Stem cell

[Pinky2017]

Was wondering if anyone has researched stem cell transplants? They offer one in Jacksonville n Tampa fla. Its costly n none of my pulmonologist know anything about it. Never have spoken to any individuals who have gone thru this procedure .does anyone have information to share.? It could be a pipe dream or the real thing

[Offcut]

My Son had a stem cell transplant but he did have AML so a very different condition to a lung issue. He could not have this until he was flat of his old good and bad cells. Which in his case was not a pleasant experience.

I think this treatment is still in it's early stage so does not have the same guarantees as the blood cancer treatment does?

Be Well

[Pinky2017 in reply to Offcut]

Thank u for your reply. I don't know what AML is . please explain.in fla they offer a 3 day program where they remove your stem cells n I think..clean them n replace. I just find it odd that no pulmonologist knows nothing about stem cell n if it works. So I was going to go 2 yrs ago n cancelled.. I dont want to a guinea pig Namaste n heathy prayers for your son

[Offcut in reply to Pinky2017]

AML= Acute Myeloid Leukemia

As the later posters have said it is still a trial procedure. Ask them if you get your money back if it fails and what are the percentages of success ?

Thanks with regards my son he is doing okay.

[Pinky2017 in reply to Offcut]

Thank u for the information . there are so many diseases. But what doesn't kill u makes u stronger . my daughter who face had cancer n a bone marrow transplant. Tels me this all the time. She is now 10 thank God I think I will pass on the stem cell transplant . it might not be all they say if doctors are unaware of it

[Pinky2017 in reply to Pinky2017]

I meant my granddaughter had cancer at 3. She was luxky to find a nine marrow donor.she will be 11 next week. And watching her go thru this at 3 im glad she doesn't remember any of if

[Hidden]

Hi this has been discussed on here many times. To find previous posts/replies type your question in the the search box.

[ol-ly11]

I have mentioned to my consultant here in uk and he shakes head. Not available here yet as still working on it. I think you will find USA do but very expensive and still on trial. I did read a post on here once about someone who had done in Florida so I would do what lilacil said to do. Let us know what you find out

[Beth1949]

Pinky,

I had stem cell treatment in Dec 2015. I had it done in Nashville, TN at the Lung Institute. They have a clinic in Tampa as well as several other cities in the US.

I have bronchiectasis and am 68 yr old female. I have had lung issues for 30 yrs. Diagnosed with Bx about 6 yrs ago. Bx is like COPD, but there is a weakening of the airways walls due to childhood illnesses (whooping cough) and due to numerous pneumonias and lung infections, there is a lot of scaring in the lungs and an increase of mucus production that is hard to cough up.

They use your own stem cells and is still considered research, so insurance (Medicare) won't cover it. The theory is that your excess stem cells will go to the scaring part of your lungs and repair the damage. I had the more aggressive procedure where they use my blood and bone marrow ($12,000).

Since the treatment, I have moved to a better air quality area and since I retired two yrs ago, have taken better care of myself. Also, what I have learned from this forum, I have tried different vitamins and minerals and have taken a more proactive approach to this illness.

I can't tell you if the treatment helped or just the other things that have changed in my life, but I have felt the best I have felt in years. It has been about 6 months now that I feel almost normal. I have been able to decrease my meds (40mg of prednisone down to 10mg), nebulizer treatment from 4 times a day to 1-2 times a day for maintenance. And I exercise every day. Very little shortness of breath. At my last appt with my specialist, my breathing is almost at a normal person range.

Check out The Lung Institute website, you can sign up for a free webinar that explains the treatment.

Good luck, Beth

[Pinky2017 in reply to Beth1949]

God bless u.I am on oxygen 24 hrs . that must have been so painful taking out bone marrow. You are a strong woman n ty for sharing. My costs we're quoted 3500$ best of luck n where did u move to that the air is better? I live on the beach glad I left new york! Good luck

[Beth1949 in reply to Pinky2017]

Pinky,

It wasn't too painful taking the bone marrow. They use a local anesthetic.

We were living in northern Indiana in an area that has a lot of manufacturing (Elkhart County, RV capital of the world). We now live just on the outskirts of Des Moines Iowa. Moved here to be closer to our grandkids.

What is your illness? Even at my worst, I didn't need oxygen at home.

Before the treatment, I was always getting pneumonia, chest infections that required hospital stays and bronchoscopies to clear my lungs. Since the treatment, I only had 1 ER visit, about a month after the treatment.

If there is any more questions that I can help you with, please let me know, Beth

[Pinky2017 in reply to Beth1949]

Hi Beth .glad u are near family it's very important having family support. I envy I. I have a married son in ny n 2 gbabies.and my other son is in Calif. but children who are grown n live in New York and calif have never come down to fla when I ask for support . I always help when they have needed me. But I have to take care of me n not allow negativity in my life . I have always said if you fill my head with negativity I will raise the rent n evict u! Lol. Next week 2 doctor appts. Has anyone needed surgery when originally the doctor said no way u are not getting put out.under anesthesia. So I am scared . Mon alot with surgeon. I have a hostel hernia that bulges out like an alien baby. Been to er alot .sometimes I can fix it myself .very painful n it's strangulating my stomach.

And I have also had pneumonia several times within a year. And there is only 1 antibiotics im not allergic to so it's difficult. But 3 yes ago sept 4 I was released from the hospital with oxygen. N I know it's a learning lesson knowing what options I had n wasn't told about various portable light weight liquid oxygen to carry around . they tend not to last that long .so I bought an inogen portable with extra batteries. They last 10 hrs!!! N lifetime guarantee.best wishes Beth

[Pinky2017 in reply to Beth1949]

I am scared of the stem cell wash only because none of my pulmonologist or doctors have info on it. Glad u had success. I was going to go to Tampa but my mom had just died n i was alone n it's scary to go thru new things like stem cell alone.

[jackdup]

If that is a picture of you, you look so young to be on oxygen, especially if you never smoked. I know people of all ages can have COPD. There has been a few posts on stem cell treatment, and to the best of my knowledge it is still experimental, and results seem to vary.

Good luck in whatever you decide and please let us know if you do decide to go ahead with it.

[Pinky2017 in reply to jackdup]

Thank u . i used to be like the energized bunny ....always running around n getting out. Now it's ok to be alone I did all i wanted to do when i was in my early 20's.I have hobbies ...my art music n playing piano. And living on the beach is so relaxing n calming. I could never leave the beach in miami

[jackdup in reply to Pinky2017]

You live on the beach in Miami? Lucky you. How nice that must be. I hope you are doing okay.

[Hidden]

theres not a doctor, nurse, consultant, pulmonolgist, or any one remotely connected with the medical world that has not heared of stem cell treatment.

as Beth1949 says she not sure why she had such an improvement in her health..could be the stem cell treatment or the other things.

i've had lived with fresh air, golden beachs, great food, beautiful women for over 10 years and theres been no improvement with my lungs...i would try S C T...but my doctors said id be wasting my money and i could end up getting more i'll then i am already.

[Caspiana]

Hello Pinky2017 .

I can't help you with your question but I just wanted to say, long time no see and you are looking very happy. That's wonderful!!

*HUGS*

Cas xx 🌞🌷