. I told her if she just angled it downwards it would hit the vein again. She kept digging, until..

She proceeded to pull it out completely, get rid of the first vial, and asked my doctor to re-do it.

However, When Doc came in he said he wasn't "Happy about my lung function results" and the trials requires it to be very close to my last lung function test. However, it was down 6%. He asked when my last breathing treatment was.. And I replied that because "I was told by the research nurse not to do them the day of the appointment that I hadn't done one since like 6pm the day before."  And we all know for someone who does a total 10 breathing treatments a day to go 18 hours without one is hard. My appointment started at 9am, they did the lung function test around 10, and then by the time that I was able to begin the trial with my results it was already 12:30pm..and my last treatment 6pm day before.

Doc said the lady was wrong, that I COULD do albuteral, and pulmozyme the morning off with my vest (just 3 hours prior) and should do my night meds the night before closer to bed (including albuteral, hypertonic and cayston). She was wrong, so all of that was for nothing.

BUT good news! Doc really wants me to do this trial and wants to me to work on getting my lungs back up to 64% by next thursday (which is when I go back to re-try). Although we think it will be fine when I go in next thursday!

Also, next wednesday I see a GI specialist :-) YAY! Hope to figure out my intestine/stomach issues!

Some more good news, a very close family member of mine is doing great after coming out a surgery today, I took the train home today to see him! I love him so much, he is ALWAYS there for me, driving me appointments, taking me shopping, and always visiting me in the hospital. He is an amazing uncle and sometimes feel like a 3rd parental figure and a best friend too! Love him! Hope it is  all good news from here on out!

I'll keep everyone updated on the clinical trial appointment next week!


  1. Yikes - sounds like a crazy day!! Hopefully, next time will go a lot smoother and you will get selected for the trial :)

  2. As long as I bring my lungs function back up to 64% or close to it, I will get to be on the trial!

  3. Amanda Cook FespermanNovember 19, 2013 at 5:16 PM

    Very disappointing about the nurse. I'd have freaked out!

    1. haha, I've had worse! :-) But most nurses are pretty amazing!

  4. Well, those things happen, especially when quality controls aren't tight and inexperience would slip right in and stuff. People who administer trials should make sure that they are well-prepared to do so. That means accounting for every single detail of service.

    Krista @ Altus Research

    1. Using the wrong prep pad didn't bother me as much, as her giving me the wrong directions (that could of kept me off the trial), and she was unprofessional (when we found out I had to re-evaluate for it and come back, she proceeded to come complain about having to come an extra day the next week). I still am glad I got on the trial the following week, It isn;t a new combo of meds for me, but if it helps CFers in the long run and insurance coverage- I'm all for it! Thanks Krista for reading and I agree!