I Ordered the Book

Susan

New member
Just finished reading the book

WOW! What an amazing read! Learned so very much and was very impressed with the way it was written - so easy to understand and not a single typo or mistake that I could find (used to be a proofreader).

Your honestly is so refreshing and it helped us add to the list of questions we have for the Dr., who is supposed to contact us Sunday at noon (Aug. 12).

My husband will be the one considering the treatment. When his lung function was 30% he was doing pretty well and not on O2 at all. After the hurricane (Katrina) he had a sudden downturn and his pulmonary function is now down to 14%. He is now on O2 almost all the time but walks on treadmill, showers, putters around outside with his portable unit but has to rest often.

No one seems to believe that the hurricane had anything to do with his downturn, but the outer part came right over our house (in West Alabama) and I personally think it brought a lot of contamination to us, albeit unseen and unknown at the time.

I am concerned that the massive dose of cells Barbara and Jeannine received might be too much for him but we will speak with the Dr. about that.

Again, B & J, THANK YOU BOTH for such an informative book, for your caring enough about the rest of us to write it, and for taking so much time to tell us the details of your experience.

Susan
 

barbara

Pioneer Founding member
Thank you, Thank you, Thank you

Susan - How very sweet of you to write this outstanding book review. It made all of those 1 and 2 A.M. nights worthwhile for me. I have read the book 8 times now because of proofreading so I am glad you didn't see anything. I was going cross eyed for sure. I know Jeannine had her share of proofreading too. You bring up a good point about the hurricane and I think many times doctors just don't see that environmental issues can make a big impact on our lungs. Since you read the book, you know my situation. I wasn't smoking packs of cigarettes a day, but I did have issues brought on by my environment that I know played a part in my deterioration. It is good you are making a list of the questions to ask. The company in Costa Rica that is mentioned in the book, uses smaller doses of cells over a 2-4 week period. Nassin's brother went there and is doing very well Nassin says. He lives in Costa Rica so this was possible for him. There really isn't anything to show however, that I am aware of, that these smaller doses over several weeks will do better for you. Again, I am not a doctor, so this is a good question to ask. Perhaps, you can tell us what answer you are given.

Rose - Thank you very much also. Your book is on its way.
 
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Susan

New member
Questions

Of course I will be glad to share what we learn on Sunday. We hope we won't be pressured to make a "Yes" or "No" decision while we are on the phone but will be able to take what we learn Sunday and discuss it for a few days.

We were told several years ago when Howard had pneumonia at that time that if he even so much as caught another cold or anything more serious, he was very much in danger. He cannot even have any medical treatment that requires sedation as we were told his lungs are so weak that he might not come out from under it.

Of course we have many concerns - after all - we are going out into the "Great Unknown" but not QUITE so unknown since you wrote "THE BOOK."

Please, all of you who read this forum, hold us in your thoughts for a positive conversation with the Dr.

Susan
 

barbara

Pioneer Founding member
This will not be a sales call

Susan - Since you are referring to the clinic where I got treatment, I can assure you that the call you receive will be anything but a sales call. I urge people to prepare a list in advance because the doctor is so enthusiastic that he will tend to veer off into a very heavy discussion of stem cell theory and how the treatment works. This is good, but you also have questions you need answered that are normal for any potential patient or caregiver to ask. The doctors that we have had experience with are very caring, intelligent people. Believe me, if the FDA were not so far behind, they would be putting their knowledge to use in the U.S. You can have all the time in the world to think about it. I stewed about it a few days and then just said I was going for it. Being one of the first, I had no one to talk to about it, but Jeannine felt the same way - that we were either the bravest or the stupidest two women there were. We had to trust this doctor because we had no other choice. I do not think you will be disappointed. Also, sometimes he does run a little late on his calls, so do not panic. He does not cut you off, so he may have run long with someone else. I hope this helps. Also, this doctor is recommending an antibiotic that a lung patient takes two days prior to treatment and for 8 days after. It sounds like this would be a good idea for your husband and I would urge you to bring that up with the doctor when he calls. I think from reading our book you will understand why.
 

Susan

New member
Thank you for the info

Appreciated so much your info of what to expect on the call from the Dr. I am glad he takes the time to discuss any issues you might have and does not try to hurry to get off the phone.

He may be a LONG time with us! HA!

Thanks again and will be in touch as soon as we know more. Of course, our situation may not be of interest to anyone else as everyone's case is different.

The only thing that may set us apart is that we have umbilical blood and cord in a bank from a recently born grandchild (Howard's son's son) who was born in June, 2007, and we will have access to that if we need it. Don't know if it will make a difference as from what we understand, once the cells are separated, one batch of cord blood cells are the same as all others? Are we being naive??

So much to learn but have come so far already, thanks to all of you on the Forum.

