Introduce yourself [Archive] - Stem Cell Pioneers

barbara

06-01-2007, 05:14 PM

Hi, I'm Barbara and I had umbilical cord stem cell therapy on April 5, 2007 also. This is when I got to meet Jeannine in person and we are now stem cell mates. I have just had my 8 week anniversary and after some very rough spots and too many ups and downs to mention, I am really starting to feel good. I am 57 years old and my FEV1 was 37% last time it was checked in late 2006. I just kept going downhill despite everything I tried. That's when I heard about stem cell therapy from an internet posting and decided to look into it.
I run a non profit bird refuge and love all kinds of animals. I am a vegetarian and I think I have a good sense of humor. I like to read murder mysteries and I like to write. Jeannine and I are writing a book about our experience and hope to finish it soon. This forum was a gift from my son, Darin Johnson, to a group of us that call ourselves the Pioneers. We hope to generate lots of discussion and help people have a place where they are free to express themselves and exchange information on stem cell therapy. The Pioneers are all COPD patients, but this forum is for anyone with interest in stem cell therapy. I personally feel that it is the medicine of the future and for many of us it is the medicine that we have chosen now. We couldn't wait for the future. I have traveled all over the world and I love train trips and cruises the most. I hate to fly now because of all the hassle of taking O2 with me. I am an avid bird watcher and since I don't get enough birding at my own refuge, (that's a joke) most of my trips now are for bird watching in places I can drive. I am currently taking a class in Ornithology from Cornell University. My first love is ducks, but like I said, I enjoy all creatures. My home is completely duckorated. I also like turtles a lot and have a collection of over 5000 (not living) of them from around the world. I have 7 live turtles. In my collection, I have turtle clothes, chairs, shower curtain, cigar cutter, antiques, real turtle fossils, jewelry, ping pong paddles, army helmets, everything I can find that is made to look like a turtle. It takes up the entire basement.
I am happy to answer anyone's questions about my therapy. I feel this week that I have hit another milestone. I have no SOB, I have been running like crazy all week and staying up super late and I feel very good. I am rid of that awful pit in my stomach that used to come as I gasped for air. My lungs are really opening up. I use the Power Lung 2 times a day and I feel that is a huge help. I am no longer watching the clock to take my meds because I am not needing them like I used to. I can easily go several hours past what I used to before needing additional medication. I can walk around without O2 and not get winded. My sats still drop, but not as bad as they used to, so I think that soon I may get the ultimate thrill and not have to use O2 any more. That is what I want so much.
My son Darin went with me when I got the therapy and he has learned a lot about COPD and stem cell therapy. He is my only child. He has a great wife and 2 kids. My husband, Lorin, of 20 years is a little behind in COPD knowledge as this disease hit him as hard as it hit me. What a lifestyle change and little or no hope until I found out about stem cell therapy. I am very glad I had it.

lraynak

06-02-2007, 11:58 AM

Technocracy

06-02-2007, 11:39 PM

My name is Tony.

Technocracy is a forum handle I've used for a number of years.

I'm Jeannine's husband. I went with her to have her treatment in April. At that time we got the chance to meet the half dozen people going in for Stem-Cell treatment. Jeannine and Barbara were the only two seeking the treatment for COPD on that trip.

I'm seeing steady improvement in Jeannine's condition, but it will take time to get the full effect. It took years for the lung damage to manifest into COPD and as powerful as stem cell treatment is, it will still take time to get the full effect of it.

I'm very hopeful about the end results given the changes happening so far.

Darin

06-03-2007, 10:22 AM

My name is Darin. Barbara2C's son. I drove her down to California for the procedure in April. Although she is still using the nose hose. I am happy she is progressing in feeling better. I also am the one who started the forum.

cathryn

06-03-2007, 10:38 AM

HI Fellow Pioneers

I'm just starting this thread by posting a bit about myself. I hope you will all do the same so we can know each other a bit better.

My name is Jeannine and I live in New Hampshire. I am married, 55 years old and the mother of 4 children who range in age from 15 - 37. I own my own business and my hobbies are genealogy, reading, traveling, and gardening.

I was diagnosed with Severe COPD in Feb 2005 and placed on oxygen in March 2006. My FEV1 was 31% in Dec 2005 and I am sure it has decreased since then. I received a stem cell transplant on April 5, 2007. Umbilical cord stem cells were used in the amount of 150 million cells. They were injected via IV which took about 20 minutes to complete. It really was THAT easy.

I would be happy to answer any questions pertaining to the stem cell treatments.

Hello Jeannine,
Thanks so much for your posting. I relate to you since we are the same age and I have a 36 year old son.
I am so pleased that this type of site exists now. I am 55 years old as well and went on O2 in April of 2001. My last readings were a couple of years ago and I was at about 24% FEVI. I spoke with the University of Colorado people two years ago about a lung transplant and that sounded awful and dangerous. I am extremely healthy outside this lung condition and I exercise and watch my nutrition and ultimately take great care of myself. I have not been back to the hospital since I went on oxygen 5 years ago but I do live with the shortness of breath and limitations that this condition brings. I have really researched stem cell therapy and believe that this could be the answer. I really want to know more. Where did you have this procedure done? What was the cost? How long do they say before you get the full effect of the treatment? Do they do a follow up treatment should the results from the first one not give the complete results that you want?
Thanks for listening and I would really love to hear from you.
Sincerely,
Cathryn

Jeannine

06-03-2007, 10:54 AM

Hi Cathryn

Thanks for your intrest in our experiences. After we completed our stem cell treatment we were asked to maintain a journal about our progress and to provide the company with updates every two weeks. Because Barb and I were the first COPD patients there was some difficulty in getting the right information after our treatment. But it appears this has improved as more people (4 of us so far) have had the treatment. The company provides a list of vitamin supplements and a diet plan recommended to enhance the engraftment of the cells. I recommend this treatment for anyone with COPD who wants to improve their quality of life.

It sounds like you've been doing quite well for someone with an FEV1 of 24% -good for you.

Let me add that it takes 3-4 months to see the full effect. I was told that no booster is required for COPD but that spinal cord injuries and some other disease involving the nervous system typically require a booster.

Barb and I are in the process of completing a book about our experiences and hope to have it available in two weeks.

RICARDO

06-03-2007, 10:56 AM

Thanks for the answer and more for the forum building.

EileenMA

06-03-2007, 12:47 PM

Hi! I am Eileen, 56 and have COPD (emphysema). I am on O2, 1-2L at rest, 4L for exercise, which I started using about 2 years ago. I worked full time until 2005, and it just became too much for me so I resigned, went on disability and really started taking care of myself for a change.

I go to pulmonary rehab maintenance twice a week and exercise at home at least 3 other days a week with weights and therabands. The quality of my life improved once I took my health seriously and quit trying to deny that anything was wrong (big step for me). My fev1 is 29% and I work part time now.

I am so happy that you and others are pioneering this amazing treatment and I wish you the very best. I also thank you for sharing your experiences with us and I hope to one day be a recipient of stem cell treatment.

It's so nice to meet you!

John O.

06-03-2007, 01:39 PM

Hi folks, I'm John O., from Madison, WI, home of Jim Thomsen, who first grew embryonic stem cells at the University of Wisconsin here some years ago. I'll be 70 in a few weeks and have had COPD since 1980. I manage it fairly well (current FEV1 34%) though I've had five hospitalizations in the past 5 years and am on O2 pretty much 24/7. I don't qualify for transplant and after much research have concluded it's doubtful I could ever qualify for LVRS, so stem cell therapy is of much interest for me. I would need to know the basics: who does it, does Medicare or other insurance cover it, etc., but most importantly progress reports either good or bad from people who've had it done.

cathryn

06-03-2007, 02:15 PM

I'm Larry R from Palo Alto, CA ( Northern California) age 70. Diagnosed with COPD in 2000 and been on oxygen for the last four years. I had the stem cell treatment from the SC Biotherapy in May 7th. I'm beginning to breathe a bit easier and the stats I'm recording daily are going up. I believe these are important baby steps that will lead to an improvement in my condition. My goal is to be off oxygen and breathing normally. I'm also taking all suppliments recommended by Dr Feinerman that include antioxidents and anti inflamitory ones as well as vitiamins. Feel free to write to me. I'll try to answer.

