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  • Sorry to hear Bill. We are too bad fro one trial and not bad enough for another. They put you through hell and fro what? I have heard from at least 5 other people who also didn't qualify. Seems the only thing left is a transplant but we're not bad enough for that. I don't qualify for the other trial either. They told me my diffusion is too low yet I can go without oxygen for two hours and still be at 95. Go figure. Do yourself one favor with your PAH - Take 300 mg of COQ10 every day if you haven't already, get off the albuterol and use Xoponex - it's easier on the heart. If you can afford it got see Dr F. He won't sure you completely but he will improve your condition.
    Hi,no i am not related,i did not get to go to the trails,my lungs are not bad enough the dr. Said,i said to him ,what to you have to be to go on the trails,half dead
    his responce was =almost dead-=i wanted to throw up
    right there . I felt bitter ,2 trails and failed twice.
    Well i have to go on,so he did say i might be on the list
    for the lung value in 6 weeks. My fev 1 is 25,what a test that is eh? Over 1 hour. Hope we can find some thing that can help other people,in the future. Maybe in our time. Bless bill
    Hi Bill
    I was disqualified from the trial because my diffusion was too low. IT is too low for the coils also. Not sure what I will do next but one thing I can tell you is my PAH went away after my treatment with Dr F. I was tested two weeks ago. I had mild PAH two years ago and now it is gone.

    Good luck at Deaconess. I have to ask - are you related to Jack Pazzanese? He is related to a Bill Cronin.
    Hi,i am going to the deaconess this coming monday for the coils trail. On july 18th i see a dr. About my pah.its 53 now.going to the lahey in peabody mass.drs. Name is sarwar,have heard about him so much,i was very lucky to get appointment... Stay well and i will get back to you. Bless you. Bill.
    What do you think of my suggestion of regular treatments every month or two or three?
    Bob Hall
    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
    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 just wanted to know whether you have been to Vegas where Barbara goes or whether there is a clinic closer to the East Coast. I live in Florida. I just told Barbara that I am ready to send a deposit and my medical records to get started on a trip to Vegas. Thanks for all you and Barbara do to give hope to a lot of people.
    Bob Hall
    Hi Danny - I saw quite a bit of improvement about 3-5 weeks after treatment. My FEV1 jumped almost 15 points, my peak flow did as well. I felt movement in parts of my lung and then it slowly vanished so that by 8 weeks after treatment I was back where I started. Nothing gained. Daxas has provided more improvements than the treatment did.
    Hi Jeannie,
    In your signature, you showed you were treated with bone marrow and adipose derived stem cells last June 16, 2010. How was the treatment ? any good results?
    I myself had treatment in Tijuana, Mex with bone marrow, placenta and UC. I had reported that I had about 5 % improvement in my condition during the first month. Somehow I got sick several times and the improvement I think was lost and I am probably on the same condition as before the treatment.
    Hi Jeannine,

    My name is Araya. I've learnt that you had a treatment with Dr. Burton F.
    I have a 6 months old nephew who has visual impairment and our family is very much interested in stemcell treatment from Dr. F's clinic. I'd be very much appreciated if you could share with me your story about the treatment, the doctors' expertise, and your post condition. Thank you.
    HA HA - We have central air in our house, It gets pretty hot here in the summer and mid 90s isn't that unusual. Summer days are always above 80 degrees. I have seen 100 degrees + every summer as long as I can remember. We just don't get more than a few days each summer. It's beautiful here in summer. The only months that are lousy are from mid-November through mid-March otherwise it's pretty bearable. And I hate cold weather.
    I know that if what I am hearing on TV you guys must be cooking. You don't even have air conditoners up ther do you? I didn't know that it ever got up to 100 degrees that far north. Take care
    Luckily, the nasty weather wasn't as bad here as they predicted. I think I should be a weatherman. What other job can you have where you can be wrong half the time and still keep your job? LOL
    You guys better watch the weather-- They are talking some nasty stuff for the NE. That is what we usually have down here.
    Stay safe,

    I was real weak after my 16 day hospital stay last Feb for ulcerative colitis. I left the hospital with my legs so weak I couldn't walk alone. To strengthen them, I used to stand at my kitchen counter and read a book for 20-30 minutes each day and also lean on my bed and stand on my tiptoes for 5 seconds at a time and would do this 20 times each morning. After two weeks I could climb stairs again. The key is to stand as often as possible even if you lean on the kitchen counter. I still read magazines every day while I drink a cup of tea while leaning on my kitchen counter. It will strengthen your legs without too much effort
    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
    I get a kick out of the exericse they want us to be able to do before they will give us a transplant. If I could walk a mile I wouldn't need a transplant. I am the only breadwinner right now too. My husband lost his job 18 months ago and I still work full time because I have no choice. Good luck with everything and keep in touch.
    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
    I think the same way about transplants. They have no problem forking over thens of thousands for transplants.

    If you want my advice I would go for the treatment with Dr F and if you don't have enough improvements after 6 months, then sign up for the transplant. That's what I plan to do because I can't wait much longer either for a cure. MY FEV1 is around 25% and I would rather live a normal life for a couple of years than to live another 5 or more feeling like this.
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