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Our Story

Hello all, I'm Shannon!  I have Cystic Fibrosis.  I was diagnosed with CF at 5 months old with a positive sweat test.  I was evaluated for a double lung transplant at Barnes Jewish Hospital in St. Louis, MO.  I am currently followed by them to stay up to date with guidelines.  I am trying to hold my own as much as possible.  We started this COTA page for our fundraising efforts to help with all the relocation expenses, medical expenses, keeping the TN house a float as well.  There's a lot that goes into it.  So the more money raised the better.

We will be relocating to St. Louis for at least 3 months after transplant for rehab.  Doing so, we have to maintain our house in TN as well as an apartment in St. Louis, to include living expenses while in St. Louis. So we need all the help we can get.

Thank you for your love and support.  It is greatly appreciated!



Clinic Update

Today was CF clinic day.  It was my normal 3 month check up that turned into a hospital/IV follow up.  It seems to happen that way most of the time.  I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one Continue Reading »

Home sweet home!

I got home around noon today from the hospital which is record time for a release.  It helped that I didn’t have to wait for my IV antibiotics to be delivered to me at the hospital.  They delivered them to the house which is nice.  Let me recap Continue Reading »

Going inpatient

I have left a message with my nurse to say I would like to be admitted tomorrow.  Not that I would "like" to because who are we kidding, the hospital is not a fun place.  I have slept most of the weekend and am not much better.  Not that I really Continue Reading »

Still not feeling well

Today I had a check up since I'm not feeling better after 6 days of IV antibiotics.  My lung function was down again to .88L/31% FEV1.  I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then Continue Reading »

IV's it is!

I tried the oral antibiotics route and it didn't help.  I've been on them for about a week and a half.  All they have done is make for a yucky tummy.  With that said, I called my nurse for IV antibiotics.  I haven't felt good for too long. Continue Reading »

Threw in the towel, Antibiotics it is

Hey all!  It’s been a little while since I have updated.  I have not been feeling well for a few weeks.  I have been coughing more, especially at night.  I went for lung functions and to give a sputum sample today.  My lung function is down Continue Reading »

Just us

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Pre-Transplant Clinic May 2019

Hello all!  I saw pre-transplant clinic in May.  It was a good check up.  My lung functions are holding steady at 35%.  I did the usual work up of blood work, 6 min walk, chest x-ray,lung functions, liver ultrasound, and saw the doctor.  The Continue Reading »