What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind. Friends and family have been on my heart and mind for a while. The sicker that I get the more I think about them and what they may be feeling. Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge my CF or even remember. It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading
Today is a happy day because we get to celebrate me, of course! Yes, I LOVE getting older because it means I kicked CFs butt for another year. On the flip side it is hard day without my mom here. I thought after last year this year would be easier. Considering I was in the hospital last year and it was the first one without mom here. I have been doing nothing but crying most of the day thinking about mom. She would call me at 3:05pm, the time I was born, on my birthday every year. There were some years that she couldn’t wait that long and would call in the morning and then call back at 3:05pm. I miss that phone call of her singing happy birthday to me. We were VERY close. I had plans to surprise her on her birthday last year in April but obviously that didn’t happen. Continue reading
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
(Kind of a ramble…sorry) It is day 11 of IV antibiotics. I felt horrible over Thanksgiving and the weekend. My husband was sick last Monday and Tuesday as well. We were no fun last week, that’s for sure. We had Thanksgiving lunch in our PJs and watched Netflix and football. My husband is back to his healthy self, thank goodness. When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday. We didn’t need to subject my sister, nieces and nephew to all the germs in our house. We sure missed having them here for the few days. The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon. That broke my heart. Of course, I am now thinking of when we can get a visit arranged ASAP. She said she wants to come here for her birthday. I agreed that was a great idea! Spring break in Tennessee!! Whoo hoo!!! 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…
Wednesday I had a chest x-ray to check the progress of the upper right lobe where I was having the slight pain, which is where the x-ray showed the atelectasis (air trapping). My x-ray was unchanged. The prednisone didn’t do much if anything for the atelectasis. The next step is a chest CT. I am scheduled for the CT Thursday the 17th. After they get the results from the CT we will then figure out what the next step will be and if there needs to be. The atelectasis could simply be more shadowing and not as prominent as it appears which the CT will give us a more definite answer. Continue reading
The first bit of news is that my dad is here to visit for a week…yay!!! He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them. Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha
Today was a good clinic day. First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick. I have been having good days and bad days as per my normal so I was curious how my appointment would go today. Continue reading