• Posted by george-richard on February 21, 2024 at 11:40 am

    Not sure where this discussion belongs and I’m sorry if it depresses or makes people uncomfortable but these are the question I need help with.

    I was diagnosed with IPF 9 years ago, (I also have heart issues with several stents) and was able thru exersize, diet and “clean living” to avoid drugs or treatment for it until 2 years ago. I went on Esberit and stablized for a while until this summer/fall when things took a nosedive. I’ve been hospitalized twice since then and diagnosed with Pulmonary Hypertension (with a new drug for that) I’m on 7 different drugs (and in another drug study for IPF convinced I’m gettin g the placebo) sleeping with O2 at 5-6 LPM walking with O2 at 8-15 LPM and tired all the time. I rate my days A,B,C,D and F most of them are C’s with D’s and an occasional B. All that is just background.

    My Pulmanologist is great but a little bit “keep your chin up” for me. She’s very supportive but I want answers so I can prepare. I think if I last another year it will be a small miracle. I’m fighting to stop losing weight, doing chair yoga and trying not to hermit, but I’m at a loss. I saw all my kids & grand kids over the holidays and have been spending time with my sibs my kids here and friends that can come over. With the Oxy logistics I really can’t get out for more than a couple hours so that shuts down a lot but I’m trying to still experience life. My will is done, finances in order so packed and ready to go.

    I don’t have any belief in the afterlife and know I’m writing to the living so no one can answer this with any certainty but I throwing out these thoughts. Actually my hope is to have a heart attack and die in my sleep rather than awake, gasping for breath like a fish out of water. I realize now there’s no actual questions in this maybe it’s just an exersize in frustration writing.

    bruce-f replied 1 day ago 15 Members · 19 Replies
  • 19 Replies
  • bill-ogara

    Member
    February 22, 2024 at 2:43 pm

    George,

    I know how you feel concerning how you will exit the world. I have made all the arrangements I can so things will go smoothly for my family. Thankfully I do believe there is something to look forward to after we pass. I as well hope for an easy passing as I have made the decision not to take oxygen or a transplant. God bless

  • susanlee

    Member
    February 22, 2024 at 4:16 pm

    I have been on oxygen for 5 years now, have progressed to tanks. I’m grateful for the time I’ve had because of the 02. I’m on 6-8 liters up and about, 3 at night. Have to stop and rest to allow my levels to get back up, can drop to 79 to low 80s. Have PH too. On alot of meds, including Atemra infusions, just started. Have systemic. Scleroderma, diagnosed 2008.

    My faith, prayers and support have helped so much. Palliative care, counseling, family and friends…

    Prayers for all of us and peace from above. ❤️🙏

    • paul-caden

      Member
      March 16, 2024 at 8:25 am

      As a freethinker I realize that It is obvious there is a spirit in our brains, as there have been about 2800 man-made gods in history. So there is a place for meditation or “god” in our brains. This latter fact is proven by MRI scans of brains showing increased blood flow in frontal lobes and language areas while praying, yoga, meditation, exercise, etc. Clinical tests prove people living chaotic lives, addicted, lost $, loved ones, etc, turn to symbols, gods, soothsayers etc bec of problems in the TPJ region of the brain.

  • john-fraze

    Member
    February 22, 2024 at 5:39 pm

    You might talk to your pulmonologist about the amount of oxygen you are using. There is such a thing as oxygen toxicity. Too much is as bad or worse than not enough. You can also look it up on http://www.mayoclinic.com. I was amazed when I checked into it.

  • kjplpccgmail-com

    Member
    February 22, 2024 at 6:14 pm

    Thank you for sharing your story. Have you considered a lung transplant? My husband was diagnosed with IPF in May 2022. He was failing quickly. His case was complicated because he had a double heart bipass in 2020 and he was 70 years old. He was turned down by 2 hospitals and fortunately The Mayo Clinic accepted him. He had a single lung transplant in September 2022, only 3 weeks after he was approved by Mayo. It has gone very well and he is enjoying life without oxygen. I hear that Vanderbilt in Nashville Tennessee also takes complicated cases. I wish you the very best. Kim

  • Sanddollar

    Member
    February 24, 2024 at 11:24 am

    Dear George – Richard, I have never spoken out in any forum online, but I was particularly moved by your story. I was diagnosed with IPF approximately five years ago. I try to live my life by three “principles“, Faith, family, and friends. It sounds like you’ve got the last two covered, connecting with family and friends, and remaining as active as possible. God bless.🙏

  • paul-caden

    Member
    February 26, 2024 at 9:43 am

    hello George your story touches me a lot because, just like you, i am a free thinker, since about 20 years ago after years of deprogramming from my massive childhood Catholic indoctrination (almost became a priest) yikes. I’m prepared to return to Stardust and do not worship any of the 2,800 gods of history, nor worry abt being one of +90% of humanity who are supposed to burn in a giant furnace 24-7 for eternity for not worshipping the christian god. I hope I am courageous like you are when my IPF will get worse but as of now it is stable as I am on pirfenidone since the outset. Like you i have stayed close to our family, have been married 50 years do a wonderful loving wife. Thankfully I live in Canada where I can have medically assisted end of life treatment which I will be taking before i get into heavy duty suffering and no I’m not afraid to go having lived 74 wonderful years and counting. Stay brave and keep your mind occupied! Mine are sports & ancestry. I manage trees on both my wife and my side with a total of over 13,000 members going back to the 1400s. Our two children really appreciate this and have told me they will follow up on it as well as our sisters and brothers, they might even remember me lol. Take care buddy Wish you the best, stay strong…

  • lee s. williams

    Member
    February 27, 2024 at 10:31 pm

    My first post after reading the forum for some time.

