On Monday I was dealt a huge blow. My doctor made her rounds, and when she stopped by she told me that my sputum culture results were starting to come back. But it was not good: my culture was coming back pan-resistant to all of the antibiotics so far. It wasn't completed, there were still a couple meds that maybe would come through as sensitive, but it was not looking good.
Before I continue my story, I'm going to do a little CF301: Sputum Cultures here to explain everything I'm talking about, as a refresher or in case you're confused. Every time I come in the hospital or go to a clinic appointment, I do a "sputum culture" which is where you cough up something and send it off to the lab. It takes 5 days to complete, because the ones they do for us CFers are very detailed. So once at the lab, they determine A. what bacteria are growing and B. the drug sensitivities of said bacteria/bugs. The two biggest players in the CF world are MRSA (staph, as everyone has heard of) and Pseudomonas. There are others bugs that are bigger concerns, but those two are the most common. There can be different strains of the same bacteria. Each one is different, each one can have different sensitivities. When I say "sensitivities" it means if the germ is "sensitive" or "resistant" to a specific medication. As in, a medication will work with something that is sensitive, but it won't if the strain is resistant. Ok, we good? Good. I shall proceed with story...
So the pseudomonas bug that I have was coming back pan-resistant... which means it was resistant to everything. Again, the test wasn't completely finished, but out of the meds they had tested so far, it was resistant to all but two. This is not good, and something to be feared. What it meant was that the meds I was already on were doing nothing, and there would be no meds I could take to get better... because it's resistant to everything. If you're thinking Well... how can that be, there must be SOMETHING right? Sadly no, there are cases where bacteria become resistant to everything and then, according to my doctor, you just hope and pray that things change and that what you're doing just maybe gets through and does a little damage to clear out some of the bacteria. This is what the medical community is concerned about and there are news reports every once in a while about anti-biotic resistance; this is exactly what they're talking about.
It honestly took a little bit for this news to sink it, but once it did it was really hard to deal with. Knowing there was a strong possibility that I was not going to be able to get better was scary. I called Jarrod to tell him what was going on, and he obviously had a lot of questions, as did I. Unfortunately, I knew I probably wasn't going to be able to see my doctor on Tuesday to clear up some answers, but would have to wait until Wednesday.
Tuesday was not the best day. I was trying to stay positive and hang on to some hope that maybe, just maybe, those last two meds would come back with an S showing they were sensitive, and we'd have two meds we could work with, and also knowing that my bugs switch up all the time as to what they are sensitive to, so maybe at a later time I'd regain some sensitivity. I had a few moments of crying throughout the day, and explained to one of the head nurses who stopped by how I was trying to stay positive with the news, but it was tough.
I prayed. I really tried to talk to God to help me through this, and when the eucharistic minister brought me communion that morning, I burst into tears. (As a side note, receiving communion in the hospital is so much more personal than at church. I know you place your hands out to receive the body of Christ and it's pretty much the same motions, but there is just something different about having a one-on-one experience when the person is right there, in your room with you, saying "Behold... the Lamb of God who takes away the sins of the world..." like the priest does at the altar but she's holding it right there in front of your face for a much much longer time than when you're at mass, and you're the only one responding. It can be extremely moving, and it was especially for me on that day.)
I talked to Jarrod in the afternoon and we decided I should ditch my anti-visitor rule, and he should come up here. So he did, and I'm so glad. It kept my mind off of things and it was just so good to have him here. We finalized our vacation plans, which I'll talk about another time, but it was good to get my mind thinking of something I'm looking forward to. He ended up staying the night too, so he could be here when my doctor came around to talk to me.
So on Wednesday around 1:30, my doctor came in and she said she had good news. My pseudomonas came back almost all sensitive! With the exception of like three meds that had an R next to them, the rest had an S. I was stunned. Two days ago, when I was looking at this same report, I was seeing all R's. But they somehow had all changed to S. And! This time I only was growing one strain of pseudomonas, and that's it. Last time I was here I had 3 different strains, plus my MRSA. But this time I didn't even have staph! No staph. Like... I can't even remember the last time I didn't have staph when I was in the hospital. I have cultured staph for a very, very long time, fairly consistently. I could not believe it, I was so speechless and on the verge of tears of happiness.
This whole incident was so unexplainable, I have no other explanation than that God heard our prayers. I know the test was not completed on Monday, but like I said, when I looked at it everything had an R by it and on Wednesday, those exact same things had changed and now showed an S. I have to believe that God is not done with my lungs yet.
The other good news I have is that I will most likely be coming home tomorrow. Barring some sort of unexpected bad PFT tomorrow morning, I am scheduled to come home on meds for the following week. I haven't done home IV's in a long time, but with the flu and everything here, I figured it would be best to come home as soon as was reasonable. We were thinking of waiting until Monday, but I am kind of anxious now that I know I get to go home soon.
God is good!
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