I am so sorry to hear that, for my understand I grew up with Chinese herbal and acupuncture,but some scary with this Diagnosis, I heard about some herbal like high mountain grow mushroom( ling ZHI) can increased the immune system of lung, but a lot of fake one out there, try to sell to make profit, just have to be careful when buy it, and cooking and drink like te, may help you sustain longer tim, of course can not replace the real western medicine treatement though, in old generation Chinese
tim, google cure fibrosis and enter to the website "earth clinic" my dad has been diagnosed with fibrosis as well and he has some treatments to slow it down but officially there is no cure. i am trying this on the side, let me know what results you get.
Dear Tim (hopefully still with us) & to all, I know nothing about this disease but check out 'hydrogen peroxide therapy'. It's said that if you've had a transplant then HP will be NO good as it boosts the immune system which would cause rejection. People are claiming to use HP for all kinds of major illnesses as it oxygenates the body. Check it out, do your research, BUT BE WARNED, always start off with very little dosage of anything new until you know how it affects YOU. God bless you all.
God bless you, this is one disease that really terrifies me. Anyone who gets a diagnosis of this has my deepest sympathy, anyway i heard of one potential piece of research to do with an enzyme involved in fibrosis.
That treatment had effects in rats, when you think of the situation some really sick people are in they would want to get the drug and red tape/safety testing be damned. You would try anything if suffering from a terrible disease with a bad prognosis.
I have IPF and was diagnosed in 2003 with four to six years to live, after 8 im still here. I pray for you and i pray for anyone living with this disease. Im 33 years old and i have four wonderful children, aging in range from 16 years to 9 months. Please help in finding a cure for those like me who cant undergo lung transplants. I had a PE recently so i cant have any anasthetic for fear it would cause another clot and be my death. I love you all and pray for yous.
My mom just passed away from PF at the age of 48, she was diagnosed at the age of 40. She passed away 3/4/2011. She was told that she could not get a lung transplant. I will help find a cure.
i just came across this product the company is called healthy peoplethey have a treatment for fibrosis my e mail is matias_sierra_heo@yahoo.com
the treatment consists of a product called goji-man- healthy coffee-nectar ancestral-and vida-fem if you want to try this out give me a call 661 208-6325 you have nothing to lose but everything to gain God Bless You thanks
I hope you are still with us. Please check out Serrapeptase which I use. I do not sell it. It is supposed to be the worlds most effective fibrinolytic enzyme as it melts away silk, which helps liquify excess fibrin, scar tissue, help breathing issues, inflammation. Just check it out :) BTW this is used by doctors everywhere but in the U.S., since too much money is made on medications here, can't afford for people to find out about this, a silkworm enzyme....
My prayers are with you Tim. My mother in law also suffers from IPF and the disease has progressed to the point that she was just placed on the transplant list. She is going to begin taking steroids in hopes that it might help her. Her recent biopsy indicated that Pirfenidone will not help in the progression of her fibrosis, so now we wait. Thank you for sharing your story. Take Care
that sounds more to me like someone doesn't want to cover the cost of the pirfenidone. there are pharmaceutical companies that charge as much as a thousand dollars PER PILL for the stuff. the steroids will do nothing to alleviate her suffering. being 'too well' for a transplant is also a copout, because any doctor worth their salt knows that this is a 100% terminal disease.
Hello, I was also diagnosed with IPF in 2004 I was only 41 years old at that time. It has been 5 years since my diagnosis I am just on a stable condition with the help of Immunosuppressant medication, I am currently taking Prednisone and Cellcept has anyone here tried these medications? I have been on it for 5 years now and my Pulmonologist is slowly tapering down the dosage of my prednisone. I was put on waiting list once. but they denied me because I was doing well enough. Good Luck!!
do NOT keep taking the prednisone. it's nothing more than a placebo, and the side-effects are horrible. get tapered down as soon as you can. you can't just stop taking it. IPF is _incurable_ don't let ANYONE tell you any different! it WILL kill you, and the only hope you have is a transplant. cellcept is a powerful immunosuppressant -- be careful you don't come down with pneumonia.
I will be doing my PFT test on 9/29/09. I am on 10mg of prednisone every other day. I know these medications are pretty powerful, specially cellcept, I use to take Imuran 100mg 2x a day, but it gave me problems with my liver so they changed to cellcept. I did all the extensive test for a Lung Transplant but they said I am too well to be on the list yet. I had a pretty good insurance and they do cover the transplant.
