Well, I finally found my way in here. Soooo much is here. Took me a day to get and register my name and password, but no matter...I am here...phew!
It has been awhile since I have donated my two cents, but clink clink, here goes.
I think overall I am better at breathing and I am finally getting out in the world. All seems status quo. I don't feel like I am terminally ill, at least not now, not yet. Even when I was gasping for air with lungs full of fluid at almost two liters each side I knew my care team would come through. And they did. For now, anyway. And so I have been out in the world with my 'puffer' (my portable oxygen buddy) which puffs audibly to those near me with each breath I take. Makes me feel ill. My team tries to poo-poo 'what others think' but I know what they think because I know what I think. I am sick and I look it with the puffer. Without the puffer I don't look sick. I'm not ready to look sick. But I am ready to be out in the world and be a part of it. To live. So I only use it when I feel I really need it, or maybe I don't go out that day.
The visiting nurses help me breathe by helping me drain the fluid with pleurx catheters. They are not perfect, but not bad by way of pain. I just sense them inside my lungs, and sense movement with deep breaths, and sneezes, and deep breaths. And oh yeah, when they drain my lungs. But I don't have to endure the thoracenteses any longer. Boy, they are uncomfortable to say the least. After greater than fifteen of them I had begun to medicate myself before the procedures so I could endure them until the radiologist would no longer perform them because of danger to my health.
So now I carry around inside me these light weight, one-way valve catheters that intermitantly are drained of fluid and I can breathe. Good. And I will probably have them in until I die. But at least I'll be able to breathe.
