well.. the picc line was taken out and a Port now rests (cattywompus) on the right side of my chest. I have to get it flushed monthly. Our great Medicare system does not cover it, so my cost is $90 .
In anger I researched this and found the needle sells to these companies for $5.60 each.. Makes ya sick doesn't it?
Then with the hemorrhage in my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ??? I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.
I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses. Whew!
In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue. Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..
I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.
I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy. I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen! I need to find that person again !
I need to reclaim me !
Hopefully this blog will be the culmination of all my years attempting to write a book about surviving an organ transplant. I've survived 3 organ transplants & have a pacemaker. Life is GOOD! I am truly BLESSED! Years ago I titled my book "At the end of my rope" for 2 reasons. 1.Physically: Being tethered to oxygen for 20+ years. Hence, the rope. 2. Psychologically: There are times when I literally feel At the end of my rope.
Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts
Tuesday, January 15, 2013
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