Introduce yourself

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John

Pioneer Founding member
John in NJ

Hi all. Some of you already know me and abuse me. LOL. I'm 59 and have known I've had Emphysema for about 4 years. I'm pretty sure I was told I had COPD 10 years ago but had no idea of what they were talking about. My FEV1 is somewhere around 30%. Good luck to all that come to this site.
John
 
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Jeannine

Pioneer Founding member
John

Wait until Barb sees what you wrote about abuse. Talk about setting yourself up. :p:p

Did you check out my t-shirt photo?
 
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linda/mi

Pioneer Member
Emphysema&alpha

I'm so happy to hear that both of you we're tested for Alpha1. I'm so puzzled with all of your family history. I'm an Alpha. Non smoker. My grandmother had Emphysema and and never smoked. If anyone would like free tests kits and CD's on Alpha1, I can have them sent to you just send me your address.
themcmanns@aol.com Put Alpha test kit in the subject. The tests are done in a state of the art Lab. Your Doctor should receive the tests results in about 5 days. Test and the kits are FREE! Linda/Mi
 
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barbara

Pioneer Founding member
What color are John's eyes?

Jeannine - I am anxious to take your poll as soon as you set it up as the administrator is going to help you do. I think you do need to add a category for red now that John has joined the forum.

P.S. For those of you that are new members of this forum, please don't be offended. We all really love John and his sense of humor is out of this world. We all need laughter to keep us going and believe me, he can provide it. He is a member of what we call the Pioneers. This is a small group of us that got together on the internet when we weren't allowed to discuss stem cells on other forums without being ridiculed. This forum is a gift from my son, Darin, to the Pioneers and to all others who are not willing to take "there is nothing else that can be done for you" as an answer.
 
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lraynak

Pioneer Founding member
Hi Allen,
Glad you've joined the place where we're all seeking better therapy to alleviate this malady. I am the third one to get therapy from SC Biotherapy in San Diego, CA. I'm in the fourth week and have witnessed some small improvements. Good luck to you, hope you find the answers you're looking for.
 
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barbara

Pioneer Founding member
Larry's fourth week

Larry - Are you noticing less shortness of breath? I think one of the first things that hit me was that all of a sudden my lungs seemed like they had expanded and more air was moving in and out. I looked in my journal and at one month, I was able to workout on the treadmill more. I was feeling pretty good and I was noticing that my sats were all over the place. I still was getting SOB, especially in the morning. How does this compare to what you are experiencing? You never did get any flu like symptoms did you?
 
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linda/mi

Pioneer Member
Linda/Mi

Hi, I'm Linda. I'm 56 years old. I was diagnosed with Alpha 1 Antitrypsin Deficiency and Emphysema three years ago. I am getting augmentation therapy once a week. I'm am very interested is stem cell research. Will they treat Emphysema & Alpha 1 Antitrypsin Deficiency? I play golf. I really enjoy my grandchildren. Linda
 
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lraynak

Pioneer Founding member
Linda,
I would hope there are possibilities for the improvement of COPD for what ever was the cause. Stem cell therapy is a new area of treatment, although not approved in this country, we have found one company that is a american one operating in California but doing the treatment in Tiajuana. I'm the third one of our group to have had the IV procedure. Barbara and Jeannine went about a month before me and are showing good improvement as well as I, although not as much, as them. Thanks to Barbara we have this new forum.
 
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dsigler924

New member
Dave/NH

Hi,

I'm Dave from NH. I live about 10 miles from Jeannine, but we've never met.

I was diagnosed with E in 1996 but my PCP never bothered to tell me. I thought it was chronic bronchitis because that was all he ever mentioned. My wife found out by accident in 2001 when she snuck a peak at my medical record and asked me what COPD meant.

My FEV1 was 18% and my lung capacity 10% as of 4 years ago. I don't know what it is now. I'm on 3LPM O2 24/7 plus 4LPM when walking.

I'm 59, widowed for 2 years, at which time I started my downward spiral of giving up trying to go on. It's both grief and tremendous guilt about what happened, or rather what didn't happen, the day before my wife died.

I can't afford the treatment (bankrupt in 2006), nor do I qualify for the loan Stem Cell Biotech arranges with Capital One because my income is too low (SSDI) and I'm loosing my house (foreclosure, see bankrupt).

Sorry to be a bummer, but as the saying goes, 'It takes all kinds.'
 
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anney_uk

New member
Dave, I am so sorry to hear of the sad and difficult time you have been having and I do hope there will be some way you can have the Stem Cell treatment.

Barbara and Jeanine, I am thrilled at the progress you are making with the treatment and want to discover if it is available in UK or France perhaps. This definitely seems the way to go with COPD which I have had for many years. I am on oxygen 24/7 and very very sob most of the time. Congratulations to you both for being pioneers and also for this website, so generously donated by your son.

