Introduce yourself

barbara

Pioneer Founding member
UK Info

Anney - Did you post somewhere that there might be some trials starting up in the UK? I thought I saw it and now I can't find it. Any info you might have, please post it unless you already did and my Computer 101 skills are failing me again.
 

anney_uk

New member
anney_uk

Barbara, it's on the other thread. Little things add up. Not a lot of information but at least it shows the interest that is being shown in UK.
 

lraynak

Pioneer Founding member
Nelson

Larry from California wishing you a timely recovery. There will be times when you are in fact SOB as I was as well. Those situations will subside as they have for me. Keep in touch and let us know your experience.You also have a fellow stem cell alum Nassin Yarhi also in Florida . You might compare notes with him. He's very helpful.
 

barbara

Pioneer Founding member
New members feel free to ask questions

Welcome to the new members today. Please feel free to comment or ask questions or even tell us what your own story is and why you are interested in stem cell therapy. The forum is here so that we can all learn about stem cell therapy. Of course you can register without commenting, but do not think you need to be silent because you are a new member. Thanks!!!
 

barbara

Pioneer Founding member
Thank you for your kind words Nelson. Larry has also had therapy and has helped a lot on this forum. I am hoping he will soon be posting an update. I know everyone is rooting for you Nelson. I do not know of any of the other Pioneers who had treatment for more than COPD, so it will be interesting to see how you do since you had 3 conditions treated. You deserve another week of doing nothing since you drove all the way from Florida to get treatment. That in itself says volumes about your determination. Having a good mindset will definitely come in handy in the upcoming months.
 

felicia

New member
amanda has done stem cells with dr. rader

My journey began on June 19, 1998, when my daughter Amanda was born. The doctors told me that Amanda had Cerebral Palsy. They said that she was very severe and had very extensive brain damage. Her brain scan showed that she had virtually no cortex left on the SPECT scan showed a devastating loss of the cortex. It also appeared that a large segment of the brain was missing due to brain edema. Like any parent I was in shock. I did not know what to do or where to turn.

As the days and months passed by we noticed she was not doing anything that she should be doing developmentally for the age of 9 months. Her head and spine arched back and always stayed on the left side with her head, and her eyes were always rolled up.

At the age of 9 months Amanda started doing Hyperbaric Oxygen. We noticed that her spascity was reduced, she was sleeping better, her nystagma was less and her vision improved. The next brain scan showed that there was more blood flow to her brain. We did Hyperbaric Oxygen for 1 year.

Amanda had turned 2 years old and she was better since the Hyperbaric Oxygen. She still had her head arched back but it was less. Her eyes would roll up less and her spasticity was less also. However, she was still not able to walk, talk, smile, or suck her bottle or look at us.

We heard about Fetal Stem Cell Therapy and I was very excited. I gave it a lot of thought about whether I should take Amanda or not, and I decided I would give it a try since I had nothing to loose because Amanda was already brain damaged enough. I followed my instinct and my heart.

We started to do Stem Cell Therapy when Amanda was 2 years old. Today Amanda is 9 years old and here are the changes we saw in the last 7 years with doing Fetal Stem Cells.
Amanda was not able to suck her bottle at the age of 2 but she now is able to suck her bottle and her sucking coordination came back.
Her eyes are more alive, alert and expressive. She now turns her head and eyes to look at me when I call her but before there was no response. Her hands are now more opened up too. The best thing that I love now is she is able to give me a huge smile. For me that smile means one million words! She is a lot more active and pays attention to what is going on around her and she understands a lot more too.
Amanda is now learning how to crawl, which is so amazing! She is able to stand up by herself for a few seconds. She wants to achieve it so badly that she puts all her energy into trying. We have done EEG?S and it has shown that her readings are much better. She is able to express herself with a sad face and she babbles more. I noticed she understand a lot more now they are periods that she does not eat breakfast and when I tell her if you eat daddy will play with you, within 10 minutes she is done her breakfast. At night she will call me and let me know she wants to drink, and goes back to sleep after her drinking this is a big step for her to call me, she is understanding more and more. Her brain scan showed an increase in the size of the cortex too. And now the best for last she mumbles ?MAMA? which is the best gift she could give me. We have gone for more stem cells and Amanda is improving a lot on her babbling more new sounds are coming out, she could go on for hours now and babble this is new for us. My husband also noticed when we ignore her now she will just look and say out loud HEY, she also is learning how to sit on her own when doing therapy, the therapist holds only her hands and the rest Amanda tries to balance herself. The new thing Amanda has just done is learned how to roll over, just 3 weeks ago I put Amanda on my bed with pillows on each side, I was gone for just 1 minute and I hear a boom, it was Amanda that rolled off my bed and fell on the floor. My god thank god she did not get hurt she landed on her belly. Now I know that Amanda is able to do a full roll over before 3 weeks ago she was not able, she would only go halfway and get stuck, I guess now she figured it out, and I put her on the floor from now on. Now she will look straight at me and start to talk to me in her babbles language. It feels good to have some sounds in the house now. I thank god everyday for giving her a chance to doing Fetal Stem Cells it has changed my life amazing and full of happiness in my heart.

