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 !
((((Bette)))) I wish I had wisdom to depart upon you to help give you back your will and determination. I can't imagine how frustrating every day must be for you. I wish for you to gain strength from knowing what a determined and strong person you know you are because you have been. And I will have you in my thoughts sweetie, for better days to come, for health, and for prosperity!
ReplyDeleteLynn
Bette,
ReplyDeleteI am so sorry you are going through a rough patch again. I feel I can truly relate. for my first double lung transplant at 22 I was so positive all the time - my doctors will save me! they won't let me die! ill get lungs and have a real life!!" well that happened, for a year and a half. I was a poster child- no rejections, no infections, perfect. I was doing speeches on organ donation awareness, ads and billboards for the hospital, i got my first great job. Up until about a year and a half in (feb) I got hammered, mild infections x2, acute rejections x2, and then my pfts started slowly decreasing. in June was the big scare, they dropped 30%.they decided I am now in chronic rejection and back on oxygen... now I am trying to get relisted, NYP my hospital, won't list me.due to communication errors on both sides and being late to appointments sometimes- they said they think I am noncompliant. now I have to fight to get back on the list and start looking for other centers and honestly I am not living anymore, I am just surviving. you know when it just gets so hard to be a person? I am always nauseous, body aches, and our of breath. I am 24, I see my friends moving to NYC, running around, fulfilling their dreams, and I am watching woefully at the time pass by on the bench.
I apologize for just gutting myself on your page but I want you to know how important it is you keep posting and creating hope for people like me. you make me hopefully I can get another transplant and that I will be okay one day- hopefully soon. your positivity and strength resonates and tells me that I can do this too. it is not impossible. It has been done.
please don't give up hope. please keep posting for us.