The Last 6 Days…

This is what the last 6 days have looked like to me…

Thursday, August 3rd:  My nurse called and said my kidney level (creatinine) was up today when I had my bi-weekly labs drawn. So I’m at the ER getting checked in then getting admitted. The plan is to get me hooked up to fluid to help flush out my kidneys. It’s not as high as it was the last time I was admitted for acute kidney failure which is good that we caught it. The reason my kidney level is high is from the antibiotics that are filtered through my kidneys. Sometimes the kidneys take a hit. I’ll keep you all updated.

Update: I’m finally in a room!! While in the ER I had a chest X-ray taken, ultrasound of my kidneys and bladder done, the ER doc saw me along with the pulmonary fellow, pain meds for this stupid rib pain. The rib pain is much worse today. I was coughing and felt something pop, not good. But with all that said I’m finally in my room and after my nurse and respiratory therapist are done I’m hoping to get some much needed sleep.

Day 2 UPDATE: I’m counting yesterday as day 1 even though I wasn’t here all day. Anywho, I tried to sleep as much as possible last night and today. My pulmonary doctor came to see me and he said my X-ray didn’t show anything broken so we agreed that it is one hell of a pulled muscle. Ouch!!!!! My other CF doc ordered lung functions which I found funny with this pain. I made them happy and attempt them. I got 16%…hahaha if that’s the case list me for transplant now! I can’t take a deep breath or blow out hard so a low number was expected. I hope tomorrow is another day of rest because when I’m sleeping I’m not paying attention to my pain. Thank you for all of your thoughts and prayers!

Day 3 UPDATE: Still in pain on my left side. An 8 on the pain scale. The pain medicines aren’t working because of the kidney issue. I was told that by one of my doctors. He said the pain meds are stay at the kidney and aren’t filtering through. Anyway, my kidney level is still the same as yesterday 2.8. I will continue fluids in hopes that it goes down. Last time I had acute kidney failure it took a week for my numbers to get in to the normal range. Also my numbers were much higher than, 6.9! I haven’t gotten as much rest today as I had hoped. Hopefully I will sleep better tonight.

(Sunday, Aug. 6th):  Quick update: I’m still in a lot pain, the doc is going to change my pain med because the 2 I’m on aren’t doing anything. No word yet on what that is going to be. My kidney level is down to 2.23, so we are going in the right direction.

Day 4 UPDATE: I didn’t get to sleep until around 3/3:30am so that wasn’t fun. That only meant I wanted to sleep all day and I tried, oh did I try. I think I “woke up” for good around 1, with a few naps after that. My kidney level came down some more to either 2.13 or 2.18. I can’t remember which one because I was asleep when they told me. Haha My pain is more under control today which is good. I moved down to a 6/7 on the pain scale. Don’t get me wrong, it still hurts a lot but I’m trying to stay on top of the pain meds so that we can keep it dulled a bit. I was supposed to have the hyda scan today but had to cancel due to the fact I can’t take pain med from midnight the night before. Oops. Plan is to keep doing what we are doing I guess until we hit the magical number of the normal range (.5-1.1).

Early morning update: kidney level is 1.9!!! We are getting there folks, we are getting there!

Day 5 UPDATE: Kidney level is down to 1.6 today. Word is, if my number is still trending down AND I’m only using Percocet (which I am) for pain, then I can go home tomorrow. Yay!!!

Day 6 UPDATE: Kidney level is 1.4! I’m going home! Now just to wait on walking papers. I will come on Monday to have labs drawn to make sure my kidney level has still continued to go down into the normal range.

Which brings us to now!  I am home.  Always after I am gone for any period of time there is stuff for me to do when I get home.  Even though my husband is here and gets the mail I have to go through it because he leaves it all piled up for me on the counter.  I have to unpack.  I have to take breaks to love on the boys (our dogs) because they won’t leave mama alone for a little bit.  I say that, but now they are asleep in their beds in the office while I type this.  I just copied my statuses from Facebook over to here to make it easier and to keep track/record of things.

We still have our fundraiser in 30 days!!!  It snuck right up on us for sure.

Until next time…

Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading

I’m a winner….

I had CF clinic today for a regular check up.  Nothing seems to be regular about me anymore when it comes to CF and my depression….but anyway.  My weight is just fine and on the high-end of fine.  I’m not a fan but that doctors like it.  Dang medicines making me gain weight.  I might end up being one of those “fat” CFers.  Well I already feel that way but on to the next subject. Continue reading


Where has my joy gone? Where is the happy-go-lucky Shannon that we are all used to?  Losing my mom seems to have taken my joy away on top of my CF progressing.  I had a good cry fest over our trip to KC over Spring Break.  Maybe it was because I couldn’t see my mom while there as usual.  Maybe it’s because I’m just a wimp and got home sick within days of being in KC.  I like the comfort of home where all of my medical stuff is so I have the things I need.  Packing with all the medical stuff is a pain in rear.  The anxiety of “did I remember everything.”  I forgot one of my inhaled meds this trip, ugh.  We were gone 10 days.  I defiantly could tell a difference not having it but I made it through. Continue reading

Friends and Family

What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind.  Friends and family have been on my heart and mind for a while.  The sicker that I get the more I think about them and what they may be feeling.  Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge  my CF or even remember.  It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading

CF clinic check up

I spent the day at the hospital with 2 different appointments.  First up was my CF clinic check up from my 21 day course of IVs.  My main complaint today was the continued pain in my right side.  My appointment was at 9:30am and I was finished at 12pm.  A lot of people complain about waiting at doctors offices.  I, on the other hand, am used to it.  It is par for the course when you have CF (or any other chronic illness).  I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn.  My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor.  I am now a professional “waiter” by this stage in my life. Continue reading

21 days down…

IV antibiotic update:  Last Thursday (the 1st) I had my regular labs drawn.  I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2.  That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys.  We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9!  It is better to stop it before it gets to bad.  I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range.  I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading