I am just curious to know anyone's story that considered a transplant or LVRS. I personally would qualify (age 57), but the thought absolutely terrifies me. I think people that go through either one of those surgeries must have a special quality or a determination that I don't have. I decided on stem cell therapy first because I figured that I had nothing to lose by being a Pioneer and everything to gain if it did work. I am relatively young (although many people call me an old bag) so I still would have time to qualify for a transplant if the stem cell therapy didn't work. What about any of you nearing the age where a decision must be made? How will you decide? I am continuing to feel better everyday. The journals I keep with my daily progress help me to realize what a tremendous difference I am experiencing over my health status prior to the stem cell treatment. It is nothing short of a miracle for me. No SOB = New way of life! Costs vary at different clinics, but in comparison to prices for surgery and medical procedures here in the U.S., it is very reasonable. My 4 year old grandson just required a couple of staples in his head from a fall he took. The bill was over $700.00. Let's get a discussion going to see why or why not you would consider lung transplant, LVRS or stem cell therapy.
Transplants, LVRS, Etc.
- Thread starter barbara
- Start date
barrybrooks
New member
Making a choice~
I would opt for stem cell treatment in a minute. The other surgeries, at present, are too invasive and you are cut from pillar to post. When you heal, if you heal, you are scarred and disfigured. And never forget that while you lie on that table cut and bleeding you are the host for many, many germs and microbes that are just looking for a home.
Stem cells and the treatment will have to be perfected more to induce me to take the treatment. And the other side of the coin is the cost. For me the price you paid for the treatment is just way beyond my purse. I am sure that as the procedure becomes more widespread the costs will lower too. The more they do the cheaper they get.
In my own case I had a heart bypass that nearly killed me. I was cut from the throat to the upper lung area and also from my groin to my ankle on my left leg. The leg is where they take the new vein for grafting into heart.
Unfortunately I caught an infectiobn in my leg, just above the ankle, that damn near killed me. That wound alone took over six months to close and heal. No more cutting for me until embalming takes place. Barry.
I would opt for stem cell treatment in a minute. The other surgeries, at present, are too invasive and you are cut from pillar to post. When you heal, if you heal, you are scarred and disfigured. And never forget that while you lie on that table cut and bleeding you are the host for many, many germs and microbes that are just looking for a home.
Stem cells and the treatment will have to be perfected more to induce me to take the treatment. And the other side of the coin is the cost. For me the price you paid for the treatment is just way beyond my purse. I am sure that as the procedure becomes more widespread the costs will lower too. The more they do the cheaper they get.
In my own case I had a heart bypass that nearly killed me. I was cut from the throat to the upper lung area and also from my groin to my ankle on my left leg. The leg is where they take the new vein for grafting into heart.
Unfortunately I caught an infectiobn in my leg, just above the ankle, that damn near killed me. That wound alone took over six months to close and heal. No more cutting for me until embalming takes place. Barry.
Re: Making a choice
Hi guys,
I know I'm not the patient here (at least yet) but I, personally, would opt for the stem cell therapy. And, I'm fairly certain my husband would too. I agree with the both of you, the surgery is just so invasive and you have to worry about infection, rejection and a whole host of other things.
Barry, I agree with you about the cost, it's totally astronomical, but to someone in the U.S. who might have to pay upwards of a million dollars for a transplant, it's peanuts. And, if my hubby opts to do the stem cell therapy, I will be trying to organize a fundraiser to raise some money to help with the cost. And, I'm writing this with hopefulness while I'm facing losing my home, having utilities shut off and no money for anything as we're still fighting a battle with my hubby's previous employer to get him reinstated for LTD with his benefit package. But, I will do whatever necessary to try and raise the money to give him a better chance at life.
Mary
Hi guys,
I know I'm not the patient here (at least yet) but I, personally, would opt for the stem cell therapy. And, I'm fairly certain my husband would too. I agree with the both of you, the surgery is just so invasive and you have to worry about infection, rejection and a whole host of other things.
