January 24, 2019 at 11:50 am #16202
Death is not something anyone enjoys discussing, particularly when it is a loved one or yourself. I know the reason we are here is because either you or someone you love is battling IPF/PF. I am here because of my father. I would like to share with you what the remaining 5 months of his life were like. I know that everyone progresses differently, but my dad, as I am sure you are too, was terrified to suffer in the end. Gratefully, I can say that his suffering was very minimal. And I hope that will be the case for you, too.
My dad was diagnosed with IPF about 6-7 years ago. His progressed at a moderate pace, though I don’t really know the norm as there are so many variations of the disease. He first started with supplemental O2 just at night, eventually needing it if he was to exert himself, such as working in the yard, going for a walk, etc. to eventually needing 10L 24/7 — that was the last 5 months.
Prior to Aug. ’18 my dad was not too limited in what he could do, he just had to take it slow and take frequent breaks. Unfortunately Aug. 24th he developed a pulmonary embolism and that is what sent him downhill. I should back track before I do go on. Six weeks prior to Aug. 24th my dad had started using power chair and with that, came depression and a sense of being incapable of doing anything. This simply was not true, but that is how he felt at the time. Point being, he likely would not have developed blood clots had he not spent all his waking hours seated. So I warn you, should you find yourself in a power chair, PLEASE find a way to move your legs as often as you can, even if that means only moving your ankles, extending your legs, bouncing them, but ideally, get up each day and take a few steps or at least stand in place for few minutes at a time every hour. My dad had this ability, but I think he was too depressed at times to try.
So what were the last 5 months like? I stayed with him 5 day/nights a week so I had first hand experience with his decline. It was slow, but it was also apparent. One of the biggest challenges he had was constipation. This was likely due to the fact that he was so immobile — the bowels need us to be upright to work their best. Also, he was not eating near as much as he used to. I don’t know the best solution, but via medication we found a good combo using 30ml of Lactulose, Senna and 400mg of Mg+. His second significant issue was massive build up of dried up mucous. It was astonishing the amount and size of the gunk he could blow from his nose. He used fluticasone propionate, probably too frequently, but it really seemed to help. Of course he also lost quite a bit of weight. He came home from the hospital weighing 260 (he was retaining a TON of water though) and the day before he died he stepped on the scale weighing 216.
As far as his physical symptoms the main one, initially, was fatigue. Towards the end, the last month or so, he would sleep a lot, often times dozing off mid-conversation. I should mention his SpO2 averaged 90-92 (with 10L O2) when he came home from the hospital in Aug. and at the end was 74-80. As his SpO2 declined his sleep increased. In addition to increased sleep he went into fits of extreme delirium. For a while there we assumed it was due to low 02, but he was actually reading high during those times, his hospice nurse told us that it was the CO2 build up that was causing the delirium. It seemed to be totally random when these episodes would start and stop. The longest would be 24 hours, but they were typically only 4-5 hours long. Lorazepam and Haldol helped somewhat with this.
Morphine was something he was Rx’d through hospice. I should add that he was put on hospice when he was released from the hospital in Aug. Morphine has a way of relaxing the air passage therefore allowing for easier breathing. It seems odd to give a respiratory depressant to someone who already cannot breathe well, but at low doses it seemed to work great. Initially he only used it a few times a day — it definitely exacerbated the constipation — in the end he was using multiple times per day. A bottle used to last well over week, in the end he was going through one in a few days.
The only time my dad said he was in physical pain was when he would get mad/upset/cry/yell, essentially “get winded.” This would cause him to have to breathe deeply, which of course for him was impossible, so his chest would hurt until he settled down. So we did our best to keep him calm, but one can only do so much.
The last 36 hours of his life were mostly peaceful. I was at his house on Jan. 19th, he was very sleepy, but that was not anything knew. I helped him to bed at 4:30PM and went home. I checked in with his wife to see how he was doing. She said he woke up at 1:30AM, very agitated, thinking the house had been robbed, that we needed to call the police, tearing his room apart … While this sounds alarming, this was not the first time he had moments like this. So while it was challenging for her to handle him throughout the night, she was not too concerned. The next morning she called me and had me talk to him. This was 10AM. I could tell he was confused — I talked to him and tried to help him understand that he was safe and nothing happened. He seemed to believe me. At 11:30AM he was finally sleepy again and laid back down. Again, I checked in throughout the day. I was told he was sleeping and waking up off and on throughout the afternoon. My step-brother checked on him at 8:15PM, he was sleeping and at 9:15 my step-mom walked past his room to find him on the floor, non-responsive … he had passed away. Hospice and the paramedics believe he may have had a heart attack and did not suffer at all. Of course one can never know.
Overall in the 5 remaining months of his life he was generally comfortable. He had to take things very very slowly. I gave him sponge bathes as he sat on the side of the bed. He used a urinal and had a commode in his bedroom — which for the most part he did not need too much help using. He could dress himself, but did prefer help. He could get himself around the house in his power chair. He shaved his face two days before he died. We could take him places with 02 canisters, but it was hard for him to get in/out of the car, but he was determined. The two of us had many many hours together, my dad was one to never really complain, but when he did it was because he was feeling “winded” and/or tired. Watching him slowly decline was heartbreaking, but I am so grateful that he did not suffer terribly. He was never bed bound, he did not have to wear diapers (he was terrified of that) and he could do some very basic things for himself. I would like to think that he had the best possible end. He was 72 years old.
I hope that you, or your loved one, can leave with this much comfort and peace. Also, feel free to reach out to me should you have any questions about hospice care, medication use/strategies or anything that may come up. Hospice was wonderful, but they could not be there 24 hours a day so there were times when my step-mom and I just did what sounded the best.
January 25, 2019 at 9:44 am #16219
I am very sorry to hear of your father passing. I was diagnosed with IPF 2/16.
Your comments of your fathers last five months were very helpful. Up until last summer I volunteered with Hospice and they are a wonderful group but as you said, they are not there 24/7.
I have not done any volunteering since we moved closer to the kids this past Aug. As I was put on oxygen 24/7 in Sept and I have been very busy dealing with my declining sat rates. I do stay active, amazing how I feared using oxygen outside of the house and now its no big deal.
I can understand the depression. Its frustrating to want to do something but its so hard with the SOB.
I am very sure your dad loved the time he spent with you during this time frame.
Again I am sorry for your loss.
March 9, 2019 at 11:28 am #17494Edward ElliotParticipant
Thank you, Megan for painting this picture. I find it easy to put myself in it. My time will come, but unlike your Dad I had no problem with diapers. I wore them early on before imodium controlled the sudden onsets of diarrhea from the drug Ofev. Again, your narrative is very much appreciated. Cheers, Ed E.
March 9, 2019 at 2:28 pm #17503
I know Megan will appreciate hearing how much her narrative has helped you. We’re very lucky that she chose to share such a tough experience with us, as so many seem to relate to her words, despite this being a very tough topic to discuss. Thanks for sharing and letting her know 🙂
January 25, 2019 at 12:44 pm #16221Steve DragooParticipant
Megan – thank you for a complete diary of your father. I have so many thoughts about your post, that I will just use much of it as a bit of a guidepost for my wife and I. It is encouraging how you, he, and your family managed his IPF as most seem to have only 3 – 5 years after official discovery. I hope you will be at peace. – SteveD
January 25, 2019 at 4:47 pm #16223DeedParticipant
Thank you for sharing your story, I appreciate your insight.
January 26, 2019 at 1:39 pm #16265Mary OsullivanParticipant
You had such a tactful way of telling your father’s story, that we could all find comfort in it. I am so sorry for what you went through. I hope you are at peace knowing you did all you could do for your father. He is at peace now. Thank you for sharing with us.
January 26, 2019 at 3:11 pm #16270
Couldn’t agree more with you Mary. I am so thankful for Megan taking the time to post her Dad’s story with such poise and honesty.
January 26, 2019 at 2:24 pm #16267Raymond C. KingParticipant
I read your recap of your father’s bout with the IPF word by word. It was wonderful that you were able to help him so much in his last years. I will remember your story of how his symptoms progressed. As you said, I’m sure everyone progresses at a different rate but some of the symptoms you shared might help me and others be aware of what might be in our future and how to overcome them if we can. I will keep your post to use for a history of what might be in store for me.
January 26, 2019 at 3:10 pm #16269
Thank you so much for speaking so eloquently, open and honestly about your Dad, especially with such a tough topic. The reality is – death is inevitable for all of us, sick or not, so while it is a difficult topic to discuss, I believe it is an important one. That said, I am sending you my deepest condolences on the loss of your Dad. I am so glad you were by his side, and thankful that his suffering was minimal.
Your message about constant movement, even when it is difficult, is a good one to avoid PEs. I will remember this and appreciate your sharing, and somedays I feel just too tired to get up and move about the house. I am reminded that this is important, but not in the same way your reminder has touched me, so thank you for that. Megan, was your Dad’s weight loss as a result of losing his appetite, medication side effects or disease progression, do you know? I am a bit concerned about my sudden loss of appetite right now, although I know it might just be part of my disease or a virus. I am still pushing myself to eat right now for energy, but did take mental note of that this week, especially after hearing my PFTs decreased by 8% last week. I can only imagine the learning you went through when it came to all the medications that might help keep him comfortable and alleviate some of the unpleasant symptoms. Kudos to you Megan for all of your efforts in supporting your Dad right up to the end, it is so admirable of you and I know it wouldn’t have been easy.
Megan can I ask if hospice had any suggestions to help manage the C02 build-up, causing him such intense moments of fear or anxiety? I’m not sure what the answer to this would be so I am truly asking out of curiosity. That is one of my fears actually, is the Co2 build-up and delirium. I had this after a surgery once in the ICU and it was really scary for both me and my family. My heart aches for you to have witnessed that with your Dad.
So much admiration for the love and devotion you gave your Dad until the end, and such courage for sharing his details with all of us on the forum, to bring both comfort and a level of understanding only someone who has been through it could provide. Thank you for that, and sending you a big hug. Again, so very sorry for your loss.
January 27, 2019 at 9:05 am #16276
I thank you for moderating this forum (At least that is my impression). When my dad was diagnosed there was so little information about personal experiences, and there still is. I was able to find some great information via this forum and site in general, so thank you again, and I am sorry that you are battling the disease as well. I was aware you were when I joined …
I searched and searched the web and here for what to expect at the end of life, yet could never find anything. My dad was so terrified of the unknown, as was I. Not that what I shared encompasses all who will pass from IPF, it was his experience, but I imagine in ways, quite similar to others.
