stem cell surgery

[2pray4us]

hello everyone my name is kim, I'm 55 yrs old. I have had severe copd for the past 4yrs. I live on oxygen machine all the time, but I go out sometimes I carry tanks with me which is such a pain, but I'm grateful to God to be able to go out at all. I heard of this thing called stem cell surgery, which improves your breathing causes the fat tissue from your body gets injected back into your lungs or something. I spoke to a lady who said her husband had it and it went well, my doc said he never heard of it and would not recommend it, so I was wondering has anyone else heard of it?

[stone-UK]

Hi

There as some claims, and some claims of success. Which contradicts the major players, who say stem cell surgery for lungs and lung regeneration, although not impossible are a long way of. This is due to the complexity of the lungs.

[Mandy6513]

i dont know anything about this sorry but this post was on here a few months ago which may help a little 

healthunlocked.com/blf/post...

copdfoundation.org/COPD360s...

[2pray4us in reply to Mandy6513]

ok thank you so much

[Hidden]

Hi as far as I know this is still experimental though I have heard they are doing it in USA.   Who knows if they will be here.  x

[2pray4us]

well actually it is being done here, that's how I found out about it, they have like four different offices in the US where they do the treatment, there is one near me in Pittsburgh pa. They send me emails all the time. The procedure costs like 17,000.00 so they say, I just want to know does it really work. They say it raises your breathing like 50% of what your breathing now. Less use of oxygen tanks. Right now I am breathing on only 24% of my own lungs, so for me that would be great!

[gaffers]

It's a scam there is at present no stem cell treatments for lung disease that works, this is a con trick, expensive and pointless.My daughter works in the field,and is a post doctoral researcher at a prestigious university we are at present a long way from being able to do stem cell treatments for the lungs, don't waste your money 

[Dedalus]

Welcome to the group Kim xxx

[Hidden]

G'day Kim,

I Have been researching Stem cell for IPF and the only conclusion I have come to is that there is not any proof that it works,because if it did, you would be hearing about it.

I guess it is still being trialed.

"Toss a lifeline and some will grab hold of it". Trouble is ,is it a lifeline or a way of separating some poor soul from their money. As Gaffers says "It is a scam" well we do not know one way or the other. Desperate people will try anything if they think it will help.

You just need to look at the pharmaceutical companies offering different drugs supposedly to help with lung disease. Do they work or is it just another way of getting your money. Esbriet and Ofev are two currently being used in the USA, some sufferers claim they are helping slow the disease whilst others have had to stop due to health problems associated with ingesting them.

The downside to these trial drugs is best shown with the "Triple" a test involving lung disease sufferers, 50% given the 3 drugs and another 50% the placebo. For every person taking the placebo who died, 10 receiving the "triple" also died.

Lung disease is one nasty SOB , you only have to look at the posts and replies to ascertain that one drug will help someone but can be detrimental to another.

 We see this, we buy this, and then we are disappointed, because,in our case,it does not work. So what's next  Oh!!  A new product is out there so we start again, we buy........  This is the world we live in, all clutching at anything that may help us.

My only suggestion is  Find a bloody good lung Dr, hope and pray for that miracle.

Will (Australia)

[2pray4us in reply to Hidden]

Hello, and thanks for the info. You are right, its just like someone wanting to lose weight, they will try anything they think might help them, hoping for a good result and then be disappointed. I have been in that position a few times, and you are right, just get a good doc. and pray and have faith in your miracle cause God is truly still in the miracle business!

[Hidden in reply to 2pray4us]

Amen

[Beth1949]

I had Stem Cell treatment 4 months ago. They said it would take 3-6 months before I would notice an improvement.  So far, I haven't. 

This is a research treatment, so costs are out of pocket, for me it was $12,000. So you have to weigh the 'will it help' against the cost.

What is common today would be unheard of years ago.  I keep thinking that hundred of years ago, everyone thought the world was flat and the universe revolved around earth.

Beth

[2pray4us in reply to Beth1949]

hello Beth, thanks for the reply. So you are saying that it does not work? How old are you?

[Beth1949 in reply to 2pray4us]

I'm 66 yrs old.  I've had lung issues for 27 yrs.  It's only been the last 6-7 yrs that this disease have really taken a toll on my health. I retired a year ago, and haven't been able to do as much as I wanted to do.

I't too soon to tell if the stem cell treatment is working.  It's been four months, so the next several months, I'm hoping to notice a difference.

Beth

[2pray4us in reply to Beth1949]

Hello Beth, I pray that all is well with you. This is Kim again and I thank you for responding to my questions. So after 4 months nothing has changed, do you thing its going to work or maybe you wasted your money? How did you hear about the stem cell surgery? 

[Beth1949 in reply to 2pray4us]

My husband was surfing the internet looking for alternative treatment and/or information about this disease.  He came across The Lung Institute website. 

I signed up to attend an online webinar, they explained the treatment.  They have 4 clinics in the US.  I think I have heard that The Cleveland Clinic also does stem cell treatment.  The Lung Institute has been doing this for only 3 yrs, so it is still considered research.

As mentioned before, I haven't noticed a difference yet. Hopefully, within the next month or two, I'll notice.

Beth 

[tanarg in reply to Beth1949]

The Cleveland Clinic? That's a highly reputable place.

[Beth1949 in reply to tanarg]

The Cleveland Clinic is very well known.  They do a lot of lung transplants there.  They are the next best to the Mayo Clinic. Hindsight, I should have gotten information from them, as well.

