Introductions

Mary-Anne

New member
It is easy to lose hope sometimes...but then I see something really beautiful and know that it is worth fighting...to live or in my case, to try to find something that will help me hear again. I don't believe in accepting fate if there are so many groundbreaking discoveries being made lately. It has been shown by many scientists that tissue etc. can heal/regrow/repair...so I want to see it one day. That's my hope. I know there are f.example deaf people who don't want a cure, but I do.

(What happened to deafdude? Anyone heard of him?)
 

Andra

New member
Hi, new here

Hi, my name is Andra and I live in Colorado. As Barbara has said in a post, this isn't the best place to be for the oxygen-challenged! But it's where I am for now.

This site is a great resource, and I'm looking forward to learning more. I have severe hearing loss and type-2 diabetes as well as low oxygen sats at night, we don't the know the cause of that yet. So I am hopeful that there will be treatments in the future to help with all of our conditions.
 

lalykiss

New member
And I am....

I've been reading posts for awhile & hope this is the way to join in.

I have COPD & am heading to Sarasota next week for stem cell treatment. Please wish me luck & I will report on my results.

Joyce
Laly..new to your forum....6years diagnosed with COPD....stage4...have just made an appointment to go to Sarasota and was wondering how you made out Joyce?????
 

Connie

New member
Howdy Laly,
It is always good to see new people here. I wish you all the best with your upcoming treatment. Please keep us posted on how it goes. Take care of yourself and keep a positive attitude and you'll do great. I look forward to hearing about your successful treatment.
 

barbara

Pioneer Founding member
Hi Lalykiss, Welcome to the forum. When will you be going to Sarasota? I am not familiar with the new doctor at Jouvence if that is where you are headed, so please fill us in when you get back.

Dr. Feinerman is opening a new clinic in Miami I am told to be closer to an international gateway, so I believe he has left Jouvence for good.

I hope you have a safe trip and that you get some improvements with your treatment. We look forward to hearing more from you.
 

lalykiss

New member
Hi Lalykiss, Welcome to the forum. When will you be going to Sarasota? I am not familiar with the new doctor at Jouvence if that is where you are headed, so please fill us in when you get back.

Dr. Feinerman is opening a new clinic in Miami I am told to be closer to an international gateway, so I believe he has left Jouvence for good.

I hope you have a safe trip and that you get some improvements with your treatment. We look forward to hearing more from you.
Thank you all for the warm welcome. I will be getting treatment at Jouvence on the 24th,25th, and 26th of Oct. I am guessing that Jouvence is a good choice since nobody has mentioned otherwise. I imagine that before Dr Feinerman left he imparted his knowlage on to others there...am hoping anyway....LOLOL...if anyone has been treated there, I would love to hear about it....Thanks again....Laly
 

Donna

New member
I'm thinking of getting treated with Dr. Feinerman. It will be good to hear how your treatment goes and if it is the same. Good luck to you.
 

TMills

New member
So how are you feeling now? How many times have you been treated?

In April of 1989 during a field training exercise with my U. S. Army Field Artillery Unit I suddenly was overcome with fatigue. My legs turned to ?rubber? and I finally sank to my knees. Since it was approaching midnight nobody noticed and I was able to recover eventually and walk to the ambulance where they checked my vital signs, gave me a Coca-Cola, and said ?see ya?.

After that episode I was able to function somewhat OK in everything except the two mile run in the Army Physical Fitness Test. Sit-ups, push-ups, not a problem. But running two miles was no longer possible. Even though I had an annual physical each year in November, my Commander suggested a visit to the hospital to get checked out. Check me out they did and eventually the diagnosis came down to COPD. May 1, 1990, I was released from the Army with an inhaler of Proventil and paperwork showing I was 60% disabled with less than ⅓ lung function. I immediately began paperwork for Social Security disability and Veterans Administration assistance. In about six months I received my first SS check and the VA took a little while longer.

In the Spring of 1991, I was finally accepted into the VA system and one of the first orders of business was to upgrade my disability to 100% due to unemployability. So I was ok financially so those worries went away, now let?s concentrate on doing something to get me well. I began driving 68 miles ( one way) to the VA every three months to see the pulmo (He died in 1993 and was not replaced) and every three months to see the regular doctor. Everything rocked along with no changes until September 1999 when I developed Pneumonia and went to the local ER and was immediately admitted. It was there that I learned about Albuterol, Atrovent and Nebulizers. About three months after that I had a recurrence of Pneumonia which took a much longer time to recover.

