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well I have been really lucky and not have been getting sick I do take the vit d and c Ihave been looking into other sites but I feel as if it were meant to be it would have worked out and if they have their feelings hurt because I didn't trust them with my life too bad I hope you have some good luck are you still in that trial we will make it through thee is a reason why we have been through all this we need to wait and see take care Bev let me know how you are doing also good or bad and if you need to vent I am here
That is too bad. I think it's pretty bad for them to treat you that way though. Not serious? Of course you tried stem cells first. Who wouldn't? I am hoping something happens soon too. Keep me posted on how you're doing. Keep some antibitoics on hand so you take them as soon as you feel somthing coming on. What I do at the first sign of a possible cold is take 2000 mg of Vit c and then take another 2000 mg an hour later. Then I take 1000 mg until the symptoms go away, I've never had to do this for more than 4 hours. My husband does it too and it does work. Also helps to take 5000 iu of Vitamin D each day. Stay well.
Hey girl just a short note to let you know that I sat on the transplant fence too long the team at Gainesville got tired of my indecision and decided I wasn't serious enough I feel good it is just the fact that I have lung function of 10% so one sickness and I am done or at least that is what they are telling me I will be praying twice as hard that something good for lungs comes in soon and we all will be able to feel better Bev
I got the call yesterday I didn't make the cut for the transplant sitting outside watching tv cell phone rings it was Dr f he sounded real positive about helping me and have a tentative date around july one door closed but a window opened since I live here in Florida I will be able to do follow up in his office so I have put the transplant on the back burner I will work to strenghten my legs but it will help either way I have a year to go back to be listed but Dr F said by Dec I will be feeling great shower here I come he als said there is something coming out about casey and Dr Shemesh waiting to hear about that Dr Shemesh was the Dr I went to see in Tampa I met him out in California when I went for treatment just being nosey anyway will keep in touch again thank you Bev
thanks so much for your help it really depends on the cost my husband doesn't work and my dad lives here too so I am the main bread winner and I am on disability but I beleive it will workk out I was given a three month extension my legs aren't strong enough they want me to be able to do leg push equal to 80 percent of my body weight I am at 67 I guess I have some work to do but I feel like a stone was lifted off my shoulders thanks for helping Bev
My email is BEVANNLE@aol.com thank you so much I look forward to hearing from him and the phone number is correct I just don;t understand how my insurence has no problem spending 350 000 for lung surgery and won't let me have the money for stem cells the hospital checked my insurance and boy I have no problem with them or with the many drugs I will have to take thanks again
He didn't call me back so I am bummed will lwt you know if I hear anything thanks for your help I just wish we could sue casey and get some of our money back oh well have a good day I have to speak with the transplant team about my desicion pray that I make the right one
thanks Jeannine I called Dr F office his receptonist was really nice I gave her all my info starting with my trip to mexico with Casey she said she would have the Dr call me back tonight I will be in touch after I talk to him thanks again Bev
I was bugged for a transplant 5 years ago. I could be dead by now if I listened to them ready to carve me up but against stem cells. Go figure.
Anyway - I paid for my treatment over a year ago but then got sick and had to postpone until March. Another member told me Dr F was currently charging about somewhere between 7-10k depending on your condition. You should contact him and find out. Tell him I referred you and it might help you to get a decent price. He is a very caring man so I'm sure he will do his best for you. Good luck
Jeannine I hope you don't mind the post but I am up against the wall again Shands is pushing for the transplant agin I don;t have the money for stem cell but it sounds like you have had some sucess with Dr F would you mind telling me about how much it costs I live here in Florida so it would be easy for me thanks Bev