Note: The comments and suggestions in this interview do not reflect the opinions of About.com's Medical Review Board whose members do not recommend stem cell therapy. The interviewee's comments are not meant to be taken as medical advice and should not replace the recommendations of your doctor.
When were you first diagnosed with COPD?
I got the official diagnosis of COPD in 2006, but was misdiagnosed for several years. I was told I had severe allergies, then asthma, hypersensitivity pneumonitis and finally COPD. At the time of my diagnosis, I was in pretty bad shape. My first symptoms appeared at least 10 years earlier, yet I remained undiagnosed.
At the time of diagnosis, what, and how bad were, your symptoms?
My biggest problem was that I was constantly getting sick with one respiratory ailment or another. I had pneumonia at least three times and spent a great deal of my life on the couch. I live in Colorado, which also means I fight the high altitude. After a plane trip left me very ill with pneumonia, I ended up with an enlarged heart and very little will to do anything. I felt like giving up. I was previously a very active person and being relegated to a sedentary lifestyle was very depressing. In 2006, I had to start using supplemental oxygen 24/7 which, to me, was a life altering event. I had to give up many things that I had previously enjoyed.
What treatment options have you tried for COPD?
Prior to stem cell therapy, I was given various medications and inhalers and was on steroids for well over a year and a half. I ended up gaining 30 pounds which only added to my misery. It was not until I finally got a knowledgeable pulmonologist that I was prescribed respiratory therapy which I think is essential for anyone with COPD. I also am a vegetarian and eat foods that are nutritional and those that tend to help reduce inflammation. I thought I was doing all the right things, but I continued to get seriously ill several times per year. I did eliminate the suspected cause of my hypersensitivity pneumonitis, but it did not relieve symptoms such as shortness of breath or low oxygen saturation levels without supplemental oxygen.
What made you finally decide to try stem cell treatment?
Despair. I also knew that COPD was a progressive illness and that reversal was not possible. Without some kind of miracle, my only hope was that of slowing the progression of the disease, if I was lucky. Once I learned about stem cell therapy, I knew it was something I had to try because it does hold the promise for regeneration of lung tissue.
When did you have your first treatment and where was the procedure performed?
The first treatment I had was in April of 2007. It was supposed to be an umbilical cord stem cell treatment. I knew little or nothing about stem cell treatments when I got my first one. The procedure was done in Mexico. This was before most people had ever even heard of stem cell therapy. I went with another lady that I had met online. When we returned home, we were totally lost. There was no one to talk to about what we had done. The company we went to was no help. My son gave us the Stem Cell Pioneers Forum and we went about learning everything we possibly could about stem cells and treatment. Today our forum is the largest patient moderated forum for stem cell discussion and support for those that have had treatment or are thinking of having stem cell treatment for any disease. We do not want anyone to make the same mistake that we did the first time. We advocate safe stem cell therapy and are quick to expose companies that are not giving safe treatments. I have had several autologous stem cell treatments since my first disaster treatment in Mexico (both my friend and I became quite ill after that first treatment). I have learned so much since the first time and now only deal with trusted doctors that I know. I have had autologous treatment in California, Florida and Mexico.
Did the legality issues surrounding stem cell therapy in the United States influence your decision to try it? Why or Why not?
I am not sure what you mean by legality issues because autologous stem cell therapy without manipulation is legal in the United States. Also, there are many countries in which all types of stem cell therapies are legal. The problem in the U.S. is that without manipulation, most treatments are simply not clinically relevant. In my opinion, this needs to be changed.
At present, I am a patient advocate for the International Cell Medicine Society (ICMS). This grassroots effort was started by a doctor who has decided to challenge the FDA's ruling that our own stem cells are prescription drugs if they are enhanced in any way. This doctor asked if I would be interested in getting the word out since I am co-founder of the Stem Cell Pioneers Forum and was already an advocate for stem cell treatment. The issue is complicated, but ICMS has developed guidelines for safe stem cell treatments. Doctors who join ICMS must agree to adhere to these strict guidelines for safe stem cell treatment for their patients who want treatment using their own stem cells. There is also a patient registry that doctors must agree to. Patients can be referred by their own doctors to ICMS member doctors for stem cell therapy if this is the desired treatment. ICMS advocates giving the patient and doctor the decision making ability rather than a regulatory agency. This has been working for years with fertility clinics. They have their own guidelines and doctors must work within them. There should be no double standard for stem cell clinics doing the same.