Changing winds...part III

May 2005: I felt like I had accomplished much in such a short period of time, it had been just under 6 months and I was bathing independently, doing nearly all of my daily care and improving my strength as much as my muscles and mind rebelled. It was hard, arduous work...there were times when I was so overwhelmed that I was tempted to turn into a blob, letting all of the machines do the work. But that wasn't me..I came to that conclusion as I looked at myself inside and out and realized that I had fought too hard to get where I am...to give up when I have come this far would have been ridiculous, such a waste. It would be as if I were running a marathon only to quit in the last 100 feet. As much as I had hit a wall, I had to dust myself off and keep going despite what was happening in my life.

As I was getting used to my new lifestyle, new problems did indeed crop up. I began to culture Pseudomonas aeruginosa in my lungs a few short months after being vented. My theory is that I was culturing this earlier but went undetected because I wasn't cultured for bacteria whenever I got ill in the past. My primary doctor as well as my pulmonologist prescribed TOBI (tobramycin) to be nebulized in an attempt to rid my lungs of this new invader. It appeared to work as my cultures were clean after a full 28 days, but it didn't last long. My next culture showed something even more puzzling to my doctors: B. cepacia. I scratched my head as I had a faint recollection of what cepacia was. I knew that it belonged in the pseudomonas family but that was just about it. So, I did what every person does who is on a quest to find answers, I googled it. What I read frightened me...I read page after page describing its innate resistance to many antibiotics, what its origins were, and how hearty this particular bacterium was. What really got my attention was that cepacia and CF were associated with each other. I did a mental shrug and tried to wrap my mind around all of this. My doctor apparently was doing the same thing, on my next visit she brought up testing for CF as she went through my entire chart, noticing how many times I had been hospitalized for asthma, pneumonia and other lung related problems. The testing was to be performed soon, I was understandably anxious about the potential outcome.

I was placed on IV antibiotics as a result of B. cepacia as it was resistant to just about every antibiotic that could be taken by mouth. This bacteria also won me a bed at the hospital so that I could be monitored for any adverse effects that the harsh medication could produce. This was also my first experience with a PICC line. IV's don't usually intimidate me, but somehow looking at that long, snake of a catheter that was to be threaded through my veins to ultimately rest outside my right atrium, made me queasy. The radiologist seemed aware of what I was feeling and did his best to be gentle. I did not watch as they numbed the desired insertion area with lidocaine, all I was aware of was the "little pinch" nurses and doctors warn us of prior to being jabbed. Thankfully, the immediate sharpness was replaced with a cool numbness with pressure sensations as the doctor placed the introducer into my vein. At that time, I felt that it was safe to watch the remainder of the procedure, I slowly turned my head to observe the action. If it wasn't my own arm, I would have thought that it was incredibly neat, but it felt wierd to me. The doctor with great proficiency gently guided my PICC line into my vessel, all I felt was a strange tickle and a few extra jumps from my heart. The PICC was in too far which was quickly remedied by pulling it out an inch or so. A suture here and there, a little cleaning up, a clear dressing and it was done. I examined the handiwork and nodded my approval. The lidocaine was beginning to wear off and I started to feel a slight throb in my upper arm. I moved my arm like it was brittle ceramic, careful not to jar it too much.

I was returned to my room and was immediately hooked up to antibiotic number one: Fortaz. The nurse who administered it accidentally dribbled some of it on my gown. Immediately the smell of cat urine permeated the room. At first I was unaware of the cause until I took a good whiff of my gown. I wanted to peel it off of me immediately but there was no other replacement in the vicinity. I clicked the call light on praying that a nurse would peek in. They were usually prompt with responding to my lights, but there was an emergency that they were tending to, all hands on deck were in my neighbor's room trying with great effort to normalize his vital signs. Totally understandable. I patiently waited until the crisis was over and summoned a nurse again. She returned with a brand new gown which I eagerly changed into. I felt much cleaner and made a mental note to make sure that I had a towel or some other barrier under my arm as the IV was being hooked up to avoid this scenario again. Live and learn.

I tolerated the Fortaz well, the next IV was not so kind to me. Zosyn or piperacillin/tazobactam to be given every 6 hours. I will always remember Zosyn as piperacillin because of the pepper like sensation to my insides as it was being administered. I felt as if my organs were being immersed in peppers, I felt burned from my esophagus to my kidneys. It was a horrible feeling, what was worse was knowing that I had to endure this harsh treatment for at least 2 weeks. I was not sure how I would get through this without losing a tremendous amount of weight as I was unable to eat as well. My stomach acid felt like it was eroding my delicate esophageal mucosa and then some. To help counter this, doctors prescribed double the amount of Nexium in attempts to completely block all acid production. That along with Sucralfate seemed to make things much more bearable.

Two weeks later, I was feeling much better and my cepacian colonies were much lower in numbers. My PICC was pulled and I was sent home back to my regular routine. Or so I thought.
More to come later in part IV....stay tuned! Hugs, Jenn :)