CF Clinic day

I managed to get myself up and out the door for 2 doctor appointments.  I had a very hard day yesterday, emotionally and physically.  I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc.  Physical symptoms are non productive cough which sucks.  I can’t sleep for more than an hour at a time it seems.  I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Merry Christmas Eve Eve!

I figured I would update before the craziness of the holidays commence.  The lung pain from the pulled muscle that started last Monday has finally subsided.  That was a brutal week of pain.  I usually push through but when it comes to not being able to breath a decent breath and cough without horrendous pain and tears then please give me drugs (legal that is)!  I’ve learned when to be superwoman and when to let that down.  Continue reading

Another round of IVs down

57 doses of Aztreonam, 19 doses of Amikacin, 133 Saline syringes (not including the extras for blood draws and reaccessing), 57 Heparin syringes, 2 Huber needles, 3 dressing changes…that’s what I have accomplished over the last 19 days plus tomorrow morning.  Tomorrow morning is my last doses of IVs and tomorrow afternoon is my last day of labs.  I will be needle free as of 1:15pm tomorrow afternoon!!  I’m very ready to be free from the needle and dressings that’s for sure.

Now for the million dollar question, “Do I feel better?”  A lot of people think that after I do IVs I’m “better” as in not sick anymore and that is not the case.  Yes, I am better for the time being and the goal is to stretch the time between IVs as long as possible.  IVs are inevitable in my life so I have to do what I have to do to keep on keeping on.   Continue reading

And the verdict is…

…IVs for 2 weeks then reevaluate how I’m feeling to determine if I need to continue to the usual 3 week (21 day) course.  I will be doing the same antibiotic cocktail that I did last time in May/June which was Aztreonam (2g every 8 hours) and Amikacin (25 mg/kg (1250 mg total) every 24 hours). I have managed 3 months without IVs which is possibly the longest in awhile.  I will be doing labs every Monday, Wednesday and Friday to monitor my creatinine (kidney function) and all the other normal stuff. Continue reading

Tennessee Allergens SUCK!

We know that living in Tennessee has taken a toll on my health in the area of lung function.  I have dropped 24% in the 22 months living here.  I have asthma along with CF so that is a double whammy.  I did skin allergy testing about a year ago and it showed that I wasn’t allergic to anything.  I was hoping that it would show something so I could have some answers as to why I was having such a hard time.  I was bummed.  I wanted answers.  Continue reading

Handicapped Parking

I am guilty of watching someone park in a handicapped parking spot and judging whether or not they should be parking there.  They get out and they look completely fine.  Hello Shannon, you can’t see all disabilities, CF included!  Pretty much the only sign that there is a disability in someone with CF is if they wears oxygen.  I have been thinking about when is the right time to apply for/get a handicapped placard as my lung function has declined 24% since moving to TN 22 months ago.   It has been a battle in my mind of accepting the fact that my lungs are as sucky as they are and being ready for even more stares from people.  I know there will be people who make comments that I am “perfectly healthy” or even leave nasty notes on my car saying that I should be ashamed that I am taking a parking spot from someone who actually needs it.  You may be saying that won’t happen.  Well it does, has and will.  It has happened to friends of mine and I’m sure it will happen to me at some point.  I just have to be prepared mentally for it. Continue reading

Kidneys causing first club med trip in TN

It has taken me almost 4 hours to get online.  UTs wifi sucks!  I hope this loads…

I received a call from my nurse saying that my creatinine (kidney level) was high on my labs yesterday.  The normal range for a female is .5-1.1.  Mine was 5.34!!!  I was told to head to the ER for fluids and to be admitted.  Oh joy.  Honestly I feel bad enough that I actually don’t mind being admitted.  I’m just ready to feel better.  Saturday night around 8pm or 9pm I got very nauseous.  I was in bed sleeping all day on Sunday.  I had an appointment for my regular labs while on IVs yesterday afternoon.  I managed enough energy to get to the hospital and back home.  I have been fuzzy headed and kind of blurry vision along with tired and worn out, Continue reading

Light at the end of the tunnel

I have survived the worst of the cold or whatever it was that was trying to kill me last week.  At one point I thought for sure my sinuses were trying to kill me.  I had horrible sinus pain/pressure.  Tons of drainage.  Sore and sensitive teeth from all the sinus pressure.  Terribly dry throat.  Coughing of course.  My teeth don’t hurt now and the sinus pressure is better.  The pressure is still there a little but not like it was.  Still coughing and that has probably increased a little because of the drainage.  Still having headaches every day.

I did not go for lung functions (PFTs) on Tuesday like originally scheduled because I knew they would suck since I was sick.  I have my ENT appointment on the 10th so we shall see what he says about my sinuses.

We got snow and ice in Tennessee in the last few weeks and it is more snow than they are used to.  That means that the city/state shut down.  State of emergency kind of shut down.  They don’t do snow and ice here in east TN.  Pretty much all of the snow has melted but of course there is more in the forecast for Thursday.  It doesn’t usually stick around for long.  I am very ready for spring and summer!

Until next time…