Barry, I agree with you about the cost, it's totally astronomical, but to someone in the U.S. who might have to pay upwards of a million dollars for a transplant, it's peanuts. And, if my hubby opts to do the stem cell therapy, I will be trying to organize a fundraiser to raise some money to help with the cost. And, I'm writing this with hopefulness while I'm facing losing my home, having utilities shut off and no money for anything as we're still fighting a battle with my hubby's previous employer to get him reinstated for LTD with his benefit package. But, I will do whatever necessary to try and raise the money to give him a better chance at life.
Mary
Your attitude is a winner
Mary - With your attitude and gumption, I think you are going to be able to accomplish whatever it takes to get your husband on the road to recovery. One thing to consider is that he or you may possibly be able to work (I don't know how old either of you are) at least part time once he feels better. I am only 12 weeks out from my stem cell therapy and I could work a full time job outside my home if I needed to. This would never have been possible for me pre treatment. I do most of my work from my home and have gotten used to it, but the energy is back and my O2 needs are now so low that I could work elsewhere. There is the matter of all the furry and feathery "children though." They like having me around. I agree with what you said about the cost of treatment. To me, it was reasonable. Everything costs so much these days including insurance premiums for us in the U.S. I had a utility bill of over $700.00 for one month last winter. Corn that I use at my bird refuge has gone up $3.00 per bag this year. My meds and O2 are a bundle each month. I look forward very soon to getting rid of those expenses! The price is not in the astronomical range. Even if the procedure becomes available in the U.S., then it will require the insurance companies to approve of it and all this is going to take years in my opinion. I hope you can get some fundraising going as it sounds like the sooner you can get your husband some help, the better. Is there anyway for you to get any publicity where you live concerning your plight? Stem cell therapy is a very interesting topic and perhaps you could get someone to write a story on you, your husband, your fundraising goals and how you feel that stem cell therapy may be his best hope. My son is going to have a new website which should be available in the next couple of weeks for those of us that do want to do some fundraising. He is in the t-shirt and apparel and printing business and has come up with a website devoted to fundraising. I am going to use it to sell t-shirts with birds on them for my non profit bird refuge. You do not have to purchase any inventory so whatever you come up with could raise funds for you at no expense to you. He will explain it all to us as soon as it is ready. I sure wish you all the luck there is. How is your husband doing now that he is in rehab? Have you seen any improvement?
Mary - With your attitude and gumption, I think you are going to be able to accomplish whatever it takes to get your husband on the road to recovery. One thing to consider is that he or you may possibly be able to work (I don't know how old either of you are) at least part time once he feels better. I am only 12 weeks out from my stem cell therapy and I could work a full time job outside my home if I needed to. This would never have been possible for me pre treatment. I do most of my work from my home and have gotten used to it, but the energy is back and my O2 needs are now so low that I could work elsewhere. There is the matter of all the furry and feathery "children though." They like having me around. I agree with what you said about the cost of treatment. To me, it was reasonable. Everything costs so much these days including insurance premiums for us in the U.S. I had a utility bill of over $700.00 for one month last winter. Corn that I use at my bird refuge has gone up $3.00 per bag this year. My meds and O2 are a bundle each month. I look forward very soon to getting rid of those expenses! The price is not in the astronomical range. Even if the procedure becomes available in the U.S., then it will require the insurance companies to approve of it and all this is going to take years in my opinion. I hope you can get some fundraising going as it sounds like the sooner you can get your husband some help, the better. Is there anyway for you to get any publicity where you live concerning your plight? Stem cell therapy is a very interesting topic and perhaps you could get someone to write a story on you, your husband, your fundraising goals and how you feel that stem cell therapy may be his best hope. My son is going to have a new website which should be available in the next couple of weeks for those of us that do want to do some fundraising. He is in the t-shirt and apparel and printing business and has come up with a website devoted to fundraising. I am going to use it to sell t-shirts with birds on them for my non profit bird refuge. You do not have to purchase any inventory so whatever you come up with could raise funds for you at no expense to you. He will explain it all to us as soon as it is ready. I sure wish you all the luck there is. How is your husband doing now that he is in rehab? Have you seen any improvement?
