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    • #29975
      Thomas Adams
      Participant

      Not trying to be morbid but, do have questions regarding the final stages of IPF and what to expect.  I don’t necessarily fear death but, don’t wish to suffer and I just envision the image of a fish out of water. How is one made comfortable during the final stage leading to death?

    • #29976
      Catherine Leonard
      Participant

      Dear Thomas,

      A pertinent question.  The thought of ‘waterboarding, fish out of water,’ etc. is not especially enticing is it?  State of mind, living and staying active are the focus here, and yet every one of us is more than likely keenly aware of our end of days and breath.

      The thought isn’t as morbid as it is uncomfortable, but one we all will face.  I don’t know the answer, and as a Christian, I don’t fear death itself, believe that it is God who gives us breath, and yet, don’t look forward to suffocating at the end, nor to subjecting loved ones to watching me suffer in that way.  Would that my hardy heart would give way first!

      So yes.  Back to your question: What are ways that one can be made comfortable during that final stage?  I am also interested in the answer to this question.

      Thank you for bringing it up.

      Catherine

    • #30000
      Betty Buenning
      Participant

      Having just gone through this with my husband, Steve, diagnosed in 2016. We were going through the testing for a lung transplant and due to COVID he had not been seen in person from October 2020 to April 2021. He went from needing 1-3 liters of supplemental oxygen to 4-6 liters. Then suddenly he needed 8-10 liters.

      We were given all kinds of instructions for the possible lung transplant, but no one told us when it was an emergency to get him into the hospital to prevent catastrophic respiratory failure. His pft in the Fall 2020 was 48% lung capacity and in April 2021, it has dropped to 27%. He had been stable until that point. and fought using oxygen 24/7.  (That probably began to impact his heart and kidneys.) Due to COVID precautions, we could not start the lung transplant tests until May. That delay, I believe was a cause of the rapidly declining pulse ox levels and not being in position for a transplant before it was too late. His doctor was surprised he experienced that big a drop in lung function and said we should have been in contact with the transplant team. We had called several times and requested appointments, but could not get an opening until late April/May. (Thanks, COVID!)

      All the transplant tests were done except his colonoscopy when he finished the last tests mid-June. That week he picked up a common cold (rhinovirus) and that exacerbated his respiratory failure. After talking to his pulmonologist and treating him at home with higher oxygen and prednisone, we took him to the ER. He was admitted quickly and that point was using between 10-15 liters. They took xrays and each day 50% of his lungs that were clear went down. He was finally intubated to be flown to his home hospital/doctors, but it was too late. He was too sick to fight off the common cold. After a couple of days where his lungs seemed to stabilize, he had a heart attack (no previous problems) and experienced kidney failure. We asked for him to be extubated as the only other choice was a tracheostomy. He passed away with all the family there and our parish priest. Although he was an incredibly health 71 year old (except for his lungs) it was too much for him to fight off and it was too late to wait for a transplant.

      So, my advice is to watch those oxygen numbers and your pulse oximeter. If you start observing increasing variations, get to an ER in a major hospital that does transplants, but make those contacts before they are needed in an emergency.

      God be with you and all your families as this was incredibly tough. We had been together for 48 years and married for 47. We would have rather had Palliative/Hospice care, but that choice was not available to us with how sick he was.

      • #30008
        Steve Dragoo
        Participant

        @ebunning

        Hi Betty,

        Thank you for sharing the harshness of this disease. I am into it 5 years next month and 72. A little over a year ago I had an acute exacerbation and almost died. I could not move more than a few inches just sitting for a few months – if I did my lungs were screaming for O2 and my heart was racing. Being in this 3rd world country where IPF does not happen, my wife ran everywhere she could to get me O2.  Just big heavy bottles at first but she eventually found an expensive concentrator.

        A year later I can do a lot of what I did before except walk very far (100 meters). Our faith sustained us and I was ready to go to my sleep if that was God’s desire.  Hopefully, in a few months, we will be able to finally head to the USA but I will have to fly without a portable concentrator (POC).

        There are generally 4 stages to this disease but there are also several new drugs in various trial stages and I do hope many will benefit from this disease.

        I am glad you have your faith and know that it will sustain you in this hard world.

        Thank you,

        Steve

        • #30160
          Kathleen Kaufman
          Participant

          Just a comment re lung transplant. My husband had renal cancer in 1978. They removed the kidney, & he’s had no problems since then. We met with a lung transplant physician, & he said that the drugs one has to take after having a transplant are very hard on the kidneys, & he could guarantee that within a year he’d be on dialysis. So that eliminated a lung transplant as an option for us.

