ChipORiley
New member
Every thing that I have read on this site is "touchy feely" type stuff. Any clinical facts out there to substantiate stem cell theraputic proceedures as they relate to sucess in reversing pulmanary maladys?
Facts vs. circumstances
- Thread starter ChipORiley
- Start date
No long term documentation
Chip - Nassin had adult stem cell therapy last December. He had a spirometry test with his pulmo in February and went from and FEV1 of 11% to 17%. He is off O2 except for sleeping and jets all over the world. The man is 78 years old and was almost a goner before treatment. Jeannine and I were the next two members on this forum to have umbilical cord stem cell therapy for COPD. That was in April. Larry was next in May. Common sense, touchy feely or not, tells me that something good is happening. I have no SOB and haven't had any since 5/20. My pulmo who used to work at National Jewish Hospital is fully aware that I have had this treatment. I do not plan to visit him until the 6 month mark as I don't have an extra $100 to shell out just to go say hi. This is not an overnight miracle cure. It is a slow progressive improvement in lung function due to our damaged lungs being regenerated. There are a lot more long term studies done for cardiac and some of the other diseases, but lung disease was not treated until recently when it was found that cardiac patients were getting vastly improved lung function after stem cell therapy. Dr. Fernandez who was Nassin's doctor published a paper on his findings including Nassin. It is on the forum and is very clinical. I couldn't see anything touchy feely about it at all. If you are looking for long term studies to substantiate success for stem cell therapy for
lung patients, good luck. Everything must have a beginning. This is the Stem Cell Pioneers forum and is named that for a reason. We welcome you as a member and hope you will continue to monitor the forum for any new information that comes along.
Chip - Nassin had adult stem cell therapy last December. He had a spirometry test with his pulmo in February and went from and FEV1 of 11% to 17%. He is off O2 except for sleeping and jets all over the world. The man is 78 years old and was almost a goner before treatment. Jeannine and I were the next two members on this forum to have umbilical cord stem cell therapy for COPD. That was in April. Larry was next in May. Common sense, touchy feely or not, tells me that something good is happening. I have no SOB and haven't had any since 5/20. My pulmo who used to work at National Jewish Hospital is fully aware that I have had this treatment. I do not plan to visit him until the 6 month mark as I don't have an extra $100 to shell out just to go say hi. This is not an overnight miracle cure. It is a slow progressive improvement in lung function due to our damaged lungs being regenerated. There are a lot more long term studies done for cardiac and some of the other diseases, but lung disease was not treated until recently when it was found that cardiac patients were getting vastly improved lung function after stem cell therapy. Dr. Fernandez who was Nassin's doctor published a paper on his findings including Nassin. It is on the forum and is very clinical. I couldn't see anything touchy feely about it at all. If you are looking for long term studies to substantiate success for stem cell therapy for
lung patients, good luck. Everything must have a beginning. This is the Stem Cell Pioneers forum and is named that for a reason. We welcome you as a member and hope you will continue to monitor the forum for any new information that comes along.
Measured progress
I received my stem cell treatment in May of this year. I acquired an oxymeter
to verify if my blood levels were improving. They have in fact improved from the low 90's to the upper nineties and I take the readings almost daily. I also acquired a hand held FEV device to record the volume outflow. I started with readings of 170 and have more than doubled the readings now reaching the 400 level. I also use a device to improve the lung function called the Lung Expander that has several settings for increasing the resistance on inhaling and exhaling from very easy to damn hard. I started at the easy level barely able to do 10 repetitions and can now do 20 at the much higher level. In doing all of this, I can breathe easier and I'm finding my stamina is also returning so I can do more things I like to do. Even though I'm still using oxygen , it is at reduced levels. Before I needed 3 LPM and more with exertion. I use 2LPM now resting and exertion.
I will admit I am not cured of COPD. However, I can shower without oxygen, tie my shoes the same way and dress. Life just seems to be a lot more fun than it use to be before the treatment. I would also add it's been just 4 months since the treatment trying to correct a 40 year smoking disaster on my lungs. I expect to improve more and more and take measurements all along the way. Consider this, I'm 70 years old, I could not wait for FDA approval ( some guess 10 years down the road) for stem cell treatment. I'm glad I did it and I would do it again.
