-
How quickly can pulmonary fibrosis progress?
-
Hi Jayme,
Diagnosed October 2016 and I am only on various supplements and O2 at night usually and sometimes after I climb stairs for a minute, at 74, and other issues that is ok for me. NAC is good but please look at other forums where other solid supplement recommendations are made such as zinc – the right type, EGCG, D3, and K2 with M7. Because I have PAH I take others as well such as Coenzyme Q10, and Alpha lipoic acid, will be adding melatonin soon as it is a better antioxidant than NAC which I really like.
Stopped mucus with serrapeptase 5 years ago BUT A BIG CAUTION – never take it close to other pills or food as it sees them as dead protein and that is what it dissolves. Others I take too but we are all different with this lovely disease and other medical/metabolic history.
Success and welcome to you…
Steve-
What is NAC? Also the other supplements you mentioned. I take zinc, d3 and Q ten
-
-
Jayme
‘I can only urge you not to avoid medication because of something that may happen. It may not. All you can do is try it and, if any adverse effects outweigh the potential benefit, give it away. Ofev comes with a lot of baggage but not everyone is a victim.I am an 85 year old male. I was diagnosed 3 years ago but the progress of my disease is quite slow and I have what I consider to be a good quality of life. I was recently offered Ofev but, like your husband, I had severe reservations about starting the medication because of its reputation. However, I agreed to start but I made it clear that I would very quickly stop if the adverse effects came to pass.
I have been on Ofev for 6 weeks, 150mg morning and night. I have made no dietary changes. I simply make sure that I take my tablet when I’m starting my meals. My first delivery came with a complimentary packet of immodium – just in case. Well, just in case hasn’t come to pass. The immodium is unused. I have had absolutely no side effects. If I was in a drug trial I would be certain that I got the sugar pills.
I am not trying to say that your husband won’t have side effects. He may but there is no guarantee that they will completely destroy him. The severity varies from person to person and those that he might develop could well be mild and manageable. You lose nothing if you try and then decide to stop. At least you will, have tried.
Raymond
-
Raymond, thank you. I printed out all the forum responses and my husband was so impressed by the kindness and informativeness of each of them. In fact, we went to the Mayo Clinic and the doctor – head of pulmonology department there – recommended Ofev and my husband agreed to try it. He started last week I’m happy to say that he has had no side effects so far. I think having with the meals is key – and we try to make sure he’s having lots of protein as we were told that helps too. Very pleased so far and thank you for your encouragement. Of course, the proof is in the pudding…another CAT Scan in 6 mos. Jayme
-
-
I had a bout of pneumonia in early November of 2019, I had experienced bouts with bronchitis many (30+) years, and I thought I could medicate myself out of this particular ailment. At my wife’s insistence I went to a walk in Albany Medical Center medical clinic. The young lady doctor diagnosed me with pneumonia, prescribed medications, and suggested that I follow up with my general practitioner. I didn’t have a chest X-ray as my visit was on a weekend and I was very tired and figured things would improve with the medications prescribed. I had a follow up appointment scheduled with my general practitioner and fortunately another medical suite in that same building had an X-ray/imaging practice. I had a chest X-ray and my general practitioner contacted me two days later and informed me that he did not see, at that juncture, any evidence of pneumonia. However he was very concerned about the amount of scar tissue shown in lungs via my chest X-ray. My general practitioner referred me to a pulmonary group I had utilized in the past. I visited the pulmonologist in mid December 2019 and they scheduled sleep studies, blood tests, and a CT Scan. I was initially diagnosed with ILD in late January of 2020. I had two breathing function tests about 7 weeks apart, the first test in February 2020, after the second test I had a virtual appointment with my pulmonologist and I had several questions about my illness which was now defined as IPF. I asked about longevity and shared my fears about the Dr Google information I had found. My pulmonologist informed me that I probably had a lot more life left and I shouldn’t be so concerned. As my wife and I talked with him he started to review my latest breathing function test and his face changed and seemed almost panicked. He informed me that my lung function had dropped by @ 26% and he wanted me to start taking a medication called Esbriet as soon as possible. It took seven more weeks before I started Esbriet in July of 2020. I’m tolerating the Esbriet medication very well and my team and I believe it has slowed my IPF. I never had a lung biopsy as the Covid pandemic was raging and medical resources were being stretched to their limit. Almost immediately after my diagnosis I had found Noah Greenspan’s Ultimate Pulmonary Wellness book and read it and joined several IPF support groups. I did this research and data mining of my own volition. I’ve made my pulmonologist aware of my involvement with theses groups and it was like “Oh good for you”…
(Folks always remember you are your own best advocate!)
