Clinical Trial, Clinic Today:
Clinical Trial 9am:
Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it (Read about the first trial evaluation mess here!) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involved again!
Clinic @ noon:
I had clinic right after the clinical trial evaluation. My lung function is at 59% which is pretty much my Baseline. I'm okay with that for now, but it better not drop anymore. No changes to any meds. I have to go back in 6 weeks for my next clinic. I go to clinic every 1.5 months now on average. I used to go once every 3 months / only 4xs a year. Now, I'm going around 9 times...But, I have lots of other issues. I feel like a genetic mess:
Clinical Trial 9am:
Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it (Read about the first trial evaluation mess here!) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involved again!
Clinic @ noon:
I had clinic right after the clinical trial evaluation. My lung function is at 59% which is pretty much my Baseline. I'm okay with that for now, but it better not drop anymore. No changes to any meds. I have to go back in 6 weeks for my next clinic. I go to clinic every 1.5 months now on average. I used to go once every 3 months / only 4xs a year. Now, I'm going around 9 times...But, I have lots of other issues. I feel like a genetic mess:
-Cystic Fibrosis
-CF related Arthritis
-Low bone density
-Seizures
-Mild Spastic Hemiplegia Cerebral Palsy (affecting my right side)
-Liver Issues
-Vitamin Deficiency (due to CF)
-Borderline CF related Diabetes
-Bad GI issues (low weight too)- stomach tube placed
So GI issues/Crohns:
I've always had lots of bowel obstructions, problems with bloating/gas, diarrhea. But it never lasted. The problems come and go. We always just figured it was CF. Another CF problem, since lot of CFers have GastroIntestinal Issues! But, apparently...its not as normal as I thought. I had a CT scan done and my intestines and colon are inflammed. The GI doc said she wants to make sure it's not Crohns Disease. It could be a simple infection (fingers crossed for that). But, apparently new studies have showed some common mutation link between CF and Crohns (DF508). People with CF are 17 x more likely to be diagnosed with Crohns. Which I find interesting, regardless how my colonscopy results turn out! Scheduling the oh, so fun colonoscopy when the doc's office calls me to schedule me. Hopefully, before Thansgiving! I don't want to have to watch what I eat on Thanksgiving!
Looking forward figuring out my GI problems, hoping after my Colonoscopy we can figure out my GI problems and not need as many obstruction surgeries in the future! I don't want to feel like an operation board game anymore!
Operation: I loved this game when I was little, but my whole family played tons of board games! Clue, Go For Broke, Easy Money, Racko, Skipbo, PayDay, Bonkers, Chicken Foot, etc! LOVE BOARD GAMES!
Plus, following up with the Rheumetologist, on the Clinical Trial (which forces me to be 100% compliant). I'm huge RESEARCH LOVER and enjoyed doing Research in School, so I will be compliant, it's for science! I'm a science fanatic! I'm signing up for a dance class (after I figure out the Grant application, etc for CF Exercise)...Hopefully, getting my tuition reibursed and start really working on my Master's Degree again! Hopefully, things will just get better.
Operation: I loved this game when I was little, but my whole family played tons of board games! Clue, Go For Broke, Easy Money, Racko, Skipbo, PayDay, Bonkers, Chicken Foot, etc! LOVE BOARD GAMES!
Plus, following up with the Rheumetologist, on the Clinical Trial (which forces me to be 100% compliant). I'm huge RESEARCH LOVER and enjoyed doing Research in School, so I will be compliant, it's for science! I'm a science fanatic! I'm signing up for a dance class (after I figure out the Grant application, etc for CF Exercise)...Hopefully, getting my tuition reibursed and start really working on my Master's Degree again! Hopefully, things will just get better.
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Laura: No new updates, still fighting, but she isn't listed yet. (To read about Laura's Fight click here for the blog post! She is supposed to receive her care package today in the mail, hope it cheers her up!
And thank you for everyone who reads my blogs! Feel free to ask ?s if you have them! I'm an open book! Any other Cfers that have/been tested for Crohns too/ had inflammed colon/intestines?
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