Hello everyone I'm new to the site so this is me...

[ladylibra37]

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

[Hidden]

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

The not tried blood transfusions to help

[ladylibra37 in reply to Hidden]

I've had several blood transfusions, usually when I have a pain crisis.

[Hidden in reply to ladylibra37]

How long do benerfits usaly last

[sassy59]

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

[Hidden]

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