Little things add up

[barbara]

I was thinking yesterday about what Ed told me once. He said everyday was like Christmas to him now because each day he got a new little gift. Ed had treatment for MS last October. Sometimes, when all I want to focus on is getting rid of my nose hose and throwing the whole thing in the dumpster, I forget all the little things that have been happening. I posted earlier about not needing but one pillow like a normal person. I can lie on my back if I want to (hadn't been able to do that for years), I can take my O2 off to do short errands and not even feel the slightest bit winded. I don't leave it off too long as my sats still drop. Before, if I took it off and went to do a small task where my 50 ft. hose wouldn't reach, I would be positively gasping when I got it done and back to the hose. I would be so uncomfortable and irritated that I couldn't do anything without O2. The portable drives me nuts too. I call it my whiney baby every time it tips over. It is always getting twisted around my purse and in the way. I am ever so grateful that O2 is available to us as it didn't use to be and life would certainly be much worse without it. Still, it is time to part company and the sooner the better. That is why I decided, I must focus on those little things while I bide my time waiting for the big step to freedom. I can eat without feeling uncomfortable. I have actually lost 10 pounds and I am eating more, but I am moving more too. I can go up and down the stairs and not have to dream about installing an elevator in my house. I don't have that ache in my stomach that I always had from SOB. I don't have SOB. I have tons of energy. I was not bedridden before treatment, but I was surely not doing very well and it seemed like I just slowly got worse. I decided to take a chance and I am glad I did. The entire experience changed my life because I have met so many wonderful people in our Pioneer group. I don't even know what many of them look like, but they were there for Jeannine and me when we went to get our treatment. We were there for Larry and we will be there for all the rest. That's another little thing that adds up - my new friends. I also met Jeannine who is now like a sister to me. I will keep thinking of those little things and add them to my list
Bending over is a breeze by the way. The only thing I have noticed that I really cannot do is vacuum and dust and stuff like that. I just don't think that ability will ever return. Every time I think about housework, I get weak. I just don't understand what causes that, but I can live with it.

 

[stemcellpioneers]

Yeah, You were always allergic to the vaccuum. I think that problem isn't related to COPD but I think you also have NOVAC.

Just kidding of course. Glad to have you feeling better. It's exciting.

 

[barbara]

Novac

I am so glad that you have finally given a name to the awful affliction I have that doesn't allow me to vacuum. Do you know John from New Jersey? This type of comment is usually what I get from him. I have noticed that this could be an inherited type of problem because I know I have never seen you near a vacuum. Thanks for the great forum Darin, Your mom

 

[anney_uk]

anney_uk

Darin posted to our COPD forum giving details of Barbara's progress and experiences with Stem Cell Therapy.

Some people feel that this is an 'advertisement' - could the Pioneers please reply to these posts as we are all concerned on these points:

I see your "mother" is a moderator of your forum. It is also funny that all the messages read like advertisements rather than questions or answers. Your "mother" also seems to be one of the two people that are writing a book about stem cell treatments to promote it or their book or whatever.
Frankly, I think this is a commerical advertisement of what may very well be a scam.

At first I really believed this might be true but it seems her friend said she had it in Tiajuana. I live in CA and there have been no such thing done here. Noone at the recent meeting in SF of over 15,000 Drs, patients or technicians has heard of this happening. Someone, somewhere would know something. Why is it you are the only two people talking about on the whole world wide web. I wish it were true but I think there would be some really big hospitals doing it if it were allowed.

I am not one that could tell one way or the other whether this is real. However, after reading all of Darin's post today, I am wondering why there is no defense of the comments about a hoax. It was pointed out on another forum that initially it stated 'this is not a hoax'. Then the question rose as to why would you even say that.

It would be appreciated if you would post on our COPD forum, there are many of us who would like to know.

Thank you,
Anney

 

[stemcellpioneers]

anney_uk, which forum is yours? I would be happy to comment on your forum. We make ZERO money on this forum. We just had a wonderful experience doing what we did. I actually probably lost money doing it. I took off work, drove her in a motorhome down to San Diego and on April 5th she had the treatment done in Tijuana. Why am I posting on other boards about it? I feel if we don't get people interested in this type of program it will take years longer for the US goverenment to realize it's importance. Yes, she is a moderator cause I can't be here all the time. I think it's an awesome program. She and I cannot comment on how it works for other issues, but COPD we sure can. I am a witness to the whole thing. They say it can take months. She only had the treatment on April 5th. She went from a 4+ to if they had less than a 1 on the nose hose she would use that. I am totally impressed. Time will tell if it will be a complete cure but the quality of life she was given back was fantastic. You will always get the people who think what you do is a scam because it isn't US endorsed. These are the same people who take all the forums time up whining about how they feel instead of being productive and looking for something to make them feel better. I am in no way endorsing a company or companies on this board. Even if we have sponsors it is a sponsorship not an endorsement. We can share our experiences and that is about it. If its a scam then my mother and I got scammed also. Thanks again, Darin

 

[anney_uk]

anney_uk

Thank you Darin, I appreciate your replies both here and on our COPD forum. I felt it was important that you did address the questions that were raised. A lot of us are very interested in the StemCell therapy but unfortunately, the cause has not been helped by what has happened at the clinic in the Netherlands. No explanation or information from them.

