Idiopathic Pulmonary Fibrosis

[TheNileyStation]

My dad has this right now, I still can't believe that he has this. I refuse to believe it. he is still very young in his late 40s, and I am only 18.. He is in the hospital right now with pnemonia and has very bad bacteria in him. Everyone is staying strong, but I feel like the only thing there is to do is have a long transplant. They said they give him 2 years. But I don;t believe it, is this really the only way?

[Chazzzum]

My Mom passed from this HORRIBLE disease yesterday. I am heartbroken. She spent 4 years on O2 and I watched her waste away from a vital 145lbs down to 105. She also got major depression and panic disorder...it was panic 24/7. Finding a Dr. for psych care and meds was amost impossible and even then she was kept on 'the smallest possible dose' due to her age of 79. Her last 911 call intubated her which did her in. I had her extubated and put on a morphine drip. She died peacefully in 35 hours.

[beau2fullife]

I was diagnosed as well at 41....

[LupusLife]

I was just diagnosed with Pulmonary Fibrosis yesterday. If anyone would be willing to message me I could really use some support. I am only 40 years old.

[bhsdallas]

My father died August 4, 2011 from IPF. He was in the late stages while in the care of hospice. Be cautious that hospice isn't too agressive in the end. Ask a lot "A LOT" of questions, and be prepared. It's the most difficult thing to endure. I watched my father take his last breath and his life slip away. I pray he's up there someplace breathing easy and watching us all.

[maychen]

I'm so sorry for your loss. This made me cry for your dear dad. I'm being tested to see if I have this disease right now (I hope it something else.) Oh, that poor man. :( Really sorry the medical staff there were such failures for him.

[trippyay]

i do not believe in 'god' but i share your hope that our family members are now in a better place. life can be very unforgiving.

[bhatani]

My mom died of this Monster Disease last month. She was 58 only. She had ILD (IPF ?) since 2005..everytime she visits the doctor, the doctor was surprised how could she be so well despite progressive Honeycombing in both lungs. Who would have thought that she would have died only after three days when serious syymptoms (Severe SOB) hit her first. Admitted in Hospital on 16th June, 2011 and died on 19th.

We all miss you Mom. You're still there with us in our heart forever.

[manuel1582]

Siento un montónla pérdida de tu padre, espero que seas fuerte y lo superes, un abrazo desde Madrid

[BlueStateChronicle]

That was pretty heavy duty. He actually looked pretty good for pulmonary fibrosis.

[trippyay]

@BSC: he always refused to admit his condition. he was extremely strong-willed. personally i believe this made a difference. if you believe you will die -- then you will die. he held out for about 2 years beyond his diagnosis and i believe his willpower had a large role in it. even in his final seconds, dosed on rediculous amounts of morphine, he still tried to hold my hand as he faded away. he nearly broke it, he was holding on so tight -- he was so scared. i'll never forget that moment.

[darrenmajesty]

I'm sorry i can't watch this video, but i lost my father in October '10 to the very same thing, except he died while unconscious. I just wanted to give you my condolences and let you know you're not alone.

[ilyaj07]

Just read the description :( so sorry.

[ilyaj07]

My dad actully died from ipf :( hope he's okay!!!! Praying for him :(

[jrkracing]

My father died two days ago with IPF - I am so hurt cause its not fair - he was only 67 y/o. Looking at your video made me so empty. We laughed and cried - up until the end. I watched him die, and with it, I died as well. He asked me to open the windows so he could get the last look outside. He finally said, I don't want to live like this, I am ready - He looked into my eyes and said let me go - but I am still holding on. RIP - Stephen Burke Cole Sr. I will always love you Dad. Thick N Thin...

[trippyay]

@jrkracing

my condolences man. i understand what you're going through. my dad said virtually the same thing -- they couldn't just "pull the plug" so they just stuck him on large doses of morphine and a "do not resuscitate" tag. he went peacefully in the end. just sort of drifted off to sleep after fighting really hard to breathe.

[jrkracing]

@trippyay the same thing with my dad, morphine to the end, the saddest part was - everything else in his body was in good shape...sad, sad, sad... Thank you so much for responding my friend it helped me to know someone else had to suffer my dad's fate. Please don't take that wrong I mean it with the greatest respect. My 12 y/o was very close to grandpa - its hard to let go trippyay. I would pay all I could to have him back just one more minute - take care and thank you so much...Steve Jr

[jrkracing]

@jrkracing I don't know what I was trying to say - I would never want anyone to suffer like this - its so horrible to watch your loved ones just struggle to breathe. I didn't mean any harm in my words to you. I am not glad to see your father suffer like that, what I was trying to say is - I thought I was the only one who suffered from that perspective.... I sincerely hope you understand - sorry if I miss spoke - Steve

[MSM4U2POM]

Condolences, my friend. I know exactly what you went through, because this monster killed my own dear father last November. Many of us have heard of it; few have any notion of the suffering, the sheer, unadulterated misery it causes, not just to the victim, but to loved ones as well. You never feel more guilty or helpless than when all you can do is watch somebody you love dying slowly and horribly. Respect.