There is a video of Ricci Kilgore she had an accident and left her with a spinal cord injury ever since stem cells with Dr. Rader she is able to walk now. Below is the video just click on the link.

http://www.youtube.com/watch?v=kbozmOL1kSY

If you need any help please email me.

Thank you

Felicia Gallo
email: felicia_gallo@yahoo.com
 

lraynak

Pioneer Founding member
Morning inspiration

Reading the stories of Amanda as told by her mother was a boost to my resolve to get better. The youtube account of Ricci Kilgore, stem cell patient walking again after being paralized an inspiration for all of us on this site to broadcast the remarkable advance stem cells have against hearing no hope, incurable, never walk again.
 

stemcellpioneers

Administrator
Staff member
Felicia,
I watched the video. Extemely inspirational!! I am a little concerned cause they are embryonic cells. I have heard things like tumors that can develop with those cells. I am not a doctor, but I have heard that from several people. I have heard that your own and umbilical cells are the best all around. I am glad to hear that you had positive success with these cells. How often do you get treatments? How many cells? Are you expecting to do more?
Thanks,
Darin
 

Nancy

New member
Introduce Yourself

Hello-
My name is Nancy and I live in New Hampshire. I'm 57 years old. I have a 37 year old son and a 35 year old daughter. I very much enjoy reading histories -especially British, gardening, knitting, anything related to water, movies, good food and good wine. I've been in the restaurant business for 19 years.
I was diagnosed with severe emphysema in October of 2006 following a lung infection. I'm presently on four kinds of medications. I'm not on oxygen as yet, but I know that some time in the pretty near future it will begin to become part of my life.

I was so upset and depressed when I initially learned of my diagnosis. I thought the breathlessness would go away when I quit smoking (I quit on November 1 of 2005 after 40 years of pathetic addiction). I never even considered the possibility of COPD. Like most smokers, I was focused on and frightened of cancer.

Within a couple of months it became more and more obvious to me that there is presently no real conventional treatment for this disease. It feels as though I'm being "babysat" by my doctor rather than treated.

That's why I'm so glad and heartened when I stumbled upon this site. I've been becoming more and more interested in stem cell treatment and this site is perfect for information, fellowship ansd support.

I do admire you pioneers who have bravely opted for treatment. I'd like to thank you for setting up this site to give hope and information to other sufferers. I'm certainly looking forward to reading your book. Thanks again.
 

lraynak

Pioneer Founding member
You're not alone.

Nancy,
Welcome to the site where we believe COPD is not a death sentence. We believe stem cell therapy can stop the progression of this disease and even though the medical profession considers it voo doo medicine, we not only choose to believe there is something we can do about it and did do something about it. I'm barely five weeks since my treatment and already there are signs and measurements showing inprovement. I hade been on oxygen for four years and my goal is to not be required to use it. Breathe normally with no shortness of breath. I'm going to do it.
If you need a lift for your spirits, read some of the other stories on this site for a bit of inspiration. You're not alone, there is 25 million of us with the same condition. I'll be happy to discuss this disease with you anytime and there are others on this site as well.
 

