Wednesday, June 30, 2010

Multiple updates.

Nausea: Its still there. Its not getting better. Its been 6 weeks. I called the nurse running the PTC124 study and told her that I'm having a very hard time taking the med because I feel so sick most of the time. She talked to the doctor and they squeezed me in for an appointment today to see her. The doctor seems to think that its related to the study drug. The timing fits and the fact that its not getting any better no matter what I try would point to the drug as well. So, she told me to stop taking it for now and see if I get better. Apparently this company is very lenient (sp??) on this kind of thing and I can stop for a month without being kicked out of the study. If stopping the drug doesn't help then I have to go get tested to see if I have slow gastric emptying. I also got a perscription for zofran, YAY.

Cayston: The doctor doesn't want me starting anything new until the nausea is resolved. She isn't worried about the minor drop I had in my PFTs during my trial.

Dexa scan: There have been no changes in my bone density which is good. Its not getting better but at least its not getting worse! I have minor osteopenia of the spine, but not of the hip.

Monday, June 14, 2010

CF clinic today.

So I had a clinic visit today and it went pretty well. My PFTs are down a bit but I had to work like hell to get up a stubborn plug over the weekend so I've got some pretty bad inflamation going on right now. I'll be doing a prednisone burst for that. I still feel very clear (other than that plug) from the IVs though. So maybe that's a sign that the PTC124 is working. That would be really nice!

I've been having some nausea which, obviously, is really annoying. My symptoms don't seem to fit with slow gastric emptying, when I puke its within an hour of eating usually, not puking up dinner for or five hours later. It doesn't seem to corolate with any particular foods or times of day. They think I may be having some reflux but without a lot of they typical heart burn that goes with it. So I'm going to be trying a perscription reflux med and see how I do.

I'm going to try cayston too, to alternate with colistin. I don't know if I'll be able to get more than a month's worth though because I won't have insurance next month and Medicaid hasn't kicked in. So I might get a month and then have to miss the next cayston month. We'll see how it goes.

And my enzymes aren't being made anymore so I have to try and find something that works. I'll be going to zenpep 5's. We'll see. I hope I don't end up with horrible stomach pains.

Sunday, June 13, 2010

She got lungs!!

Yesterday I woke up to the best news! My good friend and cyster Piper got her double lung transplant!!!!! Whenever I get to thinking about it I start to tear up. She's been waiting such a long time, and she's had to many calls that didn't work out. Once she was even brought to the OR and sedated when they found out that it was a no go. I can't even imagine how hard this has been for her and her family. But they held on through everything. And it paid off. I can't even describe how happy I am for her.

Considering what happened to Eva, passing away while waiting for lungs, this is absolutely the best news I could get. She should be off the vent some time today and I have no doubt that she will imediately ask to go for a walk. This cyster knows how important it is to move, she worked out SO much while she was waiting. She's really inspired so many CFers.

Piper, I know you'll continue to do awesome because you worked so hard to be ready. I love you cyster and I am so happy that you get to start a new life with your new lungs.

And let's not forget the donor and their family. This family turned their sorrow into celebrations for other families. They appreciated life enough to pass it along to others and that's an amazing thing. The donor family is in my thoughts, thank you so much for giving my friend a second chance, she needed and deserves it so much.

Wednesday, June 9, 2010


After my fibromyalgia class (I think of it as a class, I'm learning a new way of life) today I had a huge epiphany. I used to be extremely athletic. I loved volleyball, I lived and breathed it. It was my passion. I was an athlete through and through. So whenever a doctor would get on me about excersising I would think "ok, I know how to excersise!" And I would go out and do volleyball drills, lift weights, and run. And then I would be in so much pain that I could barely move for the next week. I'd get depressed and discouraged. Eventually I just thought "I guess I can't excersise anymore."

Today I realized that I have to stop thinking about it as training. I'm recovering. Recovering is harder than training in every way. Its definately harder physically, as well as mentally and emotionally. I didn't think of my physical therapy after my shoulder surgery as training. I was trying to get better. They started me off small, then built on that once I gained more mobility and strength. This is no different. I can't jump in the deep end and expect to swim.

For the first time in years I have hope of getting better and getting back into shape. It might take a long time, and I'll probably have setbacks. But that's ok. I'm learning the skills I'll need to bounce back from those setbacks. I'm learning how to get better.

Wednesday, June 2, 2010

A quick post.

So I finished IVs last niht, YAY. Its always nice to be done with that. I'm feeling really good, haven't had anything to cough up in close to a week. I'm eager to see if I stay cleaned out longer since I'm on the PTC 124 study. It would be nice to get more than 6 to 9 months out of this round.

I really don't have anything else to report. Things seem to be holding steady and now that I'm done with IVs I'm lookin g forward to summer even more!