Well, It's been 6 months since I had my stem cell treatment and I can't say that it has helped me. Maybe because I have Bronchiectasis that adds a whole new issue to COPD. My lungs maybe repairing it self, but the weakening of the airway walls (the difference from Bronchiectasis and COPD) will not improve. I knew that going into the procedure. My hope was an improvement of lung function and less shortness of breath.
But I still have lung infections and are hard to get rid of, so bottom line....think twice before having the procedure if you have Bronchiectasis. It is still considered research, so insurance will not pay for it.
Elizabeth49611
Hi
I have had bronchiectasis since 1996. My biggest problem is getting the mucus out. I even have a vest help loosen the mucus. But hasn't been a lot of help. I'm so frustrated. I'm in and out of hospital due to pneumonia. Also past four months menapause symptoms makes me feel miserable! !! I'm 42 yr old have one son. I miss alot out with being able to do stuff with my son. My guilt is horrible put it on myself.
Thanks for listening
Good luck
After talking to a Doctor's Nurse at a Clinic in Florida about the stem cell procedure and her telling me what the outcome and cost would be I talked to my Pulmanary Doctor at the UofM in Michigan and he told Me that he felt the procedure was not recognized as any benificial good to the patient
Dear Eliabeth. Thank you very much for bothering to come in to this site to report on your treatment.It is so useful to hear from someone who has actual experience
Helo Beth,
Damn sorry to hear we where all really hoping that it might work for you,I got back on the Azthromycin again and I do fine a big difference,but as we said in earlier post hard to belive that they can't find something for this BX,well hope you stay as well as can be expected with this.
Regards,
Charlie
"hard to belive that they can't find something for this BX"
Bronchiectasis is a condition where the ends of the bronchi tubes have been basically destroyed (deterioted from several infections of the lungs) and no longer allow the body to natually move flem (sputum) up the esophogus natually so what happens is all this sputum collects in the lungs and is a breeding ground for pseudanomas. What Stem cell does or what the people pushing stem cell at a particular clinic (out patient) in Florida told me that the process COULD Possibly grow new cells at the end of the bronchi tubes. My Pulmanary Dr. shook his head. So I really don't think that the Clinic can provide positive proof through imaging that this actually works. It all sound great but I need to see the proof.
dale,
I saw, I think on this website that someone posted, a new procedure that flexable stints are placed along the weakening airway walls, thus strenghening the walls and coughing up mucus is easlier. I'm thinking that they are doing clinical trials in the UK.
I would like to think that with more and more people being diagnosed with this illness, the medical field would do more research.
Elizabeth
Thanks, Charlie. I wish I had better news.
Kris,
I know how you feel. I started having lung problems in my late 30s. That was 26 yrs ago. I was diagnosed with Asthma, then COPD and then after a CT scan 5 yrs ago, bronchiectasis.
I retired last year, and my mind wants to do alot of things and be active, but my lungs really slow me down.
You may want to start to think 'outside the box'. Check into supplements (Turmeric helps with iflammation), essential oils, etc. I take a spoonful of Manuka honey each day (it has antibiotic properties). I also take Azithromycin (antibiotic) every other day. It's a long term antibiotic.
Also, do you have a flutter valve? I use it thru out the day. Along with the use of my vest, it helps loosen the mucus. After using it, I position myself with my head lower than my waist and cough, gravity helps the mucus come up.
Hang in there, you are not alone, Elizabeth
I would also like to thank you for helping us all by providing information. Hopefully one day they will come up with something for us. I really had hope in the stem cell procedure too. I have asthma, pseudamonas and bronchiectasis. I always wonder how many people have these 3 things?
I am sorry to hear that. My mother is getting her second treatment this week. Due to osteoporosis she could not do the bone marrow. With her PF and bronchiesctasis we have seen some improvement - coughs up a lot of green, but no infections. I know from my research that it can take up to one year for the stem cells to work. We will keep praying for you.
Terri,
Where did your Mom have the treatment done? I live in the states and had mine done at The Lung Instutite. They use my own stem cells.
It's good to hear that some one has improved with the treatment, hopefully, she will continue with the improvement.
elizabeth
It was at the Pittsburgh location. She was very pleased with the staff who treated her and my dad well plus were very helpful in dealing with my sister who is mentally challenged (57 years old). She underwent her second treatment using her own blood cells two weeks ago and hopefully she will continue to improve as it takes up to a year for the stem cells to "reprogram" -- she, like you has a complicating factor, pulmonary fibrosis. Don't give up ... you just may need the full year for improvement as you have had your condition longer. She coughs up tons of green stuff but that is better than having it in your lungs.
Terri,
Great to hear how well your mother is doing. I will give it more time. For the past several weeks, I have been doing better. Usually, when the weather changes, as in the Fall, I don't do very well. So hopefully, this Fall will be better (last Fall I had to go into the hospital twice).
Thanks for the update (this forum is great to get and/or share information), Beth
Hi. I wonder if you remember where you saw the post about shunts for bronchiectasis? I have researched same but have drawn a blank
I don't remember who it was, but I do remember that it was taking place in the UK. The internet would be a good source to find information.
I just came across this post that I did a year ago.
I have to say that the last 8-9 months, I have been feeling a lot better. I have very little shortness of breath. It has been over two years since I've had a lung infection, ER visit, hospital stay or a bronchoscopy.
A year and a half ago, we moved to an area with better air quality. I have been retired for close to 3 yrs (less stress). And I had the stem cell treatment 2 yrs ago.
My specialist said that my numbers keep improving this past year. I have been able to decrease my daily nebulizer usage and have gone from 40mg of prednisone to 10mg per day.
We have done a bit of traveling this past year, and I am always able to keep up with the site seeing and walking.
I don't know if the stem cell treatment is the cause of the improvement or not, but it didn't hurt.
Beth
Thanks getting back. How long ago was it? I will try clinical trials .gov. Will let u know if I find it.