[mccman101]

my father also died of idiopathic pulmonary fibrosis, and we did sue the hospital after for not giving him the treatment for it

[trippyay]

@mccman101

that's interesting, can you tell me more about that? i was considering a lawsuit because they sent him home with an infection and didn't supply him with appropriate meds -- among other things -- however the documentation lists his cause of death as "pulmonary fibrosis" and not the lung infection he "actually" died of and so far i've been advised not to sue. i've got 3 years to do it according to british law, and it'll be two years in august.

[mccman101]

@trippyay well the hospital just didnt do anything,. look into what they did for him, and see if they could have done more.

[TheNewMusicNetwork]

That sucks, I hope you guys sued them.

[WalterThSobchak]

Dad died in 04...he was 56...you guys have a pretty good case against the hospital...i hope that you took action...however, IPF can be very aggressive...4 months from onset to death in my dad....thx for the video

[trippyay]

i am sorry for all of your losses. posting this video has turned into one big thread about death and suffering, and a sort of hopeless inevitability for those involved. about the air we breathe... just not being enough. just know that you are not alone, and keep spreading the word, because as it stands -- it's just not enough.

[Mercantik007]

I am so sorry for your loss..I lost my father (+53) When I last saw him .. .. we laughed and joked. He was very strong and fought until the last moment. It is 8 months after his death. Every day I remember. He was a great man.

[zoylaM]

@Mercantik007 I lost my brother too. is very sad . he was only 49..he died march 10..after 5 year FPI and COPD ..too .todo es muy triste .verlos morir asi...sorry for you lost..te comprendo..He was a great man too. the best brother/

[CrackmeupKyle]

Pulmonary fibrosis is a growing problem that people need to be aware of!

That why i made a video about pulmonary fibrosis charity video,

i made it for p4A....

It was because of my aunt who recently passed from pulmonary fibrosis.

Thank you for your time=]

[trippyay]

@CrackmeupKyle

watched it -- thanks for the effort and for spreading the word.

[jorgekaya]

I lost my father(64)a month ago due to pulmonary fibrosis. My father hid a lot of emotions and frustrations over the past 4 months but also was a time where the family expressed his great love and affection.

My father was a hardworking man with the disease or even imagined return to work. He went to hospital on 22th October and died on 26 October, last time I saw him very aware of everything but a sad moment..We are with you, greetings from Lima, Peru

[zoylaM]

@jorgekaya hola lamentablement mi hermano fallecio este 10 de marzo. entro con neumonia y tenias razon ngreso y al mes y dias murio porq sus pulmones dejaron de funcionar. es muy triste ver como una persona se apaga con esta enfermedad y es muy desesperante para quien la padece .imaginate no poder respirar ..no se podia hace nada yamuy tarde nos dimos cuenta de la gravedad de su caso ..asta el ultimo estuvimos con el hasta que partio con Dios.y ahora alla donde el esta no necesita mascara H2O

[jorgekaya]

@zoylaM Mi mas sentido pésame, lo que te consuela y tambien a mí es el hecho de saber que no sufren mas y que además estan en un mejor lugar libre de todas las penas de este mundo....Cdte y saludos a la distancia., atte Jorge

[bhatani]

@jorgekaya My mom died of this Monster Disease last month. She was 58 only. She had ILD (IPF ?) since 2005..everytime she visits the doctor, the doctor was surprised how could she be so well despite progressive Honeycombing in both lungs. Who would have thought that she would have died only after three days when serious syymptoms (Severe SOB) hit her first. Admitted in Hospital on 16th June, 2011 and died on 19th.

We all miss you Mom. You're still there with us in our heart forever.

[jorgekaya]

@bhatani I share your sadness, how much your family has suffered ... Your mother and my father were very courageous people who are now enjoying the peace and glory of God .... a big hello from Peru

[OriginalMissKitty]

Sounds like he died of undiagnosed ARDS. IPF is one possible complication from ARDS.

[trippyay]

@OriginalMissKitty

interesting you mention that -- he was in a spanish jail (on a charge he was later cleared of, mind you) for two weeks back in 2000, and had been experiencing breathing difficulties at night since then. we believe he most likely picked up a fungus there, which immensely accelerated his condition through what's collectively called interstital lung disease. this was never diagnosed, so it was basically just left to get worse.

[OriginalMissKitty]

@trippyay What's crazy is that my cousin just had a double lung transplant because of IPF...she had it for 2 years, so maybe she had undiagnosed ARDS, as well. Seems to be going around. Anyway, she got her transplant seconds after they started intubating her because she could no longer breath. She just got out of the hospital.

[jorgekaya]

si Evelyn se fuerte, perdí a mi padre hace una semana victima de la fibroris pulmonar, el fue muy fuerte y tres dias antes fue al hospital donde no regresó mas, en el caso de mi padre fue algo mas fulminante, salio de mi casa bien parado pero con ya la agitacion conocida tres días despues falleció y por lo que sabemos casi sin sufrir ....Fuerza porque esto es como una vela que poco a poco se desvanece.... RIP

[zoylaM]

@jorgekaya pero cuanto tiempo tenia el enfermo? no usaba oxigeno? porq mi hermano esta pasando por lo mismo ya lleva casi 5 años y hace una semana desarrolo una neumonia que ahora el esta usando oxigeno para poder repirar y le an dicho que solo un trasplante le salva la vida .que impotencia no poder hacer nada para q su condicion mejore porq hasta las mismas medicinas le dañan ..

