Hanging Onto Hope as an IPF Patient

[christeen]

Hello Charlene,

I am suffering with IPF since 2016. I am a Christian, and my Hope is in God and God alone. I do take my medication (pirfenidone) and have oxygen carrier. I pray everyday and cling on to hope that nothing is impossible to God and he can heal me. This gives me hope and a desire to carry on.

God Bless
Christeen

[Charlene Marshall]

Hi @christeen

Thank you so much for sharing this with us. I’m so glad you have such hope in God and your faith, that is wonderful… hang onto that 🙂
Much love,
Char.

[gaston]

My Hope is to enjoy this miracle of living. I know that this disease is very complex and takes away quality of life and life sooner than one would like, but it is one of the risks we have to live. My hope is to do the best I can each day for my family in general, my wife, grown children and my grandchildren. I enjoy them when they come home to our grandchildren. A few months ago I retired from my job (63 years old) to have more time at home with my wife. My retirement from work allows me to enjoy the domestic things of each day, to have infinite times to contemplate. There is a poem by Alberto Cortes called “How lucky I have been to be born.”
A hug to all and I pray to God every night to keep my gratitude to life.

[Charlene Marshall]

@gveliz

Thank you for sharing your beautiful perspective on hope and living with IPF, Gaston. Wishing you a beautiful retirement – congratulations on that – enjoy that time with your grandchildren. I will check out the poem you shared as well. Thank you for inspiring me with this post!
Char.

[Wendy Dirks]

I am not religious although I meditate regularly, which helps me keep focussed on the present instead of worrying about the future. To be honest, my palliative care team and my yoga teacher really help me a lot. My son died in 2020 and my physiotherapist referred me to the bereavement counsellor at the hospice. Because of the pandemic, we talked via “Teams” instead of in person, but it was still very helpful. Once I had talked through all of my feelings about my son’s death, it seemed inevitable to talk about my terminal illness and I expressed a lot of my fears. She was wonderful in her responses and challenged me to think about what really scared me – not death itself, but the process leading up to it. Once again, these conversations helped me to focus on the present and not the future.

I attend a particular type of yoga class via Zoom, called Trauma Sensitive Yoga and my teacher is amazing. This particular type of yoga has helped me to feel safe with my emotions and to feel grief and fear safely and without being overwhelmed. While you asked about hope, I would say that for me, being able to feel the negative emotions allows me not to need hope as much as to be fully in the present moment, enjoying and savouring the life that I have now.

The most important thing that both the counsellor and the yoga teacher have helped me realise is that our lives are made up of many “identities” yet there is a person underneath all of them who is unchanging. I have been a mother – now I am not. I have been a scientist – now I am not. I have been so many other things as well – and now I am not. Yet I am still me. That’s been a profound lesson that has helped me to be at peace with the changes taking place in my life now.

[Charlene Marshall]

Thank you so much for sharing this Wendy – what a gift these programs and services have taught you, in terms of expressing and understanding emotion. I often talk about different identities we have too and I try to remember that my illness is just one of those identities, it helps me remember the other things I am capable of and can still do, and other “hats” I wear that I appreciate about myself. Thank you for taking the time to share these things, as a counsellor, I really appreciate hearing these approaches.

Char.

[Christie Patient]

@wendy-dirks Wow, I admire how much work you have done to process your grief and your own fears about your progressive illness. That work is hard, and it takes a lot of courage to ask for help and to dive within one’s self in times of pain. I am so sorry that you lost your son on top of everything else 2020 gave us. This period has been hard for everyone, but losing a child is a different level of hurt. I am inspired by your ability to seek peace in this tumult, and by how you have learned to peel back the layers of yourself to find your core. Thank you for sharing your story.

[steven mason]

@wendy-dirks

Wendy–your words especially your last paragraph were very thought provoking. There is a book I have read about—but have not read called “On death and dying”–by elisabeth ross. I wonder whether it would help?