Hello Larry,

My name is Cathryn and I live in Denver. I am 55 years old and on O2, 24/7 at 3-4 resting and 6 walking. I still exercise and eat nutritionally. I am interested in what type of diet they recommended and what supplements? I am pleased to hear that you are doing better and am looking forward to finding out more about this therapy for myself. I have full intention to heal as well and get off the use of this additional oxygen. I have great faith that the way will be made evident and I believe this may well be the way. Thanks for responding to my email.

Blessings,
Cathryn

kathy

06-03-2007, 03:52 PM

Jancy

06-03-2007, 04:30 PM

Hi, My name is Jan, but most call me Jancy. My grandfather niclnamed me that many years ago. I live in Cortland, New York which is in Central part of the state not far from Cornell U. as Barbara said she was taking classes. I am 63. divorced and am a retired landscaper.I still try my hand at my work now and then but what took me 5 minutes takes a bit longer to do now.

I was diagnosed with COPD in 1996 and am currently on 2 liters O2 at night and use O2 as needed during the day. Have been in several rehab programs all of which have kept me in good shape as this disease progresses. I also am a five year Breast Cancer survivor. Recently have had a clean bill of health in that area. Been discussing alot of the treatments with my pulmonologist and did touch on Stem Cell, and will have further talks on this subject.

Have read many articles on the Forte Study, LVRS, BLVR, Vent procedure, etc, but feel that the stem cell will be the best option for me and would love to know all I can about the hows, whens and wheres. The updates you could provide to us would be invaluable. Also If I can provide any information I may come across I would love to share with you. It sounds like this will be the answer for many people.

barbara

06-03-2007, 06:29 PM

It is sure great to see new people out there joining in. This is what it is going to take to really get some new info out there. I am doing better every day. Jeannine and I have come up with some silly names for some of the symptoms we have had after treatment. One is the Impatient Syndrome. This is where you feel like the whole thing you just went through failed and you are forever going to be stuck with a nose hose and shortness of breath. Then there are the days of Mr. Toad's Wild Ride. One day feeling great, one day feeling worse than you used to. I am starting to even out now and get off the ride, but I still suffer from Impatient Syndrome. I think Larry even caught it for a while. I have documented daily happenings. While still on O2 24/7 the best thing is that I have no SOB and no longer a feeling of tightness in my chest. I can go upstairs several times a day instead of planning my whole day around not having to go back up there except for bed. I was doing all the right things before my therapy, great diet, rehab, plenty of exercise, etc. but I never was getting better. I hated living like that. I will keep you up to date on my progress and hope that our forum grows and that we can get more information on companies and doctors. This is not available in the U.S. as Jeannine said, but that does not mean it isn't a viable option for us that suffer. It may be tax deductible and that is something we are looking into. Any accountants out there? I've got to run now........(and now I really mean it)

cathryn

06-04-2007, 11:30 AM

Hi, my name is Kathy, I live in Texas and I'm 56. First digagnosd in 2003, placed on o2 at 2L in fall of 2004. I try to stay as active as possible, take vitamins and try to eat well. I lost my younger sister to this a year ago in March. To be truthfull I think she just gave up. Like many of us she was told nothing could be done and she beleived it....

I'm glad to see there is progress towards Stem Cell Therapy and that thoughs of you that have had treatment are doing well. I'm eagar to learn more and hopefully recieve a treatment in the future as well. Looking forward to more information and the testimonies. Thanks.

Blessings, Kathy

Hello Kathy,

My name is Cathryn and I am 55 years old and on O2 since April 2002. My younger sister also is on oxygen with the same condition and my older sister has bouts of bronchitis frequently. I was checked for Alpha 1 and it was negative but I am sure that this condition is somewhat genetic because both sides of my family on my Moms and Dads side had problems. My Dad passed away in 2001 with emphysema and my Moms dad many years ago of the same. I do feel although that stem cell treatment is probably a great option for those of us that need a boost to get our lungs to regenerate. I am very excited to have this site to find out more as I am sure you are. Sorry to hear about your sister. We cannot give up because our attitude is the most important thing when it comes to healing.

God Bless,
Cathryn in Denver

kathy

06-04-2007, 11:59 AM

Hello Kathy,

My name is Cathryn and I am 55 years old and on O2 since April 2002. My younger sister also is on oxygen with the same condition and my older sister has bouts of bronchitis frequently. I was checked for Alpha 1 and it was negative but I am sure that this condition is somewhat genetic because both sides of my family on my Moms and Dads side had problems. My Dad passed away in 2001 with emphysema and my Moms dad many years ago of the same. I do feel although that stem cell treatment is probably a great option for those of us that need a boost to get our lungs to regenerate. I am very excited to have this site to find out more as I am sure you are. Sorry to hear about your sister. We cannot give up because our attitude is the most important thing when it comes to healing.

God Bless,
Cathryn in Denver

Hi Cathryn LOL it felt funny typing it with a "C" My full name is Kathryn. I agree with you on the heriditary part, there must be something to it. I was tested for Alpha1 too and it came back neg. I've just now sent in another one (more detailed testing) to double check and make sure. My sister had this, my older brother has it and my grandfather had it. May not be Alph1, but something could be weak in our genes, if family members get it to and those before us had it. Thankyou about my sister, and sorry to hear of your losses as well. No we can't give up, we must keep a positaive attitude,as we can see these treatments prove to be bennificial. Hopefully we can all learn more from one another. I'm really interested in the nutrience and suppliment part as well.

Blessings, kathy

barbara

06-04-2007, 02:26 PM

Allen - You really fooled that doctor by still being around didn't you? Comments like this are horrible and I am glad you switched doctors. There are so many people suffering out there and they are being misled just like you were. You sound like a perfect candidate for stem cell therapy in my opinion. I am no doctor and I don't intend to give you any medical advice. You sound like the kind of person who won't take no for an answer. Exercising like you do is great pre stem cell therapy and it helps afterwards, although personally, I am seeing my gains without having to do an hour on the Treadmill everyday. I still work out, but I am not paranoid about it anymore. My new found energy keeps me walking so much anyway that I feel that I am getting lots of exercise on my own without going to a gym or feeling I have to work out or I will be short of breath the next day. As I said, I have no more SOB. I also have no tightness in my chest. I can suck in on my Advair disk until the thing is about down my throat. Before my treatment, I could barely suck in at all and felt like I probably wasn't getting much of the medicine. Keep posting and asking away. We want the forum to become an active place where we can discuss all of these things with this wonderful new medicine.

Jeannine

06-04-2007, 02:59 PM

Kathy and Cathryn

My family is also riddled with COPD and the Alpha test came back negative. I am an amateur genealogist and discovered there is a long history of lung problem in my family. It appears that our Viking ancestors had very weak lungs. My ancestors originated in Denmark hundreds of years ago.

I also gave a theory about eye color. I have met many people through my rehab classes with COPD and so far every one has blue eyes. I'm curious if this holds true and if blue eyes are somehow connected to hereditary lung problems.

I think I'll start a thread and take a survey about this.

John

06-04-2007, 03:12 PM

Hi all. Some of you already know me and abuse me. LOL. I'm 59 and have known I've had Emphysema for about 4 years. I'm pretty sure I was told I had COPD 10 years ago but had no idea of what they were talking about. My FEV1 is somewhere around 30%. Good luck to all that come to this site.
John

Jeannine

06-04-2007, 03:16 PM

John

Wait until Barb sees what you wrote about abuse. Talk about setting yourself up. :p:p

Did you check out my t-shirt photo?

John

06-04-2007, 03:43 PM

[QUOTE=Jeannine;49]John

Wait until Barb sees what you wrote about abuse. Talk about setting yourself up. :p:p

I know, I know, but I'm just trying to save others from her. LOL
John

linda/mi

06-04-2007, 03:45 PM

I'm so happy to hear that both of you we're tested for Alpha1. I'm so puzzled with all of your family history. I'm an Alpha. Non smoker. My grandmother had Emphysema and and never smoked. If anyone would like free tests kits and CD's on Alpha1, I can have them sent to you just send me your address.
themcmanns@aol.com Put Alpha test kit in the subject. The tests are done in a state of the art Lab. Your Doctor should receive the tests results in about 5 days. Test and the kits are FREE! Linda/Mi

barbara

06-04-2007, 03:50 PM

Jeannine - I am anxious to take your poll as soon as you set it up as the administrator is going to help you do. I think you do need to add a category for red now that John has joined the forum.

