New fundraising link

Hello all!  I have been in a slump when thinking about transplant stuff.  It is just so overwhelming.  I feel like when I was writing “my book”/my life story (link at the top of the blog page for all chapters) I would write like crazy and then take time away from it for awhile then go back to it.  That’s how I feel about thinking/doing things for transplant because it is so overwhelming.  There are so many logistics that go into it that it makes my head spin.  Fundraising is just one part of the puzzle and it’s a big one.  Funds raised will help with housing in St. Louis after transplant, house bills in TN while away in St. Louis, food, parking, hotels, hospital bills, medicine copays and much more.  There are things that will pop up that we didn’t even think of I’m sure and we just want to be prepared as much as possible.  We will have to be dealing with me, my health and recovery and don’t want to worry about the financial part of things.  I just want to thank you for all of your support and love over the years. Continue reading

Pre transplant check up

I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.

The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha

Until next time…

On a new journey…

A few months ago I shared about the new CF drug Symdeko (Symdeko post).  After much tossing around of the idea of taking the new drug I finally decided to give it a try.  I started the drug 3 days ago.  It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb.   Continue reading

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…