I received my stem cell treatment in May of this year. I acquired an oxymeter
to verify if my blood levels were improving. They have in fact improved from the low 90's to the upper nineties and I take the readings almost daily. I also acquired a hand held FEV device to record the volume outflow. I started with readings of 170 and have more than doubled the readings now reaching the 400 level. I also use a device to improve the lung function called the Lung Expander that has several settings for increasing the resistance on inhaling and exhaling from very easy to damn hard. I started at the easy level barely able to do 10 repetitions and can now do 20 at the much higher level. In doing all of this, I can breathe easier and I'm finding my stamina is also returning so I can do more things I like to do. Even though I'm still using oxygen , it is at reduced levels. Before I needed 3 LPM and more with exertion. I use 2LPM now resting and exertion.
I will admit I am not cured of COPD. However, I can shower without oxygen, tie my shoes the same way and dress. Life just seems to be a lot more fun than it use to be before the treatment. I would also add it's been just 4 months since the treatment trying to correct a 40 year smoking disaster on my lungs. I expect to improve more and more and take measurements all along the way. Consider this, I'm 70 years old, I could not wait for FDA approval ( some guess 10 years down the road) for stem cell treatment. I'm glad I did it and I would do it again.
A star for Allen
Allen - If you are one of the people who cannot afford treatment, I want you to know that we are working our butts off trying to come up with ideas to raise money to help grow our forum fund. We are even looking into grants. If anyone out there is good at grant writing, please let us know. The pay is non existent, but the rewards are great. There is a lot that goes on behind the scenes on this forum and all of it is geared towards making stem cell therapy available to those that want it. Thank you for your special comments. Hang in there, Allen.
Allen - If you are one of the people who cannot afford treatment, I want you to know that we are working our butts off trying to come up with ideas to raise money to help grow our forum fund. We are even looking into grants. If anyone out there is good at grant writing, please let us know. The pay is non existent, but the rewards are great. There is a lot that goes on behind the scenes on this forum and all of it is geared towards making stem cell therapy available to those that want it. Thank you for your special comments. Hang in there, Allen.
Response apprecciation
Thank you for responding to my blog. We feel that there are alternatives to the medical pronouncments that COPD is incurable. It is this spirit that the pioneers was formed from a group of like thinking suffering people to research, learn and locate sources of help from stem cell therapy. It appears clinics are popping up all over the world except the USA. I think that it is our mission to spread the word to accelerate the clinical trials for this new area of medical help to fight against this disease right here in this country. The ALA estimates there are as many as 25 milliom people suffering from COPD and growing that will over take heart disease in deaths soon. Be an advocate and spread the word - put stem cells to work.
Thank you for responding to my blog. We feel that there are alternatives to the medical pronouncments that COPD is incurable. It is this spirit that the pioneers was formed from a group of like thinking suffering people to research, learn and locate sources of help from stem cell therapy. It appears clinics are popping up all over the world except the USA. I think that it is our mission to spread the word to accelerate the clinical trials for this new area of medical help to fight against this disease right here in this country. The ALA estimates there are as many as 25 milliom people suffering from COPD and growing that will over take heart disease in deaths soon. Be an advocate and spread the word - put stem cells to work.
Connie Golden
New member
Improvements Noted
I am scheduled to receive stem cells next month.
I have a question for those of you who have already received cell treatment.
Have any of you noticed any other changes physically or mentally or have your friends or family noted any improvements. I can't help but believe there will be a general health improvement. Maybe it's vision, flexibility, memory, etc. I'm very curious about this.
Thanks in advance,
Connie
I am scheduled to receive stem cells next month.
I have a question for those of you who have already received cell treatment.
Have any of you noticed any other changes physically or mentally or have your friends or family noted any improvements. I can't help but believe there will be a general health improvement. Maybe it's vision, flexibility, memory, etc. I'm very curious about this.
Thanks in advance,
Connie
I'm in the same boat with Allen; definitely prefer stem cell therapy to any alternative like surgery, but I just cannot afford it. I know there are organizations that help people fundraise for transplants, but I have no idea if they would do this for stem cell therapy because in this dumb country (pardon my editorializing), it is still considered "experimental," and we seem to be light years behind some of the European countries. SIGH!
Noted Changes
Connie,
Congradulations on your decision to have stem cell therapy. Most of us hoped we could at least breathe better and not be so SOB. Everyone I know has remarked how much better I am with more energy, healthier complexion, better general attitude and making progress on a slow steady pace. I'd advise you to keep a log on how you feel and add comments from others to get a picture later of what is actually happening. Taking measurements of blood oxygen and FEV meter to track improvement and following the post therapy regimine will help. Practicing on the lung expander will help make breathing easier. You do have to help yourself by doing exercise and keeping positive as there are days of ups and downs. Keep on going and good luck.
