Wednesday, April 29, 2009

Last day of the "drug"

Well this morning I had my very last dose of Cipro/placebo. It's very bittersweet. I am so glad to be done with the nasty powder but I'm also not looking forward to being without a strong abx for the next month or so. Especially since my FEV1 went back down to my baseline...44%. Not a horrific number but certainly not as good as the 50% I was at 2 weeks ago.

That is my normal course though when I am on IVs and stop. A couple of weeks after stopping I slide right back to my baseline. I might get to 48-50% right after I stop then boom...back down.

So while it's kind of disappointing it isn't a total surprise to me. I'm still better off than the 38% I was at when I started.

I basically chalked this whole thing up to a round of IVs since most likely if I hadn't received the drug (which is not official BTW, but very likely considering my success with it) I would have ended up on IVs at some point soon. I could feel myself getting sick. So now I am not sick and feel pretty normal. My normal sick if you will LOL.

I still have 2 more visits left to monitor me and how I do after stopping.

Everything else was good...weight still 119 and blood pressure still normal.

AND Saturday marks ONE YEAR since I was in the hospital. Not bad considering last year it was 3 times in 6 months!!!! So not only will I be celebrating my nephew's birthday I will celebrate being "healthy" for a year!!!! =D


Saturday, April 25, 2009

Flower Photo Contest

Our local TV station is having a spring flower contest so I entered some of the flowers I took pictures of last year. AND ONE MADE IT ON THE SLIDESHOW!!!!!!!!!!!!!!!!!!!!!!!

Dam hyperlink thing won't work so just copy and paste. Look for Amy Silcox of Langhorne PA. I was the 3rd one (ironically that's my lucky number). It's a tiger lily with raindrops on it. I submitted like 10+ of them haha!!!! So exciting!!!

Wednesday, April 22, 2009


I did it...I joined etsy. My name is CrochetCyster :) Very fitting yes!!!!!!

All I have to do now is make a bunch of stuff and sell them online. Crochet will be my hobby and new job :)

Well not new but at least I can save the money I make so I can have dough once SSDI is a reality for me.

Thursday, April 16, 2009

My jeep!

I decided to take pics of my jeep's ass and post them LOL

I have a lot of bumper stickers which crack me up so here are pics of them :)

the one on the bottom left that is all white says "if you're gonna ride my ass at least pull my hair" LMFAO!!! I got it like 4 years ago and it is all worn out so I think I need a new one.

no words needed!

Daaaam right! (to both)

hehe LOVE it! Just got it in the mail today from


Wednesday, April 15, 2009

Study visit #5

Well I went up again today. Only a few points to 1.55L and 50%. Still awesome!!!!!

I officially have half my lungs working hahahahaha at least for now :)

I was telling the study coordinator I would liken the study med to getting IVs. I don't feel tip top but my numbers are all up and I am coughing less. Now if I could just stop getting SOB with walking/moving/ steps my friends.

That is the best way I can describe how I feel it is working. After a round of IVs we (usually) feel a lot better and can see an improvement. I am just hoping, that unlike IVs, I stay where I am after the treatment stops. That really is the only downer I see to this. Once the study is over in 2 weeks, no more miracle drug for me.

But at least I have a foot in the door for improvement ;)

And my blood pressure was FINALLY normal for me at 100/60, even if still moderately low.

Sunday, April 12, 2009

Finished a project!

I completed my baby booty and baby hat yesterday! I must say it looks mighty fine LOL

I just hope it fits her!!!!!! If not I will do it over. The hat took me all of an hour. It was so simple I think it might be my new favorite thing to make!!! Hats for everyone for Christmas!!!!!!! :)

The yellow ones I made for her too using a very soft and fluffy yarn. I would love to make a blanket out of it but it is $5 for 2 oz of yarn since it is made from bamboo. But thats ok...I can fins something very similar :)

Wednesday, April 8, 2009


Well I am totally and completely floored! I don’t know how much info I can give out but here goes:

Last week my FEV1 was 38% and 1.21 L
This week my FEV1 is 47% and 1.46 L

HOLY MOLEY! That is one heck of an increase. I really believe that I am on the study drug and not the placebo. How else would a jump of that magnitude in one week be explained? I have not changed a darn thing in my routine either. And quite frankly I was thinking I didn’t have the drug since I noticed no change at all. Guess not! LOL

I’m so excited about this I hope that the drug goes out to the market soon! I would recommend this to anyone and yes the nasty tasting drug is so worth it if it can raise me up 10%!

Wednesday, April 1, 2009

Visit #3

I'm not going to give too much info but I did want to update.

I got the med/placebo today.
Did PFTs (went down...38% down from 42%)
Blood work
Another pregnancy test....still negative LOL
Sputum culture
Weight is down another half pound
Blood pressure is still kinda low for me
HR was actually below 100 for the first time for them in a loooooong time! I was excited haha

The usual fun stuff.

I will go back next Wednesday to make sure I am still doing ti all right and to test everything again. They do before and after dosing.

All in all a good day. :)