Re: Your attitude is a winner
Hi Barb,
Thanks so much for the encouraging words. To answer your question, I'm 51 and my hubby is 54.....still young enough to work, true...and when I don't have such constant caregiving, I know I can. Right now, I'm working a home business that's just getting started and my hubby and I have an income tax & accounting business at home but right now, it's just seasonal taxes. We had to give up the extra clients we did accounting for.
What a neat thing your son is doing...and I'll be anxious to hear all about it. I had thought about the newspaper route but wanted to let some hubbub die down from a friend's brother that just had a huge fundraiser to help him pay his bills and get alternative treatment for lung cancer. It was well attended and was in all the media so once that curbs a little and Doug feels a little stronger, I'll look into getting started for us.
Doug's getting ready to start his 5th week of rehab and he has gained a few pounds and has a little more stamina but he has a hyperthyroid issue fighting against him that was supposed to have been treated a few weeks ago and someone dropped the ball on the treatment and it's not going to be done now until next week. This has kept him from progressing as he should and I'm fairly positive they'll keep him in rehab a few weeks longer to try and make up for the lost time.
I love keeping in touch with everyone here and wondered if you'd be willing to have some of your progress quoted if we do any articles. That would really help with the integrity of our story.
Thanks again,
Mary
Hi Barb,
Thanks so much for the encouraging words. To answer your question, I'm 51 and my hubby is 54.....still young enough to work, true...and when I don't have such constant caregiving, I know I can. Right now, I'm working a home business that's just getting started and my hubby and I have an income tax & accounting business at home but right now, it's just seasonal taxes. We had to give up the extra clients we did accounting for.
What a neat thing your son is doing...and I'll be anxious to hear all about it. I had thought about the newspaper route but wanted to let some hubbub die down from a friend's brother that just had a huge fundraiser to help him pay his bills and get alternative treatment for lung cancer. It was well attended and was in all the media so once that curbs a little and Doug feels a little stronger, I'll look into getting started for us.
Doug's getting ready to start his 5th week of rehab and he has gained a few pounds and has a little more stamina but he has a hyperthyroid issue fighting against him that was supposed to have been treated a few weeks ago and someone dropped the ball on the treatment and it's not going to be done now until next week. This has kept him from progressing as he should and I'm fairly positive they'll keep him in rehab a few weeks longer to try and make up for the lost time.
I love keeping in touch with everyone here and wondered if you'd be willing to have some of your progress quoted if we do any articles. That would really help with the integrity of our story.
Thanks again,
Mary
Accountants you say?
Mary - There has been some discussion whether or not this procedure is tax deductible in the U.S. I do not know your tax laws in Canada and I do not know if you know the laws in the U.S. I would like to appeal to anyone with knowledge in this area to give us an opinion. It is a medical procedure. The book that Jeannine and I collaborated on is almost finished. I ended my work on it yesterday and have sent it to her to integrate what she has. It has day by day descriptions of our progress and also many other things of interest such as recommended diets to enhance engraftment, our personal views and histories and much more. If someone doesn't require that much detail, you can certainly tell anyone you want about me and what I have reported here. I want you to get your story out and get some help so that your husband can be treated. My goal is to spread the word about stem cell therapy so that others may be helped by what it has to offer. I know I would not have been able to do a transplant or LVRS. To me it is too risky and the long term outlook is too iffy. The very brave people that have done this have my admiration. They probably say the same about my stem cell treatment. It is risky and there is no long term evidence because it is too new. I see less and less risk as I learn more about stem cells. As for what the future holds, stay tuned! That's why I started this thread. I want to hear what others have to say.