To answer your questions.
His weight loss was as combination of being in his power chair or bed 24/7, and not eating as much. He lost significant upper body mass. I took his watch in to have it resized and come the next week it was too big again. I would not say any of the meds were the cause. He often said he didn’t have an appetite. He would eat something every day, but rarely was it a full meal. He did like juice (orange & apple), and while that is far from healthy, he did get calories from that. I’d suggest that if you do find you are losing weight that when you eat, make it caloric and nutritionally dense. High fat for sure.
For the CO2 retention hospice recommended pursed lipped breathing accentuating the exhalation so as to blow off as much CO2 as possible. My dad was a mouth breather, which did not help him at all and when he got into those states it was hard to keep him focused. He never seemed to remember his episodes; I am not sure what comfort that is. And when he got really confused we had low dose Haloperidol for him — that helped minimally. From my understating it’s for the near end stages when a person is highly agitated, which my dad was the last 24 hours, but they recommended to try it for the delirium. He also had Ativan and morphine, they nor the Haloperidol would bring him out of it, but it would calm him down and often times make him tired enough so that he could sleep. Towards the end, his sleep was very erratic, but that is unfortunately part of the dying process.
As far as his delirium, he only had a few episodes where he was scared and felt we needed to call the police, get a gun or other extreme measures. Thankfully, in time, I could get him to calm down. The rest of the time he was convinced he needed to go to work or that he had talked to people, heard things, etc. None of this seemed distressing to him. In all honesty some of the things he would come up with were quite funny at times. He was often very sweet when confused, but it was still hard to see because you knew he also knew he was confused.
The hardest thing to go through, for me, was seeing a man who went from being the head of the household, successful in his work, to becoming completely house bound simply because he could not breathe. I am certain if I did not spent as much time with him over the past five months he would have died sooner. His wife … she was not able to have the patiences that I was able offer him. Her health is not great either, so it was very hard for her. So I really hope that you have patient, healthy and caring people to be there for you.
Try to remain positive (much easier said than done!), but also allow yourself to rest when you need to. And if possible, eliminate any extraneous stress from your life. My step-brother has four kids, 3 boys under 12 years old, and as much as my dad liked to see them, their energy and loud talking would take a toll on him.
I wish you all the best!! And I continue to be more than happy to answer any questions you have. You can always send an email, too: meganzette[email protected] (that goes for anyone reading this post, please email me with questions)
January 27, 2019 at 9:15 am #16287
Thank you so much for getting back to me, and for all of your kind words during this tough time. I admire your strength, and am grateful for the contributions you’ve made to our forum. I am the moderator correct, and I take a lot of pride and comfort in the relationships that have formed on this site, along with gratitude for the experiences shared. Doctors know a lot, but there is an element they can’t understand about living with this disease and that is what is so valuable about our forums. Thanks for being a part of it.
Thanks for answering all my questions about your Dad too, I really appreciate it. I’m not sure what was going on with my appetite issue last week, coupled with extreme fatigue but it seems to be slowly reversing. Though, I did lose some weight from it last week. When I do eat, I try to focus on foods with high ‘good fats’ to try and keep me fuller longer. Thanks for the reminder with that, and about the nutritionally dense foods.
Breaks my heart about the C02 retention and the fact that the only thing Hospice could recommend is pursed-lip breathing, which I have a hard time doing intentionally on a good day. I suppose that is the point of hospice though isn’t it, to not intervene with life-saving interventions but rather to manage the symptoms. So sorry he went through such delirium and confusion, that must have been so tough for you all to witness.
I am lucky to be surrounded by lots of caring people, both at home and at work (which I know won’t last forever, I’ll need to stop working eventually). And many of them are also incredibly patient! I am in admiration for the devotion you showed your Dad, his journey was undoubtedly made a little easier because of you.
Thank you also for the reminder about eliminating excessive stress from my life. I feel a bit bad that I’m no longer spending as much time with kids that I used to. I used to be known as the person who would spend hours with my nephews, friends kids, etc. but they exhaust me now and it takes me days to recover so I appreciate hearing what you shared about your Dad and step-brothers’ kids. It is tiring! I also basically “hibernate” on weekends, and choose not to go out for social activities because I am far too tired and really need that time to reboot myself so I can make it through the week. That is hard to accept as a 31 year old…
Thank you again for your kind words and thoughtful responses to all of our questions! Please stay in touch if you’re able to 🙂
January 27, 2019 at 10:41 am #16292
Oh my goodness, I didn’t realize you are so young!!! I’m 42 and consider 31 very young 🙁 I know there are many variations of the disease and while I know nothing of your disease, I like to think on the positive side in that you have youth on your side. Also, those of us in the younger generation are much more aware of the importance of nutrition, meditation, sleep, stress reduction, etc. My dad, and his wife, as I am sure many in their generation, were convinced medication is the only thing that is needed. It drove me nuts, but what can you do?
I can see how hibernating on the weekends may be tough for you, but it’s truly very important for you. I know most people, myself included, have no idea what it’s like to not be as oxygenated as someone with healthy lungs, and the fact that you likely do not look sickly, makes it all that much harder for others to know that you simply do not have the energy, regardless of sleep quality and nutrition. Always put yourself/health first.
I agree that pursed lipped breathing as the only solution for CO2 retention is disheartening, that said, the hospice nurse did say intubation is one other option, but obviously quality of life is pretty non-existent.
All the best to you!!
- This reply was modified 1 year, 4 months ago by Megan Zetter.
January 27, 2019 at 7:50 pm #16307
Thanks so much for getting back to me, and for your kind words! Yes, unfortunately I was diagnosed just before my 29th birthday, but became symptomatic of IPF early on in my 28th year, while traveling actually. It likely wasn’t traveling that caused it, but it certainly made doing things a lot more difficult and I knew something was wrong given what I could previously do physically and no longer could. It was very scary, but I thought for months I just had a terrible cold/flu/cough that wouldn’t go away. Unfortunately my doctors thought the same thing for 9 months!
I am trying to focus on the importance of nutrition, diet, exercise, etc as best as I can, only accepting medications when required. I hear you on the older generation and drugs… I have members of my family who are the same. I am so thankful for all the literature coming out about whole foods, and natural supplements that seem to help manage symptoms for many of us with different chronic illnesses.
Thanks for your kind words about prioritizing my health, it is so hard to do but I know very important. I am getting better at it, it was one of my new years resolutions! I agree with you re: intubation, that certainly wouldn’t have given him any quality of life, and I can speak from experience; it is very anxiety-provoking, uncomfortable and scary. You did what was best for him, which is so admirable!
Take care and thanks for writing.
January 29, 2019 at 4:46 pm #16335
Thank you for the in-depth report. It was extremely helpful to me as I have ipf with very similar conditions as your dad had. When one has a terminal disease it seems we wonder what the end will be like. The progress your dad had is what I am going through right now. It I move my lips I breath hard. Okay a little exaggeration but I do find it hard to speak sometimes.
I am not afraid to die but the possibility of my organs shutting down and making a mess concerns me but I guess your dad had a heart attack and I can live with going out that way. (sorry my sense of humor kicks in when I least expect it).
I also am concerned with people bathing me and the delirium that may occur.
I , like others in our situation, do not want to be a burden. I do sit a lot but also move around and take my own showers and dress myself even though it causes my breathing to increase so I take it slow. I dread the thought of someone doing that for me.
I am at a point that any exertions whatsoever causes a great off of o2. I am presently at 10 liters.
I combat nasal problems with nasal sprays and use cough drops, Dayquill and some times Sudafed and Advil which seems to help.
I have a chronic random coughs that gets violent and lasts several minutes even though my o2 is in the 90’s. I cough when I am exposed to cold food, drinks or low temperatures.
You did not mention about your dads coughing.
Lastly, I am reluctant to call in palliative care as my wife and daughter help me, but again am I putting too much on them?
Again, thank you for your detailed report on the last days. It really helped to ease my mind on some level.
Oh, how well did he do with the morphine?
January 30, 2019 at 7:47 am #16341
Thanks for writing back on Megan’s post and sharing a bit of your experience. Sorry you’re enduring similar to what her Dad went through, and although its tough to talk about, I appreciate your willingness to share. I agree with you, many of us who are living with IPF do wonder what the end will be like, and often we ponder that in silence so I am thankful for this thread. The delirium is what scares me most Bill, so I share that fear with you!
Thinking of you and I know Megan will be very helpful in her response back to you when she can 🙂
January 29, 2019 at 10:04 pm #16336
I am all for a good sense of humor!!
I’m so sorry to hear about your condition. It sounds like you are managing quite well. My dad was on 10L as well and could barely do anything for himself, so you are doing great! Talking definitely winded him, so while you can make a joke about just moving the lips, unfortunately it is true. That really frustrated my dad.
You are the third person to mention a cough. My dad, for whatever reason, did not have a chronic cough. He would cough some, but certainly not a lot — I definitely would have remembered that. I can only imagine how much worse it can make that moment. Coughing requires quite a bit of effort.
He did well with the morphine and it really seemed to help him. I am not sure if it was placebo or truly helpful, but in the end he was using it quite a bit. As far as side effects it only seemed to make him a bit more constipated. Perhaps a little sleepy, too, but he never appeared to be high on it.
You may not suffer from delirium. I hope you don’t, but if you do, and you experience it like my dad did, he didn’t seem to remember any of his episodes. For whatever that is worth.
I completely understand the not wanting to to have all your daily/private needs tended too, no one does, but a time may come when you do. I hope your family will step in and help you. I suppose that depends on the relationships. Caring for my dad, was as necessary as the air I breathed. I couldn’t stand being away from him. While at times, it would becoming taxing, I never wanted to have someone else caring for him and he did not either. His wife helped, too, of course. My dad and I became incredibly close during the last five months of his life, and if meant wiping his butt, which it did, I would never have changed a thing. It was an amazing time for us. Sad and heartbreaking obviously, but our love for each other deepened in a way I have never experienced.
All the best to you, Bill, and should you have more questions, please feel free to write me: [email protected]
January 30, 2019 at 7:50 am #16342
Thanks to you once again Megan for taking the time to talk, answer questions and support members of our forum! I am sure your Dad would be so proud, and I continue to be in admiration of your strength when it comes to helping us after the loss of your Dad. Thank you.
Reading how your love deepened for one another in the end is both heart-breaking and beautiful Megan, what a gift you were to him. Please stay in touch!
