My lungs haven't felt this good in 10 years. I've now been in the vertex drug trail for 3 weeks. My PFT's have gone from 53% to 64%. I'm a lucky man to be getting the goods, let's hope that I don't start growing hair on my palms.
It all started about 8 weeks ago. It was my 31st birthday and I was just finishing 2 weeks of IVs, my PFT's were stuck at 52% and my weight was down to 145lbs. It was time to get off the IVs and see if I could gain back some lung capacity and put on lbs. Within 2 weeks I had gotten my weight up to 150, and my lungs were feeling somewhat better. Around that same time I went in for my first screening visit for the Vertex combo drug trial. It was very uneventful, PFT's, EEG, blood work, and a exam. Next was a eye exam where everything was also good.
3 weeks ago
I arrive at the hospital at 9 A.M. on a Wendsday to get started. More PFT's, EEG, blood work and another exam. All checked out and I was given 3 weeks of the study drug or placebo. The rest of the day was spend killing time between getting EEG's and visiting the nurses on 4 East (my home away from home). At the end of the first day it had been a 8 hour day at the hospital.
The next 2 days I started bringing up more goo. I was thinking that I was getting sick or getting the drugs or my lungs were being affected by some environmental change. I had prepared myself for getting the placebo so I wouldn't be crushed if I didn't see any changes. I knew that after the 6 month study that I would be able to get into a 2 year continuation study where I would be getting the goods if I wasn't already.
But I kept seeing changes, more and more goo coming out of my lungs. Less hard coughing, stuff just started coming up easier. By Saturday night I was 60% sure that I was getting the goods, and by the end of Sunday I was sure of it.
2 Weeks ago
It was starting to get serious. I could take bigger deeper breathes, extra sinus stuff was coming out of my head, and my GI system was working much better. Soft easy poops. But I started feeling guilty. Why was I getting these magic pills when I have lost a few friends over the past 2 years to this shitty disease. But I got over it, and started thinking that I was doing my part to get the drugs approved for everybody.
By the middle of the week I started feeling very tired like I was getting a cold. I was resting lots, eating lots, trying to get some exercise every day but still was feeling kind of crummy. I didn't have a temperature, just felt worn out. The next Monday I went to clinic and found that my weight had gone up to 156, and that my PFT's were 64%! My doc (non study doc) was very excited for me, I hadn't had PFT's that high is almost 10 years. But I told him that I was still feeling kind of worn out like I was fighting something. We did some blood work and I found out the my white blood cell count was the highest it has ever been. But over the next few days I started feeling better.
I went to my 15 day study follow up and asked my Doc what he thought of my white blood cell count being up. His theory was that getting all of the surface goo out had uncovered lots of very old mucus that had been bacteria heavy and I was just having a reaction to that stuff. It seemed to work time line wise, and could not think of any better ideas on why I had been feeling not so hot.
The visit was the same PFT's(they cant tell you what your numbers are), EEG's, blood work and lots of waiting around. It ended up being a 6 or so hour day, and I got my next bunch of drugs.
I have now been on the drugs for the past 3 weeks. Things have settled down, I feel like I'm at my new normal. PFT's feel like they are in the low to mid 60's, I feel like I'm moving a lot more air in and out of my lungs, my mucus is still greenish but down in the amount I'm brining up, I'm guessing 1/3 of what it was. I feel very lucky and a little guilty for getting these drugs. It's just kind of weird. It seems to be the closest thing to a "cure" I have ever heard about. I still have a bit of scaring to my lungs, years of mucus that has built up in the bottom of my lungs that I'm still working on getting out. I think all of the big changes are over with and now have to work on my normal routine of taking care of myself. 7% HTS, Tobi 1x a day, EXERCISE, lots of good high quality home cooked food, and all of my regular meds. Time to go eat more and go to the gym.