Mary - There has been some discussion whether or not this procedure is tax deductible in the U.S. I do not know your tax laws in Canada and I do not know if you know the laws in the U.S. I would like to appeal to anyone with knowledge in this area to give us an opinion. It is a medical procedure. The book that Jeannine and I collaborated on is almost finished. I ended my work on it yesterday and have sent it to her to integrate what she has. It has day by day descriptions of our progress and also many other things of interest such as recommended diets to enhance engraftment, our personal views and histories and much more. If someone doesn't require that much detail, you can certainly tell anyone you want about me and what I have reported here. I want you to get your story out and get some help so that your husband can be treated. My goal is to spread the word about stem cell therapy so that others may be helped by what it has to offer. I know I would not have been able to do a transplant or LVRS. To me it is too risky and the long term outlook is too iffy. The very brave people that have done this have my admiration. They probably say the same about my stem cell treatment. It is risky and there is no long term evidence because it is too new. I see less and less risk as I learn more about stem cells. As for what the future holds, stay tuned! That's why I started this thread. I want to hear what others have to say.
My reason for choosing stem cells over LVRS or a transplant was based on trying the least invasive first. I have spoken to many people who have had LVRS and most improve a small amount and then only for a short time. I know several who even got worse.
As far as a transplant - the statistics show that only 55% are still alive after 5 years and from what I have read you are on massive drugs for the rest of your life not to mention the recovery time.
I still have time to explore that option but I have a strong suspicion that the cure is already here. Unfortunately it will take another ten years for the FDA to approve it.
As far as a transplant - the statistics show that only 55% are still alive after 5 years and from what I have read you are on massive drugs for the rest of your life not to mention the recovery time.
I still have time to explore that option but I have a strong suspicion that the cure is already here. Unfortunately it will take another ten years for the FDA to approve it.
barrybrooks
New member
Stem cell political approval??
IMHO in both our countries (Canada and the United States of America) our political parties make a mockery of our health systems. While they fight and argue about just about every facet of health care, we the people are dying.
What we need is for each of us to stand up on our two feet and shout "Enough is enough" and lobby our elected representative to fast track stem cell research so it is a viable and affordable option.
Banning the procedure for any reason just keeps postponing our getting better and having more knowledge.
It is all so very simple, and yet our politicians and others confuse the issue by taking sides even before the results are known.
Simplicity itself, but we do not have a choice yet, if you object to stem cells do not get them, but, if you believe in them get them, when you can afford them. Barry.
IMHO in both our countries (Canada and the United States of America) our political parties make a mockery of our health systems. While they fight and argue about just about every facet of health care, we the people are dying.
What we need is for each of us to stand up on our two feet and shout "Enough is enough" and lobby our elected representative to fast track stem cell research so it is a viable and affordable option.
Banning the procedure for any reason just keeps postponing our getting better and having more knowledge.
It is all so very simple, and yet our politicians and others confuse the issue by taking sides even before the results are known.
Simplicity itself, but we do not have a choice yet, if you object to stem cells do not get them, but, if you believe in them get them, when you can afford them. Barry.
Political stupidity
And Barry I might add, these politicians need to learn what they are talking about. There are different kinds of stem cells and to just argue about embryonic cells and ignore the umbilical and adult stem cell potential is nothing but pure politics in my opinion. It gets pretty disgusting when people are dying and the politicos are dragging their feet just to show who is in control. They really have forgotten who they work for - US! If any of you do contact your government officials, please make yourself knowledgeable first and if they reply completing ignoring what you have just told them, I would try again. I like to phone because then I can keep saying, "Do you understand what I am telling you?" I always ask the aide if that's who I get to have the person I am calling get back with me. If I don't hear, I follow up with an e-mail or fax or letter. Even then, some of these people are on a continual "out to lunch" system.