February 3, 2019 at 7:47 pm #16460
Megan you have made my day.
Because of your input to this forum I decided to try the morphine regime.
It is a low dose of which I take 1 tsp every 4 hours.
This has reduced my coughing by 90 per cent (An educated guess) and when I do it is of shorter duration and not as severe. Even though my shortness of breath has not changed as it seems I am breathing easier. So,thank you,thank you,thank you.
Also I went to pulmonary rehab and they showed a dvd of that talked about pursed lips. It has never worked for me. The rehab was mostly geared toward COPD and not IPF so when I watched the show it said that COPD is different than IPF in that IPF is scaring of the aveoli and COPD is inflamatiion so IPF needs more oxygen and not more CO2. Which I took to means that breathing through the mouth and the nose is better. Unless I misinterpreted it I know the pursed lips thing just don’t work for me.
Again thanks you have helped me and I am sure other members of this forum.
February 3, 2019 at 9:05 pm #16462
Yes, use the morphine — of course as directed, but if it is low dose as my dads was, I think you’d really have a to take a lot for it to be an issue. It is very commonly prescribed for air hunger. My dad would panic if he thought there was a chance he would run out over he weekend — it worked that well for him. He was directed to take 1ml every 15 minutes as needed, but he never took that much. At most it would be 2ml every few hours, that was just at the end. Early stages, 1-2 months on hospice, he didn’t use it that much.
My dad also thought the pursed lipped breathing was pretty useless, so if it’s not doing anything for you then probably not worth the effort.
I know it’s discouraging to feel like your doctors are not doing anything for you, but like you said, unfortunately there is not much that can be done. Have you considered hospice care? It does NOT mean you are dying anytime soon, but it was wonderful for my dad. Having access to care 24 hours/day, medication needs taken care of and nurse visits was very comforting. Other services available are, in home help, (I did all of that stuff), spiritual/religious counseling. My dad did talk to the pastor twice. A nurse aide for bathing, shaving, wound care, etc. There is SO much available and honestly if you don’t already have good support team, you deserve to. Hospice is wonderful. They even offer help for the family. I have access to a social worker/counseling for a year now. I’m not sure that I will use it, but it’s nice knowing I can call someone at anytime should I need to.
I listened to an excellent book today, I finished in one day, it was that good! It’s called Being Mortal, by Atul Gawande. I wish I had found it before my dad died, but I still learned quite a bit and it made me feel very good about the care my dad received and for being on hospice. It was a tough decision because we think hospice = death, while you have to have a terminal illness to qualify, hospice is not about death it’s about making the end of your life as comfortable and enjoyable as possible. Who doesn’t want that? 🙂
I am happy to know that my post has been helpful. It makes me feel good knowing that I am helping others.
February 4, 2019 at 9:56 am #16467
Yes, you certainly are helping others and I am so appreciative of your generosity, authenticity and honesty when it comes to sharing about your Dad’s life. It really means a lot to us all, thanks for being here! I also agree with so much about what you said regarding hospice. Unfortunately our society all-too-often associates hospice with dying soon, which is not at all what it means as you say. Rather, the focus is on quality of life when living with a terminal illness. It is still hard to accept for people though I suppose, as I am a big advocate for hospice care but I too, get a little bit of “cold feet”when I think about contacting hospice for my own care someday. I need to get over that though, as I know they will be extremely helpful.
Thanks again for all of your contributions to our community – so glad you’re here!
February 4, 2019 at 9:52 am #16466
Thanks so much for writing to us! I know your reply was to Megan, and I agree, I found her post very helpful and I know many others did on the forums as well. She is so wonderful, and I am glad she is part of this online community. I am amazed to hear that the morphine reduced your coughing frequency and duration by so much, that is wonderful news! Was your doctor really open to starting you on this regimen? I really am glad it is providing you with some relief. It is something I will want to consider too when the time comes, as this cough can exhausting. It is worse right now due to a head cold and its painful in my chest, but I know that won’t last. So thrilled that you’re getting some relief.
Take good care,
February 2, 2019 at 10:08 am #16411Floyd C MontgomeryParticipant
I am sorry about your dads death, but I wanted you to kmow how much it meams to me to read about his last 5 months.
I am an 83 year old man that was diagnoised with IPF about 15 months ago, and I am slowly but surely going down hill. Currently I am on 6l of oxygen to walk around and more if I do anything. I am discouraged about how fast my need for oxygen increases, but realize it is what keeps me going.
It is almost as if my pulmonologist doesn’t want to meet with me because, in truth, there is nothing he can really do except try to keep me pain free. He does not recommend, I go on either of the drugs, basicially because of their side effects and my age.
What I really fear in not dying, but but how this thing ends. I have all the fears your dad did, but NO ONE wants to talk about the end of my life, or how it will happen. What a relief to read your post. It gives me a sense of serenity to know how it ended for your dad, and a hope that my death will be as painfree as his.
THANK YOU SO MUCH FOR SHARING.
February 3, 2019 at 6:53 pm #16451
Thanks for getting in touch with us, although so sorry to hear your post about Megan’s Dad is so relatable. Although it is uncomfortable to talk about, I feel its important to talk about death and the dying process because it sure can be scary otherwise. I’m sorry your Doctor won’t do more for you. Has he/she recommended involvement with hospice, even as a team of professionals who can answer your questions or concerns?
Feel free to reach out to us anytime, and I know Megan said she’d be more than willing to keep in contact with people who have more questions or need to talk. Her email is embedded within the forums somewhere, and if you can’t find it, let me know, I’ll ensure it gets to you. Take care and thanks for writing.
February 4, 2019 at 8:14 pm #16479Floyd C MontgomeryParticipant
I am not at the stage yet that I can avail my self of their services, but my wife has been very active in hospice and I won’t hesitate to use them.
Thanks again for sharing. I will keep in touch.
February 10, 2019 at 3:02 pm #16638
That is great that you are not ready, but don’t wait longer, hoping you will get better, if and when you feel you need more support, because like I said, it’s purpose is to allow you to have the best quality of life towards the end.
February 10, 2019 at 5:01 am #16635
I am grateful for Megan’s candid account of her dad’s last days.
At least he lived longer than the given 3-5years. Thanks to Megan largely.
I am in the 2nd year post-diagnosis now and although I know that the course is progressive deterioration, I have put myself on ‘survival mode’. Struggle I must.
I want to know whether he was on antifibrotics and whether it helped at all.
I don’t know how it will end for me. At least I know one of the possibilities. I don’t know whether there will be someone as caring as Megan with me in my last days.
I am extremely sorry for Megan’s loss but at least she should be satisfied with her contribution towards his comfort. I am sure he appreciated it.
May Mya Win
February 10, 2019 at 2:59 pm #16637
Yes, my dad did use Ofev, but it’s really hard to say if it worked. He didn’t feel like they did. What it did do was give him chronic diarrhea. Outside of medication (prednisone was helpful at times for breathing), I think the best thing you could do it make sure you are eating very well. If you are not feeding your body optimally it won’t be able to handle infections as well, nor can it keep your lungs healthy — or slow the decline. I am so disheartened by the complete lack information about how nutrition will directly impact a person with IPF, or any disease for that matter. Most chronic conditions are 100% related to poor diet. At one time my dad said he would do anything if he thought it would help, but the one thing I knew he wouldn’t try, because I suggested it, was to change/clean-up his diet. The biggest offenders are sugar/diary/grains and of course any refined/man made food.
I am very sorry that you have this condition. Like I said, my dad really did not suffer, physically, all that much from the disease. I’d say if you were to ask him what was the worst for him, excluding the ability to breathe normally, was that he could no longer leave his home whenever he felt like or to be active. So feeling depressed and more or less stuck at home was what really bother him, but this didn’t even happen until the last 6 or 7 months as that is when he felt like he needed a power chair or wheelchair because he was simply getting far too winded if he walked.
And I REALLY hope that when it comes to the time where you need daily help, that you get it! I’m a chiropractor currently, but after having had the experience caring for my dad a part of me is wanting to become an in-home care giver for people with diseases that keep them housebound. While it would obviously be different with someone I don’t love, I would give no less to that person than my dad received. It broke my heart to watch him lose his ability to live a full-filling and autonomous life. We all deserve that and we all deserve to be cared for when we need it.
February 10, 2019 at 9:08 pm #16648
It is so nice to hear from you, thank you so much for writing and getting in touch with us. I think of you often, and know you’ll check in whenever you can. Did you have a nice weekend?
Do you feel as though you’re noticing the progression a lot now, May? I am nearly into my third year (diagnosed April 2016) and definitely notice some differences, but dare I say it: nothing too drastic. Unfortunately I was reminded the hard way last week that this can change in an instant as a fellow PF warrior passed away suddenly after doing so well for nearly three years. I’m just trying to count my blessings each day!
Are you on any anti-fibrotic medications right now, May? I hope you’re tolerating them okay (I know the side effects can be very unpleasant) and that you feel they are helping a bit. Hang in there, and feel free to write us any time. I always enjoy hearing how you’re doing!
February 10, 2019 at 9:04 pm #16647
I know your reply was to May, but I just want to intercept quickly and say thank you for such a thoughtful, genuine post. You’re amazing to think of becoming an in-home care provider to those with a chronic illness, like you did for your Dad. He was so lucky to have you, and it seems like you have so much compassion and love to give. I really admire you!
I hope you’re doing as well as possible, and thank you for continuing to be part of our community.
Hugs to you.
February 13, 2019 at 9:01 am #16712
Thank you very much for your advice.
It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.
I am still trying my best to eat more. I look forward to a stronger me.
A full dose of Esbiret did not help in this matter. But I have to take it as I have no option.
Your desire to help people like us is commendable.
You have a Mega Big Heart.
February 13, 2019 at 9:02 am #16713
Respiratory tract infection is bad news.
It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.
A friend pointed out to me that having to avoid the sun because of the fear of photosensitivity reactions could make me deficient in Vitamin D and impair my resistance. So I am taking vitamin D supplements. Hope it helps
I am on a full dose of Esbiret. I have to take it as I have no option.
Thank you for your concern,
February 13, 2019 at 7:57 pm #16757
Thanks for writing and I hope this note finds you doing well.
Yes, I agree, respiratory tract infection is bad news! Thankfully, my cold seems to be leaving me and I don’t think it was any type bacterial thing which is really good. I was worried there for a bit! I hope the antibiotic injections are helping you feel better and be symptom free? Yes, our diet is so important – especially finding a good balance. I like to cook (albeit, I am not the best at it) so I am lucky that way 🙂
Glad you’re on a vitamin D supplement, I am as well and actually just wrote a post about this earlier today. It is a good supplement to be on.