    Sorry to hear where you say you are relative to the end of life.

    Please don’t stop reading the rest of my comments. You have been given a great opportunity to get your house in order before you pass. I have been doing that also for about two years. I review my info at least quarterly and still find small issues that I have to fix before my passing. I have a trust, will, power of attorney and health care directives. I have also performed or had performed as much preventive and corrective maintenance on our home as possible. Today I was helping my wife clean out my closet and donating things I will not be using to local charities. Also have Long Term Care with zero wait days once I go on hospice.

    I have been on OFEV since August 2016. CT scan, ultrasound for PH and PFT every 6 months.

    I would recommend that you work with your doctor and start palliative care ASAP. There are drugs available to help with O2 anxiety. They are usually routine once on hospice.

    My wife and I have been working to plan where the hospice bed and all of its trimming will be placed in our home.

    Good luck and if I can help with questions about what comes after death just post again on the forum and we can work out a way to chat.

  • george-richard

    Member
    February 28, 2024 at 4:41 pm

    Thank you all for your kind thoughts and suggestions. I am planning on getting palpative care and have been talking occasionally with a mental health profesional. I understand the “good fortune” I have by being able to get things in order before leaving and am not really concerned about what happens after. My main concern is how I’m going. I’m not gonna pass in a hospital surounded by tubes and machines. I’m 70 now and life has been good with many good memories. Good Luck to All of You!!

  • jofac-ohandlin

    Member
    February 29, 2024 at 11:20 am

    Dear George,

    So very sorry to learn about your problems. I am running a parallel path with you.

    Early diagnosis over 10 years ago, so long term gradual loss of abilities. Now on O2 full time. The concentrator on full 5 litres overnight, and supplemental up to 8 during stress during day.

    I too am a free thinker. My thought is, it is not the dying, it is the manner of the dying. I have, as many others on this forum experience that feeling heading into panic, inccreasing oxygen and waiting, waiting waiting to gradually recover to relative normality.

    I was in excellent health prior to diagnosis in 2013 at the age of 71.Now having reached 82 I need a brain, and lung transplant. My wife disagrees about the brain, …. but I know better! My joke!

    Like you I think a quick heart failure would be a fast exit.

    We in the Isle of Man are in our local Government considering assisted dying, but it is not legal yet.

    A couple of weeks ago I suffered an exacerbation which effectively removed my mobility. I now rely on my wife of almost 55 years for my care. A significant burden for her.

    I anticipate that my IPF is familial, as my sister died from it at the age of 85. I was with her the evening before she died. Her brain was active, as I asked her about some family history back to the 1930’s. She was able to gasp out an answer that made sense.

    To those on this site, forgive me if I am rambling. Enjoy, as best you can, each day as it comes.

    Regards with kind wishes, Joe

  • papitohead

    Member
    February 29, 2024 at 8:53 pm

    Dear brother George,

    I am 78 years old. I was diagnosed a little more than 2 1/2 years ago and being at end state because my lugs are so covered with fibrosis they said I had 1 to 3 years the most. So if this is true, I have less than six months left. I have been doing the Zinc idea, the green tea extract, and the berberine. Exercises and all to no avail. Have been praying are reading the scriptures, being vegan and whatever you can think of. Now I got two bomb shells thrown at me with cancer on my prostate and also colon cancer. Five years years ago I was 5′ 4″ tall and now am 5’1 1/2 tall. I was weighing 147 pounds and now to only 112.

    But you know what, I feel the Heavenly Fathers is telling me to keep fighting. So I will. Wouldn’t you like to join me on the fighting of this horrible disease? Because I will never give up to my last breathe!

    Many blessing for you and your caretakers.

  • Laureen Aschenbrenner

    Member
    March 1, 2024 at 9:46 am

    I was diagnosed almost 22 years ago, still not on oxygen. I was told 4 to 5 year life expectation from diagnosis. I was getting worse, then when Ofev became available, things started improving. Side effects can be difficult at times. I truly believe faith and attitude has been a huge factor in my survival. I made goals for myself, turning 50, 60, 65, becoming a grandmother. There are days that are worse then other days by far. It takes me way longer to accomplish chores, I have to stop and rest often. BUT, I never gave up living, I never gave up.