P.S. For those of you that are new members of this forum, please don't be offended. We all really love John and his sense of humor is out of this world. We all need laughter to keep us going and believe me, he can provide it. He is a member of what we call the Pioneers. This is a small group of us that got together on the internet when we weren't allowed to discuss stem cells on other forums without being ridiculed. This forum is a gift from my son, Darin, to the Pioneers and to all others who are not willing to take "there is nothing else that can be done for you" as an answer.

lraynak

06-04-2007, 07:44 PM

Hi Allen,
Glad you've joined the place where we're all seeking better therapy to alleviate this malady. I am the third one to get therapy from SC Biotherapy in San Diego, CA. I'm in the fourth week and have witnessed some small improvements. Good luck to you, hope you find the answers you're looking for.

barbara

06-04-2007, 08:56 PM

Larry - Are you noticing less shortness of breath? I think one of the first things that hit me was that all of a sudden my lungs seemed like they had expanded and more air was moving in and out. I looked in my journal and at one month, I was able to workout on the treadmill more. I was feeling pretty good and I was noticing that my sats were all over the place. I still was getting SOB, especially in the morning. How does this compare to what you are experiencing? You never did get any flu like symptoms did you?

linda/mi

06-04-2007, 10:10 PM

Hi, I'm Linda. I'm 56 years old. I was diagnosed with Alpha 1 Antitrypsin Deficiency and Emphysema three years ago. I am getting augmentation therapy once a week. I'm am very interested is stem cell research. Will they treat Emphysema & Alpha 1 Antitrypsin Deficiency? I play golf. I really enjoy my grandchildren. Linda

lraynak

06-05-2007, 12:27 AM

Linda,
I would hope there are possibilities for the improvement of COPD for what ever was the cause. Stem cell therapy is a new area of treatment, although not approved in this country, we have found one company that is a american one operating in California but doing the treatment in Tiajuana. I'm the third one of our group to have had the IV procedure. Barbara and Jeannine went about a month before me and are showing good improvement as well as I, although not as much, as them. Thanks to Barbara we have this new forum.

dsigler924

06-05-2007, 02:07 AM

Hi,

I'm Dave from NH. I live about 10 miles from Jeannine, but we've never met.

I was diagnosed with E in 1996 but my PCP never bothered to tell me. I thought it was chronic bronchitis because that was all he ever mentioned. My wife found out by accident in 2001 when she snuck a peak at my medical record and asked me what COPD meant.

My FEV1 was 18% and my lung capacity 10% as of 4 years ago. I don't know what it is now. I'm on 3LPM O2 24/7 plus 4LPM when walking.

I'm 59, widowed for 2 years, at which time I started my downward spiral of giving up trying to go on. It's both grief and tremendous guilt about what happened, or rather what didn't happen, the day before my wife died.

I can't afford the treatment (bankrupt in 2006), nor do I qualify for the loan Stem Cell Biotech arranges with Capital One because my income is too low (SSDI) and I'm loosing my house (foreclosure, see bankrupt).

Sorry to be a bummer, but as the saying goes, 'It takes all kinds.'

anney_uk

06-05-2007, 03:20 AM

Dave, I am so sorry to hear of the sad and difficult time you have been having and I do hope there will be some way you can have the Stem Cell treatment.

Barbara and Jeanine, I am thrilled at the progress you are making with the treatment and want to discover if it is available in UK or France perhaps. This definitely seems the way to go with COPD which I have had for many years. I am on oxygen 24/7 and very very sob most of the time. Congratulations to you both for being pioneers and also for this website, so generously donated by your son.

Every success
Anney

John

06-05-2007, 07:09 AM

[QUOTE=Technocracy;19]My name is Tony.

Technocracy is a forum handle I've used for a number of years.

I'm Jeannine's husband.

With your presence on the forum, does it mean I have to be nice to Jeannine now?
John

saljon-ma

06-05-2007, 09:05 AM

good morning.I'm new,too. I'm 60 yrs old and have copd diagnosed in'93 but didn't take it seriously until '97 when I gad to give up my job..It took me another 3 years to totally give up my cigarettes..I too was on wellbutrin for a few years even after I gave up the butts..I think thats what got me thruogh that part..it's only been the last year and a half that I've been on 02 (2lpm sitting,3 walking). I do go to a maintenance excersize class 3 days a week and that keeps me going, too. I think I'm declining because my breathing seems to be more difficult and the usual things( increased prednisone) don't seem to help..however,I have alot of faith and I am on lexapro so my outlook is pretty good. And, I have a wonderful,supportive husband that does everything that he can for me. I do believe very strongly in the stem cell research. there was an article about tissue regeneration of a bladder done on an 11 yr old girl last year which tells me it can be done. The University of Vermont is going to be involved in tissue regeneration which is where I read about it to start with. I didn't realize it had actually been done anywhere. I also believe I am to be part of some breakthough technology for copd ( at least, I really want to be). So, I have an appointment on Thursday with EASE trial coordinator. This is for airway bypass trial being conducted at Beth Israel Deconness. I can't afford to do the stem cell injections.I just hope it doesn't take too long to get started in this country

lraynak

06-05-2007, 11:48 AM

Hello,
You have come to the right place ro learn about Stem Cell threrapy. This new forum is beginning to grow by leaps and bounds reflecting more of the national estimate of COPD patients that will run into the millions. I recently did have the stem cell therapy (a month ago) and am beginning to feel the difference but still a ways to go. We should all work to getting our government more involved in helping with this disease.

lraynak

06-05-2007, 12:33 PM

Barbara,
I am better. Since I lowered my expectations of recovery deadlines I am improving which leads me to believe it is impossible to make any comparisons with your progress, Jeannines or mine as the data base is entirely too small. Even Nassin's case with his bone marrow procedure adds little to the mix other than to say there are different ways of getting it done. I believe I will overcome this disease and live well with more normal breathing. I know I have a farther road to haul as I'm older and more out of condition but my attitude is it can be done.

Friday of this week I will meet with my pulmonologist to chart my progress as a test case for him. There is much to discuss with him as I've also been in communication with Dr Feinerman via e-mail. He is in SE asia at some Stem Cell meetings and won't be back till July. He wants to change the meds. I had been using Xopenex abd Aerobid puffers with greater than 4 times frequency just to relieve my SOB. I didn't like that and called the Dr and his stand-in said he would relay the message. In the mean time I used my Foradil and Spiriva and as a result, didn't use the puffers for a day and a half after I breathed with an ease that I found amazing. I haven't received my "Power Lung" yet but look forward to adding it to the schedule with daily recordings.

Jeannine

06-05-2007, 01:12 PM

Fellow Pioneers

I have been in contact with Dr Weiss at the Univ of Vermont for the past three months. We've been emailing back and forth about my progress. He is extremely interested in my progress and he even left a message on my phone yesterday while I was at work indicating his interest in speaking to me. I am hoping by being a guinea pig for an AMrican unversity iy will speed things up for FDA Approval.

lraynak

06-05-2007, 01:34 PM

Jeannine,
The more we get the universities and medical people involved in this the better. I hope to generate some interest in this at the Stanford University and the VA administration.

kygal

06-05-2007, 03:50 PM

Hi everyone,

I'm so glad to see this forum started....thanks Barbara and Jeannine.:) A little about myself....I'm a caregiver to my husband, Doug, who was diagnosed with COPD in 2001. Like most people, we didn't think a lot about it and continued on our merry way until last year when Doug started getting sick more often and VERY SOB. It took us a year to finally get in to see a respirologist and at that time, he was so sick his FEV1 was 13. It's only been back to 15 and as low as 10. He's fought 3 different bacterial bugs in 3 months, pseudomonas, a type of non-contagious TB and now a pneumonia bug, all hard to kill. He just started in an in-hospital rehab program at a close-by hospital and will be there for 6-8 weeks, minimum.

The doctors say his only hope is a lung transplant and then, only after the rehab to build him back up. He's lost over 40 lbs. in the last year and most, if not all of his muscle. They are checking into some other things that might have contributed to this but feel the COPD has caused quite a bit of it. I'm at the end of my rope with the medical system here in Canada and am VERY interested in learning about stem cell research, treatment, where to do it, how to do it and everything else.

Look forward to hearing more from others about this. Thanks again for starting this forum.

Take care,

Mary

lraynak

06-05-2007, 06:29 PM

Mary,
I'm Larry, one of the four people to have had the stem cell therapy.

