Clinic Visit ~ The Good & The Bad

I just got back from clinic. Do you want the good news or the bad news first? I'll go with the bad, so we can end on a positive note...

I got the H-Flu...AKA Haemophilus Influenzae. Yep, I cultured a new bug. This one is often seen in conjunction with meningitis. This is baffling to me since I have been on IV's for nearly 8 of the last 10 weeks. I know that having a depleted immune system makes me more susceptible to picking up new bugs, but I just imagined that being on 4 antibiotics would protect me. I guess that's not how it works :-/ Dr. Dazzle explained that H-Flu is often resistant to Cifoxitin, so that's why it still grew when I was on the IV's in Sept/Oct. This IV Amikacin that I started 2 weeks ago should suppress the H-flu. Dr. Dazzle is not at all worried, so I'm not going to worry either. This is another one of those bugs that will never go away. Instead we will work to keep it under control to avoid lung damage. So now, here's what the insides of my lungs look like...

H-Flu

Mycobacterium Abssessus

Staph

These are my enemies! It's a little frustrating to have new bugs to manage. It likely will make it a little more difficult in the future to figure out which bug is the culprit when I have an exacerbation.

In my last post I shamelessly bragged about how much energy I had, even though my blood counts were low. I forgot to knock on wood while writing that post. That energy evaporated on Sunday. On Monday I took a 6 hour nap, yesterday I took a 4 hour nap, and today I had a tremendously difficult time getting up and out the door to my clinic appointment. I have been tired when I wake up in the morning and no amount of napping replenishes my energy. I was relieved to hear that my counts have jumped a bit and are back to being low/normal. I was also relieved to hear Dr. Dazzle say that extreme fatigue is one of the main side effects of IV Amikacin. He compared it to the fatigue that cancer patients experience while undergoing chemotherapy. I know it's not a great symptom, but it was great to hear that this is normal. I no longer feel like a lazy slob. I feel like I can now give myself permission to rest when I need, knowing that no amount of fighting against it is going to take it away. So sleep I will do...

I brought up my hearing issues and Dr. Dazzle is scheduling another complete work-up from audiology. We'll see if my hearing has been compromised and if so, in what ways. I wouldn't be surprised if I've sacrificed a bit of the hearing in my right ear for the sake of this treatment.

That brings us to the great news! I blew AMAZING PFT's! I haven't had PFT's this high since 2005, prior to having my son. They were 3% higher than last time, which was 4% higher than my baseline. Basically, I'm 7% better than my baseline on my FEV1. Good stuff! I never share my PFT #'s on my blog...just a choice I made when I started blogging. Yet, believe me when I say that they were good :-)

I gotta go take a nap now. G'night all!