Since my first Solo Clinic day went so well and I’ve been having a good few weeks, I decided to go to my infectious disease appointment on my own today as well. After waking up early and getting a quick shower I headed to the city. Upon arrival I waited for the valet to bring me a tank of oxygen from the front desk, and yet again… no wheelie cart… so I wheeled my tank and purse around in a huge oversized wheelchair. My transplant team wanted me to see the infections disease doctor to plan out which drugs will be used for pre- and post-transplant in the hospital when my time comes. There is no standard treatment for cystic fibrosis because although we are all are at increased risk for infections, we can grow many different types of bacteria and fungi in the lungs so treatment must be tailored for each individual. And after so many years of treating these infections with the same meds, drugs can also become resistant to the infection which leaves less and less treatment options later down the line. Certain individuals also have adverse reactions to medications as well, leaving very few options for treatment. Many of my “bugs” have become resistant to most oral medications, usually leaving one or two options at best. The good news is, I have only developed one real allergy /intolerance to medication over the years and that is to Cipro/levaquine.
Before meeting my Doctor today I was sent to the Lab on the transplant floor to get a trough level drawn on one of my medications (Voriconizole or Vfend). A trough is the lowest level of the drug in the person’s blood (drawn right before the next dose is due) and is used to monitor the drugs dosage and effectiveness. Only two sticks before we got a successful draw, not a bad average for me. ;)
After meeting with my Infections Disease Doctor and going over my laundry list of history with bacterial and fungal infections and medications we discussed what I am currently fighting and how to proceed. For the last 2 years I have been fighting a fungal called “trichosporon mycotoxinivorans”. I have not been able to successfully get rid of this fungal or get a clean culture with IV or Oral drugs yet and my doctors have reassured me that research shows that Vfend Is the best treatment against it. We will also be treating for my more common CF bugs cultured such as: “pseudomonas aeruginosa” and “methicillin-Resistant Staphylococcus” (MRSA). I actually enjoyed talking to the ID doctor because he listened to my suggestions and spoke to me about a more aggressive treatment plan post-transplant in order to keep the new lungs from being damaged. It sounds silly but sometimes getting a doctor to listen to you and your suggestions as a patient is very hard to do so I am thankful that this is the guy on my team ☺
UPDATE: My trough level came back almost completely undetected so my therapeutic dose of Vfend needs to be increased, this may possibly be why I am not getting rid of this tricky Trichosporon!! ☹ My doctor warns me that we need to keep closer eye on my liver while increasing dose! Fun, More labs and less cocktails this summer.