The inevitable….

[Chris Soper]

Personally am not a sufferer but my late husband was and am sure end of life has been raised before so type away.  Knowledge (aka personal experience) is power and all that.

Hugs for what you are going through.

[Samuel Kirton]

I had a reader of my column looking for a discussion on this topic. I will send him to this discussion.

Sam …

[GratefulDeb]

Thanks everyone.  Been a long day for me and I’m not in a good headspace to write at the moment.  I will post something tomorrow as I really need to purge some thoughts.

[Monica Loftin]

I think we should be able to ralk about everything that is related to IPF. So please go ahead.

[Christie Patient]

Absolutely Deb. There are several open threads on this topic already if you want to read what others have said (plug keywords into the search bar in the top right of the page), but you are more than welcome to use this space to start your own discussion about it.

Per our forum policy, we don’t allow discussions about self-harm or violence to others, or discussions that promote self-harm or suicide. This includes discussions about death with dignity. Otherwise, all end-of-life topics are welcome here. It’s a safe place to talk about that part of the PF journey.

[Jim Jackson]

I was recently diagnosed with this insidious disease, and definitely would be interested in having an understanding of what I can expect to happen in the final stages.

[gaston]

Estoy de acuerdo en iniciar y mantener una discusión acerca del camino inevitable a que nos lleva esta enfermedad. En mi caso yo tengo FPI.

 

[Marti]

Hi GratefulDeb,

I think about my end of life situation for a long time. Wondering and not getting info is the worst. I found a topic on this and got a book that was recommended. It gave me so much solace. I cried through the first 5 chapters. I do recommend it: Pulmonary Fibrosis JOURNEY: A counselor and Fellow Patient Walks with You  by Kim Fredrickson

I got it on Amazon on my Kindle app. First of all, be kind to yourself. I have been more focused on what I want and what I will need. I have come to understand what I am afraid of and what can help.

You can talk about any of it here.

[Thomas Johnson]

End of life is absolutely a legitimate topic here.  What is IPF other than a terminal disease?

I am “lucky” to have contracted IPF (and emphysema) in my 70s.  I can say I have lived a long and fulfilling life and the “end” is inevitable for us all.  We just happen to know, roughly, when it will happen.  That knowledge gives us the opportunity to plan for the end, financially, spiritually, with family, and perhaps engaging in unfinished bucket list activities.  I don’t worry about it because worrying will only depress me and not change anything.  I would rather accept the situation and make the best of my time remaining.  P.S., it helps to believe there is light on the other side!

Tom

[José]

 

I was diagnosed at end state about 18 months ago. The word by then was that I had 1 to 3 years left. I am now 77 years old, but I thought I was going to live well over 100 because being vegan and doing a lot of exercises. Not so, huh. At the beginnng I used to cry often when I was alone in my bedroom. My wife is not a helper what so ever. She even left the bedroom and said is for me to sleep better, but I think is that she does not want to wake up in the middle of the night laying next to a cadaver. So I turned to HaShem and makes me feel better. I went and got me a German Shepherd pup and that is the only company in my life. I live in Puerto Rico but have no family here. Can’t fly to go and see my family in NY because of my lungs condition. But keeping busy with my dog training and working on my garden keeps my mind away from IPF.

[Richard Halderman]

I was diagnosed in 2014 at that time I read life expectancy was 2 to 4 years. At that time I realized I needed to get right with life and my creator. I settled it in my heart how this disease ended. No cure nothing. I realize this is a very devastating disease believe me I know. But I have maintained a relationship with my creator and my wife. We have been steering our lives in just that direction. I have come to the understanding the end of life is death, and I am very comfortable with that. It is my belief (I am in no way preaching) I have a life everlasting and more abundant waiting once I leave this existence and that is good enough.
Live with grace and die the same. Thanks for letting me ramble.

