May 24, 2019 at 1:56 am #19295ERICParticipant
can someone talk about the end days? I was diagnosed in Jan 2019 but I’ve had started noticing it for over a year and a half.
May 24, 2019 at 8:43 am #19296
This is a topic I am also interested in. I was diagnosed in April 2019. I am 63 years old. How old are you?
May 24, 2019 at 2:23 pm #19299David OtaParticipant
This is probably not the answer you were looking for, but I can speak on my PF end days.
Since I am writing this, clearly I am not ‘ended’ :), but my IPF is gone. A short bio: I was diagnosed in 2010 at the age of 49 with IPF. There was no ofev or esbriet, they were still trials. The mean time to failure in 2010 was 3-5 years, I remember 50% fail at 3 years, 70% fail by 5 years. Quite upsetting.
By 2015, I was lugging O2 everywhere, I had run O2 throughout my house and could not climb 13 stairs to my second floor without stopping twice to rest. The coughing had gotten to the point it was difficult to hold a conversation, I would cough so hard I would vomit, probably on a weekly basis. I had thrown out my back several times just coughing. I would get irritated with myself if I had to go up and down the stairs 3 times in one day. I was not in pain, but I had really stopped going out to the grocery store or anywhere else, lugging the O2 was too much of a pain to really do it with out a good reason.
I could not get through airports without a wheelchair and someone to push me, or I walked REALLY SLOW.
I could not complete the 6 minute walk test, O2 sats dropped too low in less that 60 secs. My concentrator max’d out at 5 lpm.
I was not in any real pain, just that my life had slowly been taken away, and I did not see how limited I was at the end.
I had a lung transplant work up in Jan of 2016, 5 1/2 years after being diagnosed at Dignity/St Joe’s in Phoenix. The Pulmonologist wanted to get me listed as soon as I finished all the tests. Denial is more than just a river, I argued with her that I was too healthy for lung transplant. My wife corrected me. When I got the call for lungs, I was living in a condo across the street from the hospital. I was healthy enough to shower by myself, and drag my O2 across the street to the hospital. That was almost 3 years ago. The end of my IPF and the beginning of a whole new set or health horrors. I hope this helps,
May 24, 2019 at 5:23 pm #19303
David Ota, What do you mean by another set of health horrors.
May 24, 2019 at 5:48 pm #19307
Thanks so much for bringing this topic forward and sharing a bit of your transplant story David. It was informative for me, and I am confident others will benefit from reading it as well. As difficult of a topic as it might be, addressing end-of-life issues, or end-stage PF is important to many of us. I truly believe knowledge is power.
A post a few months ago on this topic really resonated with folks, it was by a lovely woman named Megan. You can find her post here, it details her Dad’s final days with this lung disease: https://pulmonaryfibrosisnews.com/forums/forums/topic/dying-from-ipf/
Let me know if this helps with your inquiry at all. I know it is tough to read, but it might be informative.
May 24, 2019 at 6:07 pm #19318
Charlene, I read the post. This helps to know that they can try to keep you comfortable. It helps give you hope. It would be nice if caregivers thats patients had a good experience would share with all of us to help ease our minds. I do not know how you deal with this at such a young age. You must be a very strong person. I admire you for that. And I appreciate all you do on this site.
May 24, 2019 at 6:08 pm #19319
I just turned 70 and was hit with the bad news originally in Manila Oct. 2016. In May 2018 back in USA official diagnosis but Oct 2016 is when it started.
After finding this great forum, I started reading everything I could mainly because western medicine is currently letting us down with two choices, however, there are several promising trials in various stages. There again I knew if the trials work they are still a long way from approval but other countries may be first to green light them.
Only saying all that because I know what denial looks like and of course, wrestle with it some but the flip side of that is to find ways that help us sustain a long time. Many with IPF will get PAH and that may cause a heart attack. I would rather that happen then to go through the end time weakness, disorientation and unable to do anything and be a constant burden and possibly even a treat to my family.
So researching (ongoing) I have started many things that all help. Not in any specific order but important to know when and how to take these: diet, autophagy (intermittent fasting), water, light to moderate exercise, hot lemon/lime water 1st thing every morning, good B vitamin complex, probably D3 with K2-m7, Serrapeptase, Nattokinase, class 4 laser treatments, astragalus, and recently Wei Laboratories – because I returned to the Philippines and could not find a laser (very expensive but only needed a couple of months and then a maintenance 2 or 3 x per year is my understanding).
So in order to not change this thread I just briefly mentioned these and anyone is welcome to PM me or friend me here.