[2pray4us]

Hello everyone, and thank you all for your wonderful responses to my questions about the stem cell surgery. I guess when we are in a certain situation in our life and we want out and have no control we are willing to try the first thing that comes our way not really thinking of the consequences just the freedom from it, but there is one thing that I do know, that there is a God in heaven that loves us all, and in spite of our situations he will be there with us to the very end and bless us along the way, and it don't get any better then that, so God bless us all and I pray that God does have a miracle for us all,  He woke us up this morning!!!!

[tanarg in reply to 2pray4us]

2pray4us: I have a hard time sometimes accepting that God allows suffering for His own purposes. I don't pray for a miracle, because I caused this disease by my smoking, although I would love to be healed. I know that (I'm nearing 70) this body wasn't meant to last forever; my faith is that God will be with me every step of the way "to the very end" and will "bless us along the way." Sometimes, however, I cannot find Him, and I weep.

[2pray4us in reply to tanarg]

Hello Tanarg, how are you today? I understand how you feel and I agree with you totally. We do bring things like this on self, but even though we make mistakes, through Gods grace and mercy he helps us. I'm not saying that he will heal us all with a miracle, but if not he will surely give us enough blessings to take away the depression and pain that comes with this type of sickness. Instead of looking at the negative of this all, we have to look at the positive, we are still alive, we have our legs to walk even if we do walk slower,  and that's with most of us, we can still do, but just slower. Sure we miss out on swimming and running, even being out in the summer, but we are still here. We just have to take it one day, one step at a time. You will be fine

[tanarg in reply to 2pray4us]

I seem to be unable to stop punishing myself. I wrot thi the other day.

I am still struggling with my illness.

I’ve been punishing myself for smoking. 

But I’m not the one who should be punished. 

I am a victim of emotional child abuse. 

I have emphysema because I was trying to numb the pain from my childhood by smoking a powerful drug. 

I need to forgive my adolescent self for making that choice and getting hooked. 

I feel like an ugly monster with this thing (cannula) on, but in reality it’s just me with a cannula on, and I’m not an ugly monster with or without it.

(My parents weren't monsters or anything, but they didn't have any of the psychological awareness people have today and treated me as if I didn't matter, how I felt didn't matter, etc. I became friends with my mother when I became an adult, but my childhood was painful. I took the scars in my personality to college and beyond, and soothed my pain with nicotine.)

I keep rebelling in my heart and saying, "I don't want this. I don't want this." And I cannot find a way to stop doing that.

I'm sorry for hijacking this thread.

[2pray4us in reply to tanarg]

When we find ourselves in a space where we cant find the answer, we always want to blame someone, even God, but sometimes its no one fault, some things just happen. It had to be someone, why not you? why not me? We don't know but its no one fault, You cant let this thing get the best of you, make your time left count for something, spend more time with your spouse of grandchildren, your siblings, or just spend it getting to know that beautiful person you call self. The world is still a wonderful place, we just have to find our place in it.

[tanarg]

What you say is true; my remarks were meant to be an antidote to my punishing myself. Had I not self-medicated with nicotine, I wouldn't have emphysema. I said all that only to STOP myself from continuing to beat up myself. I think doing that has helped me, along with saying that I keep saying to myself, "I don't want this! I don't want this!" and getting upset. Since externalizing those words, I have amazingly stopped saying it to myself. I have no spouse or children or grandchildren, so being alone is another problem. I've been trying to find my place in the world all my life. I hear what you're saying, and thank you for saying it. But forgiving myself is a huge part of accepting this, at least for me.

Right now I need the strength to shower and go to the gym for exercise. Pushing myself to do what I need to do is the hardest thing in the world. Thanks for your support; I really appreciate it. 

I am still working (at home, where I edit books), so that is going well, but showing is a time when I get so SOB that I feel like it's all over.

Anyway, I wish I had a friend like you with whom I could speak every day.

[2pray4us in reply to tanarg]

I'm so sorry to hear that you have no close family members. Do you go to any health rehabs, pulmonary workouts or just out anywhere? Its always good to go somewhere. I don't go out much just to the dollar store sometimes or to church, once in a while  or on a warm holiday I might visit a relative for a short period of time, and of course doctor appointments.  Its not like it used to be. If someone had told me five years ago that this is where I would be in my life I would never had believed it. It hit me really hard at first, but through the Grace of knowing what God can do and the support of my family I'm ok, but once in awhile I go through a depression stage for no apparent reason at all but they say its part of the sickness. What I'm trying to say is just take it one day at a time, find something you really enjoy  and just enjoy life. And yes you do have a friend in me and you can always talk to me.

[tanarg in reply to 2pray4us]

I have to go to the gym to exercise because pulm. rehab. is over for me. It's run out time-wise. I go to psychotherapy twice a week and used to go to rehab twice a week but that ended in March and I've had a hard time getting myself to the gym. The hard part is showering, really. It seems no matter how slow I go, coming out of the shower I get SOB and feel like I'm suffocating and dying and the depression is astounding. Then I recover. But i put off showering, and I've put off going to the gym for a month. I have to go tomorrow because I have to mail something to a client in Belgium (and the post office is close to the gym) and simply MUST go. I have a close friend here, but she's got her own issues, too. I'm also not in the best housing situation, as I have to climb stairs to the second floor, where I live. I'm trying to get into better housing but it might be a while before that happens. Thanks for being here. I would love to be able to make it to Mass, too. I miss going to church, though I try to pray often and seek God's help as I go about my day. I know I'll feel better if I exercise, so I am going tomorrow. Thank you for being here for me, 2pray4us. God bless you.