Stem cell treatment - info needed
Posted , 6 users are following.
I've reached the point of considering this, but would like some info before i talk to my pulmonologist: How often do you have to go back for another treatment, and is it $10,000-$15,000US every time? Is it painful? How long do you stay for the treatment? This is info that purveyors here in the States don't readily offer up to US patients;-)
I'll post in the COPD forum shortly if i don't get an answer here.
0 likes, 12 replies
sue00942 aitarg35939
Posted
hi. i have bronchiectasis and have contacted the Lung institute in the usa (apologies for grammar- i seem to have lost the ability to use capitals)! they do 2 types of stem cell therapy,those taken from the blood and those taken from the bone marrow. The latter is the most expensive (around 10000)$ and is the most invasive as they take marrow from the bone. They can do 3 treatments :the first and then a 2nd and 3rd after 3 and 6 months. I am not sure whether the price only includes 1 treatment or the 3. (i suspect its only the one). I live in Cheshire and am considering the treatment however i would like the 3 but the amount and cost of travelling to and from usa is daunting. There is a lovely lady called Beth from the usa who has had the treatment and found her health improve dramatically. However she moved to a state with cleaner air and left a stressful job before she had the treatment and consequently doesnt know if these are factors in her improvement. You can find her posts on Health unlocked, under stem cells.
aitarg35939 sue00942
Posted
Thank you, that's helpful. From what the next post says about osteoporosis, i guess i could only do the blood treatment. I will look up the Health unlocked site.
terri24729 aitarg35939
Posted
My 80-year old mother has both pulmonary fibrosis and bronchiecstasis. She had the "blood stem cell" (due to osteoporosis she could not do the marrow) done for $7500 at the Pittsburgh location for the lung institute in April 2017 and again in April/May 2018. This included the hotel room. It was a very simple treatment - took her blood, centrifuged it -- after 2 days, they put the "stem cells" back in her body. My parents came home on the 3rd day. The second treatment was a total of 2 days -- I can't quite recall if they took her blood and centrifuged it once or twice. She is doing well -- after her first treatment, she got an infection and ende dup on antibiotics and had an x-ray (a no-no for 6 months or a year). I think her 2nd treatment made the most improvement. The Lung Institute has webinars that you can attend (I found it quite informative) and the patient coordinators that I dealt with were extremely patient and helpful (I did all of the research for my parents).
She has had knee issues for some time (had a hip replacement 20 years ago) and they were concerned with the anesthesia, but she breezed through it last June. Would love to have her hip redone, but that is a longer period under anesthesia.
If I can answer any other questions, let me know.
aitarg35939 terri24729
Posted
Thank you, knee surgery and foot surgery are part of the reason for considering the stem cell therapy as my lung doctor won't let me do any non-emergent surgeries. I would also like to travel further from home again, and maybe not have to spend hours daily on lung treatments. Your info is very helpful. I hope all continues to go well for your mom.
louise17255 aitarg35939
Posted
Hello aitarg:
Thank you for initiating this discussion again. I have been looking into stem cell therapy with the Lung Institute for a while. It is a lot of money for me and I found very little evidence that it works other than patient self reports. So I am still on the fence but I would love to know your experience. I will check out the Health Unlocked website as well. Thank you Terri for telling us about this and about your mother's experience. I am trying essential oils for now and am coughing much less. I am still short of breath though.
Wish you luck and strength.
Louise
aitarg35939 louise17255
Posted
Yes, it is a lot of money. I'd have to sell my house here in Austin Tx to do this, so I want to be sure that my chance of improvement is quite good before i go forward. This would be a desperation move.
I don't know how you can breathe in the same room as an open bottle of essential oils as I sure can't. I have a weekly dinner with someone who treats people with them and I'm under frequent bombardment to try them. Here in the States, it recently came out that lavender & tea tree essential oils include ingredients that are known hormone disrupters, tho in those two products they're testosterone disrupters so not apt to harm the two of us, lol. Before that article came out, i assumed that essential oils were a single substance item. Live and learn.
louise17255 aitarg35939
Posted
I have actually been nebulizing with some essential oils in a sterile saline solution and found that I seem to be able to tolerate them and my my coughing and mucus production has improved. Since you know a treatment person who uses them I would definitely check them out. Dr. Axe, on line, has quite a good list of the benefits of these oils. After living with bronchiectasis for about 20 years and gradually worsening, I was glad to find something new that helps a bit and does not have horrible side effects. Another promising treatment that is being developed is phage therapy for particular antibiotic-resistant bugs. There is actually a clinic for it in San Diego but so far there seem to be a lot a red tape involved in going there.
Louise
elizabeth49611 aitarg35939
Posted
Hi, this is Beth, and I'm the one that Sue mentioned.
She is correct, I had the treatment done in Dec of 2015. They do recommend that the treatment be done about a year or so after the first one. They called me about a year after the treatment to see if I wanted another one. At the time, I felt it was not working and saw little improvement at that time, so I said no.
But, as Sue stated, We moved 3 yrs ago to an area with better air quality (closer to grandkids). And a few months before the treatment, I retired from a stressful job ( I loved the job, but would put my job before my health).
It wasn't until we moved to a city that had specialists with knowledge of Broncheictasis, and trying different meds that I my health improved.
I like to think that the treatment help repair my lungs and that better air quality, less stress, and the right mixture of meds, helped a lot with my improvement.
I cough up a lot less mucus, I have been able to quit taking prednisone ( I have had to take for years) and only use my nebulizer twice a day for maintenance. I also have a percussion vest. My doctor started having me take an inhaler med called Dulera for my asthma.
Since the stem cell treatment, I haven't had an ER, hospital stay, pneumonia, or needed a bronchoscopy (the 2 yrs prior, I had 4-5 bronchoscopies per year).
I'm doing great, I'm a 69 yr old female. I can do the normal things around the house, moderate exercise (we had 4 in of snow last night, and I was able to shovel the driveway). If I get winded, I take a little break.
This is getting to be a long reply, but if you want more information, please let me know.
Beth
aitarg35939 elizabeth49611
Posted
Thank you, Beth. Your results make me want a lot more info as i'm not sure my pulmo would call that enough improvement to let me have the knee & foot surgeries. I won't dash out and sell my house, lol.
elizabeth49611 aitarg35939
Posted
It is a lot of money for the treatment and since it's still considered research, insurance won't cover it.
My thought was, that even if it's for research, I would help that maybe in the future, the medical field would come up with a cure or better treatment of Bx.
I have also tried alternatives to prescribe meds. I did in the past take Manuka Honey every day and I still take turmeric w/ pepper everyday. I also take a low long term dosage of an antibiotic.
Beth
aitarg35939 elizabeth49611
Posted
From your description, your BX before the treatment & other life changes may have been much worse than mine. So far i've never had pneumonia nor received a bronchoscopy. I believe my specialist may be more conservative about the 'scope than others, and i don't disagree.
I would hope to get away from the many hours daily which i spend with nebs & smartvest. But especially I would need to feel at least 75% sure that I'd be able to have those surgeries. Selling my house is a huge thing as my small income is nowhere near enough to let me rent anything other than a moldy closet within a hundred miles of where i live ,,, and i can't breathe around mold, lol.
I will talk to my pulmonologist about it when i see him in 2 months. I appreciate the info.
sue00942 aitarg35939
Posted
Hi Beth, so glad to hear you are still doing well. Hope you continue to feel better. Love Sue.