      • #30055
        Christie
        Moderator

        Betty, I’m so sorry for your loss. It is utterly unfair that people who need appointments for surveillance of progressive diseases, elective procedures, etc are at the mercy of covid restrictions and hangups from hospital overwhelm. It’s a great tagedy and i am so sorry your husband was a victim of that. Thank you for being here and sharing his/your story with us. This information is very valuable for those facing a future with pf. Your advice to keep a close watch on O2 levels and to know which hospitals nearby will the mkst helpful may be someones saving grace. My mom was taken to UCSF by careflight when her acute exacerbation almost ended her life. She was in denial about the numbers but could not even walk anymore her O2 was so low. It’s crucial not to delay when the sats drop during an AE. Anyway, thank you agai for your presence and your insight.
        Best,
        Christie

      • #30177
        Mary Geissler
        Participant

        Very touching to read of your journey. Thank you.

        Mary

         

    • #30002
      Thomas Adams
      Participant

      Betty:

      Thank-you so much for sharing your husband’s story and I am so very sorry for this loss in your family.  I have an annual CT scan scheduled for next week and pulmonary function test scheduled for the following week.  Then, meet with my pulmonologist to see how things have progressed over the last year.  A little worse I fear.

    • #30006
      John Fraze
      Participant

      I feel so bad for that lady and have great fear of putting my wife through something similar. I’m 84 and she is 81. We have been married 63 years and dated 3 years before getting married. I was diagnosed in November 2018 and on OFEV since January 1, 2019. Doing pretty well so far.

    • #30012
      Jan Mock
      Participant

      There is a Great Group on Facebook, “IPF Practical Support Forum” moderated by Burt Wilson.
      I have Learned Loads by reading the comments.

      Mr. Wilson has a vast & personal knowledge of IPF.

      One of the first things to do after receiving an IPF diagnosis is to get on a lung transplant list.

      Invaluable information there.

      I am now enjoying hospice care with morphine on this wonderful journey!

      • #30013
        Thomas Adams
        Participant

        Thanks Jan.  I just joined the IPF Practical Support Forum on Facebook.  The more information, the better.

    • #30023
      Karen Martin
      Participant

      Thomas, I am also not excited at the prospect of suffocating at the end of my days.  I will tell you that my husband was hospitalized in his final days for other reasons and was medicated to alleviate “oxygen hunger.”  I would expect that if one is hospitalized or in hospice care at the end stage that this would be available.  Or, as I tell my children, there is always the possibility that I might accidentally step in front of a bus before it comes to that.  Stay strong.  🙂

      • #30027
        Thomas Adams
        Participant

        Karen, thank-you for sharing your and your husband’s experience. I am so very sorry for your loss but, glad hospice was there to help.

    • #30024
      jim nox
      Participant

      Thank you Mr. Adams, for posing the question(s) that we all must have. I have found that doctors do not want to deal with questions about what to expect at “the end”. Understandable, as their focus is on treating and curing.

      My investigations have led me to decide that the best answers lie in Hospice end of life care. They have the doctors, nurses and home health professionals to keep you comfortable (not drugged out) and peaceful as “nature takes it course”. They also have a complete handle on pronouncing death & causation, and paperwork for a seamless handoff to the Funeral Director of your choice, who “takes it from there”. I just met with a funeral director yesterday and got my services chosen and planned so my loved ones are not suddenly confronted with these decisions in a time of grief. Since I live in two places, a home in Houston, Texas and a ranch 150 miles away. I will now focus on identifying a Hospice organization operating in both location.  My situation is a bit complicated, but I know I feel better knowing that all is prepared, planned, and decided whenever the time comes. I know my family feels the same. Now I can focus on enjoying what is left of life and in taking care of myself and family. It is a bridge a bit difficult to cross, but cross it we ultimately must.

      Good luck and best wishes. Jim Nox

      • #30056
        Christie
        Moderator

        Excellent suggestions Jim, thank you for your input. I know it can be traumatic and scary to think about the logistics of end of life/after life care, but your family will be grateful that youve taken those steps. Also, some people find the process of making their arrangements to be therapeutic… like, a ritual to find acceptance in the whole thing. Talking about it with your family can also help everyone find closure. It’s nice to know that things are taken care of and your wishes will be honored. Even my young friends who have gone through lung transplants have said it gave them peace to make arrangements and make their wishes known to their family, even when the parents wanted nothing to do with it for fear or denial reasons. It is unpleasant but it is also important.
        I’m glad you can enjoy time with your family now, and hope you are loving it out at your ranch.. I am envious!
        Christie

