Introduce yourself

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Kasey

New member
Introduction

I'm not sure where to put this so if I have the wrong place, please forgive me. :confused:

Hi Everyone,
I'm Kasey and was diagnosed with severe COPD and severe asthma in 2004. I take Advair 500, Spiriva, Prednisone, Albuterol for rescue and neb as needed, Singulair, Zyrtek. Still sob. Am on 02 24/7 since last year.

A mutual friend told me about this site and I am so excited about all the wonderful information that is here and know I will spend a long time reading and catching up with all of you.

Stem Cells are just amazing and this brings me a lot of hope. I"m not ready to leave this life yet and the fact that some of you have been blessed to have these treatments and are doing so well.....what wonderful news! God bless you all.

I look forward to getting to know you. I am in Atlanta, Ga. where we are hot and in a bad drought. Water is being restricted now. Remember back when we were all told to shower with a friend to save water? :D

Thanks for having me. I'll try to behave. ;)
 
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Bev12452

New member
about myself

Hi my name is Bev and I live in Florida I moved from New jersey 4 years ago I lived in Jersey all my life but my husband thought I would do better away from the cold and pollution and it has helped alot I am currently listed at Shands Hospital in Gainesville for the transplant but am so undecided about the surgery I don't feel bad enough for such a drastic choice in fact I don't feel as bad as the Drs think I am I have mylimitations but I can do just about what I want just a little slower I can go without o2 and most of the day I guess I don't realise how low my o2 level is I never realized I needed o2 so I continued to live and work without it until I went to New York For the lvrs and they were so amazed that i was functioning with such low levels anyway I chose not do to the lvrs and found out later that I would have probably died on the table because of the criteria that came came out after the study so now I am faced with transplant surgery and I am so worried that they may change the criteria for that after I have already had the surgery the thought of having 5 good years compared to going on as I am is scary the odds just don't seem to be in my favor so the stem cells seem to be the miricle I have been praying for I am to go to Shands in August but will tell them I need more time until I see how the pioneers make it wishing all of you the best of health and happiness
 
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Jeannine

Pioneer Founding member
Hi Bev

I was all ready last summerto be placed on a transplant list even though I could walk a mile. But I read the statistics on transplants and decided to hold off for a while. I'm glad I did. I must wanr you that we are not cured as of 90 days post treatment and I still have to use O2 for walking and sleeping. However, I feel better and can do more than I could before. I can even walk faster and not get short of breath. The only time I get short of breath now is when I take a shower, blow dry my hair and get dressed all in under 30 minutes. This used to take me an hour and I used to have to sit on the bed to get dressed and now I don't even have to think about it. I just get dressed. Keep in mind though I am using my O2 to do it all.

What you decide is entirely up to you and I don't know your current lung function. I do have one question: If they thought you would have died on the table for LVRS, why do they think you're OK for a transplant. I mean what has changed? If you don't think you need one yet then I would say you are the only one who can decide what you need to do.
 
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John

Pioneer Founding member
Hi Bev,
As Jeannine stated it is all up to you. I had begun to think about a transplant but then I thought that I would still have that option if the stem cell therapy didn't give me the results I want. That means to me that the most I stand to lose is some money. Good luck whatever you decide to do
John
 
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barbara

Pioneer Founding member
Bev 12452 Number 100

BEV - What a coincidence that you decided to post today. The administrator pointed out to me that you were our 100th member. We want to thank you and everyone else who is making this forum a success. As for me, no doubt in my mind. I would try stem cell treatment first. I used to function very well too with no O2. Sometimes my sats would be in the 40's. Didn't really realize what was going on. Then I got a major enlarged heart out of the whole deal, went downhill quickly and am now on O2 23/7. I have changed this from 24/7 because in the last couple of days, it has been driving me nuts and I have to take the O2 off for awhile. I think I am experiencing a new phase of recovery because I am doing fabulously well lungwise. I haven't been stuck with the horrible cold Jeannine caught and for this I am thankful. I honestly can say, with no doubt, that things are working. The doctor where I went for treatment says each individual is different, however he has seen some improvement in every case he has dealt with in all diseases. If you have the means, I would do what John is going to do and that is try stem cell therapy first. I am meeting with a group tonight that is planning to climb Mt. McKinley next spring. I told them to count me in.
 
