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Thread: Introductions

  1. #1
    Join Date
    May 2007
    Posts
    12,822
    Blog Entries
    5

    Default Introductions

    Time for an update 1/28/10

    I was one of the first people to ever have umbilical cord stem cell therapy for COPD. I had it in 2007. I live in Denver, CO which is not helpful for someone with poor lungs, but I was born here around the time of the dinosaurs. I first noticed symptoms of my disease over 12 years ago, but spent years being misdiagnosed much to the detriment of my future. Any disease that is caught early on has a much better chance of being treated successfully, but that was not in the cards for me. When my pulmo told me that there really was nothing else that he could do, short of a transplant, I decided it was time to get very serious about my disease and find an alternative. One of my fellow Pioneers, Nassin, posted something about a treatment that used stem cells and how it had helped him tremendously. This was on a COPD forum which basically threw him off and told him that he was a con artist. A small group of us decided however, that we wanted to hear more. We named ourselves the Pioneers and we got in touch with Nassin. He was a delight and still is. I owe much to this man. He is now the honorary lifetime President of our Pioneer group that is still active. We e-mail behind the scenes researching and sending each other silly jokes. Humor is a necessary and welcome thing to have in my life. My stem cell mate, Jeannine found a place for us to try this therapy and off the two of us went. Some said we were brave, others thought we were nuts, we just wanted to get well. After treatment, my son decided we needed an outlet to tell others about what we had done and he gave us a forum http://www.stemcellpioneers.com We also wrote a book, "Stem Cell Pioneers" which tells more of the story in detail. The ending of the book can still not be written as we continue our quest for better treatment and a better life for ourselves and others. I help my husband in our roofing business (just paperwork for me) and I also work with Jeannine. We have a business that offers supplements and vitamins geared to specific diseases and also for patients who have had stem cell therapy. You can visit our webstore at http://www.seachangeforlife.com We also were instrumental in finding a researcher to work with us using a product called Stem Cell Advance. He currently is conducting a study of the product which stimulates your own stem cells inside your body which in turn may promote healing.
    I also have a 501c3 non profit bird and animal refuge and rescue. I love ducks and deal mostly with domestic waterfowl, pigeons and cockatiels. I also have 2 horses and a few living turtles. I collect non living turtles and have a collection from all over the world that totals more than 6000. Our house is completely duckorated (ducks from all over too) upstairs and the turtle collection is hibernating in the basement. I also have a beautiful Trumpeter Swan who rules the entire refuge. I used to do all the work myself, but when I got too ill to do it, we had to get a caretaker who helps out a lot. I feel very strongly about my work with these homeless, hapless birds and critters and I have never given up my goal of caring for them even when I could no longer do it personally. I have continued getting stem cell therapy and I am finding I now have more strength to do more of the work, but now I have time constraints with my other work and this forum. I get several hundred e-mails daily and I do like to answer them. I love to birdwatch with my husband and I travel in a small RV that is ideal for that because I can take a large liquid O2 tank with me. After my most recent stem cell therapy, I do not need O2 below 4800 ft. It's like getting out of prison! We also have 4 dogs and we all pile in the RV and take off birdwatching. We have found several good hotel chains that actually encourage pet owners to stay there so that has been a blessing. Sleeping in a small RV with 4 dogs is not ideal. I also have 4 cats, but they are content to stay home. I hope to travel more this coming year now that I feel up to it. I used to travel a lot internationally and have been to well over 50 countries in my lifetime, but now is the time to just take it easy and look for birds here in the U.S. We get hundreds of birds daily at our own refuge, but there is always that urge to go look for others.
    I am an active member of ICMS http://www.safestemcells.org This is a grassroots effort to get a network of doctors across the U.S. who agree to adhere to the ICMS safe stem cell guidelines in place so that patients can get life saving treatment where they live and not have to seek treatment at offshore clinics. I do believe there is a cure for COPD and that a combination of stem cells and supplementation/other therapies will find many of us well in the future.
    Last edited by barbara; 01-28-2010 at 05:02 PM.
    First treatment in 2007. Pioneering ever since.

