CF Happens

My appointment for the antibiotic allergy testing was 4 hours long! 😳

I did get answers about what antibiotics are ok for me to use. I tolerated Zyvox, Zosyn, Cefepime, Bactrim, Cipro and Azithromycin. I already take Azithromycin on Monday, Wednesday and Friday for its anti inflammatory properties, NOT for an infection fighter. My “go to” IV antibiotics currently are usually Zosyn and Cefepime. Those two antibiotics show as “sensitive” when they use them to treat what I grow in my sputum in the lab, meaning they should work on the pseudomonas that’s in my lungs.

With that said…I will NEVER kill all the pseudomonas that is growing in my lungs because my body is constantly producing the thick sticky mucus that’s in my lungs as well as other organs. I can’t get rid of all the mucus in my lungs, therefore they will always have pseudomonas in them. When I get new lungs all of the pseudomonas that’s IN my lungs go with the bad lungs. However, culturing pseudomonas post transplant isn’t uncommon because it lingers in the body, for instance in the sinuses and airways, etc..

When I get “CF sick” (a lung exacerbation) meaning, I have a change in my symptoms like increased cough, coughing up more junk, change in my sputum color, fevers, increased fatigue, etc that’s when we use antibiotics.

There were two antibiotics, Amoxicillin and Meropenem, that I am definitely allergic to and would only be used as an absolute to last resort option. As well as another one, Vancomycin, that I’ve previously had a bad reaction/adverse reaction to.

1. Amoxicillin: The doctor’s note says, “if clinically indicated in the future, I recommend an alternative agent. However, if it’s absolutely necessary, I recommend consultation with allergy team and consideration of multi-step dose challenge inpatient versus desensitization.” She’s basically saying, don’t use Amoxicillin unless it’s my only option. Haha

2. Meropenem: The doctor’s note says, “I recommend an inpatient two step desensitization (10% dose, monitor for 15 minutes, then 30% dose, monitor for 15 minutes, then remaining 60% dose and monitor for 60 minutes) to Meropenem if clinically indicated in the future.” This is a desensitization approach in hopes that my body will accept it and not react to it.

3. Vancomycin: The doctor’s note says, “patient experienced significant itching and erythema with Vancomycin, previously called “red man syndrome.” Not an allergy, rather it’s representative of MRGPRX2 activation of mast cells. I recommend slowed infusion rates 1000mg/100 minutes or less (may need as low as 500mg/100 minutes) and pretreatment with Zyrtec 10-20mg orally or Benadryl 25-50mg orally 30 minutes before infusion.”

All of those fancy words and letters mean that my body has a histamine response to Vancomycin. This means my body makes it known that it’s not happy when I get Vancomycin with my upper body turning bright red and constant crazy itching. She’s saying if I need Vancomycin in the future, I need to be pre-medicated 30 minutes prior with Zyrtec or Benadryl to stop the histamine response as well as slowing the infusion way down with the hopes that my body wouldn’t react.

We also addressed the previous reaction I had to a Kenalog/Zylocaine injection into my foot way back around 2004, maybe. It was a rather unpleasant reaction, so of course I asked about it. I started to look like Will Smith in the movie “Hitch” 30 minutes after the injection with the hives and swelling of my lips and face. It did start to make its way down into my airway as I was on the way to the hospital. She said since I’ve tolerated other “caines” (numbing meds like lidocaine) and hydrocortisone, prednisone and solumedrol, that it was the Kenalog that caused that reaction and NOT the Zylocaine.

Of course I said, “who is allergic to a steroid, but of course it’s me.” She said that CFer’s are special when it comes to the way our bodies react to different things. Why thank you…I always knew I was special. Sadly, it’s in the medical field but hey, special nonetheless. Haha

I know that was a lot of big medical terms but I wanted to make sure I explained things well. Also, it helps me to put all of the information here so that I can refer back to it. Haha

Until next time…