Today I finally got off my butt and filled out the forms for the cell treatment I faxed them to the company and within 5 minutes they called and set up an appointment to speak with the Dr they than had a member named Ed ,who was in Mexico with Barbara when she had her treatment, called and answered the question I had at this moment it happened so fast I am sure there will be more questions in the future but I am going to wait until I get the book and then ask the questions Ed seemed like he really knew what he was talking about and was very reassuring I feel so much better now about going up to Shands to see the lung transplant team I know I have another option and I am very seriously considering it I will keep reading all the results all of you report and I wish to tell all the pioneers to know the stress you have lifted off my shoulders you are the angels with miracles I have been praying for. wishing all of you the best of health Bev
First step
- Thread starter Bev12452
- Start date
Wow
Bev - you have made me feel all shaky. I am so glad you took the first step. Your comments are truly an inspiration to me to continue on with this mission. I hope you love the book. I think I missed a whole season writing and editing my part. Being one of the only people in the world to have had umbilical cord stem cell treatment for COPD carries with it some responsibility. That's what our Pioneers group is all about and all of us who have had treatment are more than willing to answer questions and help in any way we can to better the lives of people with debilitating diseases. We disagree on a few things, but I think we all agree that helping people discover that there is something they can do to actually regenerate lung tissue is what it's all about. Thanks for being part of this forum.
Bev - you have made me feel all shaky. I am so glad you took the first step. Your comments are truly an inspiration to me to continue on with this mission. I hope you love the book. I think I missed a whole season writing and editing my part. Being one of the only people in the world to have had umbilical cord stem cell treatment for COPD carries with it some responsibility. That's what our Pioneers group is all about and all of us who have had treatment are more than willing to answer questions and help in any way we can to better the lives of people with debilitating diseases. We disagree on a few things, but I think we all agree that helping people discover that there is something they can do to actually regenerate lung tissue is what it's all about. Thanks for being part of this forum.
BEV - That's great news!!
Just be prepared for the TX doctors to try and talk you out of it. Tell them if they don't believe it to contact Dr Daniel Weis at the University of VT who can validate that this is for real. I have been in contact with Dr Weiss since before I went for my treatment. He told me not to go, but I went anyway (always been a rebel). Dr Weiss has invited me up to VT so he can run some checks on me to see what type of improvements I've had so far.
This is big stuff!
Just be prepared for the TX doctors to try and talk you out of it. Tell them if they don't believe it to contact Dr Daniel Weis at the University of VT who can validate that this is for real. I have been in contact with Dr Weiss since before I went for my treatment. He told me not to go, but I went anyway (always been a rebel). Dr Weiss has invited me up to VT so he can run some checks on me to see what type of improvements I've had so far.
This is big stuff!
thank you
I want to thank you both Barbara and Jeanine for all your help I will be able to talk to the transplant drs with no fear of beng thrown out of the program I have decided to do the cells and am just going up to see the Drs to see if they know of any trials starting here in Fl the fl govt has started to allow cell research Maybe my Drs will understand and be with me on my decision my big question is I don't fly do you think the trip would be too hard if we drive not that I would be driving I have a dodge magnum and with the seats down and the air mattress I sleep all the way to Louisisana when we go to visit I looked online and it will take 34 hours in my younger days we would drive straight through but those days are long gone any thoughts would be appreciated Bev
I want to thank you both Barbara and Jeanine for all your help I will be able to talk to the transplant drs with no fear of beng thrown out of the program I have decided to do the cells and am just going up to see the Drs to see if they know of any trials starting here in Fl the fl govt has started to allow cell research Maybe my Drs will understand and be with me on my decision my big question is I don't fly do you think the trip would be too hard if we drive not that I would be driving I have a dodge magnum and with the seats down and the air mattress I sleep all the way to Louisisana when we go to visit I looked online and it will take 34 hours in my younger days we would drive straight through but those days are long gone any thoughts would be appreciated Bev
Driving
Bev - I drove and had a great trip, but I live in Colorado. Nelson needs to add his two cents into this conversation because he drove from Florida.
Bev - I drove and had a great trip, but I live in Colorado. Nelson needs to add his two cents into this conversation because he drove from Florida.
