Dying from IPFPosted by megan-zetter on January 24, 2019 at 11:50 am
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.
MemberJanuary 25, 2019 at 9:44 am
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.
MemberMarch 9, 2019 at 11:28 am
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.
MemberMarch 9, 2019 at 2:28 pm
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 🙂
MemberJanuary 25, 2019 at 12:44 pm
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
MemberJanuary 25, 2019 at 4:47 pm
Thank you for sharing your story, I appreciate your insight.
MemberJanuary 26, 2019 at 1:39 pm
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.
MemberJanuary 26, 2019 at 3:11 pm
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.
MemberJanuary 26, 2019 at 2:24 pm
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.
MemberJanuary 26, 2019 at 3:10 pm
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.
MemberJanuary 27, 2019 at 9:05 am
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: [email protected] (that goes for anyone reading this post, please email me with questions)
MemberJanuary 27, 2019 at 9:15 am
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 🙂
MemberJanuary 27, 2019 at 10:41 am
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!!
MemberJanuary 27, 2019 at 7:50 pm
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.
MemberJanuary 29, 2019 at 4:46 pm
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?
MemberJanuary 30, 2019 at 7:47 am
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 🙂
MemberJanuary 29, 2019 at 10:04 pm
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]
MemberJanuary 30, 2019 at 7:50 am
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!
MemberFebruary 3, 2019 at 7:47 pm
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.
MemberFebruary 3, 2019 at 9:05 pm
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.
MemberFebruary 4, 2019 at 9:56 am
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!
MemberFebruary 4, 2019 at 9:52 am
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,
MemberFebruary 2, 2019 at 10:08 am
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.
MemberFebruary 3, 2019 at 6:53 pm
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.
MemberFebruary 4, 2019 at 8:14 pm
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.
MemberFebruary 10, 2019 at 3:02 pm
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.
MemberFebruary 10, 2019 at 5:01 am
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
MemberFebruary 10, 2019 at 2:59 pm
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.
MemberFebruary 10, 2019 at 9:08 pm
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!
MemberFebruary 10, 2019 at 9:04 pm
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.
MemberFebruary 13, 2019 at 9:01 am
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.
MemberFebruary 13, 2019 at 9:02 am
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,
MemberFebruary 13, 2019 at 7:57 pm
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.
MemberFebruary 14, 2019 at 5:19 pm
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.
MemberFebruary 14, 2019 at 7:44 pm
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.
MemberFebruary 21, 2019 at 8:18 pm
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.
MemberFebruary 22, 2019 at 9:24 am
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.
MemberMarch 6, 2019 at 2:49 pm
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.
MemberMarch 6, 2019 at 3:00 pm
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?
MemberMarch 8, 2019 at 8:15 am
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!
MemberMarch 8, 2019 at 3:44 pm
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.
MemberMarch 9, 2019 at 8:42 am
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 🙂
MemberMarch 6, 2019 at 3:17 pm
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.
MemberMarch 6, 2019 at 8:46 pm
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. 🙂
MemberMarch 8, 2019 at 8:17 am
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.
MemberMarch 8, 2019 at 3:13 pm
The oldest that I found for transplants is 75. As I am 79 I am past the age of optimism. 🙂
MemberMarch 9, 2019 at 8:38 am
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 🙂
MemberMarch 8, 2019 at 8:20 am
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!
MemberMarch 8, 2019 at 8:48 am
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.
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