Tag Archives: cystic fibrosis

Yay for good clinic appointments

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Today I had CF clinic.  It was an all around good visit.  Sometimes I hate saying that I feel “good” because I know it won’t last forever.  First up was lung functions.  My FEV1 was 35%/.98L which is pretty much the same as last time.  My weight was stable at 123 and my pulse ox was 95%.  I met with the whole team of folks and was sent on my way.  Can’t complain there.  The pulled muscle I had FOREVER is finally better.  Short and sweet update!

Until next time…

Still fundraising for transplant at www.COTAforShannonM.com.  Thank you for everyone that has already donated, it is greatly appreciated.

Hanging in there

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I finished IVs on Friday morning.  It was a long 10 days of a 2 hour infusion every 8 hours.  That’s 60 hours being hooked up to “the pole” in the 10 days, which doesn’t include all the breathing treatments, pills and time hooked up to oxygen.  Yes, taking care of myself is a full time job.  It is tiring at times and annoying most of the time.  I do try and look at treatment time as a positive thing.  It is sustaining my life and I get to update you all on this here blog while doing my treatments along with trolling Facebook. Continue reading →

Sick yet again!

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Hello friends and family!  Seems like I was just here updating you all.  Well I am not feeling good again after only 2.5 weeks off of IVs.  I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March.  Along with achy and my chest is sore from all the coughing.  Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days.  It hurts so bad to cough.  I’ve been trying to brace myself when I cough but that doesn’t even help.  It’s like something is stabbing me every time. Continue reading →

Hating my lungs

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As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is.  I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in.  Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing.  I finished my taper of prednisone yesterday.  I’m not feeling better so I called back and asked for antibiotics.  I started oral Bactrim and Levaquin yesterday.  I have a CF clinic appointment on Thursday so we shall see how I am then. Continue reading →

Coughing Hazard

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A few days ago I started having sharp pain in my left lower side at the end of my ribs.  I’m pretty sure I have pulled a muscle or fractured a rib again from coughing.  There’s not much you can do for either except to manage the pain.  Of course coughing hurts like crazy.  I’m trying to master breathing and coughing with my right side only with no luck…haha.  Just kidding.  I might ask for an X-ray at some point if I require more pain management.  I’m trying to just deal with it but it’s annoying.  Just wanted to get this into my blog for my memory, which sucks.  It’s just another part of my reality.  Coughing sucks.

Until next time…

Clinic check up

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Today was originally a regular follow up but became an IV check up. All looks good. My weight is down a little from all the antibiotics wreaking havoc on my gut. My FEV1 was down a smidge to 34%/.98L but still around my baseline. I also had a dexa scan (bone density). I have a dexa every 2 years to check my bone health. In 2016 my scan showed osteopenia which is a step before osteoporosis. It just means that my bones are a little weak. With CF I don’t absorb nutrients normally because of my bad pancreas therefore I have to take vitamin and calcium supplements. Continue reading →

It’s my birthday!!

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Whoop Whoop!!!  I made it to 39!  When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing).  I got a great birthday present of getting off IVs yesterday.  It was a long 3 weeks of antibiotics.  I am feeling pretty much the same which I will take because I am not worse.  Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain.  I have a clinic appointment next week.  I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.

Until next time…

Changing IV antibiotics

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I’ve been on IV’s for 13 days with no real improvement.  I called my nurse to discuss changing antibiotics since I’m not feeling any better.  We decided on IV Zoysn every 6 hours and oral Bactrim three times a day.  I usually get an upset stomach and (TMI) loose stools with these two meds so I will need to take probiotics to try and help that.  I will be on these two new antibiotics for two weeks with the hopes that I will start to feel better.  We had to look at my sensitivities from my sputum culture to figure out what drugs should work and these two were the winners.  Oh joy!

Until next time…

Clinic appointment

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I have been really short of breath and coughing more so I made an appointment with CF clinic.  Today was the day.  I did lung functions and they were actually up since I was last seen in November.  My FEV1 was 37%/1.05L.  I decided to do IVs in hopes of that I caught whatever this is before it got bad.  I will be on cefapime every 8 hours and amikacin every 24 hours and have labs twice a week.  I have a follow up appointment on February 7th.

Until next time…

CF is not my friend today

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We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading →