Impromptu CF clinic appointment

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

Progression…may as well be a curse word

(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

Chest CT results

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…

1 week follow up on chest x-ray

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

CF Clinic Day

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

Hawaii – Mom’s happy place

We recently got back from Hawaii (Honolulu, Oahu).  The purpose for the trip was to spread my mom’s ashes in her favorite place on earth.  She wanted to be in Hawaii forever and ever.  We chose to spread her ashes in front of Duke’s restaurant on Waikiki beach, mom’s favorite restaurant.  It was a very special time but also surreal and will forever be a memory in my heart. Continue reading