Christmas in the Club: Day 4

I’m going home!!! I just signed my walking papers aka discharge paperwork. I’m doing a dose of cefapime right now since it was due. It only takes 30 minutes. At home it is just an IV push which means I push it over 20 minutes (it comes in a big syringe). The hubs is heading here to pick me up. He’ll swing through and I’ll go down, get in and be on my way!

I didn’t know if I would be able to go home today because one of the doctors I saw said they usually want another set of lung functions after 7 days. I had them last on Sunday morning so I kinda bargained with him to do them Friday morning. He contacted my CF doctor (who’s on vacation) and my CF doctor said he was fine with me going home early! Well isn’t he the best! I might just have to get him a gift to say thanks. I am able to use my home spirometer if they want updated numbers. I have an appointment for labs on Tuesday morning. I usually get labs once a week when I’m on IVs unless I’m on colistin or other antibiotics that are hard on my kidneys. If I’m on any of those antibiotics then I get labs twice a week.

They are delivering my IVs to my house so I don’t have to wait at the hospital for them. I’m set to be done with home IVs on Saturday the 7th which will be a total of 14 days of IVs. We can always reevaluate then if I feel like I need another week. I’m hoping I’m good to go on Saturday though. I’ve been known to need 3 weeks of IVs, so I’m hoping not this time. I am also doing oral prednisone tapering from 40mg for 3 days to 20mg for 3 days then done.

I’m not going home on oxygen thankfully. My oxygen sats haven’t been dropping as low when I don’t have it on while going to the bathroom or getting cleaned up. I will be taking it easy when I get home because recovering from the parainfluenza, slight pneumonia (really only means an infection was able to be seen on the CT) and a CF exacerbation will take some time. I don’t have anything planned for the next week except for labs on Tuesday so all is good. I’ll update if/when there is anything to update.

Until next time…

A little of this and a little of that

Let’s see….where to start.  It’s been 7 days since my power port was placed.  I’m healing nicely.  There has been minimal swelling and bruising.  The most painful part is the incision healing.  I have been using ice packs for the swelling and bruising.  There is a steri-strip over the incision that will come off when it’s ready.  I sure do want to rip it off though, it is making it to where if I move a certain way it pulls and is painful.   Continue reading

CF Clinic, Power Port, Grief

Yesterday (5/5/16) was good ol CF clinic.  Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests.  My PFTs (lung functions were) basically the same.  My FEV1 was .93 L/ 31%.  My first 2 attempts were identical at .89 L/ 30%.  If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L.  That is based on my age, gender, height, weight and race.   Continue reading

2 appointments today

Today was a busy fun filled day at UT hospital for 2 doctor appointments.  Ok, it wasn’t so fun filled but it sure was a long one.  It was about 7 hours today.  I had a big lapse of time between appointments which I spent in the cafeteria having some lunch and watching a movie with my sound canceling headphones so I could actually hear the movie.  Oh yes and of course answering emails, Fb messages and comments,etc.   Continue reading