When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%. Continue reading
Category Archives: Health update
Clinic update
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. Continue reading
Clinic Update
It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading
CF please vanish
There are some days that I wish CF didn’t exist. Today would be one of those days. Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist. Continue reading
On a new journey…
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. Continue reading
Spring cleaning of sorts…
I went to see my CF doctor today on national doctor day…haha. I was there for a sick visit not to wish him a happy day. I have been coughing more, especially at night which sucks. I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend. Continue reading
Coughing hazards
Interesting title? Let me explain. I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking. Along comes a coughing fit. A doosey one where I see stars and shake. Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face. Yes, you read that right. Pictures below… Continue reading
Quick clinic update
I had CF clinic today to follow up from when I was on IVs. My lung functions were up a little to 30% / .87L FEV1. We talked about this range being my new normal (baseline) for lung functions. Thanks virus, thanks a lot. I shared with him what was done at Barnes for my transplant appointment, some of which he already knew. I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri. They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading
(Pre) Transplant Appointments
I arrived to St. Louis Sunday evening. My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN. I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal. Luckily I have people to rotate, haha. Continue reading
Impromptu clinic day
Well my 2018 has been shitty so far, literal and figuratively speaking. Not that you cared to know that. I got that virus around Christmas weekend and it seems to have found a happy home in my body. I have been super short of breath just walking and even sitting therefore I have been using my oxygen pretty much 24/7, unless it doesn’t reach where I’m going in the house. Continue reading