Take care, and thanks again for writing.
February 14, 2019 at 5:19 pm #16772
I am curious as to where you are in Canada.
I have been up both coasts while full timing in an RV and loved Canada.
Update on my coughing. The morphine is working but causing constipation so I am experimenting with doses and laxatives. I cut back on the dose amount from 1 teaspoon to half just twice a day. The prescription is for 1 teaspoon every 4 hours. If I can use less and still have cough relief maybe it will relieve the constipation. I am passing this on to maybe help others with the coughing although I know we are all different it may help some. I will update you on my results. Megan has been a great source of information for me.
February 14, 2019 at 7:44 pm #16782
Nice to hear from you and thanks for writing! Oh, exploring this country via RV is high on my parents priority list when they retire, that would be amazing but so much driving. I live in Ontario and drove to Halifax a couple of times and just going to the east coast felt so long. Did you drive from one side of the country to the other?
Good idea re: cutting back on the dosage. It’s so frustrating when a medication seems to work for us but the side effects are unpleasant. Sorry to hear it is causing trouble for you and I hope the reduction of the dose continues to be effective for you. Keep us posted on how it goes, and yes I am sure others will surely benefit from the information shared 🙂
Megan has been a great help to me as well, so glad she is part of this community.
February 21, 2019 at 8:18 pm #16954Jerry BeelerParticipant
Thank you so much for your story with your father. I can’t begin to tell you how greatly I admire you. I was diagnosed a week ago today and this is the first true life account of how end of life MIGHT go that I have read. Thank you for the insight as it has consumed my thoughts since my diagnosis.
I truly believe that you will be with your father again in the future. I hope you find the comfort in that that you gave your father caring for him.
February 22, 2019 at 9:24 am #16970
So glad you found @megan-zetter ‘s post helpful, I did as well and I know she will appreciate hearing from you. Although tough to talk about, hearing real life experiences about how end-of-life might go with this disease is of interest to me. Megan has been so kind to share such a tough experience with all of us. Take care, and feel free to write us anytime Jerry.
March 6, 2019 at 2:49 pm #17375
This is a new unexpected experience of end of life processes. I am 79 years old and have little doubt that I am close to the end as my oxygen requirements are reaching more than the oxygenators can handle.
I was diagnosed with ipf with a biopsy in 2010. I joined a study group for a year for the use of perfinidone(esbriet). I have been taking it since. It is supposed to slow down the progression. I cannot conclude beyond any certainty that it is working or not as we are all different when it comes to how we react to our condition or medications.
First of all I am not a downer kind of guy and am not afraid of dying. I try to just ride the progression out without much regard to the end of life consequences and take them day to day and deal with it. Thanks to Megan and her kind post on her dad.
But alas, there is a new twist I did not see coming. I try not to be materialistic as they are just “things” until I realized how connected I was. My IPF was slowly chipping away at my ability to do things as well we all know happens. I had to stop activities that I dearly loved. One by one my traveling, walking, golfing, bowling, piano playing, making out with my wife (that one hurt) were being eliminated from one who was a very active individual.
When I gave up these things I thought I handled it pretty well until I started selling off the equipment. When I sold my golf clubs it was like a part of me was removed. Yes they are only golf clubs but with those golf clubs came many experiences that were attached and I was sad. The same goes for my bowling equipment and the piano. I no longer can remember the music. And I was sad.
When the last item, the piano was sold I actually shed a tear realizing that this terrible disease is chipping away a little at a time not only my ability to breath but my mental acceptance of the fact that I will never be able to do theses things again.
I am not suffering with despair or depression because I will accept whatever comes because I have the support of family and friends and still put things behind me and use my god given sense of humor to keep me positive and to keep the people around me from feeling sorry for me.
Thanks for listening.
March 6, 2019 at 3:00 pm #17376
Okay, here is a morbid thought.
If my breathing is such that I am unable to walk across a room when my oxygen drops off into the 70’s and I am basically home bound, should I really be taking a pill to slow down the progression?
March 8, 2019 at 8:15 am #17408
Thanks so much for getting in touch and sharing a bit of your experience in this important topic thread. Megan really started some good conversations here by bravely sharing her experience with her dad. A tough topic to talk about, but so important…
I am glad you were given the opportunity to take Esbriet Bill, even though you say you can’t conclude it has been helpful. What have your PFTs shown, just out of curiosity? Have they showed a gradual decline in lung function, or maybe the Ebsriet has slowed down the progression a bit? I can understand that its hard to tell for sure, some days I wonder if my anti-fibrotic medication is working too but try to believe that it is.
Your comments about letting go of some of the materialistic things that you loved made my heart ache, as I haven’t done this yet but putting myself in your shoes; I can only imagine how painful this was for you. It is such a cruel disease and as you say, it not only steals away our physical ability to breathe but so much of our mental capacity, and even things we love which we’ve had to let go of as a result of IPF/PF. Have you been able to rekindle an old passion of any kind Bill? When I had to give up playing hockey I was devastated, but in the quiet of dealing with IPF I re-found my love of crafting and scrapbooking. This has become very therapeutic for me, and is a task I can do sitting with my oxygen. Not sure if you could explore something similar?
Hang in there Bill, this is such a tough phase to go through with our disease. Feel free to write any time, the only comfort I can offer is that people on this site truly “get it” and understand, which has been huge for me as many of my friends and family just can’t understand how difficult this disease is. Take care and thanks for sharing your thoughts with us. We are better together!
March 8, 2019 at 3:44 pm #17453
My PFT tests show a decline every time .I am now at 8 plus liters of o2. I reach a plateau and stay for awhile then I decline some more. So it doesn’t stop it for sure but slowing it, maybe.
As far as my activities, I do crosswords and crytoquotes and jumbles daily and work on putting puzzles together. The puzzles are the most helpful because I am completely engrossed and forget my affliction.
It is not all a downer as I am not in any pain except when I cough and I think about people that are suffering way more than me.
For instance, I still have my arms and legs and I am not deaf and dumb or blind. I do not have cerebral palsy, alzheimers, or dementia. I do not have parkinsons or meningitis.|
I do not have cancer.
I have seen individuals in wheels chairs that cannot lift their heads and are wheeled around and have to be hand fed clothed and bathed.
All in all, feeling sorry for myself is the last thing on my mind. I just take it one day at a time.
When asked how I am, my response is “not as good as I was but not as bad as I could be”.
Thank you for your work in this forum . It helps when I get to express myself and I am sure others can relate.
March 9, 2019 at 8:42 am #17488
Thanks again for writing- your attitude is superb, and actually the post above did give be a bit of a chuckle but in a good way. I appreciate the opportunity to laugh – sometimes laughter is the best medicine!
On a more serious note, I am really glad to hear you aren’t in pain, this is excellent and glad you cans till enjoy some activities that are therapeutic to you (meaning, you focus fully on the activity and not IPF). I find this is the case with my crafting/cards and I am so thankful for this. Perspective is important and I am glad feel sorry for yourself is the last thing on your mind, that is also good to hear as that can swallow us up! I think I might adopt your answer in response to the ‘how are you doing’ question that I always get, and despise. Your answer sums it up nicely, thanks for sharing that!
Enjoy your weekend 🙂
March 6, 2019 at 3:17 pm #17377
Sorry to read about having to sell off the stuff that has been an important part of your life. While there are things that I have had to give up, the latest is bringing in the groceries. Even with my oxygen on my levels drop to the low 70s and my fingers turn blue.
I will not lie and say I do not have my moments when I get down. I try to stay focused on getting my weight down so I can be accepted in the lung transplant program. I go to the gym to ride the bike but I have to bump up the O2 to 5 liters so I stay above 85%.
I have been off the meds for a few weeks. I had initially been on the Esbriet and got really good results until I developed an allergy to it. I OFEV is doing ok, but I do not think it does as well as the Esbriet. I am off of them now while I wait to see if I can qualify for the grant money stuff is so expensive.
I wish you the best.
March 6, 2019 at 8:46 pm #17379
I wish you the very best in getting the transplant. I wasn’t given that option although I am in good health otherwise. It is because of my age.
You are doing the right thing as far as exercise goes but here is what happened to me.
I weighed 165 which was a good weight for me even though my height was 5′ 11.”
They told me that since I required more oxygen to keep up my heart worked harder and burned more calories. Also my appetite is not good. Double trouble. I have on occasion got down to 72 oxygen but my fingers never turned blue. I do not know what that is all about. Anyway, keep a positive attitude and as you have set yourself a goal…Go for it. 🙂
March 8, 2019 at 8:17 am #17409
Just a thought … might another center consider you for transplant? This is of course if it is something you want to pursue as I know not everyone is interested in lung transplantation. The very topic overwhelms me anytime my doctor brings it up, although I know I’ll choose that route when the time comes. Some centers have an age limit despite patients being in good health (which sounds like your experience) and other centers don’t have an age limit. Not sure if you wanted to consider elsewhere? Totally upto you, it was just a thought I had and wanted to share with you.
March 8, 2019 at 3:13 pm #17452
The oldest that I found for transplants is 75. As I am 79 I am past the age of optimism. 🙂
March 9, 2019 at 8:38 am #17487
Thanks for getting back to me Bill, ah I didn’t know that re: a maximum age limit!
I agree with Paula, and love your attitude regarding this … kudos to you 🙂
March 8, 2019 at 8:20 am #17410
Oh my friend, I am so happy to hear from you! I know I have an email to respond to as well, and hope I wasn’t too pesky in checking in … I’m just so glad you responded and let me know how you were doing. Thanks for contributing to this topic thread, even though I know you have so much to focus on right now! Kudos to you for continuing at the gym, I can’t imagine how difficult that is… so inspiring!
Are you back off the Ofev because of the side effects that re-developed? I remember you were having issues with this, and took a break to let them subside. I hope they didn’t return on you.
Take care and I’ll reply to your email today. I have some time to catch up on all outstanding messages!
March 8, 2019 at 8:48 am #17412
I am still waiting on starting the OFEV again; Did not have any bad reactions last time after my break now I just have to wait to apply for the grant.
Still waiting for Boston. Evidently there was a mix up at my doctor down heres office, I think I got it straighten out and I also spoke to Boston transplant team yesterday. So I wait.
Gym today and weigh in at Weight Watchers. Fingers crossed.
