Introduce yourself

[barbara]

Brenda Crowe

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]

Patsy

Bienvenidos Patsy. Habla Ingles? Tiene COPD? Barbara

 

[saljon-ma]

where do I start ?

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]

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]

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]

Stem Cell Therapy

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]

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]

Message to Sally

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]

Ray

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]

Ray's scheduled

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]

Newbie

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]

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]

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]

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]

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]

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]

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]

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]

Wish I could help more~

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]

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.