Still not feeling well

Today I had a check up since I’m not feeling better after 6 days of IV antibiotics.  My lung function was down again to .88L/31% FEV1.  I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days.  I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go.  We decided that if I am not better over the weekend I am to call my nurse to be admitted.  They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it.  There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1.  Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter.  So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better.  However I kinda feel like I am prolonging the inevitable of an admission.  Might need the heavy hitters to knock this one out.  I’ll update next week.

Until next time…

IVs it is!

I tried the oral antibiotics route and it didn’t help.  I’ve been on them for about a week and a half.  All they have done is make for a yucky tummy.  With that said, I called my nurse for IV antibiotics.  I haven’t felt good for too long.  It’s always hard to tell if it’s a new normal or if I’m actually sick sick.  So I’m looking at this one as I’m sick.  I will be doing IV Zosyn every 6 hours for 14 days.  I will go tomorrow morning to get my port accessed and to get labs drawn for a baseline.  They also want an x-ray.  So I will be walking all over the hospital.  I’ve also been having bowel movement problems, as in not going.  You would think that with both strong antibiotics in my system I would be going non stop.  My body like to not do things the suggested way. haha.  I am drinking lots of miralax to combat the problem, which is no fun.  I hope to update in 2 weeks that I am feeling better.

Until next time…

Just a reminder about my www.COTAforShannonM.com fundraising link for medical/transplant expenses.  There is a fundraiser in the works for you Kansas City folks.  More to come on that.

Threw in the towel

Hey all!  It’s been a little while since I have updated.  I have not been feeling well for a few weeks.  I have been coughing more, especially at night.  I went for lung functions and to give a sputum sample today.  My lung function is down just a tad.  My FEV1 was .95L/33%, down from 35%.  That’s the amount of air that I can push out in the first second after taking in a big deep breath.  Which basically means I’m using 33% of my lung capacity. Continue reading

Hanging in there

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!

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

Home from the hospital

I got home from the hospital on Tuesday afternoon.  It was a long week in lock up.  I survived though.  I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient.  I am now tapering down from 60mg prednisone, a long taper.  I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying.  I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha. Continue reading

Hating my lungs

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

Cough cough cough

Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading

Coughing Hazard

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…

It’s my birthday!!

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…