Small Update

 Small Update

 

    I finished my last IV antibiotic dose Thursday night. I still have a week of vancomycin left. The posaconazole will be another 3- 6 months. On Friday night, I got a lab corp text that said my labs were ready to view. I had gotten bloodwork taken on Tuesday. My cyclosporine level was only 38 and it needs to be around 150. This was concerning. My creatinine had also risen to 1.6. That's not good either.  I had been drinking a large amount and had even increased my usual fluids to an extra drink for a total of 6, 12oz drinks a day. I thought that most likely, my coordinator would tell me to add 25mg of cyclosporine at night. I just wasn't sure if she'd want me to alternate 25mg and 50mg every other night as sometimes we do. I know that the posaconazole increases the cyclosporine by quite a bit. Then I was also concerned that the cyclo would cause my creatinine to increase even more as it's nephrotoxic. I ended up calling the emergency line and speaking with a doctor who said to increase the cyclo to 50 every night and get new labs on Tuesday. So that's where I'm at now. I am still short of breath with mild activity. I still don't know the cause. My lungs feel clear, no wheezing and no mucus.

Clinic Visit

Clinic Visit

 

    Wednesday I went for my usual clinic visit at the transplant center. I was dreading doing the lung function test as I have still been a bit out of breath with exertion and my numbers at home, on the peak flow and incentive spirometer, have been a bit low. To my surprise the technician told me my numbers were good. After telling her I was shocked she compared my numbers to my last numbers and the FEV1 went up by two points from 93 to 95. I know something is still going on in my lungs and I've only been on the Posa for a week so I do think my numbers still have room to improve. I also still have not been going to yoga. I walk occasionally at the park .75-1 miles, albeit slowly. The doctor and I discussed the possibility of staying on the meropenem another week to make sure the infection is really gone this time. In the end, we decided to do one more week. It seemed like such a fast visit as I was able to skip X-ray which is across the street from where we park so we didn't have to walk across the street through the buildings twice like we usually have to do. Since I already did several CT scans, I didn't need an X-ray. I got a script for another CT scan to be done in about a month or so after the Posa has some time to work. I don't love getting so many CT scans due to the radiation they emit. I try to get one every two years, sometimes once a year. My mom accompanied me to the appointment and we got some pizza at my favorite pizza place afterwards. I saw my blood work came back today and my potassium was quite high at 5.9. I had made chili and was eating it for a few days and that was probably not a good idea as its full of potassium. I have to be more conscious of my potassium intake as I have a later stage kidney disease and I take two medicines that raise potassium levels. My stomach hasn't been quite as distended as it's been but it is still retaining some fluids. All in all I'm happy with my progress, I just wish I knew I was out of breath despite my pft being good. My doctor also put a pulse ox on my finger and walked with me a bit. My sats were 100, so the windedness is a bit of a mystery.