[Michael W Taylor]

Grateful Deb and everyone else,

I understand how you feel, or at least I think I do when facing the inevitable from PF. I know it’s easily said, but for me it’s absolutely true that I’m not afraid of death as my Faith sustains me. I’m not even new to this disease as my grandmother, my grand uncle and an uncle by marriage have all died from IPF since 1993 and I was pretty hands on as far as caregiving with my grandmother. I will note that not one of the three traveled the same exact path to the inevitable. So, I wonder what track will my decline follow? I’ve already made my final arrangements and have purchased everything needed, asked everyone I want to be involved to do what I’d like them to do, written my obit, as much as I could, talked to my florist which I’ve used for decades, made sure legal papers are in the hands of those that will need them and so on. My only real concern is leaving my octogenarian mother with Parkenson’s Disease behind to be taken care of by someone else. Even though that someone else is expected to be my brother and sister-in-law, my mother and I have actually been each other’s caregiver for over twelve years and I know exactly how my mother needs and wants everything. Obviously we are very close, like best friends and I haven’t been able to let go of worrying about her after I’m gone.I guess it all boils down to it’s easy to say to put all your faith and trust in God, and I do. So, while I know she we will be taken care of perfectly, I guess I’m still only human and am falling short in this area.

So Deb, while I don’t know exactly what issue about end of life you may be struggling with at the moment, I guess the best I have to offer is to really take to heart Tom’s proffer that it helps to believe there’s light on the other side. You may benefit more than you think possible by Marti’s suggestion to get the book from Amazon, or other book sellers, entitled “Pulmonary Fibrosis Journey:A counselor and Fellow Patient Walk with You” by Kim Fredrickson. I plan to pick up a few copies of this book so that my family member’s and close friends will know what to expect as well.

I got a lot for myself out of reading about this topic. I hope I was able to give back a little as well.

Michael

[Lee]

Hi, 18 months ago I was making plans for end of life that seem to be rapidly approaching, as IPF took a great toll on my health. I spent considerable time reading and meditating and coming to grips with the fact that we all will one day die. I was at a point of giving up, but something inside of me turned, and I decided that first and foremost I would live a full and active life up until the day that I die, and in order to do that, I would battle this disease to the best of my ability. Now 18 months later , I am living a very full and active life. I have gotten off of oxygen which I had been on 24 x 7. Previously I work out in the gym six days a week and walk my dogs for miles a day. I bicycle swim play golf and pickle ball. I volunteer for the  elderly programs at the Salvation Army and teach a class on healthy aging. I also volunteer with the local hospice house, and I am in training to be an end-of-life Doula.  elderly programs at Salvation Army and teach a class on healthy aging. I also volunteer with a local hospice house and I am in training to be an end-of-life Doula.  I have written a book about my journey back to health with pulmonary fibrosis, and the breathing, exercise and nutrition approaches that worked for me. I hope that the book will help others see that there is a way to live a full and active life with this disease, and it does not have to be an early death sentence. My book will be published in late April. Today on earth about 200,000 people will die, and one of them could be me. If that happens to occur today, then I know that I have lived fully and did not give up. I am doing all I can to honor this gift of life, and that’s all I can do.  IPF has been an amazing awakening to the joy of life for me.

[Lawrence]

Yes, we all should be able to openly discuss the end of life as it’s a road we all must travel, with no exceptions.  I’m going on eighty two years of age and have been living with the progression of this disease for around 5 years.  In the last year I’ve been hospitalized twice with pneumonia and on Oxygen 24/7.  The last being a ten day stay in September where they gave me no hope with a fifty/fifty guess of recovery.   I had one Doctor tell  me,  ” Well, you know, it is what it is”.  So much for the encouraging words …LOL

I openly except my fate, with no fear of death.  What sustains me is my faith and trust in the Lord Jesus.  And yes, I understand others may travel a different road and I respect that.  I’ve  lived a long and blessed life. What pains me deeply is seeing so many young people with this dreaded disease.   I pray that a cure is soon discovered for them.

Lawrence

[Meredith]

First of all you will never read about someone’s end of life experience. For all we know it was peaceful.
I try to stay in the day and I can plan for tomorrow only to the extent that I know I can change my plans if I want to.
It would not be helpful to know. Intellectual knowledge may make you always miserable.
You’ll be cared for.
Accept the fact that you will die, probably from this disease. Be ready everyday by living that day to the fullest. Read voraciously, eat with gusto, try retail therapy. Stay in bed and take it easy. Make today the best.

