Idiopathic Pulmonary Fibrosis: Bills Story
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- Опубликовано: 8 апр 2019
- Bill Van Nierop, who lives with Idiopathic Pulmonary Fibrosis (IPF), defines himself as an IPF patient not an IPF sufferer. Bill talks about the stigma surrounding lung disease, the impact this has on research and his goal to to help others living with a lung disease through raising awareness and changing community perspectives.
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I lost my dad to this vicious disease!!! Took a long time to get diagnosed - he was a geographer, never a smoker. They had no idea why he got this. All I know is I can't stand the loss of him...
This horrible frightening disease took my beautiful husband 2 years ago! Some help needs to be found soon!
😞
My husband has this and emphysema sorry for your loss God bless 🙏
Sorry for your loss. My husband seems to be progressing fast. So horrible to see. Sorry for your pain. Found this while searching for info about this disease 😞
Good on you Bill to talk about IPF , I have IPF too , I am in Melbourne , it is unbeleivable the negativity from some people .
My mother sadly passed away due to this disease rest in peace to her and others who passed. Find a cure.
Hi, I am Deanna from the country of Trinidad and Tobago. I was diagnosed about two years ago after noticing sogns and symptoms that my doctors did not understand. I am a Teacher and it is frustrating to deal with the lack of information and support regarding this disease in my country.
People can really be cruel.
1. Do you take ofev as part of your medication ?
2. How are you doing ?
3. How long have you been on your medication ?
My husband been taking ofev about 5 weeks. Blood work showed a 10th spike in liver. Dr said continue. Meds have not gave him any side affects he takes with half peanut butter sandwich as dr recommended. Dr said it takes a year to know if pill is working but getting cat scan in 6 months will tell alot also. He was diagnosed around March 2022. Went on 2 liter oxygen july. He has good days and bad days. Is not leaving house much he is 77 ver active healthy man till this. I wish I could find a online support group for him. As I have searched RUclips journeys not much or comments are shut off
I’m glad to see comments are open on this post. It’s hard to find info or what to expect with ipf. My husband has it. Seems to be very progressive. Learned on a support group only way to stop it is lung transplant. Thank you so much. I hope more ppl comment. Why won’t drs tell you with to imagine if it’s stable slow growing progressive. Wait wait wait for more rest to get the oil. Been 4 months. 2 months to go. Waiting on clearance from kidney dr his dr new scans now waiting on. Gi dr. 😞
How can I identify it's progression can you tell me pls ma'am
@@tubeyou1718 I wish I knew. My husbands activity slowed a lot not sleeping well. Very pale clammy. We just learning as we go I think doctors can’t guess about it either my husband now been
On ofev 5 weeks. Still he is declining. Has good days and bad days. I’m not a dr. Just riding this roller coaster journey with my husband. He is on 2 liters of oxygen 24/7 he’s still eating well. Best wishes to you and your family.
@@cskiles318 i have heard that starting the treatment of high quality Manuka honey can reduce fibrosis so i am going to start that treatment in the next week and my father is coughing a lot he is pale sometimes but he is without oxygen and he also do daily activity hope your husband recover from this situation best wishes
I'd been a non smoker for 42 years!
I lost my mom to this disease
Deterioration of the lungs CAN be stopped by using high quality Manuka honey through a nebuliser. I was diagnosed with IPF in 2007. Within 2 months of starting this treatment my coughing had reduced 98%, and within 6 months the disease was no longer progressing. I still suffer from this disease, but 15 years later I am still here, thanks to that magnificent honey.
Hey buddy pls help me can you share your instagram I'd my father is diagnosed with fibrosis so pls help me out
What ump you have taken
Pls answer me
@@tubeyou1718 no no
At this point i'm still very shocked with the negative result I got after suffering from pulmonary fibrosis for so long. Thanks once again Dr.Ogudugu on RUclips for your medication.
Hi,my name is Mal.i live in South Africa I have been diagnosed about 3 years now.i am on continuous oxygen as I also have pulmonary hypertension.can u please tell me what medication Dr.Ogududu has prescribed.Many thanks.
they are all masters who deceive the poor and sick
only jnapani with all the healers with their plants, good people stop talking to these criminals