I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense. Continue reading
Well I survived the trip…hahaha. I had a great time with my family and celebrating my great uncles 90th birthday. We went to 7 or 8 beaches, I lost count. Another one of my must haves when in Hawaii is shave ice, we got shaved ice 5 times, yummy! No it is not a snow cone…it’s completely different. It is shaved ice from an ice block, not ice pellets. Anyway that is your Hawaiian lesson for the day…haha. Continue reading
I had an MRI on December 22nd and didn’t hear anything until after the holidays. The results are that I have a minimal C6-C7 impingement (pinched nerve) in my neck. There was nothing of significance in my upper back to give reason for my lung/chest pain on the MRI. The lung/chest pain is most likely from pulled muscles from coughing so much and so forcefully. I am awaiting a referral to a neurosurgeon for the pinched nerve in my neck. I have had the pain in my neck along with headaches for about 6 months. I’m happy to have an answer about my neck but bummed that we really don’t have any concrete answer about my lung/chest pain. The lung/chest pain is slightly better, especially the fractured rib site, than it was when it began. Now it seems that the rest of my muscles in my chest are sore from compensating for the pain which is no fun. I see a neurosurgeon on a February 2nd about the pinched nerve. More on that later.
IV antibiotic update: Last Thursday (the 1st) I had my regular labs drawn. I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2. That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys. We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9! It is better to stop it before it gets to bad. I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range. I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading
Saturday will be 14 days of IVs so I called my nurse to let her know how I am feeling. I am still having the pain in my lower right side (just at the bottom of my ribs) that has been there for a few weeks. I’m convinced that my right lung has it out for me. It seems to be where most of my infection is, I fracture ribs from coughing on that side and I also get random pains on that side. Maybe it’s my special party trick. Continue reading
I had a chest CT yesterday. It showed a few new spots/infiltrates which are infection but generally speaking it is stable-ish from my last chest CT, no major changes just subtle changes.
I haven’t been feeling good for a week or more. Mornings are the worst, as usual, but once I get moving and do my morning breathing treatment it is more tolerable in general. I have been having my usual symptoms of an exacerbation; increased cough, increased sputum, increased fatigue, increased pain on my right side of my chest, increased over all blah feeling.
All of that means that I am the winner of IVs for the next 21 days/3 weeks!! I will be on Colistin (IV push) every 12 hours and Zosyn (IV ball) every 6 hours. IVs take a lot out of me so I will be worse before I’m better. Hopefully this means I will be good to go for our busy house full over Christmas. They are drawing fungal labs to verify if there is anything fungal could be the culprit. I will be seeing my CF team again on December 15th. I will be having a repeat chest x-ray a few days before that to see if there are any changes. I’m starting the IVs tonight but will only get 1 dose of each medicine in tonight. 21 days of IVs should be December 8/9.
Until next time…
Another day in the books… I am still nauseous and my eyes feel like they can’t focus at times. I have pretty much no appetite and nothing sounds good at all but I keep snacking to keep my calories somewhat up. My calorie intake is defiantly not where it needs to be but some is better than none. My creatinine has been on a roller coaster. So here are the numbers. Monday it was 5.3, yesterday in the ER before fluids it was 5.99, last night after a bag of fluid and half a bag of fluid with sodium bicarb it was 5.6 and this morning it was 5.8. As I said before the normal range is .5 – 1.1. Continue reading