Meredith

[Roberta]

So much of what has been written is almost the same as I would have written. I don’t fear death and quite comfortable with the reality of the inevitable. I struggle with leaving behind people who rely on me. I also am grateful that my death will not be a shock and those who need me have time to deal with that situation while I am still around. I am 81 and have no one that needs me for physical care, but do know that my absence will be somewhat of an adjustment for a few. However, at my age, that adjustment is part of what life is about. Our family recently met with a hospice team that assured us, that if I am part of hospice, they will be there to support the family as well as the patient. Quite comforting. Thanks to all of you. Roberta

[Terri]

I also was diagnosed with IPF and was told 3 years. I’m rapidly approaching that mark and have experienced all the emotions of grief-depression, anger, etc sometimes all at once. I have come to more of a peace by accepting the reality and outcome of this disease and don’t wish to focus my attention on it. That sort of denial gets me through my days and allows me to enjoy friendships even though it’s always a presence. There are fears and tears enough and I’m choosing to try and be happy
It has helped me to focus on details like updating my will, if there’s a positive to be found

[gil]

 

GratefulDeb,

You got some good advice, I will comment on your question based on my experience and I am not recommending anything in particular other than not letting IPF define who you are.

No doubt that if I were younger, I would opt for any treatment which slows IPF progression. I recently I turned 76 years old and I had planned on celebrating my birthday in Yosemite, instead, I was in bed recovering from pneumonia.   No doubt I will experience other health issues and I ask myself , at what point do i stop medical treatment so as to not  reduce my quality of life? That is, for me it isn’t a question of how long I will live but what will  the treatment do to my quality of  life?

First, I want to opt for quality of life and not quantity of time I have left. So I will opt out of invasive treatments and try to insure my wants are legally defined so I can spend the end of  life as I expressed I wanted.

The two ipf drugs available to me have some nasty side effects, some even fatal. Do I want to slow the progression of my ipf but suffer digestive plumbing issues and other possible negative side effect?  I will take treatment as I did with pneumonia, for short illness/accident or allergies, but no other treatment or surgeries. If I get cancer I certainly won’t do chem treatment nor get surgery for a heart attack or do a drug regiment which reduces my quality of life.

When I was first diagnosed it took a while for it to sink in and once it did I made up my mind to not  let IPF define me.  I can’t do all the stuff I used to do but there are other things that I do which bring me joy. When the day comes that confines me to bed, then I will pray for a quick death and wish for not waking up. In the meantime, I will try to squeeze joy out of each day that I have left.

Terri,

I was diagnosed in 2013 and told the same thing, 3 good years and then 2 of rapid decline. I am still around and until a year or so ago, I was able to do everything I did before the ipf diagnosis.  So don’t focus on date, you may be lucky like me and live years beyond what is expected.

[Patricia Fox]

I just participated in a webinar presented by the Compassion and Choices organization.  They have an abundance of useful information that you may find useful: https://www.compassionandchoices.org

[Stephen M. Winsett]

Hi there, I am a retired Episcopal Priest age 83, and about a year ago I was diagnosed with IPF and put on Ofev.  After four months on Ofev, it had succeeded in giving me a fistula that has become so problematic to cure because of the IPF and no one wants to do real surgery on me.  Anyhow I have read most of the comments on this subject and agree with most of them.  I have had a lot of experience with the end of life during my 49 years as a priest and giving the last rites to many people.  I had my own struggle with realizing that I would not, in all likelyhood, reach the age of my father and grandfather and got my affairs in order for the end.  Most churches and faiths have planning ahead programs of some sort, and I have made mine.  I am not going to try anymore medicines as they seem, for me, to cause more harm than healing.  I have lived, unlike some with this baffling disease, a long and full life. And in the course of doing that have learned that death is not the enemy to fear, but worry is.  Living one day at a time, enjoying each day with the joys it brings, even if it is just sunshine or a football game, brings me peace.  I have read enough about IPF to know there is no common way it ends, each one seems unique and it all ends the same. I have learned much from the folks whose bedside I graced while they prepared and departed this life, and most have been inspiring and calm. So don’t worry about the end, enjoy each moment you have left. This is a great gift that not everyone gets.  An old church litany prays “from battle and murder and sudden death, good Lord deliver us.”  IPF is not sudden, it gives us the benefit of time.  God bless you today.

[Mary Frances]

Asking for prayers for my mother Emily. She was diagnosed in 2018. We are not sure when she actually got this disease. We have called in hospice & today being Easter had no care until 5:00. I called at 8 am eastern time. My mother gasped for air since 4 am night before. I’m messaging this to all so hopefully this helps other patients prepare for end of life. We were not. Her condition rapidly declined and she is now bedridden. She was doing ok on prednisone and then we started Ofev and added Tyveso. Now she is only on morphine and lorazepam to be kept comfortable. I wouldn’t wish this disease on anyone. It is heartbreaking to watch our mother and loved one suffer Please prayers