I’m still on Esbriet, I went on the generic Pirfenidone a few months ago. Up until three months ago I was on 2 liters of oxygen and refillable D tanks but, I requested a six minute walk test and I have declined over the last two years. (I’m not declining anywhere as quickly as I was at first, the Esbriet/Pirfenidone seems to work well for me.) I’m sure I would’ve expired in the fall or winter of 2020 without these medications. As of right now I’m on oxygen 24/7, 7 to 8 liters of walking around and 4 liters at rest. I’m using E tanks, I get twelve tanks every two weeks. I’m limiting my journeys and staying close to home and my 10 liter concentrator.
-
I have read that perifidone is the preferred treatment for UIP. I don’t know too much about it and I have been concerned about the side effects.I coughed a lot recovering from pneumonia and RSV but now the cough is only occasional. Does the cough come on quickly and is it constant? I have so many questions and I welcome reading other people’s journeys to see what to expect. Are you taking any supplements? How soon after diagnosis were you in oxygen? I was on until January but now off. I don’t think there is a support group here. Any information is appreciated! Thank you
-
I have read that perifidone is the preferred treatment for UIP. I don’t know too much about it and I have been concerned about the side effects.I coughed a lot recovering from pneumonia and RSV but now the cough is only occasional. Does the cough come on quickly and is it constant? I have so many questions and I welcome reading other people’s journeys to see what to expect. Are you taking any supplements? How soon after diagnosis were you in oxygen? I was on until January but now off. I don’t think there is a support group here. Any information is appreciated! Thank you
-
-
Interesting. I went to center for excellence, a transplant center. They did the 6 minute walk test and put me on 10 liters walking and 8 liters sitting. 2 weeks later I collapsed and the critical care lung doctor at a different hospital used a bypass mask ( not a cpap ) and reduced my elevated carbon dioxide back to normal, seems the pursed breathing is important as it can reduce the carbon dioxide ( now where have we herd that pursed breathing is good for you, maybe pulmonary rehab. ), its been 4 weeks since being in the hospital and my 10 minute walking is at 5 liters and sleeping at 2 liters, when I went in walking was at 10 and sleeping at 5 liters. I think more oxygen is not the answer, better understanding of blood gasses is needed.
-
@caneelbay1
Hey John,
Glad to hear you came through that harsh learning experience. I agree with you managing CO2 is essential to faster recovery times. I do not know exactly what has happened to me the past 3 weeks but I have gained strength and able to walk our stairs 30 times per day. A couple of months ago I would not have attempted more than 5 or 6.
I keep modifying the supplements and know the current combo works well. What I believe has happened is my PAH has relaxed and thereby so has my heart rate. O2 recovers fast on each trip up and down, and so does the heart rate. BP is great – yesterday 113/64.
Keep experimenting – I have to since I am still in the Philippines and IPF is almost unheard of…
Stay well…
Steve
-
-
Hi you all. It looks like most of you have covered just about everything that there is to cover. So there is not much i can add. However, i have had IPF since 2013 (given about five years tops to live) and am not getting better of course. There is nothing on the market that makes you better. But i have been on Ofev for about five years and feel that it has helped me to this year. But and i say but, it is impossible to say i would be better without it. There is no way any of us can make that claim, no matter what they are taking to help. I have never had any side effects from OFEV. But i may be a little different then most. I have never had a head ache and i have only had a couple of colds in my entire life. I just get the big stuff. Heart attacks and IPF. But for 81, i am still kicking. Chuck
-
Hi Steve, what supplements are you taking?