Every success
Anney
 
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saljon-ma

New member
stem cell research

good morning.I'm new,too. I'm 60 yrs old and have copd diagnosed in'93 but didn't take it seriously until '97 when I gad to give up my job..It took me another 3 years to totally give up my cigarettes..I too was on wellbutrin for a few years even after I gave up the butts..I think thats what got me thruogh that part..it's only been the last year and a half that I've been on 02 (2lpm sitting,3 walking). I do go to a maintenance excersize class 3 days a week and that keeps me going, too. I think I'm declining because my breathing seems to be more difficult and the usual things( increased prednisone) don't seem to help..however,I have alot of faith and I am on lexapro so my outlook is pretty good. And, I have a wonderful,supportive husband that does everything that he can for me. I do believe very strongly in the stem cell research. there was an article about tissue regeneration of a bladder done on an 11 yr old girl last year which tells me it can be done. The University of Vermont is going to be involved in tissue regeneration which is where I read about it to start with. I didn't realize it had actually been done anywhere. I also believe I am to be part of some breakthough technology for copd ( at least, I really want to be). So, I have an appointment on Thursday with EASE trial coordinator. This is for airway bypass trial being conducted at Beth Israel Deconness. I can't afford to do the stem cell injections.I just hope it doesn't take too long to get started in this country
 
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lraynak

Pioneer Founding member
Hello,
You have come to the right place ro learn about Stem Cell threrapy. This new forum is beginning to grow by leaps and bounds reflecting more of the national estimate of COPD patients that will run into the millions. I recently did have the stem cell therapy (a month ago) and am beginning to feel the difference but still a ways to go. We should all work to getting our government more involved in helping with this disease.
 
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lraynak

Pioneer Founding member
Barbara,
I am better. Since I lowered my expectations of recovery deadlines I am improving which leads me to believe it is impossible to make any comparisons with your progress, Jeannines or mine as the data base is entirely too small. Even Nassin's case with his bone marrow procedure adds little to the mix other than to say there are different ways of getting it done. I believe I will overcome this disease and live well with more normal breathing. I know I have a farther road to haul as I'm older and more out of condition but my attitude is it can be done.

Friday of this week I will meet with my pulmonologist to chart my progress as a test case for him. There is much to discuss with him as I've also been in communication with Dr Feinerman via e-mail. He is in SE asia at some Stem Cell meetings and won't be back till July. He wants to change the meds. I had been using Xopenex abd Aerobid puffers with greater than 4 times frequency just to relieve my SOB. I didn't like that and called the Dr and his stand-in said he would relay the message. In the mean time I used my Foradil and Spiriva and as a result, didn't use the puffers for a day and a half after I breathed with an ease that I found amazing. I haven't received my "Power Lung" yet but look forward to adding it to the schedule with daily recordings.
 
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Jeannine

Pioneer Founding member
Fellow Pioneers

I have been in contact with Dr Weiss at the Univ of Vermont for the past three months. We've been emailing back and forth about my progress. He is extremely interested in my progress and he even left a message on my phone yesterday while I was at work indicating his interest in speaking to me. I am hoping by being a guinea pig for an AMrican unversity iy will speed things up for FDA Approval.
 
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lraynak

Pioneer Founding member
Jeannine,
The more we get the universities and medical people involved in this the better. I hope to generate some interest in this at the Stanford University and the VA administration.
 
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kygal

New member
Small intro

Hi everyone,

I'm so glad to see this forum started....thanks Barbara and Jeannine.:) A little about myself....I'm a caregiver to my husband, Doug, who was diagnosed with COPD in 2001. Like most people, we didn't think a lot about it and continued on our merry way until last year when Doug started getting sick more often and VERY SOB. It took us a year to finally get in to see a respirologist and at that time, he was so sick his FEV1 was 13. It's only been back to 15 and as low as 10. He's fought 3 different bacterial bugs in 3 months, pseudomonas, a type of non-contagious TB and now a pneumonia bug, all hard to kill. He just started in an in-hospital rehab program at a close-by hospital and will be there for 6-8 weeks, minimum.

The doctors say his only hope is a lung transplant and then, only after the rehab to build him back up. He's lost over 40 lbs. in the last year and most, if not all of his muscle. They are checking into some other things that might have contributed to this but feel the COPD has caused quite a bit of it. I'm at the end of my rope with the medical system here in Canada and am VERY interested in learning about stem cell research, treatment, where to do it, how to do it and everything else.

Look forward to hearing more from others about this. Thanks again for starting this forum.

Take care,

Mary
 
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lraynak

Pioneer Founding member
Mary,
I'm Larry, one of the four people to have had the stem cell therapy.


The procedure it's self is a quite simple IV. There is a post therapy protocal and diet (common sense one) to follow.
 
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barbara

Pioneer Founding member
Companies that offer therapy

There is more than one company out there doing therapy. I feel you should think about the location and the comments that may come from this forum. The problem with some of the companies is that they are in the growing process. You can get lost in the shuffle and it is hard to communicate. The doctor that is associated with the company I had treatment at is currently out of the country. There is another company in Argentina that has had good success also, but the contact here in the U.S. does not speak good English. There are many barriers to understanding what you might expect to see in the way of improvement of any condition. They are all in the business of selling their products, I feel, and they will make claims that cannot be substantiated. This forum will hopefully be bringing us more members that have had treatment so that we may see how their lives have improved. I was told that the company I went through had done 10 COPD patients previously and yet no one has been able to verify this. I went by the trust I had in the doctor and my desire to try something that I felt would change my life for the better. This doctor is supposed to be coming on board full time at the company in mid summer and I think this will be an improvement. There is also talk of a well known doctor from the Argentina clinic coming to a central location in Mexico to do treatment. We have feelers out all over for doctors to respond if they want to present their information. I guess my thought would be not to rely on claims they make as being the sole reason for you to choose a company. Ask for the scientific evidence of how the treatment they are offering is going to work. Ask to talk to a doctor and not a salesman or owner that is not a doctor. Be cautious, but don't scare yourself out of it either. We are here to help if you need us. We hope to have a list of different companies available sometime in the near future. We have contacted these companies and are waiting for replies which as I said can be difficult. The list will not constitute an endorsement, but it will give forum readers an opportunity to contact them for more information.
 
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