I Remember When

I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading

Life update

I saw my surgeon for my follow-up from gallbladder surgery and everything is good.  All healed up!  Not having the pain from having a bad gallbladder is great!  I’ve known it needed to come out for a while now, I just needed it to finally act up.  I told the surgeon the only thing left to take out is my appendix and these crappy lungs…hahaha. Continue reading

Gallbladder is out!

Yesterday was surgery day for my gallbladder removal.  My gallbladder has been bothering me for a few months if not longer.  I had lots of gallstones per the ultrasound.  On the ultrasound, it was also constricted like it does when you are eating when it wasn’t supposed to be because I hadn’t eaten for at least 8 hours.  Then was the hyda scan which  is where they inject a nuclear substance through IV and wait for it to get into your system so they can see the things they need to see.  The hyda scan took longer than it should have because my gallbladder was playing hide and seek, it wasn’t showing up within the hour like it should have.  I had to go back for more scans/pictures an hour later and if it hadn’t shown up so slightly at that point I would have had to wait 3 more hours!  Thankfully my gallbladder showed up ever so slightly but good enough to show that it wasn’t cooperating.  When I saw the surgeon 2 days later there was no debate, it was coming out.   Continue reading

Fundraiser Fun

We had a fantastic fundraiser yesterday.  We played singo which is like bingo with song titles.  You listen to 30 seconds-1 minute of a song and if you have that song on your singo  card you mark it off.  You get a singo with 5 in a row like bingo.  Winners received gift cards to the restaurant where the event was held.  Next up was trivia.  That was a lot of fun as well.  The winners also won gift cards which were donated.  We also had 16 raffle baskets, one of which was custom made cornhole boards.  I’d say you had lot of fun things to do yesterday.

We had a great turn out showing lots of love and support.  It was greatly appreciated.  I had set a goal for myself of $1000.  Well that was surpassed twice.  We raised just over  $3000!!!

The money will go to the specific savings account we have set up for the lung fund to help cover medical costs now and for the future transplant costs.

We are truly humbled by the outpouring of love and support shown to us.  Thank you so very much for every donation.

Until next time…

Update and depression talk

I guess I should update you all since my stay in “lock up” (aka the hospital).  My creatinine (kidney level) is finally back down in normal range.  It was .91 when I last had my blood drawn at CF clinic last Thursday.  Yay for that.  Even more yay, I can start to take ibuprofen, in moderation, for my aches and pains since Tylenol does nothing for me. Continue reading

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…