Hi, Bev, to answer your questions about the trip to San Diego from Florida, I must tell you it was easy and scenic. We left home on Thurs 5/31 from Jupiter, which is on the east coast outside of West Palm Beach. We had to drive to Tampa to pick up a 12v charger for my Inogen which was time consuming, however we did arrive in San Diego mid afternoon on Sun the 3rd of June. I believe the total mileage was approximately 2400 miles. From Florida it is incredibly easy. The Florida turnpike takes you to Route 10. You stay on this route almost to San Diego. The last approximately 300 miles you will get on Route 8, which will end about 3 miles from the Hotel. If you have any other questions please feel free to ask. Nelson
trip
Nelson thanks for the info I live up here by Ocala so I am a little closer to 10 was it easy to find nice plases to stop or did you plan everything in advance I know I have alot of time to get things organized but I don't want to have to worry about it as time gets close thanks again Beb
Nelson thanks for the info I live up here by Ocala so I am a little closer to 10 was it easy to find nice plases to stop or did you plan everything in advance I know I have alot of time to get things organized but I don't want to have to worry about it as time gets close thanks again Beb
packet
I received my packet today. I haven't actually sat and read all the papers there surely is alot but I was just wondering about the fees because it says the fees are to paid in advance and when I talked to Ed he said the hotel room was included in the price is that true maybe I am getting ahead of myself and will just wait for the book I feel like a kid waiting for Christmas can't wait and so many questions thanks for being there if there is something I could do let me know I embroider and am thinking of making up a tee shirt can't decide exaxctly what saying I thought of "stem cell therapy the future is now" or something along that line what do you think just a project to keep my mind busy well it is puppy playtime hope everyone is in good spirit and good health Bev
I received my packet today. I haven't actually sat and read all the papers there surely is alot but I was just wondering about the fees because it says the fees are to paid in advance and when I talked to Ed he said the hotel room was included in the price is that true maybe I am getting ahead of myself and will just wait for the book I feel like a kid waiting for Christmas can't wait and so many questions thanks for being there if there is something I could do let me know I embroider and am thinking of making up a tee shirt can't decide exaxctly what saying I thought of "stem cell therapy the future is now" or something along that line what do you think just a project to keep my mind busy well it is puppy playtime hope everyone is in good spirit and good health Bev
Last edited by a moderator:
trip to San Diego
Bev, We didn't plan anything. There are enough places to pull over and choose what you would like. If your taking your time, about 7 PM start looking for places to eat and stay. You will find a variety and at reasonable prices. I would imagine that SCM will probably put you up in the Kona Kai Hotel. It is very nice and if your into water and boats upgrade the room for and additional $50 and get a marina side room. Its great, I stayed there a few years back for the America Cup time trials. Nelson
Bev, We didn't plan anything. There are enough places to pull over and choose what you would like. If your taking your time, about 7 PM start looking for places to eat and stay. You will find a variety and at reasonable prices. I would imagine that SCM will probably put you up in the Kona Kai Hotel. It is very nice and if your into water and boats upgrade the room for and additional $50 and get a marina side room. Its great, I stayed there a few years back for the America Cup time trials. Nelson
All the way from the U.K. WOW. SCB is hoping to open a clinic in Belgium! Clinics
Anney - there is more than one clinic that gives stem cell therapy. I will e-mail you some information. Maybe, Jeannine has already sent something too. We also list several others in our book, however, on this forum most of the experience has come from 3 clinics basically.
Anney - there is more than one clinic that gives stem cell therapy. I will e-mail you some information. Maybe, Jeannine has already sent something too. We also list several others in our book, however, on this forum most of the experience has come from 3 clinics basically.
Bev
The reasons clinics ask for fees in advance is that in the case of umbilical cord stem cell treatment, the cells are preordered for you from a lab and in cases where adult stem cells are being given, you are paying in advance to make sure you show up and that you are not taking up a hospital bed someone else could be using. Imagine, not knowing anyone else that had had this treatment and just having to wire your money off and hope for the best. Nassin, Jeannine and I were all in that boat! We went on trust and thank heavens we can now assure people that this was a reality for us. I am sure there are some clinics or doctors out there willing to relieve people of their money, but that is true in any business. This forum is for support as well as our knowledge. I think you will get a lot from our book and Jeannine and I thank you for ordering it. You also get the benefit of being able to ask questions on this forum and know you will get a response. Most of the companies do include 2 nights at a hotel for 2 people. I suggest going with someone if at all possible. You will also get transportation to the hospital and if you flew from the airport to the hotel and back. I know you are thinking of driving, so that wouldn't matter to you. Watch for your book. It was sent out yesterday. As far as our negotiated rate at the company we went to, you need to notify them that you are a member of this forum to receive a discount. You may still do that at this point. Only forum members will receive this rate we are told.