Prayers to you! My husband was diagnosed with PF 2 1/2 years ago at age 39 and is being treated at NJ in Denver. Thankfully the meds are working and he isn't on 02. God Bless!
Hello, im 16 and 2 months ago my nan died of this at an age of 52. I miss her so much and this disease is so cruel. I am struggling to remember the times past her illness and i would have done anything for her to be here right now. I love you so much nan, rip xxx
hi tim. i've just posted a video of my father shortly before his death. he died of IPF, miserably and slowly over a long period. there is no cure for this horrible illness, and i am also trying to spread awareness. towards the end, he wanted help to kill himself to end the suffering, but it was too late. don't let this happen to you. also: look into a drug called "Pirfenidone" and ways of acquiring it. it's expensive, but it just may save your life.
Hi, I'm 43 years old and was recently diagnosed with PF. I was diagnosed with lupus in 1994. My mom had lupus and PF, but the PF was caught too late and she passed away in 1999. She only lived about 2 months and was on oxygen 24 hours a day. So far they have not put me on oxygen, but judging from the way I feel, I think I might need to be on it. My prayers are with you!
My dad has just been diagnosed with this too, it is not known enouch about! im trying to learn more about it. My prayers are with you and always remain positive. We are in the uk and the doctors dont know too much about it, my dad cant be treated but is being put forward for a lung transplant too. My thoughts are with you and always remain positive, there is always hope. Thankyou for this video x
I am so sorry to hear that, for my understand I grew up with Chinese herbal and acupuncture,but some scary with this Diagnosis, I heard about some herbal like high mountain grow mushroom( ling ZHI) can increased the immune system of lung, but a lot of fake one out there, try to sell to make profit, just have to be careful when buy it, and cooking and drink like te, may help you sustain longer tim, of course can not replace the real western medicine treatement though, in old generation Chinese
hsiaofonglinkane 4 days ago
tim, google cure fibrosis and enter to the website "earth clinic" my dad has been diagnosed with fibrosis as well and he has some treatments to slow it down but officially there is no cure. i am trying this on the side, let me know what results you get.
carthian1 2 weeks ago
Comment removed
carthian1 2 weeks ago
Dear Tim (hopefully still with us) & to all, I know nothing about this disease but check out 'hydrogen peroxide therapy'. It's said that if you've had a transplant then HP will be NO good as it boosts the immune system which would cause rejection. People are claiming to use HP for all kinds of major illnesses as it oxygenates the body. Check it out, do your research, BUT BE WARNED, always start off with very little dosage of anything new until you know how it affects YOU. God bless you all.
chaneyindi 3 weeks ago
God bless you, this is one disease that really terrifies me. Anyone who gets a diagnosis of this has my deepest sympathy, anyway i heard of one potential piece of research to do with an enzyme involved in fibrosis.
That treatment had effects in rats, when you think of the situation some really sick people are in they would want to get the drug and red tape/safety testing be damned. You would try anything if suffering from a terrible disease with a bad prognosis.
Parasmunt 1 month ago
I have IPF and was diagnosed in 2003 with four to six years to live, after 8 im still here. I pray for you and i pray for anyone living with this disease. Im 33 years old and i have four wonderful children, aging in range from 16 years to 9 months. Please help in finding a cure for those like me who cant undergo lung transplants. I had a PE recently so i cant have any anasthetic for fear it would cause another clot and be my death. I love you all and pray for yous.
luvubug 4 months ago
God bless you tim, RIP.
casualthug07 8 months ago
Man i was born with the shit.
Borso86 9 months ago
hi Tim...l pray you are still with us
WENDOHPAYNE 11 months ago
My mom just passed away from PF at the age of 48, she was diagnosed at the age of 40. She passed away 3/4/2011. She was told that she could not get a lung transplant. I will help find a cure.
desireer1992 1 year ago
My aunt passed from pulmonary fibrosis
this summer she was in her seventies...
I made a charity video for the disease, so take a look, and please donate
!
im sorry to hear your story, i have a place in my heart for you<3
CrackmeupKyle 1 year ago
i just came across this product the company is called healthy peoplethey have a treatment for fibrosis my e mail is matias_sierra_heo@yahoo.com
the treatment consists of a product called goji-man- healthy coffee-nectar ancestral-and vida-fem if you want to try this out give me a call 661 208-6325 you have nothing to lose but everything to gain God Bless You thanks
MrMatiassierra 1 year ago
hey tim, it's been a while, how are you doing these days? still with us i hope.
trippyay 1 year ago
I hope you are still with us. Please check out Serrapeptase which I use. I do not sell it. It is supposed to be the worlds most effective fibrinolytic enzyme as it melts away silk, which helps liquify excess fibrin, scar tissue, help breathing issues, inflammation. Just check it out :) BTW this is used by doctors everywhere but in the U.S., since too much money is made on medications here, can't afford for people to find out about this, a silkworm enzyme....