March 8, 2019 at 9:50 am #17417
I hope the sun is shining as nicely there as it is here today – this always helps me feel motivated 🙂
Do you know how long it’ll take for the grant to get back to you on funding approval? Hopefully it isn’t too long and I hope your conversation with Boston went well yesterday. Talk to you soon!
March 8, 2019 at 4:56 pm #17458
When I applied last time, I knew in less than 10 minutes. Once I get the information from the accountant then I will call them and then once that is approved I will contact my doctor to have him do a new script. I believe we will be bumping me up to 150mg. I sent you a note regarding Boston.
March 9, 2019 at 8:43 am #17489
So great to hear Paula, I’ll keep my fingers crossed for you that the approval comes just as fast! Was the 150mg the dose you had a harder time with last time, or is that still less? I hope you can tolerate it this time and that the unpleasant side effects don’t return!
I am replying to your note about Boston right now…. 🙂
March 8, 2019 at 5:09 pm #17459
Hi Bill I absolutely LOVE your attitude.
Boston has agreed to consider me. Scares me the prospect but I am going to do what I can.
Time will tell. In the mean time I try to stay upbeat and keep busy. Yes I get winded very easily but it is what it is.
Thank you for your attitude.
March 9, 2019 at 2:23 pm #17496Jean-Michel FourrierParticipant
Dear Bill @ramblingolfer
Thank you a lot for sharing your experience (close to the end) and how you’re dealing with it.
The reading has been very emotional for me, espacially the necessity to stop some activities you love.
The fear of not finding the right words in english prevented me to respond quicker.
I recently explained here how I decided to start playing Golf just afetr my IPF diagnosis in January 2017.
I am still a beginner, 34 after 2 years practice, but passionate, that’s why I understand particularly how much crual was to sell your clubs.
I would like to share with you that I played a 18 holes last afternoon. I was lucky enough to make 1 par which is not so common for me 😉 At this moment, from France, I had a very strong thought for you (my wife didn’t remark some tears) and I dedicated this hole to you. This par was yours Bill.
That’s all I wanted to share with you today. Nothing more but was important for me.
March 9, 2019 at 2:25 pm #17502
@jeanmichelf, how very thoughtful you are! I am sure Bill will appreciate reading this, as I have, thank you so much for sharing! What a wonderful tribute, and thoughtful gesture. Really glad you got to play 18 holes yesterday, and could enjoy some time doing what you love with your wife. Very special post this was Jean-Michel, thank you!
March 14, 2019 at 3:29 pm #17698
I am continually encouraged that so many studies are being done on the behalf of IPF.
I am truly happy for those that will be able to benefit from them.
Unfortunately it is too late for me as the studies last for years and I only have months.
But it puts a smile on my face knowing that one day there will b a cure.
March 14, 2019 at 8:04 pm #17720
Thanks for your kind words Bill, especially amidst your situation. I applaud your courage and bravery, and simply wish studies yielded results faster for all of us to benefit. It is great they are underway, and I understand why they take such time, but I sure wish they didn’t. Continue to write us a long as you can, you’re in my thoughts often!
March 16, 2019 at 8:21 am #17763Gary KitaharaParticipant
Starting from the top, Megan so very good for sharing your life experience with your father. It could be a path, my life might follow. To Bill sorry for the diminished ability to do what you love, not so sure on the age limit, depending on the institution and your comorbidities I would not give up, Johns Hopkins has had success in your age group from what I have read. I do admire your courage. To Paula congrats on getting on the list. Charlene keep up the exercise and good diet.
IPF has been with me since 2016, have been using 8+ liters since 6/17. Currently using 14L to keep sats at 95+, double that to exercise. So, what I am trying to say is with exercise and lots of O2 I am still very active. Several months ago, I got an upper respiratory infection, it has taken until now to finally recover, but not fully. My oxygen needs have increased to the 14L mark. Still, according to the pulmonary tech I’m good with 3L not moving or talking, however when moving need at least 14L + when doing the 6-minute walk. I monitor my O2 levels in real time using a sleep and fitness monitor https://bodimetrics.com/product/o2-vibe/ I have it set to alarm when my sats drop to 88. I’m 60 and as of today I am on a transplant list. I am looking for anyone who is using 10L + amount of oxygen and still leading an active life. I am when out using liquid oxygen, it allows me to have more O2 in a smaller package that the e-tanks. I carry it on by back in a special backpack for convenience. It can also be pulled in a cart. With the ability to increase the amount of oxygen beyond 10L, has kept my energy level up.
March 16, 2019 at 8:28 am #17774
Thanks so much for writing to us, and for your kind words to each of us involved in this topic thread. A very tough topic to discuss, but really important so I am glad you shared a bit more about your story here. I also am very thankful for Megan and her willingness to share her Dad’s story with us!
Kudos to you for your ability to still exercise using that much 02, I can’t imagine the dedication and strength that takes Gary. Wow! It is really important to exercise as much as we can, but it is certainly not an easy task. Thanks for sharing a bit about how the respiratory tract infection impacted you, this just reinforces my actions to stay as healthy as possible – like wearing a mask/gloves in public. Sometimes I think I am overreacting a bit, but then I am reminded about why this is so important.
Glad to hear you have a tool to help monitor your sats and ensure they stay above 88, that is so important for our other organs. Thanks for sharing the link for what you use…
I wish you all the best with your transplant, and hope the wait isn’t too long! Keep us posted on your progress if you wouldn’t mind, and I hope someone connects who is on 10+L of oxygen. @justme0956 (Paula), what are your 02 requirements at? Not sure if you’re up quite that high yet or not but I know you’re rocking it with the exercise despite oxygen.
Take care both of you!
March 16, 2019 at 2:34 pm #17808
When I am going about I am on 3 liters but when I am on the bike at the gym I bump it up to 5 and that helps my levels to get no lower than 87.
Congrats Gary on getting on the list. I am not on the list yet, Boston Mass General is considering me. They were waiting to hear from my health insurance before setting up my first consultation. A 8 hour day where I think I will be meeting any person who has an ist at the end of his name. Cardiologist, nutritionist, etc. My insurance company called me yesterday, actually its the RN who will be the go to person through out the entire process and for a year after the transplant. She told me that the insurance company has given the green light for everything, pre stuff and the transplant. I did not ask what my share is but that is the least of my concerns.
I get winded very easily and I can no longer bring in the groceries. Even when I have my portable on. The last time I did, when I went to switch from my portable to my in house unit, I noticed all of my fingers were blue. Knew that was not good. Put on the house O2, sat down and put on my O2 monitor. I came in at 73. So now, everyone else brings in my food.
Please keep us informed about your progress getting the transplant. Did they give you any idea as to how long it might take? The RN told me she has seen it happen as early 3 week but as long as 9 months. I am dealing with it one step at a time, because I am sure you know, you can get booted at any stage of the consideration process.
March 16, 2019 at 5:52 pm #17815
Thanks so much for replying, and getting back to Gary regarding the oxygen requirements you’re on. Glad you are still managing at 3LPM, with the exception of biking. I couldn’t remember but thought you might be able to relate to Gary based on what he shared earlier…
So glad to hear about the insurance piece Paula, I am still so happy for you about that! Take good care and keep us posted on your progress, I am thinking of you as I know it can be very overwhelming.
Enjoy your evening,
April 1, 2019 at 7:13 am #18045
Thank you for sharing your story with your Father. It was humbling to read your words and your strength in what would have been a tremendously difficult time for you and your loved ones, not to mention everything your Father had to go through. My story with PF is similar to yours in that my Father too was diagnosed and died a little under two years after his first symptoms. I thought I would just quickly reflect on some of the points you raised in case they may be of use to anyone as a patient or caregiver dealing with PF. I know this is a tremendously difficult topic, and everyone is entitled to their own relationship with palliative and end of life care, but personally speaking, being open to the conversation helped me so much more than if I had closed that door and refused to face it.
Palliative Care: I really must stress here that palliative and end of life care, though linked are two completely separate topics and must be approached as such. Please do not feel afraid or upset by the thought of palliative care, it is in fact in the best interest as we found it was a helpful way in which to help cope with symptoms and to remain active. Dad attended a local Hospice once a week for a day visit, they provided lunch and he was able to meet others going through similar journeys of illness. More importantly he had access to a GP each week who helped him talk about his struggles without feeling the pressure of having a loved one near. He was given medication for depression, and they monitored any potential sightings of infection in case he needed to be referred for chest x-rays or further treatments such as antibiotics. Physiotherapists worked with him each week to support him in his determination to stay mobile, they gave him breathing techniques to work on for when he had any exacerbation of breathlessness (which were often), they also provided or found ways in which to provide tools and equipment when it was needed including an electric wheelchair when he was no longer able to find the strength to move himself around. Though not explicitly religious he enjoyed attending the chaplaincy services and bonded with the Reverend as he was teaching himself Latin. Appetite was as well a struggle as he lost a lot of weight during his illness, they gave us advice on adding calories to meals without increasing portion sizes so he felt able to eat meals and get greater benefit. Palliative care really is a brilliant way to keep yourself in tune with your symptoms, to find ways in which to cope and to access a wealth of services that are simply compassionate and empathetic to ensuring you have greater access to things which can improve your Quality of Life. Please, if it is offered I urge you or your loved one to accept it. It will also help open the door on dealing with the next topic which may be a lot more difficult.
End of Life Care: I guess this is what it says on the tin. And unfortunately as we are all aware, PF has no set pattern or triggers that can signpost how soon a person is likely to become unwell to the point of passing. It can happen very suddenly within the space of hours, or it can take days and weeks from the point of knowing a person will die. My Dad was given hours, he died three days later. His one wish was to die at the Hospice that had taken care of him with his Palliative Care, unfortunately this wasn’t to come to pass and I guess I don’t really want to speak to much of his process of death as I feel it may be triggering and upsetting to some. Please, if you feel strong enough then do read up on what there might be to expect so you can ease your fears and better understand what help might be there regarding pain relief and symptom management. If it helps I might be willing to do some research to pop into a post in case it may be of help to someone who is too afraid to ask in person? I can speak of my experience and see what other advice there is to know how to help in this situation. Also it totally depends on your wishes, where you wish to be either at home, the hospice or hospitals. Knowing who to contact and when you feel it is time to contact them and ensuring that any legal medical procedures are in place such as DNACPR orders (Do not resuscitate orders). As I write this I understand how difficult it can be to broach these topics, but if you are willing then don’t hesitate to ask me questions as well and I’ll see what I can do to help bridge the gap of information for you. Each person is different and copes differently with this topic, but if you’re able I would urge you to find a way to bring this conversation about as it will help so much when it comes to the time.