The reasons clinics ask for fees in advance is that in the case of umbilical cord stem cell treatment, the cells are preordered for you from a lab and in cases where adult stem cells are being given, you are paying in advance to make sure you show up and that you are not taking up a hospital bed someone else could be using. Imagine, not knowing anyone else that had had this treatment and just having to wire your money off and hope for the best. Nassin, Jeannine and I were all in that boat! We went on trust and thank heavens we can now assure people that this was a reality for us. I am sure there are some clinics or doctors out there willing to relieve people of their money, but that is true in any business. This forum is for support as well as our knowledge. I think you will get a lot from our book and Jeannine and I thank you for ordering it. You also get the benefit of being able to ask questions on this forum and know you will get a response. Most of the companies do include 2 nights at a hotel for 2 people. I suggest going with someone if at all possible. You will also get transportation to the hospital and if you flew from the airport to the hotel and back. I know you are thinking of driving, so that wouldn't matter to you. Watch for your book. It was sent out yesterday. As far as our negotiated rate at the company we went to, you need to notify them that you are a member of this forum to receive a discount. You may still do that at this point. Only forum members will receive this rate we are told.
Telephone appointment
Hi everyone. This is really quick. I have an appointment at the weekend and I have been assured that the doctor is the one that talked to you both - they said talked, not treated So, not sure about that. I did say in the first instance that I would want to be treated in Europe so hope the Belgian clinic is up and running as this would be easy to get to on Eurostar. It is very exciting.
Anney
Hi everyone. This is really quick. I have an appointment at the weekend and I have been assured that the doctor is the one that talked to you both - they said talked, not treated So, not sure about that. I did say in the first instance that I would want to be treated in Europe so hope the Belgian clinic is up and running as this would be easy to get to on Eurostar. It is very exciting.
Anney
The doctor
i am assuming you mean the doctor from the clinic where some of us went. This is great news that you will be talking to him. He will be the one to review your medical records and order the "cocktail" as they call it of stem cells for your treatment. All clinics like your most recent medical info, but you do not need to run out and get new tests done, just give them what you have. The actual treatment may or may not involve him, but you will be taken care of by qualified doctors in a good hospital. I have asked him to comment on the Belgium situation. I do not believe that anything is available there yet and I asked him for a time frame. If you are seriously ill, I would not wait for it unless it is to be opened soon. The trip will be more difficult because you live in the UK, but Nassin went to Argentina and he was very sick when he went. He now jets all over as many who know him can vouch for. The man is never home it seems. The key would be to get the best flights with the least amount of stopovers as I'm sure you would try to do. You should plan on spending a few extra days wherever you go just to rest up. Flying nowadays is really tiring especially for lung patients. Also, this is a good time to remind everyone that starting in 2008, everyone will need a valid passport to even do a border crossing into Mexico if you visit a clinic there. I hope you get your book very soon because lots of your questions should be answered in it. Also, I recommend that you write down questions you want the doctor to answer before he calls. Otherwise, he will get you off track talking about the amazing way stem cells can repair our diseased bodies.
i am assuming you mean the doctor from the clinic where some of us went. This is great news that you will be talking to him. He will be the one to review your medical records and order the "cocktail" as they call it of stem cells for your treatment. All clinics like your most recent medical info, but you do not need to run out and get new tests done, just give them what you have. The actual treatment may or may not involve him, but you will be taken care of by qualified doctors in a good hospital. I have asked him to comment on the Belgium situation. I do not believe that anything is available there yet and I asked him for a time frame. If you are seriously ill, I would not wait for it unless it is to be opened soon. The trip will be more difficult because you live in the UK, but Nassin went to Argentina and he was very sick when he went. He now jets all over as many who know him can vouch for. The man is never home it seems. The key would be to get the best flights with the least amount of stopovers as I'm sure you would try to do. You should plan on spending a few extra days wherever you go just to rest up. Flying nowadays is really tiring especially for lung patients. Also, this is a good time to remind everyone that starting in 2008, everyone will need a valid passport to even do a border crossing into Mexico if you visit a clinic there. I hope you get your book very soon because lots of your questions should be answered in it. Also, I recommend that you write down questions you want the doctor to answer before he calls. Otherwise, he will get you off track talking about the amazing way stem cells can repair our diseased bodies.