The procedure it's self is a quite simple IV. There is a post therapy protocal and diet (common sense one) to follow.

barbara

06-05-2007, 06:48 PM

There is more than one company out there doing therapy. I feel you should think about the location and the comments that may come from this forum. The problem with some of the companies is that they are in the growing process. You can get lost in the shuffle and it is hard to communicate. The doctor that is associated with the company I had treatment at is currently out of the country. There is another company in Argentina that has had good success also, but the contact here in the U.S. does not speak good English. There are many barriers to understanding what you might expect to see in the way of improvement of any condition. They are all in the business of selling their products, I feel, and they will make claims that cannot be substantiated. This forum will hopefully be bringing us more members that have had treatment so that we may see how their lives have improved. I was told that the company I went through had done 10 COPD patients previously and yet no one has been able to verify this. I went by the trust I had in the doctor and my desire to try something that I felt would change my life for the better. This doctor is supposed to be coming on board full time at the company in mid summer and I think this will be an improvement. There is also talk of a well known doctor from the Argentina clinic coming to a central location in Mexico to do treatment. We have feelers out all over for doctors to respond if they want to present their information. I guess my thought would be not to rely on claims they make as being the sole reason for you to choose a company. Ask for the scientific evidence of how the treatment they are offering is going to work. Ask to talk to a doctor and not a salesman or owner that is not a doctor. Be cautious, but don't scare yourself out of it either. We are here to help if you need us. We hope to have a list of different companies available sometime in the near future. We have contacted these companies and are waiting for replies which as I said can be difficult. The list will not constitute an endorsement, but it will give forum readers an opportunity to contact them for more information.

kygal

06-05-2007, 09:02 PM

Thanks for the replies and info. Barbara, I will definitely heed your advice and continue to visit the forums daily. Larry, thanks for your info...I'll contact the company and get their info packet. Here's hoping they'll mail to Canada. That's the problem with being up here, a lot of people in the U.S. don't want to mail here. It aggravates me to no end as I'm also an American but have been living here with my Canuck hubby for almost 10 years.

Again, I appreciate the responses and what I've been able to read so far. You all are the best!

Mary

Jeannine

06-06-2007, 08:14 AM

Oui - J'ai commencer parlez Francais :D

John

06-06-2007, 08:26 AM

Oui - J'ai commencer parlez Francais :D

GASP!!!!! Now you're really frightening me!!!
John

marcey

06-06-2007, 09:57 AM

Hi, I was dxed with COPD in 2000, but I am quite sure I had the problem long before that and didn't realize what my problem was. I have been on o2 for 4 yrs. Sometimes 24/7 (when chronic brochitous hits) and sometimes I don't have to use it for weeks at a time. Altho I have to admit that I push not using it at times when I really should. I know, not smart. I am 62 and very active, when possible, LOL. I mow my own lawn, sometimes with o2, sometimes without, and I love working in my garden. My biggest problem at this point is that I am becoming ultra sensative to my meds. After taking Spiriva for 3 years and loving how it works for me, it now gives me severe hives on my face and neck, and Advair makes me worse. So I have had to revert to Atrovent, which doesn't work nearly as well, not to mention loosing the convience of once a day. So learning about the stem cell research and treatments restores hope.
Thank you very much for starting this site to help educate all of us.

anney_uk

06-06-2007, 10:12 AM

marcey - I don't know if it is hives but I have had trouble with my complexion. Doctor diagnosed it as Rosacea - I can't connect it to any medications. I don't take Spireva, it doesn't suit my lungs at all. It isn't bad all the time and it seems to be diet and drink related as a glass of wine will make me break out the following day.

The stem cell research is fascinating, I am following Barbara and Jeannine's progress avidly. If it was possible, I would be on the next plane...

Anney

Virginia

06-06-2007, 12:48 PM

have managed well..My fev1 is about 15% now, on ox 24/7 at 2 ....I am a Christian and would not want a baby cells even though it would be dead, the reason is if they start with the dead ones they might find it nesserary in the future for live ones.
I had 2 brothers die of Copd last year, 1 brown eye the other blue, mine are bI was dxed in1992 with Emphysema,I,They told me it was sever then but i lue...2 sisters with copd both brown eyes...
I'm married to a wonderful man have 2 boys and 4 biological grankids..
Thanks...Virginia

Jeannine

06-06-2007, 01:01 PM

Virginia

The stem cells we received were from the umbilical cords of healthy newborn babies. There were no embryos involved.

There is also a procedure that extracts your own stem cells from your bone marrow and processes them to extract the blood cells and then infused back into your body via IV. This is called adult stem cells.

lraynak

06-06-2007, 01:14 PM

Virginia,
You don't have to be a christian to object to killing babies just to harvest the stem cells. Using umbilical cord stem cells retreived from the after birth blood eliminates this notion. The further laboratory refinement of the harvested cells to eliminate all possible diseases and further separating and isolating just the stem cells from the red, white and platelets creates the potential stem cell line for use by anyone with little chance for rejection. There are further refinements to the stem cell line for use in specific diseases. Bone marrow cells harvested from the hip bone and later reinjecting them into the same person eliminates any notion of possible rejection. An Argentinian Doctor has demonstrated its use for a COPD patient with great success. Several others including myself have had the umbilical cell treatment a short time ago and are improving.

GC1

06-06-2007, 04:19 PM

Wonderful that both of you ladies have done so well. Do you know anything about the other two who also had treatment after you?

You mention early on problems after the treatment ~ will you please share that information?

This is such promissing information, particularly the virtual zero risk factor as compared to transplant, LVRS, etc. I'll be researching more as well as following your progress.

Thanks for sharing.

marcey

06-06-2007, 07:03 PM

Hi Anney, I don't know positively what is causing the problem with my complexion either, but when I use the Spiriva it gets really bad, on my face and chin as well as on my head and back of neck, and when I stop using it, the bumps go away. The older I get the more sensitive my skin is to everything tho, even soap.
Like you if I could get to (and afford) where they are doing the stem cell treatments, I would be on their doorstep in the morning.
Thank you for responding.
Marcey

barbara

06-06-2007, 07:24 PM

Things are happening so fast in stem cell research that you never know Marcey. There may be a location that you could get to and you may be able to afford it. Don't give up. Stick with us. There is so much for all of us to learn.

barbara

06-06-2007, 08:02 PM

I too have problems with my meds. Currently the doctor has me on Advair, Atrovent and Singulair. He did tell me that most people that he knows that have had stem cell treatment for COPD have been able to drastically reduce or eliminate most of their medicines. I can already feel that I can go longer and longer without that "checking the clock for my fix" feeling that I used to have. I do not feel the need at all for a rescue inhaler at this point. I am so glad you are enjoying the forum. I have e-mailed a clinic in the Netherlands for you that live overseas to see if they have started accepting COPD patients yet. The whole process of getting information seems to take forever, but if word gets out, then perhaps this forum will attract a few doctors and clinics who will let us know what treatments they are offering.

barbara

06-07-2007, 06:44 PM

GC1 asked if I knew anything about the other 2 that have had the treatment after Jeannine and I did. Larry is one of the forum members and has been posting. He was number 3. Nelson is still gone so I cannot tell you about him at this time. We do have another member who has been out of town. He got adult stem cell therapy last year in Argentina. I am hoping he will rest up from his traveling and let us know about his progress. He was very ill before he got the treatment and his story inspired many of us to seek this treatment ourselves. As for our initial bout of illness, I cannot truly say what caused it. Both of us were extremely ill and Jeannine ended up in the hospital for 8 days. I was sick for about 6 days, but not as sick as she was. It is something we feel that is important for people to know. The clinic has recently added an antibiotic that you can receive prior to taking your trip if you want it. There is a lot of controversy about antibiotics also, but in my case if offered, I would have taken one in hopes of preventing any bacterial problem that I so often encounter when traveling. I hate to fly. It seems I always get something on a plane. I took a flight to Bismarck, ND a couple of years and ended up with pneumonia. I think that was the beginning of a real downward spiral for me that ended up with me needing O2 24/7. Jeannine said she hadn't been ill for 10 years and then she got so sick on the trip. Larry took an antibiotic prior to his treatment and he had no problems. It is a personal choice and while we have no way of knowing where we caught the bug we got, it was pretty miserable. I even drove to avoid flying. I recovered just as quickly as I got the darn thing and I will never know why it happened. When people ask if I would go through this all again, I say 100 percent yes. Just to not have SOB is wonderful. Sometimes, I forget how bad I was. I look at my journal and I see weeks of miserable days. Now, I am getting crabby if I have a couple of bad hours. I guess I am getting spoiled!

