I have a rare for of Sickle Cell Disease (Sickle Beta Thalassemia) and it causes blood clots. 2 yes ago I had a PA (blood clot in my lungs) I am also in heart failure, so my heart doc sent me to a lung doc to make sure things were good. The first app he said my PFT showed signs of emphysema and asthma so when i though my SOB was from my heart, it could have been my lungs. Well my 2nd year app 2013 things went straight south, no meds work so I'm on 2 liters 24 hours a day. I did the walk test and after 8 steps I was at 82 and they sat me down and put me on oxygen right there in the office. I've been on oxygen for almost a year (August) the sad part is now I can be sitting or laying in the bed and for no reason without my oxygen I desaturate to 82. I have a lot of medical problems (heart failure (can not get a transplant because of multi-organ diseases), emphysema, Sickle Cell Disease, Diabetes, Hyperthyroidism and nerve issues from my diabetes)
I do a lot of research on my health problems or anything interesting, I have access to medical research papers from my college as an alumni. I love to talk so if you message me I will write back
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ladylibra37
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Hi and welcome ... A don't think this anything tangible I could offer you .. do have just a tad going on ... I have been doing lot of reading trying to get to grips my self blood disorders is very convoluted business
Welcome ladylibra - you have come to the right place for help, advice and support plus a good dose of humour if you want it. Sorry to hear you have so many health issues and I do feel for you. I am carer for hubby Pete who has sarcoidosis (affecting lungs, heart and airways mostly), COPD (bronchitis) and a chronic back problem that has just been operated on and he now has a spinal cord stimulator fitted (don't ask!)
It will be great to hear from you again and glad you are here. Take care xxxx
Hi nice to meet you and welcome to the site. I can't help with any of your issues but just wanted to say hi. x
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Update for all interested 
PIP when on oxygen 24/7
A sobering experience- and an update to an earlier post
OXYGEN LITRES INCREASED FROM 8 LITRES TO 10 LITRES
Oxygen and100 yard challenge
