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
Tag Archives: life with cf
CF Clinic day
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading
A bunch of jumbled thoughts
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’m Fine.
Depression; It’s real
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
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.”
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
If I didn’t have CF
What if I didn’t have CF? That is one open-ended question. This topic for this post has been on my mind for a while now. I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.
The “what if I didn’t have CF” question/statement goes way back to childhood. I think I am just going to start to list things and elaborate when needed. Continue reading
CF Happens 