    • Charlene Marshall

      Member
      March 16, 2024 at 8:45 am

      Thank you for sharing your story Laureen – wow, 22 years since your diagnosis, that is amazing. Congratulations! Unfortunately, a lot of the literature and websites on PF out there still cite the 4-5 year prognosis rate, and that is oftentimes the first thing people see when they look up this dreaded disease. Those rates were published prior to the development of the two antifibrotics but people don’t tend to realize that and are understandably quite scared when they read the prognosis rate. Your story will inevitably help people, thank you for sharing it.
      Charlene.

  • becton1948

    Member
    March 5, 2024 at 4:51 pm

    George-Richard,

    Dying is an uncomfortable subject to address. Most of us think about death as a painful and prolonged process that spurs thoughts of the unknown. What happens after we’ve passed on? What will happen to my family when I’m gone?

    A lot goes into living before death, and for each person, that experience is different. I’ve always wondered, “What purpose do I serve?” Is it to learn about everything I can in my lifetime, or to use my time to help others? Or am I one of many voices needing to speak out about my experiences with IPF?

    I don’t want my illness to be just about me. I want it to be about so much more. It’s about my God, those who support me. It’s about my family, friends, and medical team.

    I may not be able to walk or run as fast as others, but I still want to join in. I may get winded easily while talking, but I still have something to say.

    Maybe my purpose is to show others how to trust God, to have compassion, to not forget that those of us with a rare or chronic illness are still here. Until my time to grace this world with my presence is over, I hope to make people feel comfortable and at ease about chronic and rare illnesses and the unknowns that go with them.

    God Bless!

    • paul-caden

      Member
      April 4, 2024 at 4:48 pm

      Your interesting post mirrors my thoughts ex as a Freethinker I do not depend on any of the many gods out there and have the courage to face my fate as a guy who raised a beautiful family, 50 yrs married and will return to nature in an ecological resting place. Lots of love to all…

  • meredith

    Member
    April 10, 2024 at 1:28 pm

    We have a serious , progressive, and incurable disease. Please live your life right now. Do not waste your time alive by trying to control your death circumstances. If you have a caretaker, let them take care of you. You are unique. LIVE YOUR OWN LIFE NOW.

    • george-richard

      Member
      April 11, 2024 at 3:35 pm

      Thanks Meredith sounds like good advice. Part of who I am is taking care of and doing for other people but I’m learning what I can and can’t do. I don’t want to dump it all on my partner but am learning to ask and communicate my needs better.

      Good Luck!

  • bruce-f

    Member
    April 18, 2024 at 6:50 pm

    Dear George-Richard,

    Thank you for posing this very practical question.

    In my father’s final year, at the age of 72 and six years after his IPF diagnosis (pre-OFEV), he was suddenly confined to a hospital bed after an unrelated and undetected blood loss left him profoundly anemic. He had been living at home without oxygen, and doing the best he could to manage his cough. Once in the hospital he was put on oxygen, and remained on O2 until his death about twelve weeks later.

    During his hospital stay, he and his caregivers hit upon a routine of using benzodiazepines (like Xanax) to help offset the feelings of anxiety that come with a low pulse-ox. These feelings were more intense in the evening and at night, and he usually took the medicine around dinner time. Then he was able to relax a bit, and he even seemed to enjoy the psychoactive state that the meds provided.

    His condition failed to improve, despite great (U.S.-based) medical care. At the end of that summer, as his O2 use crept up and his energy flagged, he made the decision to enter hospice at home. He returned home, enjoyed an anniversary dinner with his wife, watched the Westminster dog show, and went to bed. In the middle of that night he called for the morphine provided by the hospice, and died before dawn. Short of having a heart attack or an aneurysm, I cannot imagine a more humane death. It is my hunch that morphine is widely used in these final moments—not to hasten death, but to make the process of dying less agonizing. I have always admired the way he approached his death: his decision to enter hospice was very emotional for all of us, and required a lot of emotional work and inner searching to make the decision to end interventional care and let his body die.

    Fifteen years later, I have my own IPF diagnosis, and I take comfort in having spent this time with my father in his final months of life. His needs grew as his strength waned, but we are fortunate in our family to have each other in those moments. He shared stories and memories with me all summer, and his life became pretty basic in the last weeks of his life: breathing, drinking, eating, managing waste, sleeping. He was fortunate to enjoy food enthusiastically to his last day, something I as an OFEV patient can only dream about.

    We all have our path, and each will be different, and none of us knows exactly what to expect. I am glad to be reminded in this thread that one advantage of living with a chronic, progressive illness is that we can use our time consciously to put our relationships and our worldly affairs in order. (Although I’m beginning to realize my ability for putting things in order may elude me to the end!)

    I am sorry you now see to have several major systems in disrepair, and I can only imagine the challenge of managing multiple medications. I wish you all the best, I hope that hospice is available to you when you are ready, and I hope your loved ones can spend time with you during your remaining time.

    Warmly, Bruce

    Not a doctor/diagnosed 2022/feeling okay but for the OFEV side effects/fortunate to have health insurance and to live near a major university hospital with a pulmonary research program/


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