He is one of my Best friends ... He has a fabulous sense of humor, is a musician, hard construction worker and a street clown. Always opened to meeting new people whomever they are and quite often leaves them smiling. At work people wont assume he is capable on a first encounter but he is the most capable person I have ever worked with. He had his first child roughly 3 years ago and the poor baby had his skull fused together. The operation was successful in splitting the bones allowing the brain to grow. Just when they think they are in the clear as a family he had a rough bout with a lung biopsy that came back with 2 kinds of cancer. He is on chemo now and the latest test indicated "Idiopathic Pulmonary Fibrosis" they believe the only option for survivability is a double lung transplant. I dont quiet know how the medical bills will be paid but this gofundme, at the very least, helps support the standard living cost and food for him and his family while he is unable to work. his health at the moment is not able to walk without coughing fits and attached to an oxygen tank. he is 36 years old. Our group of friends is rich in life and humor but unfortunately not rich in $$$. Anything helps! Thanks for reading. https://gofund.me/0e261438
proof of me -iserable count account
Has anyone experienced living with IPF in Singapore, either personally, through a loved one, or a close friend?
Would love to seek advise and exchange notes on the treatment and health care available, as well as any advise or best practices to cope with this very rare lung disease.
More about this, explained by WebMD: https://www.webmd.com/lung/what-is-idiopathic-pulmonary-fibrosis
He was diagnosed with his condition just before COVID-19 took its hold on the world. As you can imagine, him having a respiratory condition made us all the more worried for him. But he is permanently on oxygen now and not only are the tanks quite expensive ($112/week on average), they are also difficult to take around everywhere with him.
He has been approved to receive a portable tank by his insurance, but they will only reimburse him, not pay for it outright, which means he will never be able to get it for himself. He is 80 years old and is retired so doesn't have a bunch of income.
He has always been willing to help others -- especially with construction projects (his whole life was working as a labourer in various fields, the fragments of sawdust and metalwork possibly being responsible for the scarring on his lungs), issues with people's homes, and acting as unofficial taxi to his family. I don't think there's ever been a time in my memory where he asked someone else for something. He enjoys talking to people and used to go out to Tim Horton's (Winnipeg, Canada) almost daily to chat with his friends or strangers but is obviously restricted now.
When things get back to normal, it'd be perfect if he could regain his independence and freedom of movement with the portable tank.
If you can spare anything ($1 or $10 or whatever), I hope you'll consider giving to my grandpa, Brian.
My mom has set it up through the Facebook fundraising part of the site: https://www.facebook.com/donate/243057823847987/10159144072139439/
FB takes 2.6% and $0.30 CAD of whatever you donate. Something to keep in mind.
Thank you in advance!
So, my dad was diagnosed with IPF about 2 years ago. At first his symptoms were just a persistent cough and some shortness of breath if he walked a lot. But over the last few months both have gotten much worse - he has shortness of breath even with few steps and has to take oxygen. He almost can't walk at all without oxygen.
He's also lost a lot of weight and is looking frail. He's been on Esbriet for 1.5 years now and although it may have slowed the progression of his disease, it also has some serious side effects. He has zero appetite to eat and has constant bouts of diarrhea. And he's become quite depressed. I'm not sure if we should get him started on anti-depressants or not but we'll be speaking with his doc soon about it. I think a support group would really help him but with the COVID situation we haven't been able to go to any of them.
And I'm having a hard time dealing with all of this - I feel like I'm becoming depressed as well. I live with my parents and help take care of both of them. There are days when I don't want to deal with seeing him this way - he's really turned into a shell of what he was.
Not sure what I'm even asking here. Is there anyone else here who's been through something like this? How did you deal with it?
Edit: Here is the regimen and things we tried to get his coughing fits under control:
- sleeping on an incline
- avoiding any spices, caffeine, chocolate etc - foods that can trigger coughing fits
- exercising a bit - for my dad, this was him just walking back and forth around the house, with his oxygen on
- Chloraseptic lozenges (with benzoic acid) - they cause a numbing affect in the throat; you can order them from walmart or amazon
- Antitussives and cough suppressants like Robitussin and Benadryl
All of the above helped initially but as his symptoms worsened, we needed more help, so we are now using:
-
Ventolin nebulizer - a bronchodilator that seems to be helping
-
Increased oxygen flow rate on his main concentrator - he even sleeps with it on all night; he's on the high flow oxygen almost 24/7
Once these measures stop controlling his coughing fits, the final measure will be:
- Gabapentin 300 mg 3x/day - based on my research on IPF patients who've tried this and it worked for them
Hi all. So I submitted my info from 23andme to promethease. I'm confused because it says possible miscall in Ancestry. But I don't use Ancestry, I use 23andme. So does this mean I do indeed have this variant or no? I only did the Promethease thing on a whim, but now I am a little concerned because my father did indeed die from lung failure (and they did diagnose him with idiopathic pulmonary fibrosis shortly before he died). Thanks in advance.
https://preview.redd.it/qz2b9qo46dq51.png?width=1195&format=png&auto=webp&s=ca3e2f3f3b933036935102c94d75d99073a92639
https://gigs.savvy.coop/survey-ipf/?r=41401
Requirements: Current diagnosis of idiopathic pulmonary fibrosis by a healthcare provider Proof of diagnosis will be required to participate Ages 18+ Fluent English speaker, but does not need to be the primary language U.S. citizen
Details: 20 question survey From home
Receive: $20
In the Restrictive Lung disease sketchy path video, they say that due to increased elasticity of the lungs, there is increased radial traction/airway diameter and thus decreased resistance and minimal change in FEV1.
I always thought that elasticity just referred to the lungs wanting to contract and become smaller after inhalation, and so increased elastic recoil = higher pressure in the alveoli during expiration = able to expire a good amount of air quickly (thus little change in FEV1). Does anyone know if sketchy path's airway diameter explanation is correct?
Hi, I'd like to know if one can live more than 10 years with IPF but with no noticeable symptoms, shortness of breath if any.
My father is diagnosed with IPF and presumably he has been living with the disease more than 9 years;
CT scan taken in 2010 shows the sign of ILD and it looks like it midly progressed
(the progress is so minimal that one of the doctors we met think it didnt progress at all)
and we are waiting for further examination but we have to wait another month.
I'd like to know whether it is usual for the patients with IPF to live more than 10 years with no symptoms/discomforts.
Hope we can rule out the possibility of it being IPF.
Thank you!
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My father is
60 years in age
Asian
Has been treated for psoriasis for past few years,
Has Herpes(Heard it can be a risk factor for IPF),
Non-Smoker(quitted 10+ years ago),
5.8ft / 150lb
Experiencing mild shortness of breath (looks like I am the only one notice it in my familiy. He often sighs with no reason)
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https://gigs.savvy.coop/survey-ipf/?r=41401
