Idiopathic Pulmonary Fibrosis

This is my father. He had IPF as an underlying condition, and he died in my arms less than 20 minutes after this video was filmed. He was originally admitted into hospital because the corticosteroids he was prescribed caused his immune system to fail and he came down with a bout of pneumonia, which he recovered from after about two weeks -- then they kept him waiting for 5 days after receiving the all-clear to be taken home (because they didn't have "the right kind of ambulance" available), during which time he picked up another infection, which is what killed him less than 4 days later (he was re-admitted into hospital the very next day after being released). The hospital staff knew of this, and still refused to supply him with the appropriate medication to keep him from flaring up again even when they did finally release him at the time.

He was supposed to have another 8-12 months. Plenty of time for a transplant.

The video was filmed at his request. He wanted to start blogging his experiences -- he thought he was going to make it out of the hospital. He never once thought to drive the point home that he knew he was going to die, even though he did know, for several years.

This is how it ends, my friends -- not with a bang, but with a whimper. Strong and assertive as you may be -- you won't be when you're on your death bed. R.I.P. Dad -- I can only hope I'm as strong as you were when my time comes.

Category:

People & Blogs

Tags:

• IPF
• death
• suffering

[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.

[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.

[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.

[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.

[timanorth]

I lost my mom to this disease in Oct. 2011. I am only 30. In June of 2011 I was walking with her everyday, trying to keep her strength up, but now...she's gone. My mom always felt that having a lung transplant would improve the situation. But after she passed I asked my aunt, who has been a doctor for awhile, "if my mom got new lungs, would she be fine?". She said that in all cases that she has seen, patients get new lung transplants, and then acouple years later the body rejects the lungs.

[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.

[mccman101]

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

[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.

[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

[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.