    • #30026
      Julie Grace
      Participant

      My husband passed in May of this year. He was diagnosed with IPF 4 years ago. He was 64years old & was denied for a lung transplant due to having a bout with skin cancer in 2019. It was a steady decline for him, quality of life lessened & the need for 02 increased. He went on hospice in February of this year. The last few months his health declined rapidly with drastic O2 levels dropping with the slightest physical movements. The day the hospital bed came he passed within 24 hours. Towards the last  month his appetite decreased & the last few days he barely would drink. Morphine & Ativan kept him comfortable. He couldn’t fight the fight any longer. It was difficult seeing him struggle to take those last few breaths. Even though he was on hospice it seemed as though when he would have scary episodes it was always during off hours when you would have a nurse on call & it took hours for them to arrive. You were in the trenches alone to get him through it & there was panic. I wish we would have exhausted all avenues for a lung transplant instead of accepting the denial from 1 institute. Prayers to all fighting this debilitating disease.   Julie Grace

      • #30039
        Thomas Adams
        Participant

        Thank-you for your comments and story, Julie.  From your and other’s comments, it looks like involving hospice in the final stages is the way to go.  They should be able to help with easing suffering and making one as comfortable as possible in the final stages.

      • #30057
        Christie
        Moderator

        I’m so sorry for your loss Julie. Thank you for being here and sharing your story with us. Your input is valuable and will be helpful to others in similar situations. It takes a lot of courage to talk about these things in grief.
        Sending hugs,
        Christie

    • #30028
      Donita Romero
      Participant

      My father was a body builder for over 50 years.  Exceptional shape.  Went to the gym 5 days a week even at the age of 79.  But late in 2018 he began experiencing shortness of breath that accelerated pretty quickly.  His rheumatologist had no idea why and his cardiologist thought it was his Afib.  They scheduled a surgery for his Afib in January 2019.  Unfortunately he never made it.  This started in October and by December 20th (Thursday) he was instructed to check himself into the hospital in order to see a pulmonologist due to the holidays.  On Saturday night I received a call that he had collapsed was rushed to the ICU and was intubated which he remained on for two weeks.  They finally told me on Christmas Eve that he had very advanced IPF (which he never knew about).  And that he wouldn’t leave the hospital alive.  I decide not to tell my brother until after Christmas to let him enjoy the holiday.  We had to remove him from the ventilator and the hospital staff made him comfortable with morphine and something to help with the feeling of breathlessness.  He eventually fell asleep or into a sort of coma and later that night passed.  I was tested a few months later only to find out I too have IPF.  Took me a minute to get the picture of his passing out of my mind and thinking about my own end of life journey.  But I have to enjoy my family as long as I can and have to stay positive.  I have hope they ill find something for us.  Unfortunately the drugs they have do nothing for autoimmune IPF so I have to keep hoping for a breakthrough.

      • #30058
        Christie
        Moderator

        Oh Donita, I am so sorry to hear that you were diagnosed with IPF so soon after going through that with your father. I can imagine how terrifying that must be. I suppose his relatively peaceful transition is something we can be thankful for but it doesnt make it suck any less that he passed. Thank you for sharing your, and his stories here. If you wouldnt mind answering a few questions, I am curious (no pressure if you arent up for it): Do you know if his pf was also autoimmune? How do you know that yours is? This is something I’m interested in and wonder about with my own family. Have you done any of the tests to check for a genetic link?
        Thanks for your time, thanks for being here,
        Christie

        • #30109
          Donita Romero
          Participant

          Hi Christie, thank you for your response.  Yes it does suck but I keep a good attitude.   I don’t know for certain if my fathers was autoimmune but doctors suspect that it was.  I am working with UCSF and they did a lung biopsy on me to confirm their suspicions and the pattern was consistent with autoimmune IPF.  I have not done any genetic testing in regards to IPF but after being diagnosed with Lupus I joined a study at UCSF where they took mouth swabs from my family members to study links due to my fathers Rheumatoid Arthritis.  I wasn’t aware of genetic testing for IPF.  Let me know if you have further questions.  Happy to answer them.

        • #30161
          Christie
          Moderator

          Thank you for sharing. I know that 23 and Me has an ongoing study looking at possible genetic links for PF (something about telomeres can indicate the likelihood of familial PF, if I recall). On the bright side, we also went through UCSF and I can assure you that you’re in the most capable hands there. They are absolutely brilliant.

