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.

The plan we decided after talking everything over was this…

#1 We will see what my sputum grows out from the sample I gave them today.  If it has more growth, as in strength, than I usually have or if it growing something different than my usual we will start IVs if I am still not feeling good.  I probably won’t hear the results of the sputum growth until Monday.

#2 I have an appointment in 3 weeks to be seen again at CF clinic.  We will check my lung functions again to see if they are the same, up or down at that time.  If they are the same or down and I’m still bot feeling good I will do IVs.  Another possibility after the 3 weeks if I am still not feeling good is doing a broncoscopy.  A bronch is where they put you to sleep and go into your lungs and look around and suction stuff out.  The reason they even mentioned it was for the simple fact that what we have been doing doesn’t seem to be working.  There is a possibility that there is nasty old junk in the cracks and crevices of my lungs.  During the bronch they would suction that stuff out and culture it to see if there is something funky.  My one and only bronch was not the best experience for me.  After the bronch I was on the ventilator for about 12 hours.  I wasn’t expecting to be on the vent after so I didn’t mentally prepare myself for it.  It was scary coming off of the vent.  Now that I know that is a possibility I would like to think I am more prepared for it the next time.

#3 I will also be seeing an ENT (Ear, Nose and Throat) doctor at some point to make sure nothing is going on up there that could be contributing to my lung function decline.  Hopefully I can get an with the ENT appointment before my follow up in 3 weeks so we can discuss whatever they find.  My last sinus surgery was in 2001 and before that it was maybe 1996, I have lost count and time.  Sinus polyps are very common in CF which requires surgery to remove them.  The sinuses hold nastiness and then drain into the lungs.  A whole lot of yuck if you ask me.

So that’s what we have going on there.  Of course I asked if I just need to accept this a my new normal.  Not that I would necessarily be ok with this lung function and the way I feel being my normal BUT if it is I need to mentally wrap my head around that.  I need to wrap my head around it so that I can learn to deal with it and not get so frustrated when I’m not getting better or back to where I was.  Progression is scary.  I know it is inevitable but you are never prepared for it.  We seem to be at a loss as to the reason for my decline in lung function.

It is hard to hear your husband say, “you are sicker now than you were when we got married.”  That makes me mad because I don’t want to get sicker!  Even if I would stay where I am, that would be tolerable.  The idea of getting sicker and being even more limited in what I can do sucks!  I don’t like that I am out of breath after walking into the store or walking up stairs.  I don’t like sitting in public and trying not to cough because once it starts it doesn’t stop.  There is no graceful way to leave a crowded room while coughing.  I always get stared at no matter what.  I am like, “yep that’s me, I’m coughing. Now look somewhere else.”  Staring at me doesn’t make me stop coughing any faster, it actually makes me cough more because I’m trying not to cough and that doesn’t work. haha

Oh yeah, 2 days ago I was having some belly pain throughout the night, tossing and turning with a heating pad.  I took some things to aide in moving the bowels along.  We call those pains, “pooh pains.”  They are no fun.  Today I asked about trying different pancreatic enzymes to see if that would make a difference in my bowel movements.  Lovely I know.  Pancreatic enzymes are what I take every time I eat to help digest my food because my pancreas doesn’t work right thanks to CF.

Ok I think that is enough for one night.  You are probably think, it’s more than enough.

Until next time…

7 thoughts on “Clinic update

  1. Dear Shannon: I wish I could wrap my arms around you and then take this all away. I know you are frightened. It breaks my heart. It sounds like IV’s are in your near future, so I’m going to pray that they kick this crud in the butt and you bounce back. On a good note: I wore your shirt to a CF Mom’s meeting and everyone loved it. You got many, many compliments! Love you

  2. That was wonderful. Thank you for the insight into the life of a cf patient. I find this blog very brave (and well-written) every time I read it. I wish you nothing short of miracles of modern science, friend. In the meantime, if you ever need anything, just cough.

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