Introduce yourself

[Jeannine]

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.

 

[RICARDO]

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.

At this point how is your overall situation developing ?, your O2 use, ect....?

 

[Jeannine]

Ricardo

I am making some progress. I can breathe deeper, use less oxygen (1.5 while sitting - used to be 2.0 - 2.5), have more endurance when exercising, I am also noticing less need for inhalers. I was told it would take 3-4 months to see the maximum results. It's only been 8 weeks.

I'm sure there are other improvements, but I can't think of them at the moment.

 

[barbara]

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]

Ihtroduce Yourself

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 antiinflamitory ones as well as vitiamins. Feel free to write to me. I'll try to answer.

 

[Technocracy]

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]

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]

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]

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]

Thanks for the answer and more for the forum building.

 

[EileenMA]

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.]

Intro

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]

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]

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

 

[Jancy]

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]

Great to see new people

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]

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]

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]

Welcome Allen and other new members

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]

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.