Hope this helps some…
May 24, 2019 at 7:58 pm #19324
Steve, Are your doctors ok with you taking these products? What do serrapeptase, Nattokinase and astragalus help with? Some people say the Wei products do not work,and they are very expensive,but do you feel they are working for you.
May 24, 2019 at 8:21 pm #19325
The doctors are aware of some things I do but they have no recommendation for most of the stuff outside of usual western accepted medicine. I worked in cardiology in the US Navy (enlisted), have 2 family members as doctors and several nurses but I don’t ask for their opinions – they are not trained in such things. So we are on our own. I don’t do knee-jerk reactions but prefer to investigate something all I can and try it because – well – I have nothing to lose. Also, keep researching because updates do become available that can be valuable.
Serrapeptase has been used for a few decades and I strongly recommend you look carefully at it. Two things that are clear it has done for me is stopped (not slowed) lung mucus and an interesting side benefit are, it has diminished most capillary varicose veins in my feet. It is used to clean up dead protein in our bodies (scar tissue, food, other pills, etc,) but no clear evidence that it does that for the lungs. If you research it and become interested to buy, I strongly recommend do not take it anywhere close to other pills or food. I took it too close to time release niacin – wish I hadn’t done that.
The first supplement I started was astragalus and it has a mild benefit so I keep taking it, not sure I still need it and did not ship any to the Philippines. Natto is good for BP and a blood/vein/artery cleaner which makes blood appear thinner however it is not a blood thinner. Since many of us get PAH – I use it for that and to help keep my heart beat a little slower.
Regards Wei, I don’t know yet – just started about 10 days ago but my harsh cough (which was minor) has all but disappeared. I decided to try it because I cannot find a K-laser in the Philippines so again I thought what do I have to lose and potentially everything to gain. I will know more by the end of June regards Wei. The climate and air here are harsh so it is a real test to not cough – if Wei accomplishes that and helps my O2 then it will be a winner in my opinion.
May 24, 2019 at 9:19 pm #19326
Steve, Is it the cold laser therapy that you are talking about. I found a chiropactor near me that does this. I might give it a try. Do you of other people that had the cold laser therapy and that it helped them.
May 24, 2019 at 9:58 pm #19328
Cold laser is a confusing broad spectrum term. I suggest you read the 3 laser threads that are very popular here and reach out to Dr. Andy Hall who has self-treated with a class 4 laser over 4 years with a specific protocol. He may be able to help you find the right laser in your general area. Hope that helps you…
May 25, 2019 at 5:09 am #19331MarianneParticipant
Hi all. This might be slightly off topic. I was recently diagnosed with IPF. I am in the beginning stages. Will start on OFEV soon. I have done research on this for months because doctors suspected IPF since last fall. I am exercising, eating healthy and going forward with a good attitude. I won’t say I don’t have blue times. Two weeks ago I had VATS lung surgery and it was not easy. Recovery is slow but I am making progress. Oxygen levels are good so no supplemental oxygen for now. I am trying to walk at least 1 mile each day with my lung pillow over my incisions. Just got staples and stitches out yesterday so feel much better than I did. Hope this helps. I also try to do something nice each day for someone else.
May 25, 2019 at 3:50 pm #19346David OtaParticipant
Hi Linda ( @lwaldschmidt )
Ha Ha HA, you asked about my new set of health horrors.
Let me preface this with; I am the luckiest man I know, I wake up with the most beautiful woman on earth, I am able to work an 8 hour day, I was able to watch both my kids graduate from college since my lung transplant. I appreciate the gift of time more now than before IPF.
I just saw this refrigerator magnet on my fridge:
Call your transplant coordinator if you experience:
Shortness of breath
Feeling tired or dizzy
Feeling like before the transplant
Anything red, swollen or has a discharge
Burning urination, difficulty urinating, no urination
I have one of these symptoms everyday, I do not call the coordinator because I would be sent to the ER. I dread the ER.
I get stomach aches EVERY DAY, I am tired when I get up in the morning. I had a chunk of skin cancer cut off a month ago. I take a fist full of pills twice a day, (12 pills, I just counted)
We know quite a few transplantees now. We have become friends and get together to swap stories and meds. Several have died, another looks like skin cancer will take him down. Each story is SO different that I do not see many commonalities. However, everyone had health issues to deal with, med levels screwed up, white blood cell count at 0, skin cancer, bone density loss, fluid around lungs, shortness of breath, tiredness, etc.
Not what I expected, these are not ‘rejection’ symptoms, I believe them to be symptoms of the immune suppressants and how invasive the original surgery is.