Here in the UK I am battling to receive the Trans Tracheal Oxygen so I do understand the frustration of authorities being so far behind the technology that could help us. Wait until I pitch Stem Cell Therapy into the Equation !

I won't give up on any count and I shall continue to follow the progress of the Pioneers with great interest.

Regards
Anney

 

[Pat S]

Anney, what is your COPD forum? I would more than gladly post to it if you would tell us which one it is. As for this forum, Barb (who is self-admittedly NOT a computer genius!) had her son, Darin (who IS a computer genius) start this forum in an effort to expand our group. Prior to this we have just been corresponding back and forth in e-mail fashion making our in boxes quite tedious and limiting our experiences to just us. Some of us still are just corresponding in e-mail fashion as we're a bit slower in learning these new technologies!

Stem cell therapy is not performed in the USA yet as it has not been approved. Therefore, you won't find any treatments listed as performed in San Diego or any other city in this country. The contact we have is for Tijuana. We all feel that with this forum we could reach more people who may be interested in receiving this treatment, or just who had questions. We have people who have received the treatment and can answer many of those questions. And look, we already have someone from the UK in here. I have read articles announcing that doctors in England are beginning work with stem cell therapy, but you won't read about any US doctors doing the same.

By the way, Welcome, Anney!!!

 

[Jeannine]

anney_uk

It's really a shame that we are being accused of being scammers. What exactly have we been promoting on here?

I see no advertisements, no snake oils being sold either.

Have you read the article about the clinic in Argentina where 3 people who had adult stem cells are now improved and going without oxygen? Well one of the men who went there is a member of this forum. It is a completly different clinic than the one Barbara, Larry and I went to.

Well when the man who went to Argentina tried to inform others about the success of his treatment he was also accused of being a scammer or a hoax and his postings were banned. Meanwhile , this man is without O2 during the day and his FEV1 has gone from 11% to 17%


He had nothing to sell either and was trying to help others who suffered like he did.

Like I said, there is hope - don't turn your back on it.

 

[barbara]

Anney

Hi Anney,

I guess I'm the last one up this morning. I did post on the COPD Intl. forum this morning. I appreciate you bringing this to our attention and I hope that the non believers can at least open one of their eyes partially and continue to follow our progress. One of our forum members, Larry, lives in California. No, the clinic is not in California. The office is in California. It is not in the yellow pages. His doctor is very interested in following his progress. These are little things that we have accomplished on our own. All of us who have had the treatment are willing to give our time to letting other people know about it. These are not paid positions, but we feel as true Pioneers we owe it to others to know that something is happening out there to help people. It's just not COPD. There are a lot of diseases that were considered not treatable that are responding to stem cell treatment. We are not doctors and we are not giving medical advice. As I have stated before, stem cell treatment as it stands today is not for everyone. You don't fill out thousands of forms and have to have hundreds of tests done before you can have the treatment. Some people are too frightened if they aren't asked for their life history. I know how my life history would have ended if I didn't get the treatment and that is why I took the plunge. I am so glad to have your interest Anney. Keep it up!

Still being groggy, I didn't answer why I was a moderator. As Darin mentioned, he has another life. Jeannine is a moderator and Larry has agreed to be one. The problem we have on the COPD issue is that there are very few of us in the world who have had the treatment. This limits the number of us that are available to moderate this forum. I think people want to hear how we have benefited from the treatment and not from someone who claims to be an authority on stem cell treatment for COPD when there really is no such thing. This therapy is too new to have years worth of statistics for COPD patients. The clinic that closed in Rotterdam was caught up in political issues from what I heard. As far as the person who had an adverse reaction there, so did I in Mexico. I got over it in 15 minutes, but if I had been elsewhere, some official would have probably wanted me in the hospital for a week for observation and then would have shut the clinic down and suggested I bring a lawsuit. I can understand this if someone is doing something outright dangerous, but we cannot allow hysteria to negate something that I feel will be the medicine of the future. In my opinion, we will no longer be treating diseases, we will be curing them.