[christeen]

Thank you Charlene. I am so grateful to this forum and how each one of us are coping with this Illness.
May God Bless us all

[Wendy Dirks]

Thank you everyone for your responses! It’s so wonderful – and so important – to have this space where we can share our thoughts with people who understand. And I have heard about the book you mention, Steven – I may have to give it a read one of these days!

[Ron]

I feel I am coping well. However, it was not always that way.

I was diagnosed with IPF Way back in 2007. At that time very limited reference was found on the internet, but all of it was bad. Life expectancy was in the 2-5 year range. The pathologist report accompanying my first CTscan indicated it appeared to be old, inactive scarring.  For the next 3 years I had annual PFT and CTscans and non showed any disease progress. Throughout this time I didn’t worry about my demise. I may have been in denial.

My pulmonologist discontinued the CTscans and said to come back if I notice anything different.

Ten years after my diagnosis I was hospitalized with pneumonia. A CTscan showed disease progress. I went into an emotional tailspin.

In the years following diagnosis my wife had died, friends had taken me under their wing and introduced me to a small music society centered around traditional country music. I loved the music and the people. I quickly volunteered. It was a whole new chapter in my life and two of my teenage grandsons joined me in this and other escapades. I was a very happy man even taking music lessons (guitar and fiddle) together with my grandsons.

Then, when I was told that the IPF disease was progressing… well it was devastating. I had so wanted to see my grandsons to adulthood and married with kids. I wanted to be a great grandad. Now all that was in jeopardy and I didn’t take it well.

It took about a year before that horrible dark cloud started to dissipate from my emotions. I began concentrating on how lucky I had been to live this long with the disease and all the uplifting things I had enjoyed in my final years. Also, my disease had not progressed after that setback. I also came to learn how genuinely caring my new friends had been as so many in the little country church where I attended had prayed for me to get well. I started going there after learning their services included country gospel music.

So where is the hope? Hope begins with our own outlook on life. Even in some very difficult situations there is a lot to be happy about. It could be good eyesight to look out the window and view the flowers, or distant mountains. It could be the gift of memory where you can recall happy events. And, while you ponder these things, did you forget the pain?

I likely wont benefit from any cure for IPF. I’m 80 years old. There have been several studies pointing to possible treatments. Some are going forward into clinical trials. I personally believe a cure lies in natural treatments. I have been on the green tea extract regimen for a year now. My PFT after a year shows mild improvement and my doctors remark on how the rattles in my lungs have diminished some. The latest CTScan doesn’t show progression. In other wards there is no bad news.

I just read a new report that an old chinese treatment shows promise … in fact if you read it  closely, there is significant promise of cure. But it only works safely in aerosole form so you can’t just go buy it at your local chinese apothecary . It has only been tried in mice. But with the knowledge gained from these studies, I believe a cure will be developed, probably within this decade.

So, you folks in the earlier stages of the disease have reason to be hopeful of a cure. Meanwhile, Esbriet and Ofev may slow your disease and keep the window open for a cure to come later. For all of you with IPF there is hope that if a cure is found that the FDA will fast track it to approval. One of the effects of the Covid vaccine rush. it has proved that the FDA can complete their due diligence and clear a drug quickly. It is going to be hard for the FDA to go back to business as usual. New technologies including CRISPR cas9 are going to accelerate drug research results at unheard of speed and quality beginning now. There is a lot to look forward to as a patient.

One thing I keep in mind is we die sometime. We don’t normally know when that will happen. Obviously, the older we get the less chances are we will finish the day. So why not make the most of every day. If you are bedridden then use your brain to make the most by thinking positive thoughts, reminisce about good times, dream about your impossible dreams, make a phone call.

For those well enough, go out and make mischief. Make a surprise visit to your kids and grandkids. Be prepared to keep it short in case your timing is bad. Have a plan B. Perhaps that means taking your meds and credit card with you and go visit a nice place and stay the night, have a great meal.