    • #30091
      Catherine Leonard
      Participant

      I have waited too long to respond!  Thomas: Thank you for starting this topic.  Frightening as it is, we become stronger when we can face our deepest fears.

      Christie: You are delegated as a ‘participant,’ and I had to check.  Your wisdom and kind responses made me think you are a moderator.  You have the makings of a wise counselor.  Thank you for that.

      To:  Betty, Steve, John, Jan, Jim, Julie and Donita with your responses and stories: Thank you as well.     Your insights and suggestions are priceless.  Donita, I hope you have energy to answer Christie’s questions, as they mimic my own, as I feel I am getting a handle on my mortality, be it near or far.

      FYI: Cancer as a co-morbidity, even in remission negates options of lung transplant for five years, and a clinical trial for one year.  I know.  I’ve been declared to be in remission for a Non Hodgkins Lymphoma Large B Cell – Lung cancer since April.  Unfortunately, as some of you may know, chemotherapy is not kind to IPF.  I started Esbriet (perfinidone) one week ago, and am doing well so far.  (70 years young and thanking God for every breath He gives me.)

      Again,  Thankful for your responses!

      Catherine

      • #30162
        Christie
        Moderator

        What a wonderful compliment Catherine! Thank you! In fact, I am a moderator (I wonder why my tag says participant.. time to ring up tech support), but it is nice to have some validation that I am doing a good job. Thanks 🙂

    • #30119
      Ben Robinson
      Participant

      I too appreciate this information and those taking the time to convey it.  I was recently declined for a lung transplant probably because of my outspoken mouth calling the doctors antics and contradictions as i see them.  After all of that testing trials and tribulations.  I left feeling like they had done me a favor when hearing all that you go through afterwards and the disturbing percentages.  I have some low numbers but have been improving mostly thanks to my own education and common sense.  I also was not so sure i wanted those idiots cutting on me, they didn’t even express confidence that the surgeon knew where he would cut.  Disturbing in the least.  The cellular innovations successfully implemented in the Covid vaccines leave me hoping that they also may come up with something in that arena for lung disease such as ours.  I feel that perhaps i might rather go my own healing route and die if it comes to that, but i will give it the winter and decide on whether to restart with another hospital and roll the dice on the russian roulette of transplant.   Best of luck to all here.

      • #30120
        Karen Martin
        Participant

        Ben, I was happy to see someone else cite the odds and the post-transplant lifestyle as reasons to question whether or not to go this route.  My daughters are adamant they would do “anything” for me.  But I’m a widow and feel that whereas a spouse might be there for me, it is somewhat different to ask the assistance of other family members.  My husband was an amputee and the things we went through together are not things he would have been comfortable asking of our daughters.    That said, I find myself in agreement with you about taking my own path.  May your path be long and filled with love.

    • #30129
      Betty Buenning
      Participant

      Once Steve was intubated, he was not frantic or in pain until we had to extubate him. They kept him comfortable and we could see his breathing and pulse increase when we talked to him, so I think he might have heard some of what we told him. Once his heart and kidneys began to fail, we needed to let him go. He was not aware of that. The doctor said his body would tell us what to do. He had to be intubated to be airlifted, but the last conversation we had was when I informed him he was going to his home hospital. He said “that is my hope to survive.”

      Best wishes to you all and your families.

      • #30142
        Steve Dragoo
        Participant

        @ebuenning

        Hi Betty,

        Extremely touching and a healing blessing you were there with him.

        Steve

    • #30131
      Gweneeth
      Participant

      Thank you to everyone that has shared your stories. There are as many different stories as there are people. I have a couple questions. 1) About once a year I get so angry at this disease because it’s creeping along and I’m sick and tired of thinking about it! It’s not like we can ignore it although I’m trying right now. I haven’t worn my oxygen, except at night for the last week, temper tantrum. I’ve even been cleaning my house slowly. When I feel breathless, I sit down for 5 minutes and it gets better. Does anyone else have these prolonged pity parties. I know I’m depressed during this time. I’m giving myself one more week before I call the doc for a mild antidepressant.

      2) Does anyone else’s IPF get worse slowly? I just started year 6 after diagnosis, I’m 77. My lung function tests are very good except DLCO which is 43%. I’m retaining fluids and have mild pulmonary hypertension, as of 5 years ago. I take 60 mg Lasix but none of the IPF drugs.

      I live alone in North Carolina in a rural community but have wonderful friends and neighbors who help often. All my kids and grandchildren live in Michigan. They come to visit as often as possible.

