Friday, July 30, 2010

Where do I even begin?

J and I decided to spend a chunk of his vacation in eastern Washington. So on Tuesday we packed up the car and headed for my parents house. I hadn't seen my mom since I was sick last summer (almost a year ago) and I hadn't seen my dad since December. I had never seen their house and neither of them had met J. So we stopped by their house for dinner. Dad grilled a salmon....mmmmm. We had a nice little visit and the parents got to meet the man.

Then we headed for Lake Chelan. I had never been there, and it had been a long time for J. I liked the town instantly! Its so cute! And the lake is GORGEOUS! I couldn't wait to get in it! But we had to find a place to camp...which took forever! Grrr. It seemed like every place on the map was full. Finally we found a spot about 2 miles out of Mansen, another little town on the lake. Too bad there were about 6 million mosquitoes! We got eaten alive by the time we got the tent up. And of course a few got in, but we got most of them killed by the time we went to sleep.

The next day we wanted to try and get a spot closer to town so we packed up our stuff again. We stopped and got breakfast, then went to a little park on the lake. It was still a little early to swim so we walked around a bit and met a one footed goose. We named him stumpy.

Then we went to the water park! For being a really small park it was pretty fun, and the price wasn't bad. We went on a few slides, had lunch, more slides, then headed back to the same camp ground we slept at the night before. This time we got a different spot though and I didn't see so many moquitos. Once we had camp set up we went back to town for dinner. It looked like a storm was coming and it was sprinkling by the time we were done with dinner.

From our campsite it looked like we were going to just be on the edge of the storm, but we were very wrong about that. It wasn't too long before were desperately trying to hold our tent together because the wind was so bad. It finally got to the point that we had to take it down. I got our stuff out as fast as I could while J held the thing together and kept it from flying off. We got the thing collapsed and threw the pieces in the trunk without caring how the went in there. J went to go rinse off in the shower after that and I hung out in the car. I think I was alseep by 11 o'clock or so.

And then I woke up in an ambulance. Well, not quite. I remember waking up just enough to notice that the sun was coming up, and rolling over. Then I was coming to in an ambulance with J looking like he just saw my head spin around in circles, and an IV in my arm. I don't remember asking but somewhere along the line someone told me I had a seizure. o.O Ok......that's a new one. I was really confused and had big gaps in my memory but the closer we got to the hospital the better it got, and by the time we got there I was pretty much back to normal.

They ran some blood work but nothing came up. They called my doctor in Seattle to notify him what had happened. Later that day the nurse called me and said she'd notify the nurse running PTC 124 and see about getting a nuerology appointment. The ER doctor said that 75% of people who have a seizure never had a second one, and that I may never know for sure what caused it. They gave me some ativan while I was there and told us to go home. The atavan knocked me out for pretty much the entire ride home. I pretty much slept all day, I kind of remember unpacking the car and waking up to eat, then going back to bad. If you have trouble sleeping that stuff will work, wow! I don't see how people who have to take it all the time function.

Anyway, it looks like I probably have to stop PTC 124 for good. Which sucks, but so do seizures! I am SO sore today, from my knees to my neck. I can barely move. I really hope this is a once in a life time experience. I'll keep you posted out there in internet land.


Lisa said...

I hope that is the only one you have. I know that it freaked Gess out when he had one. He also talked about being sore, etc. And as the witness--it was freakin' scary! Hope you have an uneventful weekend!

Anonymous said...

Was reading your blog about PTC124
Do you think the PTC124 caused the seizure?
Did you have any benefit from the PTC124? Do you know anyone else on it?
I like you have done many clinical trials for CF. I did a study in Baltimore in 1998 for PBA(phenly butilrate) at Johns hopkins(dr zeitlan), same drill same concept.
This drug did not go anywhere and I am looking to see if this might be similar. PBA made me real sick and had bad nausea and had to stop the drug. but I was taking some 40,00o mg per day friggin crazy.
Keep up the good fight
40 CF, CFRD, Celiac