I quickly want to add that it has been wonderful logging on here after a short break (work commitments, new job means I’ve been super busy!) and it’s been lovely to see more people coming together as perfect strangers but all with the same thing in common and to provide support and love in these difficult times for us all. It’s such an encouraging way to see people keep on with their loves with such courage and determination.
April 1, 2019 at 5:50 pm #18069
Couldn’t have said it better myself Katie, I am so glad you read Megan’s post and checked in with how you were doing. It’s nice to hear from you and I hope you’re doing as well as possible!
April 2, 2019 at 7:59 pm #18106
I have to admit that I might want an easier end-of-life exit strategy … so recently I have been thinking about The New York Medical Aid in Dying Act, that is under consideration, which would provide another option, Death with Dignity. https://www.deathwithdignity.org/states/new-york/
This was hard for me to write, but I don’t think I am as brave as the rest of you. In the end I probably would not choose this route, I will probably opt for Hospice, but I needed to admit my thoughts in this safe forum, with people that understand my “chronic sorrow” and that this is something I have been thinking about.
In the mean time I enjoy each day, embrace each day, grateful each day and love my life!!!
Thank you for letting me get this off my ‘chest’.
April 3, 2019 at 7:54 am #18119
Thank you for your bravery @lorraine. It is extremely courageous for you to admit something so personal to you, and whilst there are always complications with such a matter, I am for the Death with Dignity route. There have been some high profile cases here in the UK/EU regarding assisted death, but unfortunately it seems it will be a long time before it comes to pass here. The GMC (General Medical Council) where all Doctor’s are registered recently withdrew their support for the assisted death laws and the legal issue is extremely complex and in fact terrifying for carers if they are at all associated with the death of someone that might not just be a suspected suicide. It’s a very sad and disconcerting time considering there are genuine cases of people who do not wish to surrender their life to such ill health.
Like @Charlene I need to do some more reading as I’ve been recently interested in the statistics of how/where a person passes from any lung disease (non-cancer). I find it upsetting that there is a distinct difference in care and urgency with those living with cancerous terminal illnesses and those living with non-cancerous terminal illnesses. The discrepancy is appalling to me and has been well documented in research, I hope to champion that this changes and focus is equally put on those living with progressive and terminal illnesses that are non cancerous and should still be looked at with the same importance.
If it would be of use to you, and if it is available then I would recommend reading a book called Grief Works by Julia Samuel. She is a well established grief counselor and documents some of the people she has dealt with that have faced grief and bereavement from all walks of life. It’s an inspiring read and I find it useful in encouraging an open conversation about death.
On a similar vein, in the UK we have something called the Death Cafe as well. I’m not sure if something similar exists in people’s local communities? It’s an idea where people of all walks of life come together to sit down and specifically talk about death in the hope of breaking the taboo. Anyone can arrange one and I believe they give guidance and support information on how to do so > https://deathcafe.com/how/
There’s also a charity in the UK called Dying Matters that work with hospitals and hospices to improve EOL services. They have an awareness week coming up that will encourage more conversation about EOL care and also encourage people to hold their own events in their community > https://www.dyingmatters.org/AwarenessWeek
I currently work in a hospital and often within the Emergency Department area. I’m proud to say they have their own systems in place called the SWAN model which you can read a little about here.
They have compassionate staff dedicated to working with relatives and carers facing EOL care (whether expected or not) as well as specially adapted relative/viewing rooms for after a death has occurred. I would suggest if you are at all worried about where you end up should the time come, then face your fears a little and find out about what services are available at your local Hospice/Hospitals. They can best advise you on what might happen, where you might be and what you can do to prepare in advance. Hopefully they can also give advice on how they will treat you/your loved one. Many of our hospitals have dedicated teams for EOL care as well as volunteers to provide support to loved ones, I’m sure by networking and communicating a little it will be of good use on who to contact for when/if the time comes.
April 3, 2019 at 8:16 am #18135
Thank you so much for such a thorough and thoughtful response to Lorraine, Katie! I appreciated hearing your thoughts on the topic. As a therapist that often walks alongside children through their experience of death/loss/grief; I think I’d be one of the patrons in the cafe you mentioned who wants to talk about death and break the taboo. I’d go so far as to say I’d even do so now, despite having a terminal illness. I thought my IPF diagnosis might make me shy away from wanting to talk about death, and it did at first, but now I am open to talking about it and helping people through it again. I think as long as I keep a distance between helping people and talking about my own death, I’d be okay. I work with a provincial bereavement group here, and I’m leading a conference on the topic of Grief and Trauma in October. I’m currently in the process of recruiting speakers for it, so its interesting this has been brought up for discussion…
Thanks again for your thoughtful responses and kind words for Lorraine. I too think she is very brave!
April 3, 2019 at 8:39 am #18140
Wow Charlene your job sounds really interesting! When I studied Psychology, the whole grief aspect really interested me and one of my colleagues whom I work with is also training to be a counselor primarily dealing with bereavement patients. It’s incredible the different techniques and models that can be encountered when dealing with this area, and of how much it can suddenly make sense when you’re actively in the middle of your own grief bubble.
For the most part in my prior research it seems most people living with PF themselves feel encouraged to want to speak about EOL, but feel fear of upsetting loved ones. There were however a few that couldn’t even dare to broach the topic of death so it just shows how personable it is to each individual. Some had in fact already had relatives pass from the same disease which showed some acceptance, but most were fortunate to have been diagnosed and treated earlier thanks to their awareness and were far healthier on the trajectory of illness than you might expect. I haven’t yet had chance to compare it to those on the transplant list which would be interesting to me to see how much that compares with the acceptance of facing death.
Unfortunately, it seems there has been a huge change across the counties in the UK as to how well a person is treated in EOL care and this is usually down to people feeling unsure how to accept PF (and most lung diseases) as a terminal illness which means they tend to go down the same distressing routes of being admitted via emergency departments which aren’t usually prepped to dealing with EOL care. Hopefully all the above will change that over time and more people will get the right resources to go about a good death either at home or in hospice care, or at least a peaceful appropriate place within a hospital.
April 5, 2019 at 1:36 pm #18208
Hello Kate, I can answer your question on how transplant patients view death. At least I can answer for myself. When I was first diagnosed I didn’t really think about it. When I got increasingly worse that is when it hit me. From then on it was a constant thought especially when I couldn’t sleep at night. There were many restless nights. My thoughts on death were two fold; one where I thought I was gonna die and the other thought where I knew I was going to receive a transplant and live. I am a positive and optimistic person but almost every night I would think about death and I know I was not prepared for this or was willing to accept this fate. I hope I helped you a little bit on how as a transplant patient I viewed death. Mark
April 9, 2019 at 6:56 pm #18272
Thanks for sharing this Mark, it’s super helpful to know how it might compare. How did you feel post transplant as well? I guess it must be extremely difficult because there are still so many risks to your health, but also knowing this is a clean slate in a lot of circumstances. It would really interest me to interview transplant patients before and after to compare feelings and emotions to see how/if it compares to those aren’t able to receive transplants. But also to see the journey of emotions on the transplant journey.
April 9, 2019 at 7:26 pm #18275
The way I feel post transplant is sort of how I felt before my ipf set in. I kinda felt normal. My surgery was very successful with no complications, I was extubated shortly after completion of surgery but I didn’t come out of sedation for two days. My icu stay was two days then onto the wonderful transplant floor at the Cleveland clinic. They really take good care of you. I have had basically no major complications since the surgery and my mental outlook is very positive, I don’t get anxious or dwell on what if’s. I had a survivors guilt when I was in the hospital but it was directed at others who weren’t doing as well as me. I asked the question, why me and not them. There are days when the energy is not there; usually after 5-6 days of really good workouts or when I don’t get enough sleep. Sleep is my downfall, I don’t sleep well about 30% of the time and this negatively effects my day; Less energy, muscles feel like they are stiff, and overall feeling like garbage. On these days a longer nap usually will rectify this situation but I like to workout in the morning so the sleeping problem disrupts my day. If you are ever able to interview transplant patients I think you will get answers from one end of the spectrum to the other. I work hard to stay healthy and sometimes that is not good enough because the laws of nature can and will prevail. I feel blessed and grateful to my donor and his family and think we were such a close match and that is a big reason for my so far successful outcome. Thank you Kate for listening. Mark
April 3, 2019 at 9:11 pm #18160
Hi Charlene and Katie:
Thank you for your kind words and support! Also for all the amazing resources, experiences and ideas. I am digesting all you have shared and will read and reread what both of you have written — a few times I am sure. I am really lucky to have stumbled upon this forum. Also, I plan to watch the movie Charlene recommended and to read the book Katie mentioned.
I will certainly follow how the Physician-assisted suicide plays out in NY. And it is understandable that there are flaws in the laws that have been passed to date considering all of the challenges, as pointed out by Katie.
And yes, great minds think alike … That said I am planning to contact a nearby hospice residence. I recently read an article about that hospice and they said, “When would it be appropriate to consider contacting hospice? If the day arrives when you hear the words “terminally ill,” that might be when you should consider contacting us.” Getting these types of things in order will give me comfort, as they have been hanging over my head and heart, which is why I need to step-up.
This forum has become very important to me. I have learned a lot. Able to vent and take advantage of resources. For example, I am happy to report that I had my first k laser treatment today and will complete week 1 on Friday.
Thank you so much,
April 4, 2019 at 6:53 am #18161
Hello Lorraine, I’m glad we can be of some sort of help but also it has helped you feel a bit more positive about speaking up in this area as I can understand how frightening and isolating it can become. This forum is a wonderful place, and as Charlene has stressed, is an accepting place so it’s great to feel open to talk about our opinions without feeling judgement or prejudice. When you approach the Hospice, feel open to talk also about the Palliative care side as I mentioned above. My Father had a relationship with them for just under a year before his passing and they really helped in his symptom management and to get the most out of his quality of life. I think it also helps you feel more able to talk openly about end of life care, and more importantly learn about what to recognise in yourself if you’re frightened of illness deteriorating.
We have another charity here in the UK that I forgot to mention called Marie Curie. It was named after a nurse who championed the need for support during end of life care, and more importantly they acknowledge and treat patients with a variety of illnesses (we have another huge charity here that unfortunately only invests most of its time into cancer patients). It may not cover your direct area, but hopefully the information they provide can give you some topics to ask and talk about when approaching your local support care to see areas where they might be able to match similar care regarding palliative and end of life needs.