Finally, I highly recommend a very old book, but still available. It is “The Power of Positive Thinking” by Norman Vincent Peale. I read it in my youth and the lessons I learned helped keep my sanity.

 

 

[Charlene Marshall]

Hi Ron,

Thank you so much for sharing this outlook on how to manage hope with IPF! I think many people can benefit from reading about your experience with the emotional toll this disease takes but then the amazing shift in perspective you chose, kudos to you! I’m so glad you had such a warm and caring community surround you as well, what a gift that must have been. I too believe a cure is near, or at least something to improve patient’s quality of life and stop the progression of this disease. Let’s hope it happens soon! I love your wording about go out and make “mischief”… I will do just that 🙂

 

Thank you for giving me a great start to my Sunday by reading this post!
Charlene.

[Pete Besio]

Well Ron…there isn’t much I can add to THAT other than ot second that emotion (yes I am quoting Smoky Robinson). I am pretty hopeful and thankful as well, but we all have days…I will print you post out…sometimes we need a reminder to be thankful. That was really nicely written.

[Bill Ecton]

It took me a while, but I concluded that I needed to let go of the anxiousness and worry and focus on the blessing of each day God gives me – I figured out that I needed to turn it over to Him (I should have done this sooner).  I asked God to relieve my family and myself of our fears and worries and for Him to show us how to respond to this bad news, and yes, if it is His will, provide a miraculous cure. To be honest, I found it hard to say “not my will, but yours be done”. But then I realized that if I asked for His peace even if His will was not mine, it allowed me to more easily pray it – as we should in every circumstance. His overflowing peace allowed me to accept the fact that His will is always the best.

I can’t tell you that I know what His will is relative to this disease, nor can I tell you that I don’t have periods of anxiety over the situation – especially when I struggle with low O2 or can’t do something because of it, or think about what my family will go through. When I have one of those low times, I pray for peace, and remind myself to enjoy each day He gives me – do my best and give the rest to Him. In other words live for today and remember that our ending is THE beginning.

[Charlene Marshall]

Thank you so much for sharing Bill, this is beautifully written and your words are resonating with me tonight as a mourn the loss of a friend from PF yesterday. Thank you for taking the time to write.

Hugs,
Char.

[Terry]

Thank you to those who shared your coping mechanisms and your thoughts on how you handled this diagnosis! It has been encouraging to read your thoughts of how you flow back and forth through different stages of grief and acceptance!  I find myself having periods of acceptance, then anger, then hope, then more acceptance! And it ebbs and flows much like the ocean, scattered thoughts of hope or grief or what I’ll miss watching my grandchildren do as they grow up. And so it goes, different stages at different times, some dark, some light.  It’s just a process.  I could have died suddenly and never had the opportunity to live through these stages, but here I am, right where God has placed me, to continue to experience this life and all it offers, good and bad. I have HP with fibrosis and PFT’s that really aren’t great at all, but I also have oxygen to use when I’m up and moving and I am able to take it off just sitting around reading. So I’ve learned to accept the good with the not so good, unless of course, I’m having one of those days where my long tubing gets caught on every door or knob or shoe or furniture and then I must admit I can quickly escalate into full on temper tantrum with curse words coming out of my mouth like a sailor! It’s not pretty either, as I’m sure my husband could easily vouch for. ? Thanks for listening and sharing. Best wishes for an easy day with the ability to find something you’re grateful for!

Terry

 

[Ron Reid]

A recent book that I found very helpful is With the End in Mind: Dying, Death and Wisdom in an Age of Denial, by Kathryn Mannix.  The author is a physician specializing in palliative care; the book is based around a series of stories of real patients.  Very well written and reassuring; I recommend it highly.  It is published by littlebrownspark.com; available online.