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TonyinDallas

New member
my introduction

Hello all
My name is Tony Hamel aka Tony in Dallas. I have been around the COPD groups for a long time now. Somewhat over 8 years. I have been a member for EFFORTS, COPD-Support, COPD-International, Transplant-Support, Cure 4 CF and COPD and Live Cell and Stem Cell Therapy Groups.
I have gleaned a lot of information over the last number of years. I learned about my disease mostly through the internet and these groups.
I did have a single left lung transplant on Feb 11, 2001. It was rough going for a while but I made it through. My new lung never functioned as it was supposed to. It never got over 45%. It should have gone to 60 to 70%. I just had some rare complicaitons. My lung function before transpalnt was 9% of normal so at that time a lung transplant was my only option. Stem cells were hardly heard of at all. If I would have known, I would have gone for the stem cells. $20,000 is a lot better than $400,000. Shoot 2 days in ICU cost $20,000.
Well, I have had some complications and infections that have taken me back down to 25% lung function and making an effort to get relisted for another transplant.
BUT, after hearing about this group and that stem cells have been sucessfully used for lungs, I sure want more information. I have already had Live Cell Therapy in Algodones, Mexico from Dr. Diaz.
Money will be a problem. Right now my co-pays for my meds run 450 to 500 per month. My yearly medical costs are $7000 and I have Cigna insurance.
I did start a site for Live Cell Thearpy when I found out what they could do.
They do not cure but give the receipent a better quality of life. Some are outstanding in their outcome. Mine was just a little as my drugs did interfere with the live cells.
I am very much looking forward to stem cells and with a great anticipitation they will work for me even though I have had a lung transplant.
I also have a brother-iin-law that we sure want to look into stem cell treatment for his Alzheimers. He is at stage 5 and going down quickly now. I pray he can get a stem treatment quickly as he needs it more than I.
This excites me more than you know.
I have been waiting for this. I knew when I first heard of stem cell treatments, that it was going to be the cure for many diseases.
God willing, I will be able to get a treatment soon.
Tony Hamel
Keep on keepin' on
Tony in Dallas
Left Lung Transplant Feb 11,2001 St Paul Medical, Dallas, Texas
www.geocities.com/thamel5038
 
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Bev12452

New member
also like invitation

I also am havinfg problems accessing the improvements that everyone has had may I have an invitation to veiw the results on another note I like to say HI to Tony I have been reading his posts on the copd list for years and he has been an inspiration he just keeps going Bev
 
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barbara

Pioneer Founding member
Day by day assessment

Bev - all of us progress at different rates. Jeannine and I have documented our day by day progress in our book which will be available next week. Some of the changes almost slip by me that I have. Little things happen and you suddenly think to yourself, I couldn't do that last week! All these little things add up. I have been very negligent about posting on the blog lately because quite frankly, I have had my plate full. I will try to do better for all of you, but there is not going to be any rule of thumb on how a person progresses after treatment. I wish I could say, Week one - everyone will feel like this, Week two - everyone should see this happening. Instead it is a roller coaster ride and not everyone is at the same amusement park. I continue, DAILY, to make progress. I am now getting to the point where I can climb the stairs and maintain a 90 reading on my oximeter. Just last week, I would drop to 85 usually. To me, this means progress. I am still on O2, but the hose is starting to irritate me at times. When this happens, I check my oximeter and my readings are usually very good. At this point, I take off the O2 and leave it off until my sats drop. This is something I am doing more and more. That's why I said in one of my last posts that I am not on O2 23/7, instead of 24/7. I have also stated many times that this treatment may not be for everyone. You will not be filling out 6 inches of paperwork, you will not be checked every week, you will have to be willing to trust the doctor and company you go to, you will have to learn to deal with being impatient if your progress is slow. There are many reasons that a person who has any doubts should not do this kind of treatment until he or she can overcome those feelings. I was one of the first people to have this treatment for COPD and that fact alone is absolutely awesome to me. I now have a chance to let others know about it. I have nothing to gain by spending the kind of time I do spouting the good news I have. I am not paid to work on the forum. None of the other Pioneers are either. None of us are employed by any companies, clinics or doctors that do this type of treatment. The thing that motivates us is that maybe we can help someone else. Are you free of SOB? Are you enjoying life to the fullest? Are you getting out and about like you would like? I don't think so. Would you like to feel good again? I told myself I had nothing to lose (except the money) and everything to gain. I have lost money before in more stupid ways than you can imagine, so I went for it and I do not, even for one second, regret my decision.
 
