October CF Clinic update

Today was a good day and a good clinic day at that.  First stop is always the scale, everyones favorite thing.  I have been keeping my weight up which is a good thing medically speaking but not so good in the clothes department.  I have gained 12 pounds since January, 4 of which have been since last month. There is a lot of yoga, sweatpants and other workout gear being worn around here.  Mind you, there is no “working out” going on here except shoving myself into my skinny jeans/non stretchy shorts and “fitted” tank tops. Of course there is the real exercise going on at Physical Therapy for my shoulder, which is getting much better by the way, but that is it.  hahaha Continue reading

Well hello, “Oscar,” we meet again

I overcame the lung pain and it finally dulled by Sunday to where it only really hurt if I was taking a deep deep breath.  My morning have been pretty bad.  Mornings in general are my worst time of the day as far as coughing and sputum production go.  Sitting up after laying flat during the night stirs up all of the junk that has settled and the coughing starts.  I have always said that mornings are NOT my friend.  If I had a way to skip them I would.  It hurts my lungs/chest and head along with making me out of breath.  I have to catch my breath and try not to cough so I can walk to the office to do a breathing treatment without running into walls or even peeing myself when trying to walk and cough at the same time.  Yep, that’s the real stuff right there. Continue reading

Hospital follow up today

Today was a decent day.  I had my follow up from my hospital stay today.  We did the usual clinic stuff.  My weight is up a few pounds since my last visit.  I’m sure it is all the good food and lots of snacks that we have been blessed with over the last week.  I’m not complaining because I need the calories and fat.  The thing is, all of my gummy bears and Snickers bites have already disappeared.  That may or may not have something to do with those few extra pounds. 🙂 My lung functions are holding steady at FEV1 of 1.39 / 47%.  They aren’t great but they are steady so I’ll take it.  They were all very concerned with how my kidneys decided to take a nose dive, or well a spike I guess out of nowhere.  I gave them a scare and they were all racking their brains for causes and solutions.   Continue reading

IVs, we meet again

Where to start…..I finished the oral Cipro and prednisone on Friday the 23rd.  Still wasn’t feeling great, although the prednisone helped a ton by opening up my reactive airways making me not so tight chested and wheezy.  Tuesday, the 27th, I started with noticeable lung pain in the upper right lung.  It hurt to cough, good luck not doing that one, and made the vest uncomfortable to use during treatment times but I powered through it because I have to get that junk out.  The lung pain continued yesterday and today.  I called my clinic to ask for a chest x-ray to make sure there wasn’t anything blatantly obvious on it as to a reason for the pain, like a major infiltrate (junk/blood stuck in there), infection, pneumonia, collapsed lung (partial, considering I was still able to breathe decently) or fractured ribs.  I figured it was just do to the raging pseudomonas infection I have going on at the moment.  Continue reading

Clinic update

Today was clinic day.  If there is one thing CF clinic has taught me over the years, it’s patience.  I am used to it so it is no big deal but others would flip if they had to sit in the doctors office for 2.5 hours or more.

I haven’t been feeling the greatest as you know since I started oral cipro and prednisone.  I have been on both for 11 days.  I have 2 days of prednisone left and 3 days of cipro left.  Today’s clinic wasn’t the greatest.  First stop was lung functions which were down from last time.  This time my FEV1 was 1.37 / 46%.  Last time I believe they were 1.47.  They aren’t down a ton but they seem to be taking a slow decline.  Gotta love having a progressive disease that you have no control over. Continue reading

Accepting a new baseline

Accepting a new baseline is never easy.  What does a new baseline mean you ask?  Well a baseline is your “normal.”  It is where you are at when you are feeling good and at your best.  Everyone’s baseline is different.  In the world of CF a baseline refers to where your lung functions are and how you are feeling in correlation with those numbers.  With CF your lung functions go down over time since CF is a progressive disease.  When I say over time I mean it is not an over night thing.  Although you can have an exacerbation that seems to make a drastic change over night.

My lung functions have slowly gone down over the years with plateaus (baseline) along the way.  I hit a plateau and stay there for a while, which is considered a baseline, then another series of exacerbations can knock my numbers down.  When they get knocked down sometimes I am not able to get back to where I was, thus I hit a new plateau/baseline.  The same cycle continues throughout life.  I have always said that it is a good thing that CF is a slow progressing disease (for the most part) because if I woke up with 40% lung function after being at 80% the day before I would be a little upset.  Not to mention I would not be able to breathe.  With CF being slow you have time to adapt to the lower lung function.
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