Larry
Connie,
Congradulations on your decision to have stem cell therapy. Most of us hoped we could at least breathe better and not be so SOB. Everyone I know has remarked how much better I am with more energy, healthier complexion, better general attitude and making progress on a slow steady pace. I'd advise you to keep a log on how you feel and add comments from others to get a picture later of what is actually happening. Taking measurements of blood oxygen and FEV meter to track improvement and following the post therapy regimine will help. Practicing on the lung expander will help make breathing easier. You do have to help yourself by doing exercise and keeping positive as there are days of ups and downs. Keep on going and good luck.
Larry
Adina and Connie
Adina - In this country and I would think almost anywhere else, a person is allowed to fundraise for whatever cause they like. Do you have any clubs you could approach? My Optimist Club is always helping people that ask us as long as they take the time to visit our club and tell us of their worthwhile cause.
Connie - Yes there are some plusses. I have lost 15 pounds that I put on with prednisone. My emotions are all over the place sometimes, but for the most part I just feel more content and not so apt to get upset by rude comments, etc. as I used to. I think some of the names that Jeannine and I came up with like Calm Mode, Impatient syndrome, etc. really do tell it like it is. Keeping a journal is very important like Larry said. If you don't, you will wish you had. You have a good attitude and that helps. You will have some down days and others that will put you on cloud nine. That is totally normal.
Adina - In this country and I would think almost anywhere else, a person is allowed to fundraise for whatever cause they like. Do you have any clubs you could approach? My Optimist Club is always helping people that ask us as long as they take the time to visit our club and tell us of their worthwhile cause.
Connie - Yes there are some plusses. I have lost 15 pounds that I put on with prednisone. My emotions are all over the place sometimes, but for the most part I just feel more content and not so apt to get upset by rude comments, etc. as I used to. I think some of the names that Jeannine and I came up with like Calm Mode, Impatient syndrome, etc. really do tell it like it is. Keeping a journal is very important like Larry said. If you don't, you will wish you had. You have a good attitude and that helps. You will have some down days and others that will put you on cloud nine. That is totally normal.
Adina - I knew what you were referring to, but thought that if they were only into well known causes such as breast cancer, etc. that maybe a local service club could help. We raised over $17000.00 at my club on one three day weekend this summer for our projects. The clubs are always eager in most cases to help with people that need help. That's what service clubs do. It was just a thought.
Connie
It has been five months since I had the stem cells (same day as Barbara) and I have noticed many changes as have my family and employees.
I no longer wear oxygen at work (I do have it under my desk just in case) so that in itself is an improvement. I no longer wear it around the house either.
I took a walk at the beach with my sister on Sunday. A year ago I would not have even attempted to walk around in her driveway. We didn't walk very far perhaps 1000 feet or so and this was after having climbed down 3 flight of stairs. I did take a break before climbing back up all three flights. I used to have to stop at each landing for about 5 minutes before continuing but now I can go up without stopping. I was using my oxygen because I don't feel that I am ready for going without while climbing stairs or walking long distances.
My husband is also amazed at my progress because he was doing most of the cooking and now I am doing most of it again. I am busy shopping, dining out, going to movies and visiting friends and family on the weekends now. Before I really didn't enjoy going out much because it was too much for me.
It has been five months since I had the stem cells (same day as Barbara) and I have noticed many changes as have my family and employees.
I no longer wear oxygen at work (I do have it under my desk just in case) so that in itself is an improvement. I no longer wear it around the house either.
I took a walk at the beach with my sister on Sunday. A year ago I would not have even attempted to walk around in her driveway. We didn't walk very far perhaps 1000 feet or so and this was after having climbed down 3 flight of stairs. I did take a break before climbing back up all three flights. I used to have to stop at each landing for about 5 minutes before continuing but now I can go up without stopping. I was using my oxygen because I don't feel that I am ready for going without while climbing stairs or walking long distances.
My husband is also amazed at my progress because he was doing most of the cooking and now I am doing most of it again. I am busy shopping, dining out, going to movies and visiting friends and family on the weekends now. Before I really didn't enjoy going out much because it was too much for me.