Susan
 

barbara

Pioneer Founding member
It's of interest to most of us

Susan - I think most of the people on this forum would have an interest in hearing what he says about the cord that was saved and also about the number of stem cells that will be given. Everyone's condition is different, but in a way it is also the same. Does that make any sense? If you do not mind sharing, you will have an audience. Also, take notes. I am sure you will, but there is so much to be discussed that you won't remember everything without some notes.
 

rosech44

New member
It's of Interest to most of us

Yes. please do share any and all info---I am extremely interested--

thanks in advance--Rose
 

Susan

New member
Conversation with Dr. F.

Just spoke with Dr. F. today and he called on the minute of 12 Noon as promised. He did share a lot of information that had been covered on this forum as well as some additional info - such as that no matter how many stem cells you get, they will continue to divide and grow once in your body and begin to "do their work."

He said he could not answer the question about the difference in number of cells for B & J and what L got. He said he thought there was a misunderstanding about it???

When we asked him about using "our" stem cells from the new grandbaby, he told us to "Save those for that Grandbaby - he may need them someday" so the thought that ours might be better suited for Howard seemed a moot point.

We were told that it would take 4-6 weeks to prepare the cells. We were concerned that if we made an appt. and then had to change it if an emergency came up that we might not be able to do that, but were assured that if we needed to, it would not be a problem.

We were also told, that if we contacted them in Administration, they could make arrangements for O2 to meet us at the plane in San Diego, provide us with it throughout our time in CA and MX and only have to relinquish it when we boarded the plane from San Diego.

We will still have to have a portable unit during our layover in Houston but knowing they will provide it when we get there is a big load off of our minds.

We plan to use the O2 on the plane for both legs of our flight.

We asked what was the lowest FEV1 rate patient they had treated and he said 12%. (Howard is 14%) so that made us feel better also. He said some patients (not necessarily COPD) arrived bedridden. (I have no idea how THEY made flight arrangements) but I guess there are ways to handle even that.

All in all, we felt much better after the phone call and will be following up with a call to C. tomorrow.

More back to you when we learn more.
 

barbara

Pioneer Founding member
Your phone call sounds productive

Hi Susan - Don't you wish all visits to the doctor were that punctual? Sounds like you had a good talk. The reason he said that about your grandbaby is that with umbilical cord stem cell therapy, the blood cells are not used, just the stem cells, so no match is required as it would be say for a bone marrow transplant. Also, the gentlemen who had the 12% FEV1 sadly passed away a few weeks ago. He was terribly ill and bedridden. A group, including the doctor you talked to and the owner of the company, were all in Guatamala for the treatment. He had severe emphysema. This man was responding very well to his stem cell treatment. He then had to have prostrate surgery and he had a heart attack during that surgery. This is very sad, because the stem cell treatment was working and the whole family had high hopes. Nassin was at 11% FEV1 when he had adult stem cell therapy in Argentina. He was 77 years old then. I should say young as Nassin is a jetsetter first class and buzzes all over the world. That doctor is going to be treating a group next week in El Salvador. Some of our forum members will be getting treatment at that time. These are really wonderful, caring doctors who will do such things as this. The stem cells are amazing in that they can help even those that are too ill to get out of bed. There are medical transports that will transport these people to the clinic. To me, I am happy that there is treatment available, but I also get upset thinking how very ill people have to travel to distant places to get a very safe treatment that will undoubtedly save their life.
 

rosech44

New member
talked to dr.

Susan and Barbara----

Again, a big thanks for all the info---I especially liked learning that the cells would continue to divide and grow, that is very encouraging---I'm sad for the poor man, that passed, and his family----another reason for not waiting to long---If I remain seated and inactive my 02 stays around 94-95--if I get up walk to the bathroom and back, it drops to 80 or less, that's on 3lpm 02---I think it is time for me to go--we have to see if we can borrow the money before I contact the clinic---Don't want to get my hopes up, then find out I can't get the money--- if I go we will be driving from oregon--We have a Honda odyssy van, very comfortable, and has already made 2 trips to see another Dr. in Mexico--near Yuma--- I am a Lincare patient , they have offices all over the states, including San Diego--I will try to get an inogen one from them, it is excellant for traveling, tho not strong enough to run a bipap, or c-pap machine--- They do not like the Inogen one, taken into Mexico tho---Another thought is, passports--my understanding is, they are not needed until jan. of 08---so I want to go before then, as it takes a long time to get a passport--
What info do you have on the need of passports?????

hugs--Rose
 

barbara

Pioneer Founding member
Passport thread

Hi Rose, Jan posted the passport info back in June here on the forum. You are correct in that in 2008 passports will be required for border crossings even. Since, this is going to cause a big jam up at the passport office, if anyone plans to go out of the country in 2008, you should apply at least 3 months in advance. To find out on this forum, if something is posted on here, you can go to search and click on and then just fill in the key word you are looking for. I did this and it brought the passport thread up for me. By the way, if you wear O2, you might want to take it off for the passport picture because passports are good for ten years. I don't plan to be needing O2 at 10 months after treatment, let alone 10 years!
 

Susan

New member
You and I certainly agree on the fact of how difficult it is for even folks like us who are mobile (relatively) in comparison to others who are bedridden to find treatment options.

It is a daunting problem.

