WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading
Tag Archives: cornhole tournament
3rd times a charm hopefully
/shannonigansToday I had my third set of intercostal blocks in my back for the rib pain. As you know, I have a broken rib that is taking forever to heal due to the fact that I can’t take a break from breathing, coughing or sneezing to give it time to heal. The pain is better than when it first began back in February, 5 and a half months ago so for that I’m glad but there is still a little bit to go to be pain free. Yes, I hope to be pain free. Yes, I’m asking for a lot. Yes, I’m stubborn. hahaha. I have a follow up appointment with the pain clinic August 10th to talk about this set injections hoping to be done with the pain clinic. 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.”
Update on life
I’m on day 11 with 10 days left of a 21 day IV course. My labs (Amikacin levels, creatinine and BUN) have been great! I have steered clear of ibuprofen and done my best to stay hydrated. With all of that said, I am feeling “better.” I put better in quotes because that is a term I use sparingly. It is hard for me to say I’m “better” because I don’t want to jinx myself. I also want people to understand that “better” in my CF vocabulary is more of a “better than I was” and/or “better for now.” I don’t say that in a woe is me or with a grim tone at all. It is to show the reality of my life with CF. I embrace every “feeling better” day and do everything that I can on those days. Continue reading
CF Happens 