    Barbara

  2. #2
    Join Date
    May 2007
    Location
    New Hampshire
    Posts
    1,979
    Blog Entries
    1

    Default

    Well then I will post a little about myself.

    My name is Jeannine, I live in Merrimack NH (a town about 12 miles from the Massachusetts border). I am married to a wonderful guy who moderates this forum for us. He goes by the name Technocracy on here.

    I am the mother of four children, no grandkids...yet. I own a tenant screening company where I spend 40 or more hours per week, I spent over 20years as a Technical Writer/Editor and am an avid geneaologist. I have two grey cats named Richard and Lily and an aquarium that the fish somehow manage to survive in for years at a time much to my amazement.

    I love gardening, but I have a black thumb which means our flower boxes and hanging baskets don't have the best looking flowers in the neighborhood.

    Barb and I met for the first time the night before our stem cell treatments and became fast friends. We recently became business partners in our new company that plans to sell customized supplements - some will be great immune boosters, while others are for boosting stem cells also for specific conditions such as COPD, Asthma, Arthritis, Nosebleeds, Restless Leg Syndrome, Parkinson's and Cardiac and more.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  3. #3

    Default Hello

    Hello,

    My name is Tony, and Jeannine is my lovely wife.

    We wound up involved in this because Jeannine was diagnosed with severe COPD several years ago and were determined to do something to improve her health. Stem Cell Therapy looked promising and one thing led to another and here we all are now. Jeannine and Barbara had their treatment together last April.

    The two ladies decided to build these forums to provide information and a virtual support group of sorts to others in a similar situation. While I haven't had Stem Cell Therapy myself, I am able to help out with managing the forums.

    I'm an Administrator/Moderator for these forums.

    If you need assistance with the forums you can post a question in the "Forum Usage 101" forum, "Private Message" me within the forum, or "Email" me from the forum.

    I go by the tag Technocracy on here, as I do on many other forums around the web.
    Last edited by Technocracy; 04-05-2008 at 09:12 PM.

  4. #4

    Default And I, too, shall post

    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!
    Had UCB treatment September 20, 2007.
    Had autologous treatment June 8, 2009.
    Had autologous treatment March 10, 2010.
    Howard

  5. #5

    Default The Rose Is Here

    Hi, My Name Is Rose ? Age 64---I Live In The Beautiful Columbia River Gorge, On The Border Of Wash. And Oregon. I Was Diagnosed With Copd Early 2000, Altho, I Knew I Had It Long Before That. Avoided Telling Dr. Because I Didn?t Want To Hear It---I Am Married To A Wonderful Man, My Rock, I Have 3 Sons, 2 Daughters In Law, One More Soon?and 3 Blood Grandkids, 5 Step, G Kids.