The things I have learned since this post was made long ago! Make sure you ask and receive a certification of purity for the umbilical cord stem cells you receive. I am now certain that the cells Jeannine and I got may have been contaminated. These are old posts in this section, but I am still just as enthused about stem cell therapy as ever; just make sure the company you go to provides the certification. Of course, this is not an issue when having autologous stem cell treatment.

lraynak

06-07-2007, 09:15 PM

Hi,
I'm Larry. the third one to have had the treatment on May 7th of this year. I wish there was some guide to guage my progress against the others. But folks, there isn't such an animal. We are in fact have different degrees of COPD, conditions that lead to where we are today and how we are reacting to this treatment. We are united in that we believe stem cell therapy may be our best oportunity to improve our condition and improve the quality of our lives. That may mean, less or no oxygen required. We have a documented case of such a patient already enjoying this improvement. The two brave persons that went a month before me are reporting their positive degree of progress in their recovery. Where I want to be and where I am today is my challenge. I will do all necessary things to accomplish it. If you expect and overnite cure, I would advise you to look elsewhere. I have and there aint anywhere else to go. The stem cell treatment requires time for the cells to engraft in the lungs and stimulate regrowth to the damaged components of the lungs.

After four weeks I am better. This isn't an endorsement for the company where I got the treatment, lt is a possitive vote for stem cell therapy. I thought it important to document measurements of improvement and I have four weeks of those measurements and I am better than a was. I reduced my level oxygen from 3 to 2 lpm with less discomfort of shortness of breathe. My blood oxygen readings are improving and there are other signs. I expect to keep improving and documenting the results. Please feel free to ask me questions my stem cell treatment. Please tell a friend about our forum, There is a estimated 20 million who might benefit from it.

Beverly-IN

06-07-2007, 09:25 PM

I think this is exciting news about stem cells! I am Beverly and I live in Indiana a widow. I was diagnosed with COPD in 2003 after a 6 week hospital stay. I suffered a long time before I new what it was! :confused: I am for the adult stem cell research but not embryonic stem cells (umbilical cord is OK) I wouldn't want to take a life for a life that would defeat the purpose I think! I was thinking about lung transplant and Kathy-TX had me read about this,this is very interesting I just had an appointment with my pulmo Dr that was good I'm staying steady my FEV-1 is 26% so that is good I even had a hysterectomy last July, did well with that! This is so exciting I will keep reading and I will ask questions also!;)

Jeannine

06-08-2007, 10:45 AM

HI Beverly

I can relate to why you would want to investigate stem cells before signing up for a transplant. My lung function is about the same as yours FEV1 of 28% and last July (2006) my doctor sent me to Brigham & Womens hospital to speak with a thoracic surgeon about the possibility of a lung transplant or LVRS. The doctor told me the risks and what Icould expect for results.

After much research on both procedures I dragged my feet about making a decision because both seemed so final to me and the risks and recovery times involved seemed very high. By December 2006. I pretty much had ruled out either procedure for another year. I simply wasn't mentally ready to go through all of the tests and surgery at that time.

Then I saw a posting on the Efforts website by a man who had gone to Argentina and had his own stem cells taken from his hipbone to treated with some type of solution and then reinjected into his thigh by an IV. He said he was now able to go without oxygen during the day.

Well, this was very intriguing to me and raised my hopes that perhaps this was the solution I had been seeking. I was reluctant to travel so far away in my condition so I did some research and discovered a place that was much closer and that used umbilical cord stem cells instead of your own. Anyway, I took a chance (all I had to lose was money). I do not regret it for one moment and even if it doesn't cure my COPD it has improved my condition so far and has given me hope for the future.

Note: I am not disclosing the name of the company because we (Barbara & I)do not want this forum to act as an endorsement for any one company.

John

06-08-2007, 10:58 AM

someone correct me if I'm wrong, but just because you have a stem cell treatment doesn't mean you can't go for the other options in the future like a transplant. That being the case I think I would go for the stem cell treatment first. This is infact the path I'm lined up for.
John

Jeannine

06-08-2007, 11:05 AM

John

That's exactly why I choose the stem cell option first. I still have the other options available to me, but if you go for LVRS or a transplant well, I doubt it would be of any help to have stem cells after either of those procedures. I'm not doctor but it makes sense to me.

Glad you're "lined up" to receive the stem cells. I do look foroward to hearing about your progess.

Edna Dotson

06-08-2007, 05:37 PM

Hello I am Edna and I have COPD. I am currently looking for answers so I can get treatment for my lungs. I want to get stem cell treatment. I don't know that much about it but I have heard that it helps. I need to know where to go what to do and how much money I need to get it all done.
I have contacted a company in California
they said they have treated several people with COPD
I would appreciate any and all help and guidance.
Thank You
Edna

barbara

06-08-2007, 07:16 PM

Thank you for joining our forum. Please feel free to ask questions as several forum members have had stem cell therapy. There is hope!

barbara

06-08-2007, 08:52 PM

I didn't get a chance to say welcome to Brenda. She was one of my RT's when I was in therapy. One of the best things you can do for yourself prior to treatment is to get in shape. She did a good job slapping us around when we didn't run fast enough on the treadmill and making us do extra laps if we were even late to class. Seriously, this is a great lady and I am glad she has joined the forum. If you are so ill that you cannot do much exercise at all, at least try to do a few things while seated to build upper body strength. It will help. The doctor at the clinic I went to suggested at least 5 minutes on the treadmill after therapy and 10 if you could do it. I know some are too ill to do this now, but it will be possible after treatment for most people. You do have to push yourself a little. I have found that the use of a lung exercisor has helped me tremendously both pre and post treatment. If you have any exercise questions, please post them and maybe Brenda can help. I know the man that was at the clinic when I went that has ALS is also exercising more now. Exercise is not just good for COPD patients, but for all of us that can do it. I am at 3.6 mph for 20 minutes on the treadmill and usually only have to quit because one of my knees hurts. I can maintain a 90-93 doing this. I do use my O2 because I have not gotten to toss that in the trash yet. One of the members on this forum that had treatment is 77 and is off O2 except at night. He is able to exercise with no problem without any O2.

barbara

06-08-2007, 11:20 PM

Bienvenidos Patsy. Habla Ingles? Tiene COPD? Barbara

saljon-ma

06-09-2007, 11:33 AM

I see the word "improvement" and that's all I need to want to go for the stem cell treament. I am glad to know that the cells aren't from embyros, though. I probably can't afford the treatment and all the other expenses, but where there's a will,etc... So, where would I get the names of some companies that do the procedure? I am so happy to read that you folks are improving. ever since I heard about the cloned sheep, I new it wold only be a matter of time before organs could be cloned. It only makes sense. I hope to be a part of an airway bypass study starting up here in Boston. I've signed the consent form andwill have an appointment in about 2 weeks for a physical and tests,( pft, 6-minute walk,ct...). Did I say before that I am on a list for lung transplant? The surgeon told me it's a long wait for emphysema patients. Sally

Jeannine

06-09-2007, 11:48 AM

HI Sally

I signed up for that clinical study in Boston (I live in NH), but changed my mind when I read the fine print (you have to go through the surgery whether or not you get the stents) and you don't find out if you have them for a year. That's a long time to wait (or waste) if you have severe COPD.

I have been to Brigham & Womens last JUly and met with Dr Stephen Mentzer to discuss having LVRS or a transplant. I hope you fully understand the risks and realities of these procedures. Once I researched these two procedures, I decided these choices were too final for me. Discovering stem cell transplant for COPD was like a dream come true for me.

Let's face it - if stem cells don't work for you it still leaaves you with the two surgical options. I'm not sure stem cells would be successful if you already had LVRS. The stem cells attempt to repair the damage which I expect LVRS would be considered to be damage.

Please make sure you understand the risks in the fine print in the stents clinical study.

