Genetic connection

[Everett]

Dr. Nasir Syed is testing me on genetics to see if there is a gene lacking in my make-up. He said I am the first in Texas to be tested so it will be interesting to see what this turns up. The alpha-1 gene mapping results will take a couple of weeks and the lab will contact one of us with results. If it turns out that this is a genetic connection then he can treat it. This will stop or slow down the progression of the disease as I undestand it. He also has found a group that will possibly do a lung transplant on me if all of my other organs are healthy. My age is not a limit. I asked him about getting Dr. F to do an analagous stem cell transplant and if he had any reservations to me having it done. His reply was if it works go for it. Not many M.D.s like him running around.
Damn I love it on the edge of things

[Jeannine]

This doctor of yours is pretty open minded. Lucky you!

You're quite the adventurous guy and I think it's fabulous.

I haven't done any updayes on my treatment yet because I am still getting over this cold. I believe I'm at the tail end of it now and am hoping to see if I have improvements in a few weeks. I suppose the fact that I have been able to go to work each day even with a cold is a good sign that something is working for me.

[carmen868]

Hi Everett. You say they're mapping the alpha 1 gene? I have AAT deficiency too, reason for my COPD. I'd like to know how that turns out. When you said lung transplant, this is from stem cells? I'm very curious as to how it will work. Does this mean big breakthrough?

Thanks.

[Everett]

This is my understanding that is what Dr Syed did yesterday with the test he is having run on me. It is for gene mapping. The lung transplant is something completely different from stem cells. I was told by my former MSD that there was nothing else she could do for me but Dr. Syed said that prior to me hitting 70 he could have gotten me in for one if all my other organs were normal. He knows of a clinic that possibly will ignore the age thing . He doesn't have any problem with me going to Dr F to see about asct. That would work for me since they are on the east coast.

[Everett]

At my last visit with Dr. Syed he said that the results on the mapping was negative. I guess that I am going to have to accept the fact that my present condition was cause from breathing the dust in cattle pens while working calves and "maybe" from the cigarettes that I smoked over frorty six years too.
He is looking forward to the treatment I am to recieve at Dr. Feinerman's in August. We ae to check in on the 18 th and do treatment on the 19th and 20th. I for one am excited. The drive from Poteet Texas to Sarasota Florida is a tough haul tho. It's a will do thing for sure.

[Jeannine]

Everett

I firmly believe that Alpha1 isn't the only genes responsible for some of us getting COPD. I believe some of us have a so far undentified genetic makeup that causes 10% - 20% of smokers to develop COPD. IF cigarettes were the only cause then more smokers would be developing COPD.

In my family for example - I have 5 siblings.
Two currently smoke - one has COPD the other has no lung problems. Both have smoked at least 30 years.
one is a former smoker (smoked for 25 years)- Normal lung function
one smokes an occasional cigar - Normal lung function
one never smoked - Asthma and allergies

My grandmother died of emphysema and her father also had it plus he had asthma and allergies. How can it not be genetics?

I wish they'd start looking at other possible genetic causes. Look at cystic fibrosis - it's genetic too.