We were told today that the procedure is such a simple one that it conceivably could be done in a local doctor's office in a very short time and at a reasonable cost, but that US laws restrict the performance of this procedure. WHAT A SHAME!

Nassin, Barbara, Jeannine, Larry, Nelson, Rose and all the others (forgive me if I left anyone out) are pioneers, in the true sense of the word and your experiences have made it possible for the rest of us to have hope.

Ed's recipes will sustain us through our trials - LOL.

Howard's ancestors settled in Nebraska and we have copies of letters telling about their hardships and traveling into new territory and blazing the trail for others to follow - covered wagons, Indians, blizzards, etc.

I think this is where we are in stem cell healing. THEY (Howard's ancestors) SURVIVED. SO WILL WE - AND ALL WHO CHOOSE TO FOLLOW!

We feel fortunate to have learned of this clinic, even though for us we have a whole continent to cross to get to it, then get transported to another country.

Please forgive my ranting.

S
 

barbara

Pioneer Founding member
Don't need to feel bad about ranting

Some people are actually disappointed that there isn't more to the procedure than there is. They can't believe it. Even Nassin who had adult stem cell therapy which is a little more involved didn't have any trouble at all. He said it was very simple. You are right about the umbilical cord stem cell therapy. It is so simple that it is absolutely insane that people are having to travel long distances to receive this therapy. Most people are ill and traveling is very hard on them. As most of us know, COPD is a horrible disease and is the 4th leading cause of death in the U.S. People are dying because this treatment has not been made available to them. It is our hope on this forum to get the word out. Many people have never even heard of it or think that every stem cell therapy is done with embryonic stem cells and that President Bush has put the kabosh on it. Other countries face similar obstacles. Thank heavens that some countries are more progressive and are allowing treatment. I feel very lucky to be a Pioneer and I hope that what we are all doing here is paving the way for others in the future to not have to go through what we have done. I did find it refreshing however to not have to fill out mounds of forms and make appointments for upteen follow up visits. One of the biggest obstacles to getting treatment here in the U.S. is that when we are well, we aren't going to need all the drugs. The drug lobby is huge and they have a lot of influence in the U.S.
Also, I think you are referring to our book when you said Ed and his recipes. That is actually John, not Ed. I think now that you have given Ed a nice compliment, he should give us some good stem cell diet recipes. Surely, he should have some seeing that he has had treatment twice for his MS. He is doing very well by the way. I had an e-mail from him this morning.
 

rosech44

New member
susans post

Susan----

I appreciate being linked with all these wonderful pioneers, but, alas--I am just like you, a junior member----
I intend to change that just as soon as is humanly possible----lol
Barbara, thanks for your input on the passports--I have the application, and will fill it out, but know it will be bogged down for months--I do not intend to pay them big bucks for doing something they should do anyway---I guess if you want special treatment, you pay the money and they get you thru,--isn't that just as American as you can get----

I fully intend to have the treatment before Jan. 2008~~~~anybody want to buy a house?? LOL

hugs---Rose
 

Susan

New member
Apology

Thank you Barbara for the information.

I sincerely apologize for crediting the recipes to Ed instead of John. I hope you will both forgive me.

John, when you do finish that cookbook, I would love to have one. If you have it published in print form, a SIGNED copy would be great.

Also Barbara, Howard regretted that I did not ask for a signed copy of your book when I ordered it. I don't know if you and Jeannine might consider signing the insert that you put in it and then we could attach it to our book?

If so, we will send it with sase to you and then you can forward it on to Jeannine and then back to us. Please advise.

Susan
 

barbara

Pioneer Founding member
Susan - You are such a jolt of kindness in the morning

Of course we will do that. I will sign one here and send it to Jeannine. That way she can forward it on to you and it will save one leg by you having to send it back to me in the first place. Whew, that was quite a sentence. Also, John is usually not one to worry about much except for his olive supply, so I know he won't care who you credited. Ed would have been a little surprised to find out that he had given us some great recipes, however. I think if you are waiting for John's recipe book, you are going to be waiting for a very long time. He is still in the kitchen testing and with the ingredients he uses, he forgets each night what recipe he has tested and has to start over again. I am glad you enjoyed our book so much.
 

Susan

New member
Oh what a wonderful sense of humor you have!

Thank you for making my faux pax a little less embarrassing.

It seems that we, too, will join the group of drooling over olives from afar in a short while.

Thank you for all your kindness to us. We look forward to getting those signatures. If Jeannine needs our mailing address, just let me know.

Susan
 

barbara

Pioneer Founding member
Anyone on this forum is Pioneer material

Rose - I think you are a Pioneer. Maybe, not one of the original Pioneers in our group, but you are by all rights a Pioneer to have even joined this forum. Junior member simply is in the forum format and I guess it changes after who knows how many posts to something else. I really don't know what it changes to. We would like to keep everyone's signature updated however, so if any of you do get stem cell therapy, e-mail me, Jeannine, Larry or Darin and we will add your treatment date onto your profile. This helps new members see who has already been through what they might be considering. Larry, Jeannine and I are moderators and Darin is the administrator of this forum.
 
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