The next 2 days I started bringing up more goo. I was thinking that I was getting sick or getting the drugs or my lungs were being affected by some environmental change. I had prepared myself for getting the placebo so I wouldn't be crushed if I didn't see any changes. I knew that after the 6 month study that I would be able to get into a 2 year continuation study where I would be getting the goods if I wasn't already.
But I kept seeing changes, more and more goo coming out of my lungs. Less hard coughing, stuff just started coming up easier. By Saturday night I was 60% sure that I was getting the goods, and by the end of Sunday I was sure of it.
2 Weeks ago
It was starting to get serious. I could take bigger deeper breathes, extra sinus stuff was coming out of my head, and my GI system was working much better. Soft easy poops. But I started feeling guilty. Why was I getting these magic pills when I have lost a few friends over the past 2 years to this shitty disease. But I got over it, and started thinking that I was doing my part to get the drugs approved for everybody.
By the middle of the week I started feeling very tired like I was getting a cold. I was resting lots, eating lots, trying to get some exercise every day but still was feeling kind of crummy. I didn't have a temperature, just felt worn out. The next Monday I went to clinic and found that my weight had gone up to 156, and that my PFT's were 64%! My doc (non study doc) was very excited for me, I hadn't had PFT's that high is almost 10 years. But I told him that I was still feeling kind of worn out like I was fighting something. We did some blood work and I found out the my white blood cell count was the highest it has ever been. But over the next few days I started feeling better.
I went to my 15 day study follow up and asked my Doc what he thought of my white blood cell count being up. His theory was that getting all of the surface goo out had uncovered lots of very old mucus that had been bacteria heavy and I was just having a reaction to that stuff. It seemed to work time line wise, and could not think of any better ideas on why I had been feeling not so hot.
The visit was the same PFT's(they cant tell you what your numbers are), EEG's, blood work and lots of waiting around. It ended up being a 6 or so hour day, and I got my next bunch of drugs.
I have now been on the drugs for the past 3 weeks. Things have settled down, I feel like I'm at my new normal. PFT's feel like they are in the low to mid 60's, I feel like I'm moving a lot more air in and out of my lungs, my mucus is still greenish but down in the amount I'm brining up, I'm guessing 1/3 of what it was. I feel very lucky and a little guilty for getting these drugs. It's just kind of weird. It seems to be the closest thing to a "cure" I have ever heard about. I still have a bit of scaring to my lungs, years of mucus that has built up in the bottom of my lungs that I'm still working on getting out. I think all of the big changes are over with and now have to work on my normal routine of taking care of myself. 7% HTS, Tobi 1x a day, EXERCISE, lots of good high quality home cooked food, and all of my regular meds. Time to go eat more and go to the gym.
6 comments:
Amazing results, thanks for posting! Hope you keep improving.
Colin - This is amazing - very, very glad to hear. Time to get into that climbing gym again!
Colin,
Reading this brings me so much joy for you and your family and all of us CFers. The magical blue lighting pills are just so amazing. Cherish every second of feeling great fibro. I will be following your blog to see what other changes you see from this.
When does the 2 year lenght of pills kick in? Also, any ideas from the doctors and nurses about when they think they will submit the combo drug?
Anyway, I have my own CF blog. It talks about my CF life and various other topics (IVF, my CF diagnosis, my family, my miracle daughter etc.) Anyone is welcome to read and follow along.
http://livingmydreamswithcf.blogspot.com/
John
Wow ... What a journey you're on! I'm delighted that you're feeling better, Colin. Such a gift! I'll keep praying that things continue in a positive way and those little pills work their magic. I'm cheering you on!
Laura
Colin, I am so happy and excited for you! I know you can beat this :)
Lisa
Great to hear! And brings back memories of when I did my first round of Kalydeco in 2008 as part of Ph. 2B. I got drug too and it was amazing! I hope you never have to go off it. It's gutting and very uncomfortable. I equated it to 30 years of cf coming in like a tide of mucus in 3 days.
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