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Everett
01-27-2010, 08:29 PM
I have known for many years that I have emphysema but it wasn't until the first of 2000 that the pulmonologist tagged it as COPD. She seemed to be very concerned and sincere in what she told me. I tried to pinned her down to give me an average expectancy from where I was in the disease and what could be done. She would not give me a guesstimate and said that there was nothing that could be done other than the medicines she had me on. Over the next few years she reiterated that nothing else could be done. I told her if there was any research going on that I might be a candidate for or experiments available please let me know.She said there was stem cell research when I questioned her on it but that was ten years away (thanks to the FDA) and I would be gone by then. She finally said that I had already exceeded the average on servival by a year.
Two years ago Dr. Nasir S. Syed took my case when I was near death in our hospital in Jourdanton,TX. He did a bronchioscopy on me (against my old doctor's advice)--Dr. Syed is an aggressive individual in practice. He took two liters of fluid from my lungs explaining that was the main reason that I did not respond to his treatment on me. He also took cultures and found a viral infection, and micobacterium and MRSA infections that were trying to put me down. Thru testing he determined that I had 31% vital lung function left and put me on a regieme to stablize me. He killed out the virus and micobacterum
infectons and we treat the MRSA to hold it at bay. Two years later I am still at 31% and still in active practice but slowed considerably.
I tell you this so you will know that there is alternate treatment out there. If your doctor tells you that there is nothing that can be done to treat you then I would suggest you get a second opinion. If your doctor is offended or tells you to leave his/her practice so much the better for you. God knows I wish I had found Dr. Syed ten years ago and gotten a second opinion. I know that there has been great advances since 2000 but there is NO REASON to be stuck there in your knowledge and treatment.
God bless.
Everett

Jeannine
01-27-2010, 09:29 PM
Everett

Like you, I have been disappointed by two pulmonary doctors who have been telling me for 5 years now there is nothing they can do other than give me medications or get a transplant. I can't even bother to go there anymore and continue to see my Primary Care doctor who can also prescribe medications.

I didn't give up either. You are lucky to have found a doctor like Dr Syed - they are few and far between. I have had 30% and a bit less now lung function for at least 5 years. I still work and shop and go out to eat. Why? Because I take supplements, keep positive that help is coming any day and I actually feel better today than I did 5 years ago.

I hope you've visited our other forum for people with COPD. We have many good ideas there about how to improve your health.

The forum is located at http://www.copdliving.com

barbara
01-28-2010, 12:55 PM
Everett - I think what you are saying holds true for many diseases, not just COPD. People with MS, ALS, CP, diabetes, heart disease, etc. are told there is nothing else that can be done for them. Some doctors have the gall to play God and even tell patients they only have X number of months or years to live. I am sickened by it.

A person cannot just give into this nonsense if they want to keep on living. It is absolutely necessary to take the bull by the horns and constantly be on the lookout for something that might help or as happened with you, a better doctor that actually took the time to find out that you had problems that were highly treatable that were being ignored or overlooked by your previous physician.

Jeannine started a new forum on www.copdliving.com for patients to post their horror stories on inadequate care. I know I have plenty of stories to post. It's called Share Your Stories. I hope you will add yours.

In the meantime, there seems to be a lot of buzz in the stem cell community about treating COPD and many maverick doctors are right in the heart of the research searching for the cure. For that, I am very grateful to all of them. They are the ones giving us real hope. The same holds true for other diseases as well. It's time for the mainstream doctors to get on board and learn the simple basics about stem cells, instead of clinging to their drug induced therapies. I have certainly been looked upon as someone who knows nothing about my own disease by many of the doctors I have seen. They think I'm a dreamer as well when it comes to stem cell therapy being able to do anything to regenerate and reverse COPD. I can confidently say they are 100% incorrect in their assumptions.