 

[Randy]

Hello everyone,

Spent the last half an hour reading over everyone’s input to hope. I enjoyed reading them all. It got me to thinking about the subject HOPE. Without hope, what do you have? In our situation, not much. For some, that is all we have. It has been a year since my diagnosis. As Charlene can tell you I was very shocked when I first wrote into this column. How and why did this happen to me? I didn’t know what to think or do. My doctor had told me 2-5, just like a lot of you have heard from your own doc. Just didn’t tell me the starting point of the countdown. What has given me hope is the advance in medicine for our IPF. The only 2 out there have so many side effects, I won’t take them. I have enough problems besides the IPF. So, I have done a lot of studying on the different meds that are being developed around the world. There are some that have a really good prognosis and are in the final stage of testing, then they will be out. That is my biggest hope and prayer that they are out in time to save of us.

My other hopes are with my family. I  have 9 grandkids that I really want to see grow up into beautiful young men and women that are making a difference in the world. My biggest problem is trying to see them all. With only 1 lung, I am bound to where I live and no going up in altitude. My lung doc says there isn’t enough oxygen in the world to get me over the mountains.

I got a kick out of some of the comments. Terry, I know what you mean about the air line. I will be walking thru the house and all of a sudden my face is twisted around and my ears and nose pulled off. Ron, I liked your letter about yes, we are all going to die someday, make the most of what we have and don’t sweat the small things as they say. I had a cat scan a month ago and I’m holding steady. Nothing new, which is hope.

Well, that’s enough rambling from me. Here’s to everyone having a great day and week. Charlene, thank-you so much for having a place for us to talk.

Randy

[Don Graybill]

Charlene,

 

I really appreciate your question about hope and want to respond. However I prefer to thoughtfully draft a response offline and then cut and paste. I did this once before several months ago and somehow had many extraneous character interspersed in my test. As I recall you fixed that and indicated a repair was underway to prevent the extraneous material. Has that been done. Thanks.  Don

[Charlene Marshall]

Hi @dongraybill

It should be fixed! We’ve been tracking the things that cause posts to be ‘snagged’ and held as suspected spam and we think we’ve worked through most of those. We are discouraging people from typing a response into a word document then copying/pasting it into the forums though, as this still tends to end up with some weird code/formatting (likely due to the font differences). Feel free to reply to this topic by typing in your response in the textbox but then maybe save a copy of it somewhere in case (for any weird reason) it doesn’t post successfully. Then I can help you get it on the page, but you don’t have to start writing it all over again.
Char.

[Charlene Marshall]

Hi Randy,

Sorry for the delay in getting back to you on this topic, but thank you so much for writing and sharing your thoughts with us on Hope! I agree with you, this is something we all need to hang onto and find, no matter how difficult that might seem. I appreciated hearing your perspective on this, and your reflection on when you were first diagnosed through to finding that hope we all need.

In terms of having a platform to talk, I am so grateful to the members of this forum who make it as special as it is. We all learn so much from one another, and I’m honoured to be part of it. Thank you for being here with us, Randy!
Char.

[Karen Martin]

I believe that everyone has “something” that affects them to some degree or other.  We might not know they are dealing with a broken marriage or depression or cancer or any number of other things.  The automatic response to “How are you?” is “Fine, thanks.  And how are you?”  We really don’t know about most other people we meet in life are dealing with.  As so many of the rest of you do, I try to stay as positive about life as I can.  Every “good” day gives me hope that there will be more of them.  Wishing all of you many good days.

[Charlene Marshall]

@casey

Thanks for writing, it is nice to hear from you 🙂

I completely agree that everyone has ‘something’ they’re dealing with that we may not be aware of, including the things you listed. In addition to their response often being “I’m fine, thanks” as a cover-up, I think our society is really good at also glorifying busy to cover up the struggles we might be having too. A response I often get when I ask how someone is, is “busy, but okay thanks”. I’ve now gotten in the habit of asking people: “how are you…. really?” or “aside from busy, how are you?”… it kind of forces a different answer from people. It doesn’t always work, but I try to really understand how they’re doing.

Wishing you many good days too and thanks again for writing.
Char.