Coughing hazards

Interesting title?  Let me explain.  I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking.  Along comes a coughing fit.  A doosey one where I see stars and shake.  Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face.  Yes, you read that right.  Pictures below… Continue reading

Transplant Talk: Sinking in

Now that I am actually getting to the point of listing it is sinking in how sick I really am.  I am sleeping about 12-15 hours a day and even more if I take a nap.  You may say how is that possible or wonder why I am sleeping so much.  My body is very worn out just from working to breathe and then there is the coughing on top of that.  My body is sore from all the coughing I do. Continue reading

(Pre) Transplant Appointments

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. 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…

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

MRI results & Transplant Clinic

I had an MRI on December 22nd and didn’t hear anything until after the holidays.  The results are that I have a minimal C6-C7 impingement (pinched nerve) in my neck.  There was nothing of significance in my upper back to give reason for my lung/chest pain on the MRI.  The lung/chest pain is most likely from pulled muscles from coughing so much and so forcefully.  I am awaiting a referral to a neurosurgeon for the pinched nerve in my neck.  I have had the pain in my neck along with headaches for about 6 months.  I’m happy to have an answer about my neck but bummed that we really don’t have any concrete answer about my lung/chest pain.  The lung/chest pain is slightly better, especially the fractured rib site, than it was when it began.  Now it seems that the rest of my muscles in my chest are sore from compensating for the pain which is no fun.  I see a neurosurgeon on a February 2nd about the pinched nerve. More on that later.
Continue reading

A bunch of jumbled thoughts

I hope I can write this and let it make sense because it is all jumbled in my head….  It feels like a game of ping pong with my thoughts in my head.  Hmmmm let me divide it into topics….hahahaha  Continue reading