I also found the B&W hospital a big mess. When you arrive at 10AM for a 10:30am appointment but aren't even seen until 3:00PM - well that speaks volumes for me about how much they care about folks on O2 who might run out while waiting.

saljon-ma

06-09-2007, 12:47 PM

You're right Jeannine, about not knowing whether you get the stents or you not. But, at this stage I'm willing to take that chance. I had a great 1st visit with the program co-ordinator. We were there for 2 hrs just as we were told to expect. It's non- invasive, non surgical and I feel I have nothing to loose. If my lungs are too damaged they won't be able to do the procedure. I'm hoping this will give me the time I need to hold on just that much longer. I'm on the lung transplant list. I DO NOT want to have that done, but I will if thats my only option when the time comes. I was told by the surgeon that emphysema patients are waiting a longer time now. What I'm really hoping for of course, is tissue regeneration,which is the stem cell procedure. I"m trying to buy some time. Sally

lraynak

06-09-2007, 12:50 PM

Sally,
As a member of the group that has undergone treatment of umbilical cord cells, I want to congradulate you on your curiosity to look beyond conventional and other experimental therapies. You have noted the progress of us in various degrees from different starting dates as it appears to take time for the injected cells to engraft to the damaged lung parts. We also don't have the same degree or type of the COPD which can make it difficult to make comparisons . In answer to your question where go you start, this forum is excellant as fellow COPDers are relating their experience with stem cells and also relating on latest news on stem cells. As a forum we recommend that if you want details as to where this is currently being down, etc, it would be best handled with a private message to that member to avoid an unwanted and unintended endorsement.
As there is an estimated 20 to 25 million people with COPD, there is a lot to do to spread the word on alternatives to this disease. We are pioreering the idea that COPD is curable.

Jeannine

06-09-2007, 12:51 PM

Sally

I find itappalling that they are pushing emphysema patients to a longer wait. Do they do this for heart transplants when the main reason some of these people have heart damage is due to the ir lifestyle choices?

Where do they draw the line and since when did the medical community decide to selectively treat folks? Isn't that against the hippocratic oath?

That is very troubling to me.

I wish you luck with the stents. Please keep in touch because I would be interested to know if you see any improvements.

barbara

06-09-2007, 01:07 PM

One of our members has had this procedure I believe. Her name is Jan. She is a great poster as you can see and I will ask her to post something on this. She is still wanting to have stem cell treatment in the future if I am not mistaken.

barbara

06-09-2007, 08:50 PM

I wanted to let the forum members know that Ray has become a forum member. He is already a Pioneer and is scheduled to have stem cell therapy for his COPD on June 21. We will look forward to hearing from Ray about how it goes for him. We all wish him well. June 21st is right around the corner Ray, so get ready!

lraynak

06-09-2007, 09:37 PM

Ray,

I was very happy to learn you are scheduled for stem cell therapy. I wish you every success and please keep the forum up to date on your progress.

barrybrooks

06-10-2007, 11:29 AM

A big Canadian hi to all; I just learned of this site this morning from Darin. As a staunch advocate for the increasingly large COPD family I am devoting a lot of my time in writing to our political leaders for the desperate need for more help in combatting this disease. It is the only current disease that is increasing, all others are diminishing. And yet the numbers of those smoking is dropping still lung disease is increasing. Is it the smog we breathe??
We need a hell of a lot more research into causes and effects, physiotherapy, cardio-pulmonary rehabilitation programs, research into new drugs, stem cell research and every other thing. We all have to get vocal and insist on things. For example IMHO a spirometer test should be as common as taking a patients blood pressure, temperature, blood sample. stethoscopic, and peeking in their noses and throat and ears.

For your information please visit our Canadian sites

Darin

06-10-2007, 03:29 PM

Barry, we need more people who want to find a cure. I am glad you have joined the forum also. Could you give us some more information about yourself. Do you have COPD? If so, how long. Could you maybe in another thread explain what kind of answers you receive from government officials on your quest to gain more support for research. I am sure many of us would help you out as much as possible with your quest.

saljon-ma

06-10-2007, 06:33 PM

I too would like to know who to approach and push for research into the stem cell therapy.Should we write to our congressmen, senators. If there were a well known actor or athlete with copd,I bet they'd be pushing for more research epecially when there seems to the possibility of it actually working. What about the tobacco companies? they should be putting up the big bucks to fund this kind of thing. Maybe they need to be approached. Some one is often sponsoring a walk for AIDS, breast cancer, CF,CP,ALS...why not COPD? How do we get started? Sally

Jeannine

06-10-2007, 06:38 PM

Sally

What needs to be done is to educate folks about the different stem cells - all of the money is going toward embryonic stem cells which have cured nothing, while little or nothing is going toward adult or umbilical cord stem cell research.

Contact your Senators and Reps as there is so much misunderstanding about stem cells even in DC that I am willing to bet they continue to push for embryonic because they have no idea there are different types of stem cells.

If we can prove with the help of our doctors that we have shown improvement, we might be able to get someone to listen.

So far there are 4 of us who have had stem cells for COPD and several others are scheduled in the next few months. We shall see how many of us show improvements in the next 6 months.

barbara

06-10-2007, 09:27 PM

Another thing we can do is to get the word out to other people who suffer from COPD. You would have to be one of us to know how many people call us names and con artists and scammers simply for bringing up the subject. These are fellow COPD sufferers. We need to educate within our own COPD community as well as on a higher level. It would be wonderful to have a movie star or athlete. Does anyone know one? COPD is not the disease it used to be. More and more people who do not smoke and have never smoked are being diagnosed with it. This is a disease that is worldwide. Stem cell research is stuck in a political mire in this country. I don't know if there is a chance that the U.S. will be able to catch up to some of the other countries that are well advanced in their knowledge of what stem cells can accomplish. It may take the U.S. years to act. Just as Jeannine says, the U.S. is so busy arguing about the morality of embryonic cells that they have ignored umbilical cord cells and adult stem cells. Spread the word. That's how it starts. Get treatment in countries that have it available and then come back and be a living example as we are doing. Thank you so much for a really great post.

stemcellpioneers

06-10-2007, 09:58 PM

Yes thank you so much for your post.
I did a google search for actors/actresses. This is what I found.
Richard Wilson of the UK

It is weak cause if you do a search they all are about that the had COPD when they died. I think parkinsonism with Michael J Fox would be an idea. I can't think of any. I do honestly think there are some out there that just may want to help out. I wouldn't know how to go about it, but I would start with the siblings of actors who have died from COPD. The hard part is getting them to believe it. There are joe shmoe's on other forums that will fight this more than they will look at it as a viable solution. Even if we get past the fact we don't want to use embryonic cells. It's an uphill battle. Many just refuse to believe that this could help out. I admit, when my mother said, she wanted to do this, I thought we were on a wild goose chase. I became a believer within days. It was the little things that you notice first. UNBELIEVABLE. Was I disturbing as some of the other guys on the forums? No way. I have always had an open mind and I am glad I have. Even if we find an actor. It's going to take a lot more than us to believe this is possible. I will do my part and check it out a little further. Thank you again with your positive ideas. Senators could be another option. Some actually will listen. Others, will think you are a quack. You never know.

saljon-ma

06-10-2007, 10:33 PM

Hi it's me again..I was just doing some searches and found that there are places doing stem cell research for other diseases. I didn't pay attention to exactly where they are or exactly what they are doing because I was looking specifically for COPD stuff. I did find that they are studying embryonic stem cells,adult stem cells and cord blood cells. The point is that there is research going on in this country. One of the things I read is that it takes time, well when are they going to start? If you guys tell these places of the treatments you've had, you know like write a letter with documentation of your improvments and send it to ALL the places that do the studies, maybe some one will take second look at you and your results. If a doctor took my blood out of me and put it back in, what would happen? I wouldn't get sick because it's my own blood, so if that doctor injected me with my own bone marrow cells what could possibly hurt me? If I didn't get better, oh well , but if I DID......I just don't see why they can't just do it and see what happens...what harm can it do? I'd rather take my chances with that than with major surgery and someone else lung. I know I probably sound silly but, I told you at the start that I really believe this is going to happen... that science will be able to regenerate any and all organs in the not too distant future. The real trouble comes when the drug companies start loosing money.

barbara

06-10-2007, 11:01 PM

You don't sound silly to me. You sound like a Pioneer. This is exactly how our little group got started - out of frustration that no one wanted to listen to the one man who had this done. We are doing our best to get the word out, but it does take time. I think you hit on a very huge problem and that is that the drug companies aren't really wanting us to get well. How could they sell billions of dollars worth of medications if we didn't need them? There is so much political and religious posturing in the U.S. that we have fallen behind in what could be the answer for so many of us. There are a few progressive hospitals, doctors and universities, but far too few. This forum has been started to help get the word out and to motivate people to pester (and I mean pester) their legislators and university officials to get on the stick. The University of Vermont has indicated to Jeannine that they have an interest in this. Dr. Daniel Weiss has been in touch with her. You might start with asking him if there is anything you could do to help their research move in the right direction. The next time you want to make a donation to something, try making it to places like the University of Vermont or any other facility you know of that is working on stem cell research. In the meantime, do not feel that if the therapy is not available in the U.S. that it may not be up to the health standards you are used to. The doctor that administered my cells was U.S. trained, the hospital was lovely (although very small) and the doctor that works with the company where I had it done is available should I have more questions or need anything. Insurance will not cover the cost of this, however, even if the U.S. gets its act together and the FDA by some miracle would approve the procedure in 10 years or so, it is still no guarantee that any insurance plan would cover the cost. They would rather pay out for all the medications you need now, then pay nothing if you didn't need any. It all makes no sense and is frustrating. I am glad you are willing to work on this. Barry is a new member and he has been actively contacting people. Perhaps we can get a new thread going to ask for ideas as to how we can move things along here in the U.S.

barrybrooks

06-11-2007, 03:52 AM

Sally and others This is a new field to me I have been a staunce advocate of COPD and just stumbled onto this thread and forum.

