Clinical Dx: Crapola

I emailed my nurse yesterday to let her know I was not feeling any better since my 2 weeks of IVs ends tomorrow.  I asked what my sensitivities were showing on my sputum culture.  I am now resistant to the Amikacin, meaning that in the lab the Amikacin isn’t killing the pseudomonas that is in my lungs. This means I need a med change. With my long list of drug allergies and the limited list of drugs that are showing sensitivity, it is hard to pick a med. Continue reading

Florida trip and CF awareness month

It has been a busy few weeks.  Heck, it’s been a busy few months. 

I was on IVs, then in the hospital for kidney failure then a few weeks of recovery and energy storing for my trip to Florida this past weekend.  My sister and I went to Miramar Beach in Destin, FL this weekend.  We arrived Friday morning and left Monday evening.  We packed in a lot of time on the beach laying in the sand, enjoying the water and soaking up the sun.  We also visited some of the “famous” places there like McGuire’s and AJ’s.  We even got tattoos!  My sister’s says “With Every Breath” and mine says “Every Breath Counts.”  They are on our ribs under the bra line.  To seal the weekend we went for a helicopter tour to see some sharks and dolphins.  It was beyond beautiful!  I could have stayed up there all day. 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

Home sweet home!

I got paroled today!  My creatinine was 1.82 this morning!!  After receiving the great news that my creatinine was down my sister walked into my hospital room.  Mind you, she lives in Kansas City and I’m in Knoxville, TN…11 hours apart!  I was speechless and that doesn’t happen often.  I was so surprised.  That made my day even better.  My doc came in and asked if I was ready to go home and of course I said yes.  I wasn’t going to argue with him.  Although I was ok with staying if it meant a sister sleep over in the hospital.  We haven’t done that in years.  I got my walking papers and was home by noon.  Continue reading

Progress with a headache on the side

Today started off with a doozy of a headache that is still hanging around.  Since I can’t take ibuprofen at the moment I have to settle for Tylenol which as usual didn’t help.  Next up…Tramadol!  Strike 2!  Waiting to see what they want to try now.  I don’t like taking narcotic pain meds at all and only do as a last resort but this headache has hung on for dear life!  Anything and everything makes it worse too.  A knock on the door is amplified.  The light hurts.  Chipper people are extra annoying…hahaha.  I have spent the day trying to sleep in my dark room with no TV.  I even have the brightness turned down on my phone and laptop.  This headache can get to steppin!  We are going on 12 hours with this one.  Ouch!   Continue reading

Stubborn kidneys

Another day in the books…  I am still nauseous and my eyes feel like they can’t focus at times.  I have pretty much no appetite and nothing sounds good at all but I keep snacking to keep my calories somewhat up.  My calorie intake is defiantly not where it needs to be but some is better than none.  My creatinine has been on a roller coaster.  So here are the numbers.  Monday it was 5.3, yesterday in the ER before fluids it was 5.99, last night after a bag of fluid and half a bag of fluid with sodium bicarb it was 5.6 and this morning it was 5.8.  As I said before the normal range is .5 – 1.1. 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

Miss the working world

My bonus son is with his mother for his time with her for the summer right now.  With him being gone brings a lot of free time for me.  I like having something to do or an option of something to do.  Of course I like having free time too where I can be lazy and watch TV.  Having all this free time is making me really miss being in the working world.  I miss feeling accomplished by doing something productive in the work force. Continue reading

Dodging the germs

It is never easy to dodge the “normal people” sick germs. My bonus son has had a doosey of a time since moving here to Tennessee with colds and such. He has bad allergies so I’m sure that played a role in it all. Two days after coming back from winter vacation in Missouri he got sick. Sick enough to keep him out of school for 3 days which is rare. He hates to miss school therefore he powers through it usually. This time was different. I say all that because who do you think is home with him when he is sick…ME. Me, who has a crappy immune system and has to try really hard to not get whatever he has. He was quarantined to his room and not allowed to touch anything outside of his room until he was feeling better….haha. Lysol wipes and spray were my friend. As soon as he was back to school I stripped down his room and pretty much fumigated it with Lysol. I didn’t manage to get what he had this last time.
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Normal…what is normal anyway?

What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.

My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.

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