Pulmonary Fibrosis

[Judy3]

I was diagnosed with IPF in 1998, in 1999, I had Cancer followed with Chemo.
I feel the chemo slowed down the lung deteriation so therefore, I have servived longer than 80% with this disease. I am now looking at Stem Cell Transplant. I have a few questions. Does anyone know which is better for this disease-the direct placement of cells or the bone marrow extraction?
I am on 4 liters per min of Oxygen 24/7. With any activity my o2 sats easily might be low 70's or hi 60. The lowest I have seen is 64. I have normal lung capicity but my difusion has gone from 47 in 1998 to 30 now. Does anyone know anything about the Dominician Republic for Pulmonary Fibrosis. I talked with one gentleman (Karl) that had SCT but not for fibrosis. Will it work for me? Is very expensive there. Has went up 10,000.00 since karl had his done. I don't want to waste my money but I don't want to die prematurely either. My email is jtalago@aol if anyone cares to email me.

Judy

 

[barbara]

No pat answers yet

Judy - I sympathize with your predicament, but unfortunately stem cell therapy is in its infancy and the race is on to find the best method of infusion and the best cells to use for all different kinds of diseases. I would suggest doing what many of the other Pioneers have done and that is to contact several different clinics and consult with actual stem cell doctors. Ask about successes and failures and about their delivery methods. We are also having a biotheoritician as our special guest host next month and I think your question would be an excellent one to ask him. I am going to include it in the group of questions I send to him and we can get his views on the subject. All of the information you will gather may seem overwhelming at first, but it does get better as you learn more about stem cell therapy. I learned the hard way, but my enthusiasm for stem cells as a viable treatment for many incurable diseases has not been reduced, only my bank account was damaged and for that I feel lucky as I did become very ill after treatment. Also, be wary of spokespeople for companies that seem to glorify the treatment and try to tell you miraculous stories and nothing else. Some people see more improvement than others and there are no guarantees. There has been so much progress in a little over a year since I got my treatment however, that I am very encouraged. There is hope. Do not give up. You sound like someone who won't. Keep us informed and maybe someone else will post that has more information that directly relates to your disease.