 

[Darin]

anney,
Thank you again for participating. I too am upset at being called a scammer. For example I have a large following at another forum www.arboristsite.com It is the largest arbiculture/tree site on the internet. I get over 25 million hits a month on it. If I wanted to risk my reputation on scamming somebody. I would be Guido from Long Island, NY. It makes no sense to me. I think we should use Larry as an example. He has had the treatment and he is in the baby step stage. I think he had his treatment on May 7th. My mom said she didn't start feeling a ton better until 7 weeks after. Having this forum has helped Larry monitor his progress. Both Barbara and Jeannine can tell him what the possibilities will be for his ups and downs. It hasn't been all gravy from J & B. There has been some nasty things they both had to endure, but they were encouraged by Ed Johns that its the "cocktail" changing your lungs. I was worried too, but Ed was right!! Your body has to change for the procedure to work. If it didn't, they would still be SOB constantly.

 

[barbara]

Treatment costs vary believe it or not. Sometimes they can even be negotiated. Are you looking for treatment for COPD? I didn't see any information on you in the members list, so I am not sure how to reply. For COPD, depending on where you seek treatment, the costs can vary from $12000.00 to $27000.00. I paid $15730.00. Most prices include hotel and transportation from the hotel to the hospital. Some include pick up and return to an airport if you fly. I think it is interesting to note that when I had laser eye surgery in the 80's before it was legal in the U.S., I paid $4000.00 per eye. Since I had two bad eyes, I had to pay $8000.00 plus the cost of getting to Canada and I had to take my son because I couldn't see anything for days afterward. All that is changed now, the procedure is much easier and I have seen costs of around $700.00 per eye where I live. When more competition enters the market, the costs will probably decrease. If you see someone saying it is a few hundred dollars for cell treatment, it is not for stem cell treatment, but more likely live cell treatment that comes from animals.

 

[barbara]

As Larry pointed out, we are all different in that we have different degrees of COPD. The 7 week mark might not be the magic week for him. The thing in general that we have all noticed is what Jeannine and I name the Impatient Syndrome. For some reason, I think we all thought we would be running laps around the track with no O2 within a month. That just doesn't happen. The engraftment process takes time. Like I have said before, it's those little things. I used to have to plan around my O2 needs. Now, I can set the thing on 1lpm and go out for a lot longer with my portable then when I used to have it on 4lpm. I have to really think hard to remember when I last used my Advair or Atrovent. I am just not in need of it like I used to be. As far as having some new breathing tests done, I have opted to wait for about 6 months. I just had them before I got the treatment and I think in order for things to begin showing up on the breathing test in a real positive manner, I will give it 6 months. My doctor is well aware of the treatment I had and this is not a problem. I continue to use my lung exercisor and recommend it to everyone who has COPD pre and post stem cell treatment.

 

[anney_uk]

anney_uk

Pat S - Have you had the Stem Cell therapy? Also you mentioned a UK member, was that one who had therapy or just joined this forum?

I am disappointed in the news of the Rotterdam clinic but have heard from a doctor who is the head of a Bio Science company in the UK who wrote:

"At present we are conducting our safety trials. This will take another 9 months. We then hope to advance to clinical trials with our colleagues mid-end 2008."

Anney

 

[barrybrooks]

Scepticism

I would just like to remind all of your members that there are bound to be sceptics for any new treatment or news of any type. Remember the scoffers that said global warming was stupid. Well, you people are on the very threshold of exciting new technology and discovery. You are in a sense guinea pigs and a lot of us are sceptical until things are proven to be true. There are even doctors that treat every new discovery with disdain and try to keep everyone and everything the same as before.

So be not disheartened by the fact that there is some scepticism, just prove them wrong. Keep fighting and keep sharing any news, good or bad. And even though I may be stepping on some toes I invite you to join both websites to exchange information and thoughts.


bbrooks43@sympatico.ca Hugz, as ever, Barry.

 

[barbara]

Thanks for the cheer Barry. Don't worry, most of the Pioneers have been through the wringer quite a few times trying to spread the word. What is nice is that we now have our own forum to discuss stem cell issues. Unfortunately, I do not have the time to monitor all the forums and I don't think Larry or Jeannine does either. It doesn't take one of us that has had the treatment however, to carry on a good argument for stem cell therapy. By all means, take the bull by the horn and feel free to post on any other forums that will have you. Many of the forums will not let you post about stem cells. Anyone that wants to discuss stem cells in my opinion and is shut out of a forum because of it, is a true Pioneer. It boggles my mind that some people actually enjoy being ill apparently as they do not want any new information or ideas given to them. They don't need to choose stem cell therapy, but at least come to an informed decision instead of reading only articles on companies that have conned people or treatments that are not really stem cell treatments at all. If you have a doctor that won't even discuss alternative treatments and this bothers you, my advice is to switch doctors. You should be in charge of your own health and I wouldn't want a doctor who told me that no stem cell research is even going on in this country. This is some of the info we got from the people on other forums. I had a veterinarian once who said my cat had a fatal disease and I should put him down. I went to another vet instead and the cat lived another 4 good years with an innovative treatment from the new vet. If my doctor had said there was nothing else he could do and then condemned me for trying stem cell therapy, he would no longer be my doctor. I do hope these people who are so frightened by new technology will take it upon themselves to try to learn more. This isn't some elixer someone is cooking up in their basement, it is quite possibly the way most disease will be treated in the future, I believe.