Here’s the link > https://www.mariecurie.org.uk/help
April 2, 2019 at 8:08 pm #18111
Thank you for your courage in sharing this, I am glad you felt the forums were a safe place to voice things you’ve been thinking about. I think it takes a lot of bravery to even let folks know you’re looking into the Death with Dignity Act, whether or not you proceed with it. Please know this is a place free of judgement, and others (maybe not on our forum, or maybe so….) out there must be advocating for this who are in similar positions as we are, otherwise I would imagine an Act like this wouldn’t be in development 🙂
On the contrary of your thinking, I believe you are equally as brave as many of us. While I don’t give much thought to dying myself, although I am open to talking about it, I’ve not been able to look into physician-assisted suicide laws so I could argue you are braver than I am! It isn’t because I don’t believe in them… which is a story for a whole other day… I just haven’t gotten there mentally yet. Thank you for sharing that you have been thinking about this, it gives me comfort to know someone I can turn to if I do want to think more about this with someone, or discuss it. It helps me to know I won’t be alone when and if I consider this!
Glad you enjoy each and every day; that is important although easier said than done isn’t it? Are you a movie fan? This past weekend when I was feeling a bit low I watched a new Netflix movie called “Miracles from Heaven”. While I am not really a religious person, and this movie is heavily weighted on religion – it is based on a true story, and I gained a lot of hope from this little girl’s perspective. If you need a night to curl up with some snacks and a good movie, I highly recommend it. It’s hard to describe what it did for me, but I feel hopeful after watching it and think we all deserve to feel this way!
Talk to you soon, thank you for being brave!
April 4, 2019 at 4:13 pm #18186
Thank you for the additional tips @katiebagshawe — specifically to discuss palliative care, and all that it includes, when I meetup with hospice staff. I will find out if we have something like Marie Curie charity here in NYC. In addition to going to the World Trade Center-9/11 Clinic, I just started seeing a doctor at the Mt Sinai National Jewish Health Respiratory Institute. At some point I will meet with their team regarding palliative care and other support and resources. With appreciation, Lorraine
April 5, 2019 at 1:08 pm #18207
I am posting this verbatim, for my friend Bill ( @ramblingolfer ) who was having trouble trying to get this post to go live:
Off on another adventure.
I thought I would bring you up to date as to my progress.
About three weeks ago I went to emergency because my coughing would not stop.
My oxygen was low as it normally is when I cough.
The hospital declared war on my lungs in that they gave me high flow oxygen in the form of CPAP and oxygen mask . They also bombarded me with bloods tests and medications including prednisone of which I am at the end of that treatment being weaned off of it tomorrow. After three days and nights of sleep deprivation (in and out of my room) and lousy hospital food (I think they do that so you do not want to stay) they sent me home because there was no change in my breathing except for reduced coughing and they could do no more.
I made a follow up appointment with my doctor . He suggested I sign up for hospice which I did.
Now hospice sounds scary but really isn’t as the end of life can be a ways down the road and they are there to ease us through the process and to make us and our family as comfortable as they can.
The only observations I have is that it seems that the treatments I have received and and the pulmonary rehab I went through were primarily designed for COPD and the nurses and rehab specialists are not trained for IPF.
I say this because twice I was told by at two different pulmonologist told me to breath through my mouth and nose and not just the nose. COPD trained personnel tell you to breath through your nose with pursed lips.
Since I was able to increase my oxygen flow to 9 and 1/2 liters my coughing spells have been reduced substantially. Bad news, my machine is maxed out and nothing except liquid oxygen machines would work and they do not have any companies in our area that offers them. So as my lungs worsen my demand for oxygen increases. I am ok for now.
At the beginning I said this is just another adventure in my life but be reassured it is not a ride at Disney Land. 🙂
This is Bill, over and still not out.
P.S For those military connected. Suicide is a crime and may result in benefits denied to spouses and dishonorable discharge.
April 5, 2019 at 1:40 pm #18209
Thank you Charlene.|You do good work.
April 7, 2019 at 11:34 pm #18243
Thanks for posting on behalf of Bill! It certainly sounds like he’s been through it these past few weeks and I’ve heard that the CPAP machines can be quite distressing. Has anyone had this as it seems to be common practice when admitted to A&E with low oxygen levels? Also, on the same note, how did people go about explaining their oxygen needs when being admitted to A&E as to the untrained Doctor, they can be a terrifying prospect to deal with and can easily often forget that your normal is not what they are used to dealing with or striving for. I also heartily agree that a lot of teaching to patients with ILD is taken and adopted from COPD learning which doesn’t always fit the bill. A lot of feedback here in the UK is that the exercise portion of pulmonary rehab is helpful but the educational aspect is pretty pointless. Sending my love to you Bill, and I hope all is getting better. I can’t believe the struggles you have with getting hold of liquid oxygen but sadly it was also an issue here in certain regions. Again, ridiculous considering the tremendous impact it can have on quality of life.
April 8, 2019 at 2:15 pm #18257
Thank you Katie for your kind words.
I seem to be stable right now and the only problem I have controlling is my nose clogging up. If I cough and have nose problems I turn to Dayquill. If I do not have the cough I have been using Sudafed, My cough has subsided substantially since I turned my oxygen up a notch which is high as I can go at 9 liters. Both seem to work. I have tried Musinex which doesn’t seem to help. I am not totally sure but it seems when I take Advil my breathing is a little better. I only take them on an as needed basis. I am doing everything I can to stay away from Morphine because of the constipation problem.
I only post these things so that others may benefit.
April 9, 2019 at 7:11 pm #18273
Nice to hear from you Bill and that things seem positive for you considering everything you’ve recently been through. My Dad struggled a lot with the cough also, it was very dry and if it got bad it really triggered his exacerbation. Have you tried eucalyptus oil? That’s brilliant, very similar to menthol in that it’s very good at helping your breathing feel a bit clearer. I always have a little bottle handy when I’m under the weather and feeling bunged up. Either a few drops on a tissue/handkerchief or putting some in some hot water to inhale helps with clearing the nose out a bit, that or a few drops when you’re having a bath. Did you struggle with your nose feeling dry because of your oxygen being so high? Dad always had really dry skin and I knew that was uncomfortable for him, I recall the Nurse recommending water based gels like KY Jelly around the rim of the nose to ease that awful dry feeling. My Dad used a little morphine and his symptoms were quite low actually, have you tried it before? That worked wonders with his cough but alas can make you feel quite lethargic which isn’t helpful when low oxygen can already make you feel that way also.
April 10, 2019 at 10:51 am #18313
Hello Kate and Bill, PF news thanks both of you for your compassion and sharing your experiences with your forum. The communication both of you exhibit is what makes a successful forum, sincerely Mark
April 10, 2019 at 1:01 pm #18316
Thank you Mark.
My wife tried to use eucalyptus and peppermint treatment and I didn’t use it but once and then not not much so I will try again with a little more gusto to see if it works better than my current treatments.
Yes I do struggle with my nose being dry. I use a tube of gel that has aloe in it. It is calle AYR saline and nasal gel.
Yes I have tried the morphine but it constipated me so bad I had to quit it.
My hospice nurse came today and recommended I try it with a lower dosage and take it with a laxative. So what do I have to lose. I will give it a shot also. One more note I had mentioned in another blog that if I am so far along with the disease why bother taking the perfenidone (Esbriet) as it just prolongs the inevitable when I am at a point where every movement creates low oxygen. Well the hospice worker said that the doctor said I should quit taking it. I am calling my pulmonologist to get his opinion.
I will let you know how it goes with eucalyptus.
April 10, 2019 at 11:02 pm #18325
Glad to hear you’ve tried a variety of options, and I’m sorry to hear that most of them seem to be so unsuccessful. Unfortunately they were the only options we had available to us, with the exception of when Dad was admitted and he was using a humidifier alongside his oxygen. I’ve never seen this available in the community. Have you seen or heard if this might be available to you?
I would suggest perhaps contacting oxygen providers in your local area to see what they can offer and maybe even be a bit pushy with them. It was always available here and we were lucky to have an excellent driver who went above and beyond but in some regions of the UK you really have to put your foot down about it being delivered. Just like Gary we had a big tank delivered twice a week that we would refill in two to three flasks that would last an exceptionally long time comparing them to the bog standard air flow. It gave Dad such a lease of life to keep going knowing he had more oxygen to fall back on. I’ve spotted a few companies advocating for improvements in oxygen supply to those needing it and being innovative with new technology. I cannot for the life of me remember the name of the company who contacted me a few years back so I will look into them and get back to you.
As for the medication aspect, have you talked with your Doctor about how you feel? Here in the NHS the drugs for PF are only available to people that lie within certain percentages on their FVC results. If you’re too well or too sick, the drug won’t be prescribed on the NHS which, quite naturally, has caused a lot of outrage at being restricted. My Dad was never able to take any as he was too poorly. I would suggest chatting with your Doctor and asking him to do some investigating into research available to see where the meds can actually hinder your disease if it progresses past the point you feel you can cope. Sending my love to you.
- This reply was modified 1 year, 1 month ago by Charlene Marshall. Reason: tagging
April 14, 2019 at 7:38 pm #18411
Hello Bill, thank you for sharing your story. Mark
April 10, 2019 at 1:47 pm #18318Gary KitaharaParticipant
I’m new to the forum and have been reading about your struggles. I don’t understand the limit of oxygen at 9.5 lpm, I have been using dual 10 lpm concentrators for a while as my needs are 14 to 16 lpm. Are you using a humidifier with your concentrator? The saline spray and gel do help, if you have not used a non-rebreather mask you may want to inquire. I use it at night to sleep ( this allows me to reduce my O2 from 14 to 8 without dropping my sats to help with the dryness) and to exercises I am using the non-rebreather mask to get more O2 as I require 25-30 lpm using 4 concentrators.
Out and about I am using Companion 1000T 1-15lpm liquid in a backpack, this give me 50 to 60 minutes per tank, have 5 companion 1000T. I refill from 2-46 liter liquid tanks that I keep in the van. This allows me to be out and still active.
I wish you the best, keep spirits up,
April 10, 2019 at 6:26 pm #18319
Gary, ( @gary-kitahara )
wow! I will definitely Check all this out.What liquid were you talking about? I did try putting water with the concentrator but it cut the flow by 2 liters.
