Now that I am actually getting to the point of listing it is sinking in how sick I really am. I am sleeping about 12-15 hours a day and even more if I take a nap. You may say how is that possible or wonder why I am sleeping so much. My body is very worn out just from working to breathe and then there is the coughing on top of that. My body is sore from all the coughing I do. Continue reading
I arrived to St. Louis Sunday evening. My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN. I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal. Luckily I have people to rotate, haha. Continue reading
I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense. Continue reading
The first bit of news is that my dad is here to visit for a week…yay!!! He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them. Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha
Today was a good clinic day. First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick. I have been having good days and bad days as per my normal so I was curious how my appointment would go today. Continue reading
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
There is no cure for CF. There has been leaps and bounds in research for medicines to help treat CF. They have made headway in research for a cure but nothing solid. The saying, “the cure is right around the corner!” has been around for many many years. My parents heard it when I was diagnosed 34 years ago and “they” (CFF, docs, etc.) are still saying it today. With that said, we are closer to a cure than we were 34 years ago. I don’t think I will see a cure in my lifetime but who knows, someone may surprise me with that. If I can live my life as an example and do my part for research then that is all that matters for the generations behind me. They are doing research with stem cells in hopes of helping correct the defective CF gene, which is promising. Continue reading
“Playing the Cards Life has Dealt”
My day begins by doing a breathing treatment along with airway clearance. I used the ThAIRapy Vest up until July of 2010. I received the Respritech-Smart Incourage Vest in July of 2010. They are both a device and system for clearing excess mucus from lung airways (bronchi and bronchioles). It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs. These oscillations thin thixotropic airway mucus, facilitating its removal by coughing.
I use a nebulizer to inhale my aerosolized medications. I do breathing treatments four times a day. I like to call it “smoking my pipe” and doing the “shake shake.” Breathing treatments take anywhere from fifteen to thirty minutes, possibly longer depending on what medicines I am inhaling.
Postural drainage and chest percussion (PD & P) also called postural drainage and clapping (PD & C) is another airway clearance technique. We like to call clapping, “beating,” no not in a bad way but that is basically what is happening when doing PD & C. There a few other ways to do airway clearance such as; the Flutter Valve, Accapella, Incentive Spirometer, percussor (“vibrator”), Intrapulmonary Percussive Ventilation (IPV), The Frequencer, breathing and coughing exercises. The goal of airway clearance is to loosen up the secretions in the lungs and make them easier to cough out.