    When I Was First Diagnosed, It Was Because As Housekeeper For The Local Hospital, I Was Cleaning The Large Office Building Behind The Hospital, My 02 Would Drop To 77 While I Was Working, The Girls In The Office Would Hear My Laboured Breathing, Rush Out Check My Puls Ox, Then Teach Me To P L B, Told Me Where To Find Oxygen, How To Use It, And Where I Could Find Their Oximeters, Should I Need To Check It At Night. I Finally Went To The Dr. Was Diagnosed, And Put On Medical Leave, Which Never Ended. I Went Thru Pulmo Rehab At That Time, Which Helped Me Immensely---I Also Ran Across Tony Hammels Live Cell Stem Cell Support Group. I Eventually Ended Up Going To Dr. Diaz In Mexico, And Received Injections Of Live Cells, ( Stem Cells From Sheep Embryo?s) It Really Did Help Me, Altho I Was Never Able To Lose The Nose Hose. I Did This For 3 Years, Should Have Gone For Boosters, But Could Only Make The Trip Once A Year. The Last Time I Went Was In March Of 2007, By June, It Had Quit Working, And I Was Getting Bad, Fast. I Was Scared---then Barb, And Jeannine Came To Tony?s Group And Told Us About Them Having Stem Cells. I Jumped At The Chance, And Signed On Almost Immediately. Had Treatment Oct 4, 2007---I Have Since Noticed Some Good Improvements, But Am Still Tethered To The Nose Hose. I Also Still Have Some Sob But With Fast Recovery---my Arthritis Pain, Is Completely Gone, Since The Treatment, So That Is An Added Plus. I Went Thru Pulmo Rehab Again, It Was During That Time, I Received My Cells. The Therapist That Ran The Rehab, Felt That The Cells Helped Me And That I Had 100% Improvement By The Time Rehab Was Over. When I Started Rehab, My Lungs Sounded Terrible Crackling, Etc.--they Now Sound Clear, The Only Thing They Hear In There, Is Air Moving Around. I Now Enjoy Showers Free From Gasping Afterwards---- I Know That I May Have To Have A Booster, In The Future, And Will Do So, When I Feel The Time Is Right. But I Am Glad I Had Treatment, And Am Grateful To This Forum For Getting Me There. Thanks To Barb, Jeannine, Nassin, And All Those Who Went Before Me.
    ROSE
    HAD UC TREATMENT
    OCT.4, 07
    Autolugous Stem Cells 5/09

  6. #6
    Join Date
    Mar 2008
    Location
    santa monica, calif.
    Posts
    13

    Default hello all

    my name is richard, i am 66 and have been diagnosed 6-7 years ago with copd, severe emphysema, chronic bronchitis and asthma also. i stumbled upon this site sort of accidentally after running a search on stemcell therapy. i was on this other site reading about these two ladies by the name of barbara and jeanine and how they claimed that stemcell treatment {which i knew nothing about} helped them with their copd. what really caught my eye was barbara, seems like from how she described her symptoms, we had the same symptoms. most of the people on this other site didnt seem to believe anything they were saying, they were ready to run them out of town infact. when i found this site i found the same two ladies again, barbara and jeanine, so for the last 8 months i have been reading what they both have to say about their treatment, their reports, updates, etc. as well as most of the other members that have had a treatment that post here, found it all very interesting and i have learned alot about stemcell therapy, etc. i am here because i am thinking of getting the treatment done for myself as i seem to be getting worse every year with the breathing and quality of life. i have noticed that those who have received the treatment have many positive things to say about it, some with health improvements, some more than others. this tells me that it should be my direction also in the near future, if i want to stop the progression of this disease and be able to breath better once again. richard

  7. #7
    Join Date
    Jun 2007
    Location
    mexborough, south yorkshire, uk
    Posts
    146

    Default

    my name is sharon im from yorkshire england, im 46 in a few months, lhave a 29yr old daughter and 3 grandchildren and all 4 of them are my world! 7yrs ago in july l collapsed, l was rushed to hospital, l couldnt speak, my right side was paralysed and my left side was very weak, the last memory l have is of having a seizure, then l was sedated and remained that way for a few weeks, when l was brought round l had a traheotomy in and lcouldnt move at all, they told me l had acute disseminated encephalomyelitis a rare neurological disease. some movement did come back on my left side,its weak, my voice never did come back, but l feel lucky, at least my mind has been unaffected, and l can communicate, l know of people who are much worse!
    l hope to go for stemcell treatment later his year, all being well, this will be the 4th clinic the other 3 didnt work out for various reasons,so l hope this time it does!
    sharon

  8. #8

    Default Hallo

    My name is Margit and I am a caregiver.