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rosech44

New member
New Member and excited about stem cell

Hi, my name is Rose, fom Oregon--I am 63 this Sept.~~~ also a member of Tony's Live Cell therapy Group---I have had 3 treatments of the Live cell Therapy--not a cure, just makes life a little easier, til the effect wears off, but was worth it- I feel that it has prolonged my life to save me for the stem cell--
Like Tony I have been waiting for the stem cell to become available for us--

I'm really excited about this forum and the stem cell, fully intend to have the trreatment ASAP--I just have to start scraping up the money---
I was diagnosed with Emphasyma in 2000--I knew I had it, but wouldn't admit for much longer than that---I went thru pulmo Rehab, in 2000, and it was very helpful to me, not only to strengthen both my lungs, and my body, but to teach me how to live with this dreaded desease--how to breathe, how to walk up stairs etc. etc. I am going back to pulmo rehab next month, it is a 10 wk coarse, 2 days a week, and while I am doing that I am going to beg borrow or steal every dime I can, so I can get this treatment--

My sincere thanks to the Pioneers for being brave enough to step up to the plate, and try this wonderful treatment--- and to share it with the rest of us.

there is a light at the end of the tunnel~~~~Rose:
 
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barbara

Pioneer Founding member
Needed this

Thanks Rose for such nice comments. Every once in awhile it is nice to have someone say thank you for being one of the first. Most of the Pioneers have decided that we are either brave or exceptionally crazy. Those that know me, know which category I fall in. Hope you will be active on the forum. It is really easy to check on the new posts everyday by simply clicking on New Posts on the home page. This way you get to see all that's new without having to search on your own. You can even do this without signing in, however, if you want to post, you do have to sign in to do that.
 
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Susan

New member
My husband, Howard and I have almost certainly decided to for him to have this treatment for COPD. Son Rob and wife saved the cord blood from their new baby boy, born in June and they are willing for us to use it, if we need to.

Our appt. to speak with the Dr. is Aug. 12 and I guess we will find out more then.

We live in Alabama and flying with O2 will be a new experience for us. Sounds sort of complicated. We will be leaving Jackson, MS with a layover in Houston.

Howard's last Dr. visit showed 14% lung function and the Dr. put him on Hospice. This scared the you know what out of us as we did not think he was THAT bad.

He walks on treadmill, putters about the house and yard and uses weight machine. He is on O2 24/7 at 2 or 2.5 for relative inactivity and 3 for exercise. He can only walk about 30 ft. without needing to rest.

The Hospice people are very nice but we are looking forward to telling them their services are no longer needed - hopefully soon!! We KNOW not to be impatient but we are so excited and also scared.

Howard is dreading the "diet" we keep hearing about as he is a meat and potatoes man and will NOT eat broccoli, cauliflower, fish or seafood. Doesn't care much for chicken, either.

Thank you Jeannine for your patience on the phone with us and answering our e-mail questions.

Barbara, we have tried a couple of times to call you but have missed you both times.

We were both wondering how you and Jeannine found this clinic and Dr. as you were his first patients for COPD??
 
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Susan

New member
You hit the nail on the head. YES, we now have HOPE where we really had none before.

Of course we will keep you posted and thanks for your care, concern and for starting this forum where we are learning so much.

Your book is what we look for every day we get the mail. Maybe it will arrive next week?

We think you should get on a TV program to share this with even more people!
 
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barbara

Pioneer Founding member
Your book is in the mail

Hi Susan - Sorry I missed your calls. Please just leave me a message or e-mail me through the forum and I can call you if you like. I am sure Jeannine was a great help however. I mailed your book on Thursday. It goes out media mail so they say 7-10 days. I think you are going to find it full of all kinds of information including how the Pioneers got together. There are 135 pages and since it is done in magazine fold form, this is actually like 270 pages in bound books. You also get access to us personally at any time you have a question. If we don't have the answer, we will try to get it for you. Jeannine did indeed find the clinic where we went. I hate to fly, so I drove and that was a major reason I went there. I didn't use to feel that way, but the last flight I took, I ended up with pneumonia. In the book, there are some helpful hints about flying with O2 also. We have tried to include everything we could think of, but if you find something you think should be in there and isn't, let us know. There's always the second edition! It also has pictures. We are also hoping that the doctor from the Argentinian clinic will open one in El Salvador. This would be good news for people on the east coast and also those of you on the forum that are from that area. The company where we went is also planning on some expansion. None of this can come soon enough if my opinion. I hope Howard can reap as many benefits as we have from his treatment. He will have to take his copy of our book (by then it should be well read) and drop it off to the hospice nurses. Of course, he will need to walk in, without O2 and do this with a big smile on his face. I am not saying this to downgrade what those wonderful people do. My intention is to let Howard know that this is possible and when he is done with the book, it may well save someone else's life.
 
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