Sally you ask me who to contact, my answer is anyone. I have been on my own letter writing campaign to our provincial health ministers and the federal one too. Just lately I wrote to the Colleges of Physicians and Surgeons and intend to do more writing to medical schools and universities.

I am a Canadian but your task in the States is magnified ten fold or more. It surely is a daunting task but you can make a difference, believe me.

For more suggestions on letters and who to write contact Efforts (Emphysema Foundation for our Right to Survive)
www.copdcanada.ca

In looking for a spokesperson try Diane Sawyers of ABC TV she did an interview this spring with Ted Koppells wife on Good Morning America. The subject was COPD, also I think that a lot of our favourite stars that died from lung related problems maybe their families would speak out???

For any other information or if I can help contact BBrooks@copdcanada.ca or personally at bbrooks43@sympatico.ca. All my best wishes to all. As ever, Barry.

Jeannine

06-11-2007, 10:09 AM

Sally

I started by contacting Dr Daniel Weiss at the University of VT. He is one of the few who is researching stem cells for lung diseases. I am in contact with him on a regular basis now and he wants me to go up to Burlington VT to meet with him. Seeing I live in NH it's definitely doable.

Dr Weiss is currently away but plans to call me when he returns later this week. My physicians are all aware that I had stem cells and are going to be tracking my progress.

Dr Weiss is a start. If this proves logical to him maybe he can get the FDA to approve some clinical studies much sooner than he planned. Originally, he's been working with mice.

barbara

06-11-2007, 10:50 AM

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

06-11-2007, 11:03 AM

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

06-12-2007, 05:20 PM

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

06-12-2007, 06:57 PM

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

06-18-2007, 02:07 PM

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

06-19-2007, 07:56 AM

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

06-19-2007, 11:24 AM

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

06-19-2007, 04:27 PM

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

06-23-2007, 06:56 PM

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

06-23-2007, 09:14 PM

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

06-23-2007, 09:22 PM

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

06-23-2007, 11:01 PM

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

06-24-2007, 01:01 PM

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

06-24-2007, 02:49 PM

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

06-24-2007, 10:05 PM

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

06-24-2007, 11:03 PM

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

06-24-2007, 11:13 PM

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

06-25-2007, 02:27 AM

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

06-25-2007, 05:14 AM

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

06-25-2007, 11:03 AM

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

Kasey

06-27-2007, 06:26 PM

I'm not sure where to put this so if I have the wrong place, please forgive me. :confused:

Hi Everyone,
I'm Kasey and was diagnosed with severe COPD and severe asthma in 2004. I take Advair 500, Spiriva, Prednisone, Albuterol for rescue and neb as needed, Singulair, Zyrtek. Still sob. Am on 02 24/7 since last year.

A mutual friend told me about this site and I am so excited about all the wonderful information that is here and know I will spend a long time reading and catching up with all of you.

Stem Cells are just amazing and this brings me a lot of hope. I"m not ready to leave this life yet and the fact that some of you have been blessed to have these treatments and are doing so well.....what wonderful news! God bless you all.

I look forward to getting to know you. I am in Atlanta, Ga. where we are hot and in a bad drought. Water is being restricted now. Remember back when we were all told to shower with a friend to save water? :D

Thanks for having me. I'll try to behave. ;)

Bev12452

07-10-2007, 02:18 PM

Hi my name is Bev and I live in Florida I moved from New jersey 4 years ago I lived in Jersey all my life but my husband thought I would do better away from the cold and pollution and it has helped alot I am currently listed at Shands Hospital in Gainesville for the transplant but am so undecided about the surgery I don't feel bad enough for such a drastic choice in fact I don't feel as bad as the Drs think I am I have mylimitations but I can do just about what I want just a little slower I can go without o2 and most of the day I guess I don't realise how low my o2 level is I never realized I needed o2 so I continued to live and work without it until I went to New York For the lvrs and they were so amazed that i was functioning with such low levels anyway I chose not do to the lvrs and found out later that I would have probably died on the table because of the criteria that came came out after the study so now I am faced with transplant surgery and I am so worried that they may change the criteria for that after I have already had the surgery the thought of having 5 good years compared to going on as I am is scary the odds just don't seem to be in my favor so the stem cells seem to be the miricle I have been praying for I am to go to Shands in August but will tell them I need more time until I see how the pioneers make it wishing all of you the best of health and happiness

Jeannine

07-10-2007, 02:47 PM

Hi Bev

I was all ready last summerto be placed on a transplant list even though I could walk a mile. But I read the statistics on transplants and decided to hold off for a while. I'm glad I did. I must wanr you that we are not cured as of 90 days post treatment and I still have to use O2 for walking and sleeping. However, I feel better and can do more than I could before. I can even walk faster and not get short of breath. The only time I get short of breath now is when I take a shower, blow dry my hair and get dressed all in under 30 minutes. This used to take me an hour and I used to have to sit on the bed to get dressed and now I don't even have to think about it. I just get dressed. Keep in mind though I am using my O2 to do it all.

What you decide is entirely up to you and I don't know your current lung function. I do have one question: If they thought you would have died on the table for LVRS, why do they think you're OK for a transplant. I mean what has changed? If you don't think you need one yet then I would say you are the only one who can decide what you need to do.

John

07-10-2007, 03:03 PM

Hi Bev,
As Jeannine stated it is all up to you. I had begun to think about a transplant but then I thought that I would still have that option if the stem cell therapy didn't give me the results I want. That means to me that the most I stand to lose is some money. Good luck whatever you decide to do
John

barbara

07-10-2007, 05:40 PM

BEV - What a coincidence that you decided to post today. The administrator pointed out to me that you were our 100th member. We want to thank you and everyone else who is making this forum a success. As for me, no doubt in my mind. I would try stem cell treatment first. I used to function very well too with no O2. Sometimes my sats would be in the 40's. Didn't really realize what was going on. Then I got a major enlarged heart out of the whole deal, went downhill quickly and am now on O2 23/7. I have changed this from 24/7 because in the last couple of days, it has been driving me nuts and I have to take the O2 off for awhile. I think I am experiencing a new phase of recovery because I am doing fabulously well lungwise. I haven't been stuck with the horrible cold Jeannine caught and for this I am thankful. I honestly can say, with no doubt, that things are working. The doctor where I went for treatment says each individual is different, however he has seen some improvement in every case he has dealt with in all diseases. If you have the means, I would do what John is going to do and that is try stem cell therapy first. I am meeting with a group tonight that is planning to climb Mt. McKinley next spring. I told them to count me in.