    My husband (59) had an accident on June 15, 2007. A trailer ran over his legs, fracturing his tibia and femur. As a consequence, he suffered fat embolism syndrome (the bone marrow went into his lungs and brain). Most of the damage is in his basal ganglia, although his neurologist thinks that there is damage in the spinal cord as well. As of now he is wheelchair-bound. He has some movement from the neck down (can raise his arms somewhat; slight movement in his legs). He has full movement from the neck up (somewhat restricted by spasticity). His cognition is good - some problems with short term memory and some confusion. He has a trach and a feeding tube and is totally dependent on care. Frank is receiving hyperbaric oxygen therapy at present and we have seen small improvements, most notable in spasticity.

    I am looking to stem cell therapy to further help his recovery.

    I have spent a lot of time researching the subject on the internet and it becomes quite complicated the deeper you get into it.

    I am glad I came across this forum - it is so informative; especially getting first hand experience from some of the members here.

    Frank's 2nd round of hyperbaric oxygen treatment will last another 6 weeks. After that our goal is to get him into stem cell therapy.

  9. #9

    Default Belated introduction

    Sorry, I am very very late in introducing myself:

    I am Harv, I have had a lot going on lately, and have been in quite poor health.

    I am one of the few non-COPD people here, I have severe heart disease, beyond anything that I will try to detail here.

    I have had 3 stem cell treatments, all autologous.
    To this point nothing has helped me.

    I have assisted in forum moderation, although less lately in my current condition.

    If anyone with any form of heart disease wants my assistance, or if you have PM'd me and I have not replied, please PM barbara, and she will get an email to me.
    4 Autologous treatments to date.

    Harv

  10. #10

    Smile

    Hi Everyone: My name is Teri and I am a breast cancer survivor who is supportive of alternative health, stem cell research and treatments that help the immune system to heal us from diseases. I first became interested in stem cell treatments for dogs as I am a writer of a few years and have a dog blog.

    Since my breast cancer was determined to be caused by a drug I was taking called Premarin/Prempro by the pathology report -I never would have contracted breast cancer if it wasn't for that medication. This happened in 2001, after 2 deaths in my family -my mother died and 7 months later my brother died of a sudden heart attack-he was only 50 years old. Two months later while I was still mourning the loss of half of my family-I was diagnosed.
    The disease has ruined my life, career, earning potential, my retirement and my joy of life. I have had to start over-and could think of nothing more that I am passionate about which is to stay healthy for a very long time.

    I know that stem cell treatments can work-and one day will be perfected in some country- in the world. I live in Canada on the US border near Buffalo, NY and I have expanded my writing to several blogs. My most fun one -is :
    http://www.PoliticolNews.com where I get my anger out-at drug companies, the FDA and anyone who stands in the way of keeping people alive and healthy. Please join me- write comments, ask questions, respond to each other's posts on my site.

    If you have something you wish to be published on stem cells -please forward the article, comment or anything to me- or post them my comment section of the blog - I will get it and post it.

    If you do post a comment- your email address will not be viewed -just your name and the comment. I approve everything so there is no way that your identity will be revealed unless you want that.
    I have opened up a section for Stem Cell Research and this group as Categories because I expect to devote much to the subject.

    If you are on Twitter : which is very important to get the messages out :
    my Name on Twitter is: Teriss (same as here) . Twitter gets picked up by CNN (our not friends) and all the major networks plus TV, Radio, blogs, news wires, everyone...so it can be very powerful and I recommend that some/or all of us get onto Twitter. It is free to join, doesn't cost anything - you can gain support for this group -or form a group on Twitter:

    Call it : Stem Cell Pioneers or something you like ....and we can all join there also --gaining members -gaining people who are like us-sick and tired.

    There are a few groups I have noticed on Twitter -that involve stem cells but I have not looked into what they are about or what they believe in about stem cell research.

    I know there is a conference coming up in May...but lost the info on that.

    Okay, I am happy to be here and help

    cheers and stay healthy!!

    Teri Salvador
    Author
    Politics: http://PoliticolNews.com
    Dogs: http://Doghealth1.com
    Diets: http://SuperHealthyDiets.com

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