 

[barbara]

Spaced out my O2

I couldn't get my mom to answer her phone this morning, so I drove over to her house which is on the next block. She had fallen on her deck. It never even dawned on me that I had gone over there with no O2. My sats still will drop, but I have no SOB or gaspy feeling to even remind me that I am without the O2.I have done this a couple of other times, just absentmindedly taking off and forgetting the whiney little baby as I call my portable. It turned out okay, I had to call my son to get her up, but she is fine. Just slipped and couldn't get back up. This is just another little thing that adds up. I often wondered what would happen in an emergency situation if for some reason I was to run out of O2. I now have the confidence to know that nothing would happen. I would be just fine until I could get some. My doctor where I got the treatment has advised me that he was going to work with Jeannine and me to help get us off the O2. This won't be until he returns from the International Society for Stem Cell Research meeting in Australia that he is attending. I am anxious to see what he thinks he can to do accomplish this. Of course, I will let you all know.

 

[barbara]

10 week update

I have had several personal inquiries asking how I am doing. The most significant thing I have to report this week about my health is that I am now getting readings of over 400 on my peak flow meter. I even had one 550. I do not have a fancy kind, just the one where you blow as hard as you can and it registers a number for you. I used to get 200-250 and if I was having an out of this world day closer to 300. I try to check it on a regular basis at about the same time morning and night. I continue to have NO SOB and my lungs still feel like the air is moving in and out like never before. This is only a small thing to report, but it is better than what I might have had to report without the stem cell transplant. I might have had to say I was trying to get readings of 250, but wasn't able to any more. Despite another week of negativity from strangers that certainly have an odd agenda, I continue to feel that I did the right thing and have no regrets. Barb

 

[stemcellpioneers]

I caught her walking out to the mail box today at my grandmothers house.....without the dreaded nose hose. It's the little things that make me happy for her. The thing that I don't know if she realizes or not is that her attitude has been much better in general. Mom, don't worry about the people that have a different agenda. You are doing this for free and the stress that they cause you isn't worth the money. HAHA. I tried the public service approach and I wanted to strangle them by the time the night was over. You have your place in this world and it's helping other people. If they don't want to be helped then leave them alone. If it takes more than 2 minutes of your time to try to convince them, then they will never be convinced. I remember when "The Stem Cell Father" wrote you an email about it. You were on my butt about a passport within the next ten seconds of hearing it. That is a pioneer to me!! I thought you were nuts at the time. You still may be a little nuts to want to deal with some of the people who call you a scammer and a hoax, but I guess when you help that one person, it washes away those thoughts.

 

[Jeannine]

Darin

Very well said! Thank you. I've told your mother more than once that you're one hell of a son.

My husband insists I am improving every day and that I am too impatient to even notice. For example, today I walked around Target for an hour and a half with my O2 set a 2LPM and stayed at 95% and felt fabulous!! I could have walked around even longer except we had to meet some relatives for dinner. I can often sit around for several hours without my O2 now. I hardly use my inhaler because I rarely get SOB. I still desaturate down to 85 if I walk around without my O2 (I used to drop down to 80% so it is an improvement).

I keep hoping to see more and more changes but I've had two colds since my stem cell transplant so I suspect this has slowed down my improvements - at least that's what I'm hoping.

 

[barbara]

Jeannine - I have told you more than once that you have a very smart husband. I am very impressed with your progress. I was looking through some of our old e-mails and we always seemed to be having a bad SOB day. I can hardly find an e-mail from me that didn't complain about it. We have made so much progress. Remember, when we were dreaming about owning ranch style houses? Then there was the day I asked you what your flight number was when we were going to meet for our treatment. You were too tired to go upstairs where the information was. We were both tired and SOB. And if we weren't that, we were SOB and tired. Over and over again. If you are suffering from too much Impatient Syndrome* again and not giving us the full skinny, then I think Tony had better take over reporting your progress to us. I had a good O2 day myself. I am finding that I have short little periods where I can maintain the low 90's without O2. It comes and goes.

*Impatient Syndrome is a term we made up that describes how impatient stem cell treatment patients get while waiting for improvements