Recap: Went into the hospital with my fev1 @ 54%. Five days later they jumped up to 72%. I went home on IV anx scheduled for one more week. Went into clinic and thought it would be the end of the two week course. To my dismay, my PFT's did not reach the 80% I was working so hard for but dropped to a devastating 61%!
I was very discouraged by this but knew that with the pulmozyme added back to my regiment I would hopefully be able to get them back up to 72% again.
Last Wednesday I went back in for clinic and Praise the Lord! My PFT's jumped back up and even 1% more to 73%! It is not 80% as I hoped it would be but it lets me know if there is 73% left, there can always be a little more than that!!
Through all this I had a BAD dressing allergy, blisters, bleeding, scabbing, and every time they would change the dressing on the site, my sores would have to get drenched with alcohol!! It hurt so bad!! From the skin irritation everything around the site, the site, the stitches were all inflamed and were so tender and sore, by the end of the three weeks(which was two days ago) It was hurting all the time and was keeping me from getting a good-nights sleep!
After a constant battle with trying to get this thing taken out today with the clinic, ( I can't even began to explain or want to explain how much the clinic failed me in this situation, I am just so tired of their lack of communication!!) trying to explain this needed to be taken out right away and the site is acting up and very painful. A nice doctor scheduled me in on last notice. We had to drop everything and go but I wasn't complaining I wanted this thing gone!
The NP (nurse practitioner) was going to be able to remove it without the doctor in clinic! Well first it was the painful untapping and the tugging, and tugging and....it wasn't coming out!! She tried not to act nervous but she was. She went to go get the doctor, he came in and said,
"Your site is very irritated."
"Yes I know," thank you!
He tugged on it a little and then stopped, there was a towel over where he was so I couldn't see what was going on. He said, "so there is going to be some pulling."
I completely fell for his ploy, right when I was going to respond he ripped it right out of my chest hard! I screamed and tears filled my eyes. He immediately, started apologizing profusely and assured me it needed to come out right then because it was so irritated. After I got over the initial shock that this man had just ripped it out with no fore-warning and the pain subsided, I realized how much better it was that it was quick but let me tell you it HURT!!!!!!!
My life is stressful but I amazed at how much we can handle, CFers should win some award for how well they handle such a crazy life!! Thank God for keeping me some what sane!