I came to the conclusion that, even though I may have hours on end to update my blog, I never really want to when I'm having a downfall with my health. Mentally, when I'm having a dark moment, I feel as if I could write for hours. Physically, I just don't want to. I can't. I've realized that it's hard for me to admit when I'm sick. A lot of times I will try to hold it out as long as possible before really telling anyone that I'm sick, and usually, I don't have to tell anyone because at that point there's no hiding it. I used to be able to hide my illness a lot more than now. When I'm sick, it's evident. I can't breathe. It's not just walking up a flight of stairs and running out of breath. It's walking 10 steps and having to stop and gasp for air. Not slowly catching my breath...but gasping for it.
Anyway, here's your update.
On January 31st I had an appointment with the pulmonary doctor. My lung functions were 27%, my weight was 98 pounds, O2 was 92% and my heart rate was running around 130-140. I was obviously not feeling too well and was put on three oral antibiotics, Bactrum, Cipro, and Minocycline, which I have never been on. I've always tolerated Bactrum and Cipro perfectly fine and almost always had positive results. My appointment was on Thursday. By Sunday it had felt like my lung functions dropped 10%, I was running on 2 hours of sleep, my O2 was running around 87%, I hadn't ate in three days and I was running fevers of 104. By Tuesday I was hospitalized and started on IV Tobra and Ceftaz, which I like to call my magic drugs. After about a week and a half, I had felt better than I have in over two months. I was no longer needing oxygen during the day, my heart rate was staying steady at about 70-85, I was not running any fevers and I had put on 4 pounds. I was discharged after 12 days on February 16th.
On February 22nd, I had another appointment with Dr. Simon. My lung functions were 38%, my weight was 104 pounds, 02 was 93% and my heart rate was around 90-100. I was no longer running short of breath after 10 steps, my appetite was phenomenal, and for the first time in awhile, I just felt exceptionally relieved. Ahhhhh...I'm finally getting somewhere.
After a three week course of IVs, I had deaccessed my port.
But alas, roughly a week later, I had begun another bout of infection. I had gotten my PFT's checked two days ago to send to the disabilities office. My weight is down to 101, my high PFT was 33%, my heart rate was about 120 and my O2 was 92%. My appetite is gone, my fevers are back, my chest is sore, my body is exhausted, and I can no longer walk the flight of stairs to my room without losing my breath.
I am scheduled to get sinus surgery on April 1st. It was planned that I will be starting home IV's the week before just as precautions, but I will more than likely not be doing home IV's. I will instead be doing them in hospital.
I'm a bit broken at the moment, but that doesn't mean that I can't be repaired.
Just give me two more weeks of freedom.
On Valentine's day I was sent chocolate covered strawberries by Edible Arrangements from my mom. The card had read, "Alexandria darling, you will always be my valentine. Keep dreaming big, you never know what tomorrow will bring. Love, momma."
I was also sent flowers from the lovely Joshua Pauken.
A week after being admitted it was time to get my needle changed for my port. The access went great, but there was no blood return so I was sent down for a port study. The doctor couldn't see anything wrong, but the flush was hard and there was still no blood return. I would have been put under and my port would have been replaced, but because I didn't listen and ate when I wasn't supposed to ( oops :p) they were not going to do the surgery that day. I was scheduled to go in the next day, but the doctor quickly came out and decided to try running TPA (helps breakdown of blood clots) through it. An hour later, and my port was working better than it had in months! It was the first time in 2 1/2 years that I had needed an IV. Luckily, I have one really good vein...the rest are useless.