TonyinDallas

07-10-2007, 05:53 PM

Hello all
My name is Tony Hamel aka Tony in Dallas. I have been around the COPD groups for a long time now. Somewhat over 8 years. I have been a member for EFFORTS, COPD-Support, COPD-International, Transplant-Support, Cure 4 CF and COPD and Live Cell and Stem Cell Therapy Groups.
I have gleaned a lot of information over the last number of years. I learned about my disease mostly through the internet and these groups.
I did have a single left lung transplant on Feb 11, 2001. It was rough going for a while but I made it through. My new lung never functioned as it was supposed to. It never got over 45%. It should have gone to 60 to 70%. I just had some rare complicaitons. My lung function before transpalnt was 9% of normal so at that time a lung transplant was my only option. Stem cells were hardly heard of at all. If I would have known, I would have gone for the stem cells. $20,000 is a lot better than $400,000. Shoot 2 days in ICU cost $20,000.
Well, I have had some complications and infections that have taken me back down to 25% lung function and making an effort to get relisted for another transplant.
BUT, after hearing about this group and that stem cells have been sucessfully used for lungs, I sure want more information. I have already had Live Cell Therapy in Algodones, Mexico from Dr. Diaz.
Money will be a problem. Right now my co-pays for my meds run 450 to 500 per month. My yearly medical costs are $7000 and I have Cigna insurance.
I did start a site for Live Cell Thearpy when I found out what they could do.
They do not cure but give the receipent a better quality of life. Some are outstanding in their outcome. Mine was just a little as my drugs did interfere with the live cells.
I am very much looking forward to stem cells and with a great anticipitation they will work for me even though I have had a lung transplant.
I also have a brother-iin-law that we sure want to look into stem cell treatment for his Alzheimers. He is at stage 5 and going down quickly now. I pray he can get a stem treatment quickly as he needs it more than I.
This excites me more than you know.
I have been waiting for this. I knew when I first heard of stem cell treatments, that it was going to be the cure for many diseases.
God willing, I will be able to get a treatment soon.
Tony Hamel
Keep on keepin' on
Tony in Dallas
Left Lung Transplant Feb 11,2001 St Paul Medical, Dallas, Texas
www.geocities.com/thamel5038

TonyinDallas

07-10-2007, 07:26 PM

Hi Kathy
You should visit our blog at http://www.stemcell-pioneers.blogspot.com where we've posted some of our improvements.

Jeannine:
I tried to go to the blogspot and it says you have to have an invitation.
Please set me up to read the blog spot.
Tony Hamel
Tony in Dallas

Bev12452

07-11-2007, 08:44 AM

I also am havinfg problems accessing the improvements that everyone has had may I have an invitation to veiw the results on another note I like to say HI to Tony I have been reading his posts on the copd list for years and he has been an inspiration he just keeps going Bev

barbara

07-11-2007, 09:50 AM

Bev - all of us progress at different rates. Jeannine and I have documented our day by day progress in our book which will be available next week. Some of the changes almost slip by me that I have. Little things happen and you suddenly think to yourself, I couldn't do that last week! All these little things add up. I have been very negligent about posting on the blog lately because quite frankly, I have had my plate full. I will try to do better for all of you, but there is not going to be any rule of thumb on how a person progresses after treatment. I wish I could say, Week one - everyone will feel like this, Week two - everyone should see this happening. Instead it is a roller coaster ride and not everyone is at the same amusement park. I continue, DAILY, to make progress. I am now getting to the point where I can climb the stairs and maintain a 90 reading on my oximeter. Just last week, I would drop to 85 usually. To me, this means progress. I am still on O2, but the hose is starting to irritate me at times. When this happens, I check my oximeter and my readings are usually very good. At this point, I take off the O2 and leave it off until my sats drop. This is something I am doing more and more. That's why I said in one of my last posts that I am not on O2 23/7, instead of 24/7. I have also stated many times that this treatment may not be for everyone. You will not be filling out 6 inches of paperwork, you will not be checked every week, you will have to be willing to trust the doctor and company you go to, you will have to learn to deal with being impatient if your progress is slow. There are many reasons that a person who has any doubts should not do this kind of treatment until he or she can overcome those feelings. I was one of the first people to have this treatment for COPD and that fact alone is absolutely awesome to me. I now have a chance to let others know about it. I have nothing to gain by spending the kind of time I do spouting the good news I have. I am not paid to work on the forum. None of the other Pioneers are either. None of us are employed by any companies, clinics or doctors that do this type of treatment. The thing that motivates us is that maybe we can help someone else. Are you free of SOB? Are you enjoying life to the fullest? Are you getting out and about like you would like? I don't think so. Would you like to feel good again? I told myself I had nothing to lose (except the money) and everything to gain. I have lost money before in more stupid ways than you can imagine, so I went for it and I do not, even for one second, regret my decision.

rosech44

08-05-2007, 12:40 AM

Hi, my name is Rose, fom Oregon--I am 63 this Sept.~~~ also a member of Tony's Live Cell therapy Group---I have had 3 treatments of the Live cell Therapy--not a cure, just makes life a little easier, til the effect wears off, but was worth it- I feel that it has prolonged my life to save me for the stem cell--
Like Tony I have been waiting for the stem cell to become available for us--

I'm really excited about this forum and the stem cell, fully intend to have the trreatment ASAP--I just have to start scraping up the money---
I was diagnosed with Emphasyma in 2000--I knew I had it, but wouldn't admit for much longer than that---I went thru pulmo Rehab, in 2000, and it was very helpful to me, not only to strengthen both my lungs, and my body, but to teach me how to live with this dreaded desease--how to breathe, how to walk up stairs etc. etc. I am going back to pulmo rehab next month, it is a 10 wk coarse, 2 days a week, and while I am doing that I am going to beg borrow or steal every dime I can, so I can get this treatment--

My sincere thanks to the Pioneers for being brave enough to step up to the plate, and try this wonderful treatment--- and to share it with the rest of us.

there is a light at the end of the tunnel~~~~Rose:

barbara

08-05-2007, 12:07 PM

Thanks Rose for such nice comments. Every once in awhile it is nice to have someone say thank you for being one of the first. Most of the Pioneers have decided that we are either brave or exceptionally crazy. Those that know me, know which category I fall in. Hope you will be active on the forum. It is really easy to check on the new posts everyday by simply clicking on New Posts on the home page. This way you get to see all that's new without having to search on your own. You can even do this without signing in, however, if you want to post, you do have to sign in to do that.

Susan

08-05-2007, 02:04 PM

My husband, Howard and I have almost certainly decided to for him to have this treatment for COPD. Son Rob and wife saved the cord blood from their new baby boy, born in June and they are willing for us to use it, if we need to.

Our appt. to speak with the Dr. is Aug. 12 and I guess we will find out more then.

We live in Alabama and flying with O2 will be a new experience for us. Sounds sort of complicated. We will be leaving Jackson, MS with a layover in Houston.

Howard's last Dr. visit showed 14% lung function and the Dr. put him on Hospice. This scared the you know what out of us as we did not think he was THAT bad.

He walks on treadmill, putters about the house and yard and uses weight machine. He is on O2 24/7 at 2 or 2.5 for relative inactivity and 3 for exercise. He can only walk about 30 ft. without needing to rest.

The Hospice people are very nice but we are looking forward to telling them their services are no longer needed - hopefully soon!! We KNOW not to be impatient but we are so excited and also scared.

Howard is dreading the "diet" we keep hearing about as he is a meat and potatoes man and will NOT eat broccoli, cauliflower, fish or seafood. Doesn't care much for chicken, either.

Thank you Jeannine for your patience on the phone with us and answering our e-mail questions.

Barbara, we have tried a couple of times to call you but have missed you both times.

We were both wondering how you and Jeannine found this clinic and Dr. as you were his first patients for COPD??

Susan

08-05-2007, 02:35 PM

You hit the nail on the head. YES, we now have HOPE where we really had none before.

Of course we will keep you posted and thanks for your care, concern and for starting this forum where we are learning so much.

Your book is what we look for every day we get the mail. Maybe it will arrive next week?

We think you should get on a TV program to share this with even more people!

barbara

08-05-2007, 03:47 PM

Hi Susan - Sorry I missed your calls. Please just leave me a message or e-mail me through the forum and I can call you if you like. I am sure Jeannine was a great help however. I mailed your book on Thursday. It goes out media mail so they say 7-10 days. I think you are going to find it full of all kinds of information including how the Pioneers got together. There are 135 pages and since it is done in magazine fold form, this is actually like 270 pages in bound books. You also get access to us personally at any time you have a question. If we don't have the answer, we will try to get it for you. Jeannine did indeed find the clinic where we went. I hate to fly, so I drove and that was a major reason I went there. I didn't use to feel that way, but the last flight I took, I ended up with pneumonia. In the book, there are some helpful hints about flying with O2 also. We have tried to include everything we could think of, but if you find something you think should be in there and isn't, let us know. There's always the second edition! It also has pictures. We are also hoping that the doctor from the Argentinian clinic will open one in El Salvador. This would be good news for people on the east coast and also those of you on the forum that are from that area. The company where we went is also planning on some expansion. None of this can come soon enough if my opinion. I hope Howard can reap as many benefits as we have from his treatment. He will have to take his copy of our book (by then it should be well read) and drop it off to the hospice nurses. Of course, he will need to walk in, without O2 and do this with a big smile on his face. I am not saying this to downgrade what those wonderful people do. My intention is to let Howard know that this is possible and when he is done with the book, it may well save someone else's life.