I have heard people question if they would even want a Lung Transplant. That is a personal decision that all the IPF patients will face. My recovery was difficult for me and my wife, and I questioned if I had made a mistake 8 weeks post surgery. I am at my 3 year mark this week, and at 156 weeks post surgery, I am glad I ended my IPF adventure and started my Lung Transplant journey, stomach ache and all.
- This reply was modified 3 years, 6 months ago by Charlene Marshall. Reason: tagging
May 26, 2019 at 6:43 am #19359
Such a thorough and thoughtful reply David, thank you so much for sharing your experience with us!
Bless you on your post-transplant journey, I hope these lungs are good for you for many years to come. Thanks again for being so open with your experience.
May 26, 2019 at 6:34 am #19323Mike ColemanParticipant
I suffered from IPF for 3 years prior to receiving a double lung transplant. I was down to ‘weeks’ to live.
Regarding activity: I was on 10L oxygen. My oxygen saturation (sats) would drop to the low 80’s% when I would walk across the room, My biggest struggle was to take a shower, the activity would completely drain my energy. I would need a good 20 -30 minutes of doing nothing for my sats to climb back up. I would best describe the feeling of when my O2 sats were in the low 80’s as a panicky feeling – like you just did a 100 yard dash and had someone in your face….I am not claustrophobic individual – but I would be in those moments trying to catch my breath.
Sleep, weight & fatigue: I slept a ton during the day. I could not maintain any weight. I ended up losing 70 pounds. My pulmonologist said I was burning so much energy just to breathe. He said my metabolic rate, just from breathing, was like running a marathon every single day. My muscle was just wasting away. The best advice I got was to keep active (get into Pulmonary rehab prior to surgery). Pulmonary rehab will have you exercising while on high levels of 02 to keep as much strength as you can. Also drink high protein shakes. The last few months were hard to get to sleep….for me it was a combination of a couple things. My lungs sounded like velcro with each breath so you could hear and feel each breath when in a quiet bedroom. Also if I woke up during the night, my mind would start spinning, worrying about everything from family to potential surgery. I needed prescription meds to help me sleep at night.
Depression: I really tried to keep a positive outlook the entire time. I would thank God each day for the things I could still do and not focus on the things I couldn’t. Additionally, I would also thank God that I had a path out (transplant) vs. being diagnosed with something like pancreatic cancer. This kept me focused on how blessed I was and how blessed I was to have family, friends, doctors and nurses taking great care of me.
Get evaluated for transplant early and stay positive! I am alive and well, exercising every day and I feel tremendous post transplant. God bless you on your journey.
May 26, 2019 at 8:02 am #19363Mark KoziolParticipant
Hello Mike, your comments completely resonates with me. The way describe your experience before transplant mirrors my experience as well. Thank you for commenting and sharing your experience.
May 26, 2019 at 6:55 pm #19383
May 28, 2019 at 7:20 pm #19467Jan RicheParticipant
I am not sure if I am on the right track but I believe I am in the end times. I did not get approved for a lung transplant so there is no option for me. My need for oxygen is going up quickly. Just being still requires 8/9 liters, if I need to get up I have to use a separate source of O2 at 6 liters which puts me at 14 liters. Just to sit up in bed my O2 will drop to low 80’s. I spend most of my time in bed or on the sofa. I am on Esbriet, don’t know for sure if it is doing any good, but just in case.
I have no other health issues so I am dying strictly from IPF. Being breathless is the most distressing symptom I have. I spend my days on my iPad and reading. I watch tv in the evenings. Mentally and emotionally I am good. There is a lot of serenity in letting go of things. I seem to get more Buddhist as time goes on.
I have gotten very aware of my close environment, it’s become important that my bedroom french doors are open and that the room and patio are visually pleasing. I don’t have much appetite so if I do want something we do not question if it’s healthy or not.
We are considering hospice care. The only thing holding me back is my pulmonologists upcoming clinical trial which is showing great promise for slowing IPF down. There is a question of being approved if I am under hospice. But I am sincerely wondering if I will even survive until the trial starts.
Not sure if this is what you are looking for, but it is what I am experiencing.
One good thing I am grateful for is
there is no pain to contend with.
I am 77 years old and I think that makes a difference.
This is the only forum that I can be this honest on. Thank you for being here especially Charlene, it must take something to keep this site going.
May 28, 2019 at 8:31 pm #19470
Don’t know if any of this will help you but there are a number of forum threads available with lots of good information. I take a supplement that is helping with lung mucus – serrapeptase but I do several things that I am sure add into the benefits of the serra. Class 4 Laser has helped many, herbal concoctions some too. So hopefully you can read up on some things that may ease your O2 issues some.
