Rima here, I hope everyone had a lovely Thanksgiving yesterday with family and friends and hopefully no one had to work the ridiculous black Friday madness! Laima and I both think the whole concept is insane, which I'm sure many of you have the same thoughts as well. Like, okay let's all get together and be thankful for what we have and then several hours later, all turn into rampaging animals...(yeah no thanks)! We're content with using the internet for any deals out there from the comfort of our bed, no pitching tents in the cold for hours over here! In spirit of upcoming Cyber Monday we're going to have a sale on Air Catchers! Keep your eyes open on Monday, they sure can make a lovely gift for the holidays! :-)
Being in the hospital is no fun for sure but at this point in my life I'm pretty used to it. It has become second nature to being doomed to these four walls and fluorescent lighting on a regular basis. Each hospital that I've been admitted to is pretty different about the way they do things. I have not yet decided how I feel about Minneapolis. I just know that I was spoiled in Denver. I definitely don't think I could ever get used to doing the vest (chest physical therapy device) 4x a day. Here they're vest nazis, their words not mine!
Just about three weeks of being admitted to the hospital on Sunday. One thing they're worried about are which antibiotics they will be able to use post transplant. Due to how resistant the lovely "bugs" (germs) growing in my lungs are to basically all antibiotics, I am running out of choices. Right now the antibiotics are doing the bare minimum of keeping me from getting sicker. They can't fight all the resistant germs, maybe just a few. Many of the abx (antibiotics) have unpleasant side effects, allergies and can cause kidney toxicity. But we're going to have to start utilizing them. They think it's because my lungs have a constant infection from the "bug" Pseudomonas because my lungs are so crumby overall.
This past Wednesday when the pulmonary/transplant team rounded they came bearing some unpleasant news. They said they were concerned that they don't have a handle on the infection. They had decided that a complete antibiotic overhaul was in order and created a new intense cocktail of drugs. This new "cocktail" sadly does not include whiskey, gin or vodka (sad face). It does however include four IV antibiotics, two oral antibiotics and one inhaled. Previously I was only on two IV, one oral and one inhaled, so substantially more now. They're hoping this will knockout whatever it is and help my fevers dissipate. I need 72 hours of no fevers and possible improvement of PFTs to show that it's working, but this sadly will not be what lets me go home.
I am now actually indefinitely stuck in the hospital until transplant....something that I did not want to hear. At the back of my head I have known this could be a possibility for a few weeks but now it is reality. They do not feel comfortable letting me go home. My PFTs once again have gone in the opposite direction of what I would like to see. The little gypsies have decided to stay and hangout at 15% now (eye roll), like lets get with the program guys! k, thanks!
Oh, and the kicker to all this is that they put me on hold on the list, which means that if there are any lungs that match me, I will not be getting them... The doctors feel very strongly about this which I understand why, but it's still a bummer. It would be dumb to get the transplant while my body still has an ongoing infection and would end very badly. Even if the infected lungs are taken out, the infection is still left in the rest of the airways that stay in the body. So the next week or so will tell whether this new "cocktail" is working. If not then I don't know...