And Barry I might add, these politicians need to learn what they are talking about. There are different kinds of stem cells and to just argue about embryonic cells and ignore the umbilical and adult stem cell potential is nothing but pure politics in my opinion. It gets pretty disgusting when people are dying and the politicos are dragging their feet just to show who is in control. They really have forgotten who they work for - US! If any of you do contact your government officials, please make yourself knowledgeable first and if they reply completing ignoring what you have just told them, I would try again. I like to phone because then I can keep saying, "Do you understand what I am telling you?" I always ask the aide if that's who I get to have the person I am calling get back with me. If I don't hear, I follow up with an e-mail or fax or letter. Even then, some of these people are on a continual "out to lunch" system.
barrybrooks
New member
Questions
Post to all who who read here; As an advocate for COPD I have been doing my fair share of writing to our political leaders and others. Their reaction has been ho hum at best and makes me feel that there is something missing somewhere. Has any one any suggestions for improving the reception to my pleas for help in our fight for COPD.
Barbara you suggest phoning them, and I think that maybe the way for me to go. May I ask you you are phoning? Politicians, medical authorities or institutions or whom?
In my own case I have written to every provincial health minister, there are ten, and the three territorial health ministers. The response has been in a word underwhelming. I have also written the provincial College of Physicians and Surgeons and have heard from four so far. I welcome any suggestions. Letters have also been sent to the Prime Minister, Stephen Harper and the Federal Health Minister, Tony Clement. The pm sent a letter of acknowledgement but no response from our Tony Clement. Also, as far as stem cell research goes up here in Canada has anyone contacted robert.thompson@uhn.on.ca or the Lovelace Respiroratory Research Institute in Albquereque, New Mexico for any news on stem cell research??
Post to all who who read here; As an advocate for COPD I have been doing my fair share of writing to our political leaders and others. Their reaction has been ho hum at best and makes me feel that there is something missing somewhere. Has any one any suggestions for improving the reception to my pleas for help in our fight for COPD.
Barbara you suggest phoning them, and I think that maybe the way for me to go. May I ask you you are phoning? Politicians, medical authorities or institutions or whom?
In my own case I have written to every provincial health minister, there are ten, and the three territorial health ministers. The response has been in a word underwhelming. I have also written the provincial College of Physicians and Surgeons and have heard from four so far. I welcome any suggestions. Letters have also been sent to the Prime Minister, Stephen Harper and the Federal Health Minister, Tony Clement. The pm sent a letter of acknowledgement but no response from our Tony Clement. Also, as far as stem cell research goes up here in Canada has anyone contacted robert.thompson@uhn.on.ca or the Lovelace Respiroratory Research Institute in Albquereque, New Mexico for any news on stem cell research??
Over extending
Barry - I think you may be overextending your efforts. I would pick one key person and target them. I would write, e-mail, fax and phone and keep doing it. The way to pick the right person is to know what his or her job is. When I target a politician, which I do a lot of for animal rights, I make sure that the person I target is in a position to do some good for the issue I am fighting for. As I told you, I like phoning because then I can ask to speak to the person I want. If I get an assistant I can go through the whole bit and then ask if they understand it and tell them I would like to hear back from their boss. If I don't hear, then it gives me a chance to call again. I think you may have better success by bugging the local media. Complain to them that none of the officials have the time to even respond to you. You need to have your facts straight even if it means quoting straight out of a book on stem cell therapy. If you get things wrong, they are going to put you down as a person who really doesn't know what he is talking about. Send letters to the editor. I get mine published 80 percent of the time in large papers and almost 100 percent in small papers. Ask yourself what is it you really want to happen? Are you looking for the procedure to be paid for by the government or just have the government tell you it is safe? What are your goals? You need to define yourself more clearly and concisely before you will receive the credibility it is going to take to get this issue recognized as possibly one of the most incredible forms of treatment to ever become available. Start small, think big and you will eventually get where you want to be.