Best to you,
June 2, 2019 at 12:20 pm #19581
Thanks for writing and contributing to this topic thread, although I am very sorry to hear of your struggles. This disease is so cruel and unfair, isn’t it? Sounds like your oxygen needs are quite high, and I can only imagine how frustrating it must be to navigate your day with such a high LPM of oxygen. Is your pulmonologist monitoring the disease progression to see if Esbriet is helping slow things down?
Letting go of things sure can be rewarding for both our mental and physical health, huh? I am learning this as I get older, and although I think I am doing better at it in general, it’s an ongoing learning process. Glad your mental and emotional health is still strong, that’s important. Which trial is it you’re referring to Jan? I hope you can benefit from it, does your pulmonologist have a timeline he/she is thinking about when it comes to this trial?
Oh, I am thankful you aren’t dealing with any pain but I sure wish this disease wasn’t so debilitating and cruel. Thinking of you Jan, and glad you can be honest on this forum, that is so important for our ability to cope. Feel free to write any time, and thanks for your kind words.
June 4, 2019 at 3:23 pm #19626Lorena McManusParticipant
There is a section under files I believe that has some information on Hospice/Palliative care. It is such an important and good question. So many of us bemoan the lack of control this disease leaves us with. Planning how we would wish our life to end is a way to have some control. I worked in Palliative/Hospice Care for most of my Career as a Nursing Director. The first thing I can tell you is those of us with a prolonged disease die pretty much the same way regardless of the cause. We don’t choke to death. That is often a fear. We generally die of terminal pneumonia and can do so peacefully and in comfort with the right care. Generally as the end approaches we get weaker, rest and sleep more, loose our desire for food and fluids. We will usually get more short of breath. It is crucial to involve palliative care early for management of these symptoms including shortness of breath, depression, and psychological and spiritual support for the patient and family. Once the disease or symptoms have progressed it is then vital to get a referral to Hospice, which can be provided at home. Opioids, anti anxiety meds, anti delerium meds, neuroleptic meds, antidepressants, sedatives, complimentary therapies, and having whoever we want with us is all part of impeccable hospice care.
In the end death should be peaceful, with little shortness of breath. We slip into unconsciousness, and beginning taking short shallow breaths followed by long pauses until we breathe no more. Loved ones should continue to speak and touch us until the end as we research has demonstrated hearing is the last sense to end. This is a good death. We all should demand and receive this kind of death.
This is is a very short synopsis but there are resources available. One I recommend is the Canadian Virtual Hospice. Again check the files section in Breath Support.
June 4, 2019 at 5:28 pm #19627Jan RicheParticipant
Thank you for your reply. It comforts me to know I will not be gasping for breath at the end. Breatlesssness (Lot of s’s there) is the thing I fear the most. If I can avoid it in any way I will do whatever I need to do. It takes me forever to do some things. I move at a snail’s pace. I used to do 10 minute showers now it’s an hour.
Steve suggested serrapeptase. Where do I get this. Is it prescription or over the counter?
June 4, 2019 at 5:36 pm #19628Lorena McManusParticipant
You are very welcome. It is so often the fear of the unknown that haunts us. Unfortunately I’m not familiar with serrapeptase nor has it been mentioned in any of the literature I have read. What I do know and has been recently reinforced at a symposium I attended is that opioids are the most effective treatment for shortness of breath, even more so than oxygen. I am quoting both articles and a palliative care physician. We don’t know exactly what the mechanism is but we know it works. So I would strongly encourage you to get a referral to a palliative care Doctor now and get it treated so you can live with the best quality possible.
Please let me know how you make out. Lorena
June 4, 2019 at 6:14 pm #19629
Thanks for your beautiful reply and comments Lorena, I appreciate the time and energy you took to write us all about end-of-life knowledge and care you have. I too used to work with palliative patients, kids though and their resilience and strength amidst the most difficult times were admirable. I think I remember sharing that with you 🙂
Agreed, that the end should be peaceful for all of us and getting palliative care or hospice involved is important. Sadly, too many folks mix up those words with imminent death/dying, however, they can focus on quality of life as you say, and help us with the many fears people have around the unknown (understandable).
Jan: if you’re interested @steve-dragoo can provide you with more information about Serrapeptase. While it doesn’t stop the fibrosis, he has found it beneficial when it comes to symptom management. Thank you both for your beautiful correspondence; I am continually humbled by the kindness and gentle nature of those who use our forums.
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