Still rocking along with Inhalers, Nebulizers, and such, my FEV1 was still running about 30% and I could do quite a bit of work around the place and even did work for the neighbors. Then along came Hurricane Katarina in August of 2005 where the Low Pressure came directly over the house. Although we are a good ways from the coast the storm was still fairly strong when it got here. After it was over, I could not walk 50-60 feet without resting. I finally went to see my local doc in October and his nurse thought I was gonna die after taking a short walk up and back in his hallway. He immediately put me on Oxygen 24/7 and began making arrangements to see a pulmonologist in Tuscaloosa.

At the request of the pulmo I began pulmonary rehab for six weeks, after which I bought my own equipment to save driving that far twice a week. I regret that I don?t have a copy of the first two PFT?s from the new pulmo . But in August of ?06 the FEV1 was 19%, November was 18%, Feb ?07 was 15%, and May was 14%.

It was at this point that the Dr. ordered Hospice Care for me. That was one of the most devastating experiences I had ever had. It was like telling me ?there is no hope - go home and be comfortable.?

My wife has a large dose of skepticism about the ?all-knowing? wisdom of Doctors and she began searching for alternative treatments in spite of the entire medical profession insisting that there was NO HOPE of improvement for people with COPD. Searching the Internet for hours at a time, she found two companies who offered stem cell treatment. This procedure was (and still is) in its infancy and is considered by many to be ?experimental.? Still, we felt we had nothing to lose and asked for more info from both companies.

We received a packet of information about a week after our inquiry to the first company. Still not completely satisfied, we filled out a form on-line for info from the other company. No sooner had she pressed the ?send? button, the phone rang and it was a man who had received the inquiry and was ready to answer any questions we had, etc. We were so impressed by the quick response, and his sincerity and honesty that we chose to call the people he referred us to who had had stem cell treatment for COPD. Again, we were impressed with the information we received and took the next step to speak to the head of the clinic. Things were moving fast and we decided to take the first available appointment at the clinic in Mexico (about 6 weeks later).

The Dr. would not give me permission to fly to California, so we had to drive and arrange for oxygen for the trip. At that time, I was using 2 lpm for sitting and often needed 3 lpm for light activity and walking.

It took 6 days to get from Alabama to San Diego, but when we arrived at the hotel arranged for by the clinic, everything, including a handicap-equipped room, was ready for us. We were treated extremely well during our stay and a representative from the clinic met us and escorted us in their van across the border and to the clinic, which was absolutely pristine in cleanliness and equipment. The staff was very professional, friendly and took special care to see that we were comfortable and explained each step of the process and answered the questions we had.

The trip back to across the border to the states took about an hour but my wife and I did not have to get out of the van, although the driver and clinic rep did. We had our passports ready if necessary but at that time, they did not require them.

After one more night in the hotel, we started home the next day (another 6 day trip back).

We were both exhausted but very glad to be home. The next morning, before we got up, my wife looked at me and said ?LOOK AT YOUR ARM!? I was alarmed and thought something must be very wrong with it. Amazingly, the large dark purple bruises which covered my arms were almost gone! Only 6 days after the stem cell treatment!

We have read many comments by people who have said that improvements resulting from stem cell treatment are a result of the special diet, supplements and just plain ?wishful thinking.? Well, those spots on my arm, to me, were proof that the treatment was already working!

My current status, to me, probably has me almost back to Katrina, 5 days out of 7 I can hang up the hose at about 4:00 p.m. (Quittin? time) until 7:30 the next morning when I hop on the treadmill and listen to the soothing voices of C-span as I take my morning walk. I can shower and shave and, yes, even eat some meals without it. On my last visit to the pulmo three weeks ago, my hospice nurse met us at his office and he turned to her and said, ?Anybody else with his stats would have been in the hospital 2 or three times in the last 2 years?. She nodded in agreement. Even though my FEV1 may only be 15 %, it stopped at 14% and is on it?s way back up. Hang on for the ride!
Hi there, I'm just looking for some clear data on how many copd'ers have been treated, how many times, how long did the change last, etc. Thank you if you can direct me. TMills
 

barbara

Pioneer Founding member
Welcome to the forum!

You might try reading through posts in the Pulmonary section. Unfortunately, there isn't a category for patient experiences, but that might not be a bad idea.

If you have questions, we do have an Ask the Doctor feature almost every month where members can submit questions and the host (it is always someone with stem cell knowledge) will respond. I should be announcing the July Ask the Doctor by the end of this month at which time you can submit a question(s) if you have any. I will post the call for questions in the Ask the Doctor section, but not until the end of the month.

I've had several treatments and you should be able to find my accounts in the pulmonary section. I continue to do well after my last two treatments which I consider the most successful.
 
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