[jorgekaya]

@zoylaM Vaya el caso de tu hermano me llama la atención, mi padre en realidad empezó agitarce con mayor frecuencia hasta hace 10 meses, y desde el mes de julio por la misma falta de oxigeno su actividad se redujo a la casa aunque igual salía, la tos era intolerable para mi padre. El no usaba oxigeno, creo que lo evitó, solo en el hospital lo usó y fueron sus últimos dias. El transplante es la única solución pero hay miles de personas esperandolo.

[zoylaM]

@jorgekaya oh! la tos la tiene desde hace 5 años llego a bajar de peso no te imaginas, hasta q un dia fue al medico 2años despues y le dijeron q no tenia nada viendolo asid flaqito paso el tiempo hace una año de casualidad fue al doc y alli recien le dijeron lo que tenia .pero tu sabes como no se sentia tan mal siguia trabajando hasta ahora pero la enfermedad siguio avanzando y es por eso q ahora esta tu ya sabes..que pena y si que la lista de espera es larga pero confio en Dios por un milagro!

[jorgekaya]

@zoylaM Creo que la enfermedad empezó a desarrollarce en mi padre 8 a 10 años antes. La infección de las vías respiratorias es gradual y los que necesitan oxigeno generalmente es porq apenas tienen 10 a 15% de un pulmon en uso. Lamentablemente no se puede hacer nada, la neumonía a colocado a tu hermano en etapa terminal....todas las bendiciones para tu hermano y toda tu familia

[bennett1985]

I'm sorry for your loss. My mother was diagnosed august 24th, this is all so new to me.

[steveandjulie1990]

I am so sorry for your loss. My dad has this terrible disease and is in the final stages. It breaks my heart to see a person suffer like this. My dad has never been a smoker or drinker, just a regular Dad, husband, father and career in the Navy. I'd be interested in the lifestyles of the people who have had this disease. IPF kills as many people each year as breast cancer, there needs to be much more awareness. Thank God for the UW and the wonderful Doctors that have been there for my dad

[trippyay]

@steveandjulie1990

i'm sorry you have to go through this. it's heartbreaking to have to watch and know that there is nothing you can do. i hope you've all accepted the outcome because it can be very difficult to deal with the aftermath if you haven't prepared. all the best to you and i hope he lasts a while.

[steveandjulie1990]

@trippyay Thank you, We lost our beloved father 3 days ago. This is very difficult and all so surreal. Hopefully there will be more awareness regarding IPF and some type of control of the disease or cure will be soon in our future.

[trippyay]

@steveandjulie1990

wow. i am so sorry. i didn't mean to bring it up while he was in his final stages. it's such an awful disease. i'd like to say "let me know if there's anything i can do" but i'm so far away it probably wouldn't make a difference. just know that you have a friend who went through the same thing, and a person who will send you their best wishes through this time of hardship. for what it's worth -- life goes on whether you like it or not. keep smiling....

[aimipassociazione]

same experience here. That's because AIMIP no profit association exists.

[aimipassociazione]

My father died from IPF same sad experience.

[skaji211]

sorry about your loss. My mother just passed away this week in the hospital from pneumonia and IPF. She also had about a year left and was getting on the transplant list when she came down with this horrible infection. Unfortunate thing is the dr's ruled out infection too early and gave her more immune suppresants, which gave her infection even more strengh.

[trippyay]

@skaji211

sorry for the late reply -- yes that sounds all too familiar. doctors who don't specialize in the field really have no clue what to do with this illness and will prescribe a cocktail of corticosteroids + antibiotics + immunosuppresants... which basically does absolutely nothing other than destroy the immune system and cause water retention. IPF is a disease that is growing rapidly in its' number of victims, yet there is very little awareness because it's "not cancer".

[ColdNova75]

I am so , so sorry for your loss, and for your Dad's suffering. My Mum died of this horrible disease 18 months ago , and as you say the hospital staff where utterly crap.

At least people like yourself are proactive in educating others , I'm sure your Dad would have been proud of you , all the love x

[arisspublications]

It killed my dad too! Really nasty disease the hospital had no clue.

[eyeflow9]

I am so sorry this happened to your father. My dad has IPF and we don't know how long he has left. Hoping for a miracle. Sorry again to read that he didn't get proper treatment. Thanks for the upload.

[uconnstudent]

I am sorry for what happened to you and your father :'(

I am sure he is watching you from somewhere in the sky, and is waiting to see you again someday

[TX83Dallas]

I'm sorry for your loss.

[AprilSandmeyer]

God bless him. I had someone very dear to me die in my arms with this disease also. It is horrific.

[mikeandmiketv]

IPF killed my grandma in the hospital :(

[Franzapooch44]

I am very sorry for your loss

My Father has IPF. I know EXACTLY what you went through.

Terri