Multi-Drug Resistant Pseudomonas, Polymixin B., C. Diff and Many Other Complications
About 3 years after my transplant, I entered a vicious cycle. I would get an infection, need a bronchoscopy, go on IVs, notice a drop in my lung function at home, need another bronchoscopy and it would come back with A1 rejection. Then I would go on a course of steroids, and that would lower my immune system, leading back to infection. This went on for about 8 months. In February 2010, age 28, I went in for my third sinus surgery. It was after this surgery that I had yet another infection. However, this infection was different. Due to the treatment of my constant back-to-back infections, the pseudomonas I had been culturing had now become resistant to many drugs. There was only one drug that showed any sensitivity and it was an old-school antibiotic called, Polymyxin B. My doctor told me that it could be paired with another antibiotic and due to the synergistic effect, it would help combat the superbug. The problem was this medicine was nephrotoxic and required me to be hospitalized. When I received the first dose, I noticed it greatly affected my gait. I was unsteady on my feet and almost fell down a few times going to the bathroom. I also noticed that my lips were tingly, which was a bit alarming. I itched terribly. I was put on IV Benadryl before infusions and that only mildly helped to relieve the itching. They decided to add oral Hydroxyzine to further alleviate some of the itching. Again, it only mildly helped. The infusion would be stretched out to 6 hours in hopes that it would alleviate some of the symptoms I was having. The dose was constantly tweaked as well, as it was starting to effect my kidneys. This would be a rough stay.
The arm that I had my PICC line in would develop a blood clot. I was given Lovenox shots in place of my daily heparin shots to help dissolve the clot. Lovenox shots have a bit more of a sting to them. My PICC line would also need to come out and be replaced with a peripheral IV. I would also develop pancreatitis during this stay and need to abstain from food and drink for several days. As per usual, whenever I had pancreatitis all of my medicines that I usually took orally would now need to be done intravenously.
I met with the infectious disease doctor regularly as he tried to figure out the best course of action. One of the medicines he suggested was Rifampin. This medication caused me to be more nauseous than I had ever been in my entire life. The nausea began around 1pm. I was given two doses of Zofran spaced 8 hours apart to combat the nausea. I refused to take the next dose of Rifampin. I couldn’t knowingly take something that made me feel so ill. It wasn’t until 1am that I finally vomited and felt relief. I was nauseous for most of my stay, just not to the extent of that day. The smell of my meal trays made me even more sick to my stomach and I often refused to let anyone bring them into my room. I lost a bit of weight during this stay which made me very nervous.
Not only had I not eaten due to pancreatitis and nausea, but because the antibiotic was so harsh I developed C. diff. The antibiotics had killed off all of my good bacteria, and C. diff was left to proliferate. This led to a very dangerous, highly contagious, diarrhea. As soon as I'd take a sip of juice or eat anything, I’d need to run to the bathroom. I was usually tethered to an IV pole most of the day and night and I wasn’t able to move too quickly. I didn’t always make it to the bathroom in time. It was really disturbing my sleep to have to run to the bathroom constantly. One night, I had two accidents and couldn't handle it anymore. I had to wear an adult diaper. I felt really defeated and embarrassed. I only wore it one or two nights.
My lungs continued to feel quite sick for a long time. I was really worried during this stay as I did not recover very quickly. One doctor told me I would continue to culture this after I left and that they would not always treat it. That thought terrified me. That same doctor told me I would probably leave the hospital after two weeks. Another doctor would tell me it looked like I would be in for at least a month. I felt better knowing that someone else could see this was going to take some time to get over. I really needed a bronchoscopy but the doctors up until now didn’t recommend one since I had C. diff. When another doctor came into rotation, he said I did in fact need a bronchoscopy. I had a choice of doing it bedside or going to the bronchoscopy suite and I opted for the bronchoscopy suite. I had no accidents, most likely because I had to fast for the procedure. I felt a lot of relief after the bronchoscopy.
I also had acute rejection during this stay as well as airway inflammation. After 7 weeks of treatment in the hospital, I had made a lot of progress and I was released. I had to continue IV treatment at home for a few more weeks. I had to use an IV pole instead of the usual balls I was used to as the medicine needed to infuse over six hours. I was mostly housebound but still dealing with C. diff so I wasn’t looking to go too far anyway. I was just glad to be home. From now on, whenever I would go on antibiotics, I would need to take Vancomycin orally 4 times a day, for 2 weeks, to prevent C. diff from coming back. In the last year or two, the protocol would change to only needing vanco 1 time a day for two weeks after the last antibiotic dose. When I followed up with my doctor after I recovered, my lung function sat in the mid-80s. My doctor told me that would become my new baseline but I didn’t accept that. Over time, my lung function would climb slowly back up and plateau at 92% just a few percentages below my old baseline. However, my kidney would sustain some damage that go on to progress over the next year.
(My new friend for a few weeks)
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