Barry - I think you may be overextending your efforts. I would pick one key person and target them. I would write, e-mail, fax and phone and keep doing it. The way to pick the right person is to know what his or her job is. When I target a politician, which I do a lot of for animal rights, I make sure that the person I target is in a position to do some good for the issue I am fighting for. As I told you, I like phoning because then I can ask to speak to the person I want. If I get an assistant I can go through the whole bit and then ask if they understand it and tell them I would like to hear back from their boss. If I don't hear, then it gives me a chance to call again. I think you may have better success by bugging the local media. Complain to them that none of the officials have the time to even respond to you. You need to have your facts straight even if it means quoting straight out of a book on stem cell therapy. If you get things wrong, they are going to put you down as a person who really doesn't know what he is talking about. Send letters to the editor. I get mine published 80 percent of the time in large papers and almost 100 percent in small papers. Ask yourself what is it you really want to happen? Are you looking for the procedure to be paid for by the government or just have the government tell you it is safe? What are your goals? You need to define yourself more clearly and concisely before you will receive the credibility it is going to take to get this issue recognized as possibly one of the most incredible forms of treatment to ever become available. Start small, think big and you will eventually get where you want to be.
I have been evaluated and approved for LVRS at the Cleveland Clinic, but have been dragging my feet. I originally went for TX evaluation upon the recommendation of my local pulmonologist, but after the pulmo at the Clinic saw me, he suggested going for LVRS first and then TX later if needed. So I went thru all the testing. In all honesty, my diagnosis and TX recommendation all happened to me so fast (but now over a year ago) that I think I'm still trying to assimilate this whole experience before I go charging into such a radical treatment. And I'm not at all sure that I want to go thru ONE of these surgeries, let alone TWO! lol
If Medicaid paid for stem cell therapy, I would absolutely choose that first! This is one of the insanities of our health care system; i.e., they will pay for much more expensive and invasive treatment rather than a less-intrusive and less costly alternative. Go figure.
I was glad to see that stem cell therapy could still be possible after LVRS.
If Medicaid paid for stem cell therapy, I would absolutely choose that first! This is one of the insanities of our health care system; i.e., they will pay for much more expensive and invasive treatment rather than a less-intrusive and less costly alternative. Go figure.
I was glad to see that stem cell therapy could still be possible after LVRS.
Adina
I was evaluated last August for LVRS and Lung TX at Brigham & Womens in Boston. The doctor said I qualified for LVRS and only needed one more test to be sure. I was very reluctant to go under the knife and alter my lungs permanently at this point because I was still able to work and do some limited things, and I was also attending rehab which seemed to help some.
I kept dragging my feet and my pulmonary doctor asked me at my October 2006 visit what I had decided to do. I told him I still wasn't ready to have surgery. Fate must have been looking out for me because when I had pretty much given up on ever improving without surgery, I read Nassin's story on Efforts. I was positive from the moment I read his letter that I was going to do stem cells too. I didn't care what it took (money, travel) this was my opportunity to avoid surgery.
Don't get me wrong - the first few months were hellish and one night I wanted to die, but the results so far have put me back to where I was in 2004 and I see more improvement daily. We were told it would take 3 -6months to see major improvements and as the end of the 4th month winds down this is becoming a reality.
This may or may not be a permanent cure but it is definitely a major improvement in my quality of life.
Note: I rephrased the "I thought I was going to die" to "I wanted to die"
I am alive and well and work full time. I ask anyone who is afraid to have this treatment to ask themselves what they have to lose other than money? If I'm dead I won't need it anyway and if I am still around I can earn more.
I was evaluated last August for LVRS and Lung TX at Brigham & Womens in Boston. The doctor said I qualified for LVRS and only needed one more test to be sure. I was very reluctant to go under the knife and alter my lungs permanently at this point because I was still able to work and do some limited things, and I was also attending rehab which seemed to help some.
I kept dragging my feet and my pulmonary doctor asked me at my October 2006 visit what I had decided to do. I told him I still wasn't ready to have surgery. Fate must have been looking out for me because when I had pretty much given up on ever improving without surgery, I read Nassin's story on Efforts. I was positive from the moment I read his letter that I was going to do stem cells too. I didn't care what it took (money, travel) this was my opportunity to avoid surgery.