I will get back to you and let you known what I found out. If you talking about liquid oxygen there is no one in our area that services it. I know you can get more flow with the liquid oxygen. But your suggestions definitely excites me. Thanks.
- This reply was modified 1 year, 1 month ago by Charlene Marshall. Reason: tagging
April 13, 2019 at 1:41 pm #18375
It looks like I cannot use any of your suggestions as there is no medical liquid oxygen for miles and miles and the dual concentrators to still only gives me 10 liters.
Thanks for your input.
April 12, 2019 at 7:41 pm #18360Jan RicheParticipant
I was sorry to hear about your struggles, makes my journey sound like a walk in the park. I am 76 (77 next month) and my O2 requirement has just gone to 7-9 liters depending, so I don’t do much that requires moving, which means that I don’t cook any more. I miss that a lot but didn’t have to sell my pots and pans.
Luckily I love reading and play a lot of word games on my iPad. Most of the time I am not thinking about my IPF. Living in Arizona blesses me with a lot of good weather. My bedroom french doors open onto my patio and my husband brings me coffee and breakfast and opens them. The feeling of being outside starts my day well.
But like you, I am not able to participate in my former life. I missed church and my church group for the last two weeks. I may be at the point where I’m going to have to give them up. I believe my IPF is progressing fairly fast now. I am also wondering if I should give up my Esbriet, does another month living with these deficits make it worthwhile? Just a thought.
I am not afraid of dying, just the process to get there. I really appreciated Megan’s post. It was the first description I had read about the process. It gives me hope that it might not be too hard. I read a book about brain studies of deep meditation and it talks about the brain activity slowing down leading to an experience where the meditator feels a growing oneness with the universe. I’ve been hoping it could be like that. Sounds peaceful.
April 13, 2019 at 1:33 pm #18374
Hi Jan ( @janriche )
It is amazing how our symptoms and thought processes are so much alike. From the liters required to do daily routines and the closeness of our age (79.,80 on July 4th if I make it). I also do not dwell on my IPF. For instance, my day consist of crossword puzzles, crytoquotes and jumbles. I watch some TV but most are nor worth it. I spend my days trying to adjust medications to get consistent with the results. From clogging nose to digestive problems. I am slowly figuring it out.
I smiled when you said you were not afraid of death but all of those things that come before it. That is me to a tee. I also am to a point where any exertion results in no energy and lower o2. I also loved to cook and adjust recipes to taste better. I became famous for my chili and creamed beef on toast. ( the military nicked named it SOS,Stuff? on a shingle).
My wife and care taker is learning my recipes. She waits on me hand and foot.
You might want download the universal puzzle from the internet. I believe my mind has been kept sharp because of the brain exercises.
When you wrote that talking about giving up Esbriet I again smiled as in another response I said the same thing. What’s the point. Well, since then my hospice doctor recommended I quit them so I talked to my primary care doctor and he said that they symptomatically don’t do much. So quit them. I have a call in to my pulmonary doctor but I am sure he will say the same thing. I will finish my last bottle and then won’t order anymore. I teased my doctor by saying, “isn’t that a form of giving up”?
Thanks for the response. Maybe the man upstairs will introduce us. 🙂
June 1, 2019 at 8:51 pm #19576MarianneParticipant
Megan ( @megan-zetter ) –
Thanks for telling us about your Dad. Being a caregiver is very hard. I did this for my mom years ago for a few months before she passed away with lung cancer. Now I find myself recently diagnosed with IPF. I am in the early stages of the disease. I hope when my time comes I can go as peacefully as your Dad did. I also don’t want to lose my independence and rely on others for daily living. Hopefully, when the time comes I will gracefully accept changes as they happen. I have a few friends with chronic illnesses who used hospice care. I do not personally know anyone where I live with IPF. I had made friends here who understand the PF journey. Thanks for sharing your Dad’s PF journey as well as your role as a primary caregiver for him. I am sure you brought much joy to his final months.
- This reply was modified 1 year ago by Charlene Marshall. Reason: tagging
October 24, 2019 at 2:52 pm #21747ScottParticipant
Greetings. I am new to this forum. A little background. I am 73 yrs old and was formally diagnosed with IPF two years ago. However, the symptoms of shortness of breath had been going on for some time. I retired twenty years ago and my wife and I have spent the last twenty summers living at 10,000 ft in the central Colorado mountains. We had been very active doing all the things you do there including camping, 4-wheeling etc. About five years ago I noticed that I would become short of breath more and more frequently, as time when on. I finally bought an oximeter and realized I was in trouble. After various tests, including a biopsy, it was determined that I have IPF. It was clear that I could no longer be at that altitude. We now spend all of our time in western Colorado at about 5,000 ft.
Living with IPF is and up and down process. I can’t do the things I used to enjoy doing. I am now reading a lot more. And for those folks who love to read but are faced with the effort of physically acquiring reading materials, I urge you to try ebooks. Never have to leave your chair! Other than reading, keeping mentally active and engaged in things that interest me, is really important. Hobbies are essential in my mind. The other important factor is a supportive wife and family. After fifty-one years of marriage, I now realize how truly fortunate I am. My wife is very healthy and loves to hike and fish, and still does. She is sympathetic to my condition but pushes me to stay as active as possible.
Treatment wise, I started taking Ofev after the biopsy. After a year and a half of unpleasant side effects, I just started taking Esbriet. I am hoping it does, what it is supposed to do, without the side effects. I recently came down with a bad bronchial infection. It is the second one that I have had in a year. In both cases, after a week or so of serious coughing (no temperature), I started on a Azithomycin 5 day dose pack. The condition gradually faded after about three weeks. I sense that my breathing is slightly worse now however. A PFT will probably confirm this.
The reality of this condition was shocking to me at first. I gradually came to grips with the fact that the end is not that far away. I have moments of darkness, but they pass. There is a kind of relief that I now have some sense of my eventual passing. Many of the above posts have mentioned this sense. Again, having a supportive wife and family is the most important contribution to making this ‘trip’ endurable. It is all about taking life, as it comes, day at a time.
- This reply was modified 7 months, 1 week ago by Scott.
October 24, 2019 at 6:10 pm #21750
Hello Scott, thank you for honest experience with this horrible disease. Writing about our eventual outcome is never easy. Please stay as active as you can. Sounds like you have a wonderful partner for the past 50+ years. Congrats on this accomplishment. Take care and check in with us. Mark
October 25, 2019 at 6:48 am #21751john stylesParticipant
HI Scott, you may want to try going to sea level, I live in Florida and and when I go to our home in North Carolina at 3000 feet I have to use oxygen almost all the time. When I sleep in Florida at about 100 feet elevation my stats stay at 90 but at 3000 feet they go down to 86 so I sleep with oxygen at night in the mountains. When I sit in a chair in Florida I am at 90 to 92 but at 3000 feet I am 90 eventually decreasing to 86. Then we can say to ourselves whats the point, this is a disease where we slowly deteriorate. I am still trying although I admit sometimes I get discouraged. Do not give up. I have been trying and doing laser for 9 months and that is a whole story unto itself.
October 25, 2019 at 1:34 pm #21753ScottParticipant
John, ( @caneelbay1 )
Last year we went to the California coast twice to get a feel for the lower altitude. Yes, I could breath easier but otherwise, I really did not feel all that much better. We have talked about moving to a lower altitude. There are a couple of reasons why we rejected the idea. First, we have lived here for twelve years and have established a network of friends and activities we (particularly my wife) really enjoy. Second, we have family living near by. And, for me, a strong reason centers on my love of the mountains of Colorado. We have lived in a variety of places in the US and overseas. I worked in Manhattan for seven years. We have always come back to this wonderful area.
Beyond the obvious hassle factor of relocating, I would just be delaying the inevitable; and given the random/sudden nature of IPF, it would probably not change the outcome or its arrival timing. Another consideration is the effort of maintaining two residences as you are. We did that for the twenty years of summering in the high mountains. I am just not up to doing that any longer. That said, we plan on taking several trips to lower altitude during the winters, while I still can, to ‘give it a rest’. Thanks for your thoughts.
I wanted to mention to the group that I have been using a new rechargeable wireless pulse oximeter made iheathlabs.com. It allows me to upload my readings to my iphone and on to my computer to allow me to track them, over time.
March 31, 2020 at 9:23 am #23769Sarv PunjParticipant
It’s really enlightening how patiently you dealt with your late dad’s illness during his last five months. I have read the thread partially though but seem to have gained a lot. I am 81 and my wife is in late 77 yrs and is suffering from this life threatening IPF. I admire your courage too to have gone through the pain of losing your dad so dear to you. I am passing through a similar phase. My wife has been suffering for the last about 8 long yrs but lately her condition has deteriorated a lot. She had been very active throughout her life but this slow declined seems to have made her very slow, silent and despondent. There is a lot to learn from you. I must thank you for your very explicit account of your dad. Stay blessed.
- This reply was modified 2 months ago by Charlene Marshall. Reason: tagging
March 31, 2020 at 5:08 pm #23779David OtaParticipant
Thank You Thank You Thank You
Megan, ( @megan-zetter ) for sharing your father’s story, for stepping up as a care giver and so eloquently writing of something so personal. When I was 1st diagnosed with IPF in 2010 or so, I searched for anything on what the end looked like. There was nothing available, and the unknown is quite a scary abyss to peer into.
Bill, ( @ramblingolfer ) for sharing your adventure, one of many I’m sure. For going out fighting. I was diagnosed around the same time and could not get on the pirfenidone study (too healthy) but did make the OFEV study. I lost my fight with IPF in 2016, but I did get to poke it in the eye on the way out with a new set of lungs.
Mark, for sharing your story and for moderating this forum.
Charlene, for being you.
I am Humbled and in Awe of you all.
Again thank you for sharing, I guarantee your time and effort are not wasted writing your thoughts and experiences.
- This reply was modified 2 months ago by Charlene Marshall. Reason: tagging
March 31, 2020 at 6:00 pm #23781
Hello David, thank you for your kind words. Moderating this forum is easy because our members well informed. What a wonderful experience it is to hear everyone’s story. We are all almost the same but yet we are experience this awful disease differently. Take care and stay safe! Mark
April 2, 2020 at 2:33 pm #23808
Thank you so much for your kind words – they really mean a lot to all of us! We consider ourselves (Mark and I) to lucky to be able to interact with such a special community on this platform. Hearing that people are benefitting from it means the world to us. We so appreciate you and your contributions, thank you for brightening my day with your words. Be well! Charlene.
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