barbara

Pioneer Founding member
Thank you Nancy

What a nice message you gave us! I am wondering if there is Life After Book. I have been working on this now for what seems forever, staying up until 1 AM many nights. I know Jeannine has been too. It is almost ready. If it weren't for my pathetic computer skills, it might have been done sooner. I sincerely hope it may inspire others to not be satisfied with the present course of traditional treatment for COPD and other diseases that are now treatable with stem cell therapy. I truly believe in it and so do the other Pioneers or we wouldn't be doing what we are doing. I am very excited about my extra boost of breathing ability that came on last night and is still going on today. I spent last summer unable to do much of anything. I am a good patient. I did everything I was told and yet I continued to decline. This summer I am out to see my ducks and horses everyday, chasing raccoons, running errands, getting the mail, shopping, taking care of my elderly mother. filling the birdbath, hauling produce from the store and a number of other things that I had to just sit and watch others do for me last year. I feel like I won the health lotto! I still suffer from NOVAC which makes it impossible for me to vacuum and do housework, but I am able to do almost everything else I used to do and all with no SOB. Nassin started all this for the Pioneers and we are passing on all we know for others. Thank you again Nassin. Glad to have you with us Nancy and all the other new people too. Barb
 

Jeannine

Pioneer Founding member
HI Nancy

I live in New Hampshire too but in So NH. I see you live up north! I'm 55 and like you smoked for 40 years and didn't think about COPD really. I quit smoking in October 2005 and didn't notice much improvement which was pretty disappointing considering all the hype on TV about quitting smoking.

I was taking 4 medications and attended pulmo rehab (which I recommend if you haven't tried it) when I saw Nassin's story in Feb 2007 and decided to look into stem cells as a possible cure for my COPD. After spending almost every possible waking moment learning as much as possible about stem cells, I decided to give it a try. All I had to lose was money. My doctors were willing to sign me up for LVRS and transplants but I preferred to try a non-surgical approach first. I am noticing I have much less SOB and typically go about 12 hours between needing to use my nebulizer or inhaler. My O2 stays between 93-94 when sitting without O2. I still desaturate below 90 when I walk around.

Like you I enjoy history, I am an amateur genealogist, enjoy gardening and owm my own business. I also have a 37 year old son and a 34 year old daughter in addition to a 19-year old son and a 16 year old son (yes - two families) :p

I'm glad you found our site. I know you will find hope for your COPD here - many of us have.
 

Nancy

New member
Hello Jeannine

Thank you for your warm welcome to this site. I was so relieved and happy to find a place where stem cell discussions are possible and information is exchanged.
Yup- I live in Grantham, NH. I'm close to Hanover and W. Lebanon.

I had the same experience as you when I quit smoking. I knew I had to quit because I began to feel pretty awful (daily headaches, SOB, felt exhausted)all the time. I went to a hypnotist several times and was finally able to overcome it, but like you, I just didn't feel as well as I thought I should. It then began to dawn on me that I had some kind of trouble, but I was still shocked when I was diagnosed.

I have asked my doctor (a pulmonologist at Dartmouth-Hitchcock Hospital) about a physical rehab program and he told me it wasn't necessary. I was surprised because everything I've read about "treatment" urges regular exercise. I've been trying to do as much as I can on my own, but I'm sure I'd benefit from a more formal program. I haven't been able to locate one in this area as yet.

I'm so happy to hear that your health is improving. I hope it continues.
Thanks again for your welcome.
Take care,
Nancy
 

barbara

Pioneer Founding member
Rehab not necessary?

It never ceases to amaze me how many doctors, especially pulmonologists, don't suggest rehab to their COPD patients. My pulmo is the first doctor in ten years that mentioned it to me. I learned about it on another forum so I was very agreeable about it. You either need to insist you get it with your pulmo or just strike out on your own. It can be done at home, it's just that you learn so many other things at rehab and there is a group of people who are in similar circumstances. I met a really nice lady when I went and we are still in contact. Also, my RT is now a member of this forum. If you have an oximeter you can use at home, I would suggest you start with simple things such as lifting soup cans or small weights. If you have a treadmill, get on it for as long as you can maintain at least a 90 or 91 on your sats at whatever speed you can do. When I first got on the treadmill I barely could do 4 minutes at 1.8 mph. You are not on O2, so I don't know how much you can do. I just did 15 minutes today at 3.8 (including 1.5 minutes at 4.0) and kept my sats at 93. I then did Theraband exercises and 2 minutes on the recumbent bike I own. I could have done more, but I figured that was enough. Maybe, you could just start walking around the block or in a mall or at a grocery store. It is really important to keep physically fit. This forum is mainly for stem cell discussion, but keeping as fit as you can before and after your stem cell therapy is very important. I was told by the doctor where I had my treatment, that the better shape a person is in, the better results. He didn't mean the treatment would fail if you were in terrible shape, as evidenced by some who were totally confined to a wheelchair when they had treatment and are now making good progress. Do what you can and watch your improvement. Unfortunately, COPD is a progressive disease and no amount of exercise is going to cure it, but exercise is good for everyone even those who have the luxury of not being ill. Nassin is always exercising every time I call him. He just turned 78! I think he is in training for the Olympics!
 