Don't get me wrong - the first few months were hellish and one night I wanted to die, but the results so far have put me back to where I was in 2004 and I see more improvement daily. We were told it would take 3 -6months to see major improvements and as the end of the 4th month winds down this is becoming a reality.
This may or may not be a permanent cure but it is definitely a major improvement in my quality of life.
Note: I rephrased the "I thought I was going to die" to "I wanted to die"
I am alive and well and work full time. I ask anyone who is afraid to have this treatment to ask themselves what they have to lose other than money? If I'm dead I won't need it anyway and if I am still around I can earn more.
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Obviously there is no perfect treatment. Transplant carries the most risk, LVRS less but both are major surgeries, no doubt.
You folks who have already gone for SC treatment have all mentioned being ill afterward, sometimes to the point "I thought I might die" and that concerns me. Is this something everyone goes through? Is it in reality a possible body rejection of the SC's? There still seem to be unknown areas for treatment and improvement.
So glad to know many feel they are improving.
GC1
You folks who have already gone for SC treatment have all mentioned being ill afterward, sometimes to the point "I thought I might die" and that concerns me. Is this something everyone goes through? Is it in reality a possible body rejection of the SC's? There still seem to be unknown areas for treatment and improvement.
So glad to know many feel they are improving.
GC1
No illness from the stem cells
Hi GC1 I did get ill for about 5 days after the treatment from some bug I picked up along the way. In no way did I ever think I was going to die. I sometimes use expressions like sick as a dog or I was so sick I thought I would keel over, but in all seriousness, once I got rid of the bug (the doctor feels it was something I picked up on the trip and now administers an antibiotic to those who wish one 2 days prior to treatment and for 8 days after) I started feeling better and better long before the 90 day mark which he had said might be the first that I would notice improvements. I am totally satisfied with my treatment and am slowly weaning off O2 at this point. I felt some changes last week and little by little I am able to go without O2 and not desaturate. Losing the SOB after only 6 weeks was like a miracle to me. I have not had one day of SOB since May 20. I truly believe those days are gone because I put in some pretty hectic days and it doesn't seem to wear me down. Also, my husband had a nasty cold last month and usually I catch everything. I didn't get it. Jeannine also got the same bug I got as we went on the same day for treatment. To my knowledge, no one else has gotten ill at all. They do warn you that you might experience "flu like" symptoms for a few days afterward, but like I said no one else got ill at all. If you want to know what I think really led to my downfall with COPD, it was a flight I took to Bismarck, ND in 2006. I got pneumonia and I truly believe it was from the flight. The pneumonia was not diagnosed quickly by my doctor and after that I just kept getting worse and worse with my FEV1 declining. The cells are screened for all diseases such as HIV, hepatitis, etc. You do not receive blood cells, only stem cells from the umbilical cord. Hope this answer clears things up for you about me anyway.
Hi GC1 I did get ill for about 5 days after the treatment from some bug I picked up along the way. In no way did I ever think I was going to die. I sometimes use expressions like sick as a dog or I was so sick I thought I would keel over, but in all seriousness, once I got rid of the bug (the doctor feels it was something I picked up on the trip and now administers an antibiotic to those who wish one 2 days prior to treatment and for 8 days after) I started feeling better and better long before the 90 day mark which he had said might be the first that I would notice improvements. I am totally satisfied with my treatment and am slowly weaning off O2 at this point. I felt some changes last week and little by little I am able to go without O2 and not desaturate. Losing the SOB after only 6 weeks was like a miracle to me. I have not had one day of SOB since May 20. I truly believe those days are gone because I put in some pretty hectic days and it doesn't seem to wear me down. Also, my husband had a nasty cold last month and usually I catch everything. I didn't get it. Jeannine also got the same bug I got as we went on the same day for treatment. To my knowledge, no one else has gotten ill at all. They do warn you that you might experience "flu like" symptoms for a few days afterward, but like I said no one else got ill at all. If you want to know what I think really led to my downfall with COPD, it was a flight I took to Bismarck, ND in 2006. I got pneumonia and I truly believe it was from the flight. The pneumonia was not diagnosed quickly by my doctor and after that I just kept getting worse and worse with my FEV1 declining. The cells are screened for all diseases such as HIV, hepatitis, etc. You do not receive blood cells, only stem cells from the umbilical cord. Hope this answer clears things up for you about me anyway.