journey details
Thank you - I can't wait for the book to arrive ! Please set out the journey details - I would go from Heathrow, London to where? California? New York and change? Where in Mexico is it Tijuana? I have no idea, I have never travelled long haul - just to France. I am not sure I can make that trip, I am not a good traveller. However, I will get the details and keep an open mind for now. Money is a big factor too, obviously Belgium would be more practical.
I am not that seriously ill that I can't wait for the Belgium clinic although doctors would not agree about the 'seriously ill'. My fev1 figures are extremely low.
Thanks for all your help
Anney
Thank you - I can't wait for the book to arrive ! Please set out the journey details - I would go from Heathrow, London to where? California? New York and change? Where in Mexico is it Tijuana? I have no idea, I have never travelled long haul - just to France. I am not sure I can make that trip, I am not a good traveller. However, I will get the details and keep an open mind for now. Money is a big factor too, obviously Belgium would be more practical.
I am not that seriously ill that I can't wait for the Belgium clinic although doctors would not agree about the 'seriously ill'. My fev1 figures are extremely low.
Thanks for all your help
Anney
California Here I Come?
Anney - You would need to get to San Diego which is south of Los Angeles. I have inquired about Belgium and will let you know if I find anything out. Are you getting progressively worse or just staying about the same? Do you know what your FEV1 is? Mine was 37% when I last had it checked before treatment. Jeannine's was in the 20's and Nassin's was 11%. I don't know if Nelson ever reported what his was (maybe you can fill us in Anastasia if Nelson is out playing tennis) and I don't know right off what Larry's was, but he had lost at least half of his lung function I recall him saying. It all depends on the urgency. I think in the next 5 years many new clinics and companies may jump into the ring. Will they have the right method? Will they be behind the companies that are already up and running? Who knows? You just have to judge for yourself how badly you need the treatment. I suffered from SOB constantly and frankly that isn't living. I am 57 years old and didn't want to waste any more of my life being sick.
Anney - You would need to get to San Diego which is south of Los Angeles. I have inquired about Belgium and will let you know if I find anything out. Are you getting progressively worse or just staying about the same? Do you know what your FEV1 is? Mine was 37% when I last had it checked before treatment. Jeannine's was in the 20's and Nassin's was 11%. I don't know if Nelson ever reported what his was (maybe you can fill us in Anastasia if Nelson is out playing tennis) and I don't know right off what Larry's was, but he had lost at least half of his lung function I recall him saying. It all depends on the urgency. I think in the next 5 years many new clinics and companies may jump into the ring. Will they have the right method? Will they be behind the companies that are already up and running? Who knows? You just have to judge for yourself how badly you need the treatment. I suffered from SOB constantly and frankly that isn't living. I am 57 years old and didn't want to waste any more of my life being sick.
Fev1
Hi Barbara and Anastasia,
Thanks for your comments and good wishes. My FEV1 was 18% but think it may be lower now. Sitting on my sofa, I am fine but walking around is difficult, very sob. Also very sob getting to my car which is right outside on
my drive - hard to understand that. Not too bad going upstairs,, just take my time and recover at the top. Can't do any housework or much at all.
Social visits are a bit of a nightmare, even with family I do get stressed and tired, especially eating and holding conversations.
All in all, not brilliant.
Anney
Hi Barbara and Anastasia,
Thanks for your comments and good wishes. My FEV1 was 18% but think it may be lower now. Sitting on my sofa, I am fine but walking around is difficult, very sob. Also very sob getting to my car which is right outside on
my drive - hard to understand that. Not too bad going upstairs,, just take my time and recover at the top. Can't do any housework or much at all.
Social visits are a bit of a nightmare, even with family I do get stressed and tired, especially eating and holding conversations.
All in all, not brilliant.
Anney