Confused

[victoriasamantha]

Hi Barbara; I spoke with my pulmonologist today about stem cell
research and therapy and he told me that it will continue to be researched for
the next ten years and by no means is it ready to be tried on people
with lung disease. I am somewhat confused as to how you can say with
such certainty that this will make an improvement on someone's life if it
is so far down the road and not ready to be tried. These are only
questions, I am trying to sort this out. As you remember, I did tell you
he (my doctor) is always putting thumbs down on whatever I ask him but
I did also ask my cardiologist and he said he was not aware of the
research on lung diseases but it is working well with people with heart
conditions. Can you clarify any of this?

 

[barbara]

I hope others will join in here and let VictoriaSamantha know of their doctor's reaction to stem cell therapy. My own pulmo is a young open minded man who used to work at National Jewish Hospital. He had no problems with me trying stem cell therapy. Many doctors are afraid of what stem cell therapy could do to their future. They do not have the education or training in stem cell therapy and so they put the ax to it not realizing that if their patients wait ten years just to have it available in the U.S., these patients may be dead. Is there something so special about getting treatment in the U.S. that we should forgo saving our lives? I think not. I am very grateful for those countries that are progressive enough to offer treatment now and not when I am 6 feet under. My epitaph would read, "She died waiting for FDA approval". Is that something I want? No way! I want it to read that I had a very long, healthy, active life after becoming a Pioneer. I hope you will get other responses. Bev comes to mind as someone who had a negative pulmo. There are others on here as well. I would hope you would consider finding a different doctor if it makes a huge difference to you. It would not have mattered to me whether my pulmo was for or against it. I made up my mind and I have NO regrets. I would welcome your pulmonologist to visit this forum. We are people who prior to stem cell therapy were extremely ill. I have no clue what he means that stem cell therapy is not ready to treat lung patients for at least 10 years. He needs to be enlightened. Doctors are treating it now and very successfully. It is not limited to Mexico. Germany has a clinic now that is accepting COPD patients, Costa Rica, Argentina, Cayman Islands and hopefully soon another location in Europe. These are the known COPD locations. I hope this helps you understand that unless you are only suffering very mild symptoms, 10 years may not be something you are willing to sacrifice.

 

[rosech44]

confused----

Barbara pretty much says it like it is----I do not feel that I had 10 or more years to wait for this treatment, my lungs were bad--Already, I am seeing improvements----and I am so glad I went, if not, I know I would be dead within, 3 yrs----I have been lucky most of the Dr's. I have come across, support me in my decision, even tho, they are not sure about it----I had one Dr. offer to drive me to San Diego---my Pulmo does not know about it. I am overdue for a visit there, but I don't want to go, until I have even more improvements to show them.

It is good for you to ask questions, and research, for ultimately, it has to be your decision--but please don't let a negative pulmo, keep you from getting help, and treatment that will help you--it could cost you your life----

 

[Connie Golden]

confused doctors

Dear Victoria,

I was with Rose for stem cells treatments 10/4 and like Rose my lungs are very poor 15% FEV. I have been on oxygen 24/7 for 8 years. My pulmonologist is considered one of the best in Oklahoma. I have already outlived his prediction by four years. He agrees with your doctor that we are a long way from stem cells being available to the public. The doctors do not offer us any alternatives other than lung transplants. They frequently do not even instruct us on the importance of exercise.


Stem cells are not new. Most of us have been watching and waiting and as Rose has said, we only hoped to hang on long enough to get stem cells. You need to search for yourself. Luckily, Jeanine and Barbara found the clinic where we went. Others have found other clinics. Thankfully, there is a growing group of knowledgeable folks willing to assist you such as the many on this site. You should order the book Jeanine and Barbara wrote. It will answer most of your questions and quickly educate you.

Best wishes, Connie

 

[Bev12452]

my 2 cents

Dear Victoria I also was with the group that had treatment Oct 4 both my primary and pulmo Dr's didn't want me to do it I was on the lung transplant list and have 11% lung function I was out of options so I choose the treatment and even though I haven't shown much improvement yet I would do it again while I was out in Ca I met a Dr that was watching the procedure we started talking and I found out he has a office in Tampa I have an Appt on Nov 8 so when a door closes a window opens you have to do what you feel is best for you your Dr is not going to be here for your family take care and know that we are all here if you need us

 

[barbara]

Bev's new doctor

Bev - Is this a new pulmo you met or a stem cell doctor? I am anxious to hear what he will have to say. Hang in there and do your lung exercises! Just what you want to hear me nag about, right?

 

[Jeannine]

Another matter to keep in mind

In addition to improving your lung function, the stem cells also seem to repair some of the heart damage caused by COPD. I'm sure those of you who have gone recently will notice a drop in your heart rates and this will also coincide with a lessening of SOB. There are several components that have been damaged by COPD besides alveoli in your lungs, the entire cardiopulmonary blood vessel system will also be improved which will also improve your breathing and Saturation.

 

[chris63]

exercises??

could someone tell me what exercises you do. have asked pul. but can't seem to get straight answer. I have 25% capacity and go to work everyday. i have my bad days and i try to work thru them. can do exercises at home. also. does the clinic and or the dr.s at the hospital do follow up with anyone that has had stem cell theraphy?? How long after you send in info do they set appt??

 

[Bev12452]

new Dr

The Dr I am going to see is the Dr that is going to start the stem cell treatment in the future so he knows what I am going through and approves of the methods he is listed as an anti aging Dr sound familiar he is into alternative methods and herbal remedies I am looking forward to seeing him I am looking for a remedy for panic attacks even if my o2 stats are above 90 I still feel sob so I know some of it is panic I will let everyone know what he has to say

 

[barbara]

Chris 63 post #8

If you have sent in an application somewhere and it has been more than a week ago, I would follow up with an e-mail or a phone call to see if they even got it. Also, as far as pulmonary exercises, I do a lot of upper body exercises with a Theraband, walk the treadmill and peddle a recumbent bike which I dislike. If you don't have the equipment, use panty hose in place of a Theraband, soup cans for weights and get out and walk the malls or around your block. Exercise is very good for everyone and double good for pulmonary patients. I also personally feel that using the PowerLung is equal to mini workouts for me. There is a thread that explains PowerLung on here and soon to be a direct link. That's how strongly we feel about this product. If you use O2, I find it beneficial to crank it up so that I can exercise longer and harder.

 

[chris63]

application

barbara--just sent in application--have been doing lots of reseach and watching the site with everyone's progress--all seem to be going forward at different paces which is good. Amazing thing is that they have been doing stem cell research for 30 yrs. unfortunately getting things to progress in the USA is frustrating. I have been waiting 37 yrs. for them to find a cure for cancer(which they probably have) but it is to lucrative a business. personally at this point and time in my life and for the copd i would rather have the treatment and hope that it will make the improvements that have been forcast. i think everyone that has had them is a testament to the future. I hope i don't get turned down. I will keep you posted.


Chris63(Gerry)

 

[rosech44]

Exercise

One Of The Most Important Elements Of Exercising, Is, Use The Pursed Lip Breathing---it Can Keep Your 02 Up And Hold The Sob At Bay---practise Doing It Until It Is Second Nature.

Good Luck