Friends and Family

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

Impromptu CF clinic appointment

I haven’t been feeling the greatest for over a week.  I’ve had an increased cough along with increased sputum (what I cough out in case you don’t know what that is).  I have been having trouble sleeping.  I also have been more worn out and more short of breath and needing to use my oxygen more often.  I called my CF nurse to ask for IVs and I got an appointment with the doctor instead.   Continue reading

Happy 37th birthday to me!!!

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

MRI results & Transplant Clinic

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.
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CF clinic check up

I spent the day at the hospital with 2 different appointments.  First up was my CF clinic check up from my 21 day course of IVs.  My main complaint today was the continued pain in my right side.  My appointment was at 9:30am and I was finished at 12pm.  A lot of people complain about waiting at doctors offices.  I, on the other hand, am used to it.  It is par for the course when you have CF (or any other chronic illness).  I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn.  My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor.  I am now a professional “waiter” by this stage in my life. Continue reading

21 days down…

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

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…