Happy CF awareness to me

I have not been feeling good for about 3 or so week, maybe more.  I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant.  We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs.  I made the dreaded call after the 4 days of 40mg of prednisone and no improvement.  I need something more therefore I had to call with all the I have coming up.  I have a busy 5 weeks ahead.  Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself.  Then I have a girls trip to the Gulf Shores the next week.  Then in 5 weeks we have our good friends wedding weekend. Continue reading

CF Facts

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

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CF Awareness Month begins

May is Cystic Fibrosis Awareness month.  This is the month many CF Foundations do their Great Strides fundraising walks.  I am very aware of CF every day obviously.  Now is the time to educate others.  If you have questions about CF or what I have to do every day feel free to comment on this post and I will answer them. Continue reading

Waiting…

When you have a chronic illness waiting is part of life.  Waiting to get better, waiting/holding steady or waiting to die.  Yep, I said it.  It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die.  Maybe you could call it “living to die.”  Whatever it may be, it is life. Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Determination letter received

I received my letter of determination from my lung transplant evaluation….

  • “This letter is in regards to your recent lung transplant evaluation at Barnes-Jewish Hospital in St. Louis, MO.  Based on the results of you evaluation, we feel like you may be a suitable candidate for lung transplant in our program.  However, there are some program requirements that must be met before you can be listed with the United Network of Organ Sharing at our hospital.  Therefore, you have not been listed with the UNOS at this time.  Attached is a letter from your Nurse Coordinator outlining the requirements that must be successfully completed prior to listing for lung transplant.”

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Transplant Evaluation week is coming

We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.   Continue reading