TroyGotham 1 year ago
Great video Tim. My grandfather was just diagnosed with PF and now must live with oxygen. You're in my thoughts buddy.
DentlessDave 1 year ago
My prayers are with you Tim. My mother in law also suffers from IPF and the disease has progressed to the point that she was just placed on the transplant list. She is going to begin taking steroids in hopes that it might help her. Her recent biopsy indicated that Pirfenidone will not help in the progression of her fibrosis, so now we wait. Thank you for sharing your story. Take Care
loafybean 2 years ago
@loafybean
that sounds more to me like someone doesn't want to cover the cost of the pirfenidone. there are pharmaceutical companies that charge as much as a thousand dollars PER PILL for the stuff. the steroids will do nothing to alleviate her suffering. being 'too well' for a transplant is also a copout, because any doctor worth their salt knows that this is a 100% terminal disease.
trippyay 2 years ago
Hello, I was also diagnosed with IPF in 2004 I was only 41 years old at that time. It has been 5 years since my diagnosis I am just on a stable condition with the help of Immunosuppressant medication, I am currently taking Prednisone and Cellcept has anyone here tried these medications? I have been on it for 5 years now and my Pulmonologist is slowly tapering down the dosage of my prednisone. I was put on waiting list once. but they denied me because I was doing well enough. Good Luck!!
rvijandre 2 years ago
do NOT keep taking the prednisone. it's nothing more than a placebo, and the side-effects are horrible. get tapered down as soon as you can. you can't just stop taking it. IPF is _incurable_ don't let ANYONE tell you any different! it WILL kill you, and the only hope you have is a transplant. cellcept is a powerful immunosuppressant -- be careful you don't come down with pneumonia.
trippyay 2 years ago
I will be doing my PFT test on 9/29/09. I am on 10mg of prednisone every other day. I know these medications are pretty powerful, specially cellcept, I use to take Imuran 100mg 2x a day, but it gave me problems with my liver so they changed to cellcept. I did all the extensive test for a Lung Transplant but they said I am too well to be on the list yet. I had a pretty good insurance and they do cover the transplant.
rvijandre 2 years ago
Prayers to you! My husband was diagnosed with PF 2 1/2 years ago at age 39 and is being treated at NJ in Denver. Thankfully the meds are working and he isn't on 02. God Bless!
smhamtube 2 years ago
Hello, im 16 and 2 months ago my nan died of this at an age of 52. I miss her so much and this disease is so cruel. I am struggling to remember the times past her illness and i would have done anything for her to be here right now. I love you so much nan, rip xxx
emmadoll01 2 years ago
hi tim. i've just posted a video of my father shortly before his death. he died of IPF, miserably and slowly over a long period. there is no cure for this horrible illness, and i am also trying to spread awareness. towards the end, he wanted help to kill himself to end the suffering, but it was too late. don't let this happen to you. also: look into a drug called "Pirfenidone" and ways of acquiring it. it's expensive, but it just may save your life.
trippyay 2 years ago
Hi, I'm 43 years old and was recently diagnosed with PF. I was diagnosed with lupus in 1994. My mom had lupus and PF, but the PF was caught too late and she passed away in 1999. She only lived about 2 months and was on oxygen 24 hours a day. So far they have not put me on oxygen, but judging from the way I feel, I think I might need to be on it. My prayers are with you!
hotlupuspatient 2 years ago
Hi Tim,
My father has just been diagnosed with this. He will always be with oxygen. I will go to the site that you said. I will pray for you.
God Bless
Franzapooch44 2 years ago
Thank You so much Ill continue to pray for all who suffer with this PF and there loved ones god bless Tim
TWD368 2 years ago
My dad has just been diagnosed with this too, it is not known enouch about! im trying to learn more about it. My prayers are with you and always remain positive. We are in the uk and the doctors dont know too much about it, my dad cant be treated but is being put forward for a lung transplant too. My thoughts are with you and always remain positive, there is always hope. Thankyou for this video x
KarleyLou 2 years ago