Introduce yourself

[kygal]

Thanks!

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]

Oui - J'ai commencer parlez Francais

 

[John]

Oui - J'ai commencer parlez Francais

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

 

[marcey]

I'd like to introduce myself

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]

anney_uk

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]

Wishing to know more on the stem cell for Emphysema

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]

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]

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]

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]

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]

Marcey

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]

Meds

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]

Reply to GC1 and others

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]

My stem cell treatment

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]

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! 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]

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]

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]

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]

Hi

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]

Welcome Edna

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