Don't ignore warning signs!

Oh huge hugs to you Donna! I'm so sorry you have had so much going on.The good things about the oxygen is it's not as sensitive as one might think. I have been on it for 6 years and havn't blown anyone up yet! When I use my stove I cook like normal but when stick my head in the oven with all the heat I just throw my oxygen on the floor until I check up whatever I'm cooking. I remember people used to slowly move away from me when I was on oxygen. I've even dropped the tank out of my pack onto the concrete other then making people age 10 years it didn't do anything. I've even had 10 bottles in the car to go on a trip in arizona and it would be 120 degrees in the car when I'd go in shopping and I never had any problem.y biggest fear is if I have to had extra o2 with me and my bottle runs out and I switch the tank even though it says the tank is first it was obviously one that they messed! That's happened to me twice now. So you might want to check if the are full before you leave the house.
Just make sure you move as much as possible because like they say use them or lose them. Are they going to put you on a transplant list? Obiously it won't heal on it's own. I wish I would have known about your problems I would have written and called. I think everyone needs a emergency number since we all know in one way or another what you are going through. Just hang tough, I'll be praying for you.
hugs
carol

Donna I'm so sorry you're going thru all this. It sounds awful. Being on a vent for so long is bad enough, but also having a tracheotomy and being hospitalized for so long is more than anyone should have to go thru. I'm sure you had moments of wanting to give up, but I'm so glad you persevered. Hang tough Sweetie. I'm sending you lots of positive energy, prayers, and many hugs. Love ya, Donna

Thank you so much for the prayers and well wishes. I am feeling much better now. I am still in my wheelchair because my legs are still shaky and exerting myself too much takes my breath away. My hubby could not be any more supportive, he cooks, cleans, does laundry and anything else I can't manage. He does encourage me to do what I can. I wouldn't have made it in the hospital without him-he stayed with me day and night and made sure I got my meds on time-to the point where he actually lost his job because he wouldn't leave me. (He has a better job now). I know I am very fortunate to have him.

Carol, they say I may have to have a transplant one day, which scares me half to death. I was told to just let them know when I was ready and we'd talk about it. My family and hubby's family are very supportive and say they will back me up on my decision, whatever it is. What worries me is what if the transplant surgery triggers my MCTD to attack other organs?  As it is now, I am on oxygen (2 liters) 24/7 and my pulmonologist says that's pretty much permanent at this point.

Thanks for reading

Hot tea and gentle hugs to all

Donna