Nancy

New member
Ya Gotta Wonder Sometimes!

I guess what I find a little disturbing is that my pulmonologist is also a professor at Dartmouth College. I'd like to be in one of his classes! To be honest. I've given some thought to changing doctors because of the exercise thing. I like the guy-he's very nice but...

Anyway, I've been doing alot more walking since the snow melted. I live on a hilly dirt road so cycling is out. I don't think I could ride my bike very well anymore anyway. Since I've made an effort at exercise, I have noticed that I am stronger and have more energy. I'm interested in maximizing my health so I can better ward-off other nasty things like a cold, the flu or pneumonia. And yes, I want to be in as good health as possible so when I do opt for stem cell therapy, I'll have a better chance of greater success.

One thing I am curious about-does anyone know how the cells "know" when and where to stop? I'm concerned about tumors or some kind of overgrowth.

Gee, Barbara, you sound like a real athlete to me! You go girl!

Take care, Nancy
 

sp1d3rdan

New member
Nancy,

Researchers disagree on how Stem Cells restore and repair damaged organs. It has been proven that stem cells can rescue dying or damaged cells by building new blood supply or fusing with damaged cells and healing them. Regeneration of tissue is accomplished by cell communication. Each cell contains DNA that tells the stem cells spacially where they should reside and what to turn into.

Researchers have not found adult stem cells to produce tumors but are being extra cautious with cell therapy to make sure they do not. Embryonic stem cells on the other hand have shown that they can become tumors and thus are still far from real therapies in humans.

People on this forum have been treated with Adult Stem cells.
 

sp1d3rdan

New member
Nancy,

While I would not rush into anything without proper research, because stem cells are much better at rescuing damaged or dying cells than regenerating them, Stem cell therapy may be much more effective in preventing chronic illness from getting worse than curing the disease itself.

There has also been research that stem cells can partially dissolve some scar tissue such as fibrosis in the lungs and liver and help rejuvinate the organs. I for one want the therapy to be approved because it will at least stop or slow organ damage if not regenerate some of the tissue.

The sooner stem cell therapy is approved for diseases the sooner it will prevent our diseases from further affecting our lives.
 

sp1d3rdan

New member
Thanks Barbara

I hope that I do not come off like a know it all with my responses. I am actually here to learn from your experiences with cell therapy to decide how I can best be treated for my diseases some day. I hope that I can enlighten someone with the massive amount of stem cell research I have absorbed. =)

I used to let the doctor decide what was best for me. Unfortunately it was a doctor that gave me Empty Nose Syndrome and 2 more that made my condition much worse due to surgery. I struggled for years with my disease while my doctor's refused to admit I had a problem. I eventually found ENS on the web and diagnosed myself. Since then 2 doctors have confirmed my diagnosis.

I realize now that for any serious condition I need to educate myself as much as possible.
 

lraynak

Pioneer Founding member
Nancy

I am reading a good book on Embilical Cord Stem Cell Therapy by Steenblock and Payne recommended by one of our members that will give you a much better idea about stem cells overall and specificly the unbilical ones. You can be reasonably sure the therapy is not going to run amok and grow and grow
without stopping. The key word is regeneration of damaged lung cells, mainly the alveoli cells. These are the structures of the lung causing your shortness of breath because they're damaged and cannot exchange oxygen and carbon dioxide. I am not an authority but just another lunger who wants to put quality back into his life.

Larry
 

barbara

Pioneer Founding member
You certainly don't come off as a know it all. I was absolutely thrilled to see you joining in. To me, that's what this forum is all about. We all can learn from each other. I will keep after the doctor that gave me my treatment concerning ENS. He is just getting back from Australia this week, so I guess we should give him a little recovery time from being down under. I feel that some of my problems also stemmed from doctors who inadequately treated me. I had no qualms about trying something like stem cell therapy. For some of us, it was a no brainer decision. Stem cells offered a chance to go from not really living to living again for me. I think the others who have had treatment would echo that statement. I am still waiting to see how many posts a person has to make to graduate from junior member. My son, who is the administrator of this site won't tell me. You are well on your way due to your terrific participation I would think. Maybe, Mr. Administrator will have to come up with that new category soon. Hint Hint
 
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