Message from Tony who has had a lung transplant
I believe Tony's post also belongs in this section. I copied it so that those who are reading this category and may not see his original posting will be able to gain from what he has said. Thank you for sharing this with us Tony.
TonyinDallas TonyinDallas is offline
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Join Date: Jul 2007
Location: Dallas, Texas
Posts: 5
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Thumbs up Transplant or stem cells
I have not been to see Dr F. and get my stem cells yet...the key word is "yet". This something that will happen. I had a single left lung transplant on Feb 11,2001. I had 4 great years of no oxygen and for me that was wonderful as before my transplant my FEV1 was 9%. I did get to 45% at one time but it was short lived. I had a lot more problems than most with my transplant thus the low 45% post transplant. I should have gone to 70% or so. I have been in chronic rejection now for 2 years and my FEV1 is down to 25% due to two bouts of RSV virus. If I had known, stem cells would have come first and I truly believe I would not have to have had a transplant. We could more afford it back then. So far between the hospital stays and medications , my transplant has cost appx. $400,000. My stay in the ICU post transplant was $10,000 per day. I do have very good insurance but still at a 80%/20% split, you can see what it has cost me.
I have to have another transplant soon or I need the stem cells. If I don't have one or the other, my prognosis is around 3 years.
I will have to drive to California as I can not fly due to oxygen requirements. The airlines supply 4lpm. I would require 7lpm to fly.
I hope we can make it to San Diego this fall when things cool off a little.
Thanks to Barb and the other founders for this site. We have let them post to our site we started for live cells about 4 years ago. I was kicked off Efforts for talking about Live Cells and was banned from mentioning it on the other COPD group. Sad.
Tony in Dallas
I believe Tony's post also belongs in this section. I copied it so that those who are reading this category and may not see his original posting will be able to gain from what he has said. Thank you for sharing this with us Tony.
TonyinDallas TonyinDallas is offline
Junior Member
Join Date: Jul 2007
Location: Dallas, Texas
Posts: 5
Send a message via AIM to TonyinDallas
Thumbs up Transplant or stem cells
I have not been to see Dr F. and get my stem cells yet...the key word is "yet". This something that will happen. I had a single left lung transplant on Feb 11,2001. I had 4 great years of no oxygen and for me that was wonderful as before my transplant my FEV1 was 9%. I did get to 45% at one time but it was short lived. I had a lot more problems than most with my transplant thus the low 45% post transplant. I should have gone to 70% or so. I have been in chronic rejection now for 2 years and my FEV1 is down to 25% due to two bouts of RSV virus. If I had known, stem cells would have come first and I truly believe I would not have to have had a transplant. We could more afford it back then. So far between the hospital stays and medications , my transplant has cost appx. $400,000. My stay in the ICU post transplant was $10,000 per day. I do have very good insurance but still at a 80%/20% split, you can see what it has cost me.
I have to have another transplant soon or I need the stem cells. If I don't have one or the other, my prognosis is around 3 years.
I will have to drive to California as I can not fly due to oxygen requirements. The airlines supply 4lpm. I would require 7lpm to fly.
I hope we can make it to San Diego this fall when things cool off a little.
Thanks to Barb and the other founders for this site. We have let them post to our site we started for live cells about 4 years ago. I was kicked off Efforts for talking about Live Cells and was banned from mentioning it on the other COPD group. Sad.
Tony in Dallas