      I’ve completed my Will and the kids have read it so we’re all on the same page. I’m donating my body to one of the medical colleges here in NC. I just have to decide which one. I’ve talked to a funeral director and know what he needs from the contact person. Half of the stuff in my little house has blue tape stuck to it. All the family that’s visited have put their names on stuff just as I begged them to. It’s become quite a joke in our family and my community.

      It’s like being all dressed and ready to go to the party only to have someone keep changing the date without telling me. I’m a born again believer and KNOW God’s right in front of me because I’m hanging onto his robe. But I’m so tired of being tired, of not having enough energy to do the things I enjoy. The only absolute truth is I KNOW that Jesus will be waiting with open arms when He finally tells me I can come HOME.

      Hugs to all Gweneeth

      • #30171
        Jerry
        Participant

        When I read ” I’m so tired of being tired ” I thought to myself  ,that says it all.

        Thank you for sharing your story .

        God bless you

         

    • #30141
      Catherine Leonard
      Participant

      A Big hug back to you Dear Gweneeth!

      Anger at the disease, temper tantrums and pity parties… I can identify.  Calling the doc for mild-antidepressant?  Also considered!  Hanging on to Jesus’ robe?  That too.  I chuckle over your insistence at getting people to identify what they want of yours and to mark it with blue tape.  And… the best metaphor: ‘All dressed for a party that keeps being rescheduled.’  You have a way with words, and your upbeat outlook despite your circumstances comes through your venting.  Thank you for that.

      I am thankful you have good friends and neighbors in North Carolina to look after you.  You touched my heart, and I encourage you to keep writing.  Yes.  IPF is known to worsen always; for some it’s generally gradual, for others it may be sporadic for spastic.  I’m curious as to why you aren’t taking either of the two ‘approved’ IPF drugs.  Maybe it’s your choice.  I started perfinidone Sept. 30 and am now in my second week.

      *Me:  Chemo for Non-Hodgkins Diffuse Large B Cell Lymphoma in lung was completed six months ago, and now the focus is on treating the IPF which was first diagnosed in 2017.  I’ll turn 71 this November.  (Feels like a very long battle!)

      Like you, my faith, family and fellowship with friends sustain me to a great degree, while fatigue and the guerrilla coughing spells sometimes drive me to personal pity parties.  Usually the dark clouds part, and I welcome and am thankful for a new day.  I hold your words to my heart, and I am most thankful you have an engraved invitation to the banquet.  See you there.

      Catherine

      • #30144
        Gweneeth
        Participant

        Caroline, you made me laugh and to whisper a ‘praise God’. I loved your final phrase, “Engraved invitation”.

        You asked why I chose not to try the meds.  I am highly sensitive to all pain medication and to a lesser degree other medication.  I read all the possible side affects of the meds and didn’t want to deal with those.  The other reason was psychological.  We go on these new drugs believing they are going to suppress our symptoms and we’re going to feel better.  When the side affects are severe and we feel worse, that hope of improvement is dashed.  There is a period of depression because we have no hope.  My last reason has to do with my faith.  Why would I want to take these meds to prolong my life when I would still be dependent on oxygen?  Without them, I might die sooner but be in heaven sooner as well.  I debated all the pros and cons and chose the path I know rather than the unknown.

        Im looking forward to reading about the Others out there who are living this strange life.  I glean something new from each story.  I’m praying for all of us.  Hugs G

    • #30167
      Gweneeth
      Participant

      Jon, thanks for your encouraging words. It’s nice to know you also have an ‘Engraved Invitation’ to the Masters table.  That is one of Christine’s truism.  If anyone living in North Carolina, USA wants info on donating organs or whole body donation within this state, I have done the research and will share what I have. Im so glad to have this group of slightly worn, somewhat bruised IPF  friends to say how I honestly feel and know you’ve all felt it or feeling it as well. I just want this anger to subside and I know eventually it will. Hugs and prayers to all. Gweneeth

    • #30172
      Ben Robinson
      Participant

      I mentioned I was rejected for lung transplant because I offended a jerk doctor then realized he did me a favor. He said I was frail and I said I could kick his arse. I curl 45 what do you do wimp. Pulmonologist = Lung Transplant Salesman. Outcome Percentages are poor.  I stand proud and tall of my self advocacy aka big mouth.  So I looked harder at alternatives that were left and found this fabulous lung and heart doctor and a new cardiologist topshelf high level and the new pulm wants to examine other alternatives first.  Not a salesman but maybe a real doctor exists out there  God works in mysterious ways.  More appointments but god helps those who help themselves   Fight fight fight. Raaaaaah.  I’m trying to inspire all you tired whiners. LoL.

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