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
I received an article via email titled “Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.” The first line of the article is the following, “Cystic Fibrosis (CF) is a life shortening disease, however prognosis has improved and the adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden. They administered 3 standardized questionnaires to 67 CF patients aged 18-30 years; Medication Adherence Scale, Major Depression Inventory and CF Questionnaire. One third of the participants reported systems of depression. Health-related quality of life scores were especially low on vitality and treatment burden and symptoms of depression were associated with low health-related quality of life. High depression symptoms scores were associated with low adherence. All of that mumbo jumbo means that depression and CF go hand in hand. The higher the rate of depression, the lower rate of adherence of treatments and meds, etc. and vice versa. Continue reading
/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
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
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.”
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