-
@caneelbay1
Hey John,
Most I named above to Jayme but the dosage and timing – what to combo with and what not to combo with is a little complicated. Maybe we can talk? I am adding NAD+ and SIRT1 to zinc (the right kind) and taking magnesium away from zinc as zinc negates the magnesium (again the right kind – there are several varieties and each acts differently). Others are Haritaki, nattokinase, B complex, and EGCG. But again dosage, how and when are complicated…
Steve
-
-
-
I was diagnosed in May of 2017 and a year later The VA prescribed OFEV, which I have used consistently. I tire a bit negotiating slopes and long stairs. I can do my lawn without too much difficulty. I see my Pulmonary doctor (at the VA) at least twice a year. I undergo studies of Lung Function yearly. Other diagnosis: heart valve deterioration and some cartoid blockage. And of course, arthritis of knees and hip. But I live with all of these without too much complaining. Oh, and I use a CPAP machine with O2. I sleep just as well with the device as not.
My doctors evaluate my condition(s) as stable. But there is a possibility for a stent to go in for the valve malfunction, next year. I am 78 years old and I live in the tropics, farm country.
So, to answer the question of the subject: my IPF has progressed slowly as far as symtoms but very stable for years. This is Year Six for me. I feel strong and unperturbed at this time. I do cough a bit. And I admit that I do little exercise, other than in doing my chores around the house.
Stay well.
-
@tonyhernandez
Hey Tony,
A lot of similarity – 74 and almost 7 years in, living in the Philippines (been to Puerto Rico a few times) on no meds except a bucket of supplements as IPF and PAH are very rare here. Took 35 trips up and down the stairs today. Exercise, diet, and water are key.
Stay well…
Steve -
Tony, thank you. It’s good to hear you are trucking along. Though my husband has lost a lot of weight over the last year – before being diagnosed with IPF – I think he’s doing better because we are focusing on good nutrition (lots of protein), some exercise (in the house), and a positive attitude. It’s hard to avoid thinking, how did this happen? But acceptance is part of the positive attitude I guess. And I’m just happy to see him feeling better than before we really circled the wagons to keep it at bay. Good luck to you and keep doing what you’re doing! Jayme
-
-
Diagnosed in 2016 I had no symptoms until after I got Covid in 2021 then I started having some issues and I’ve been on Ofev for two years now. Could not tolerate the 150 mg it affected my liver not to mention the diarrhea.. the 100 mg seems to be doing fine for me still having some diarrhea issues but using Imodium every day. Just had a CAT scan and in one year I have had a little progressions not much. My mother died of pulmonary fibrosis in 2007. Nothing was available to help then. She’d had it for nine years from her diagnosis before her passing. It is definitely hereditary because now my younger brother has it also, he was diagnosed one year ago so at about the same age I was 66. I am 73 now, active healthy, somewhat breathless when I over exert and I tire more easily for sure. Bathroom time is a lot more frequent but other than that I am enjoying my family helping at my church and traveling. I do have oxygen provided through my doctor but I have not had to use it. Apparently if I go below 88 I’m supposed to use it. I think, as Steve said above staying active is so important and you can never underestimate the power of a positive attitude and prayer. I have three grandsons on missions for our church (LDS) right now and I plan to be here in two years when they return and then see all my other grandson‘s fulfill missions, and maybe even some of my granddaughters! Also, looking forward to those weddings and great grandchildren! Best wishes and many prayers for all of you as we struggle through this together.
-
@kathywhitehead
Hi Kathy,
Yes, our spiritual walk is primary. I was raised LDS and stopped going in my teen. Was baptized on 10/12/2002 as SDA – finished medical missionary training in the Philippines with my wife and look forward to being on the spiritual frontline back in the USA.
Attitude is a lot of our battle and roughly stated I do not see anything about fairness on my birth certificate…
Blessings. Stay well…
Steve -
Kathy, so it sounds like you were diagnosed 7 years ago…and you are going strong, motivated by your family too. God bless you! Jayme
-
-
It’s all a matter of when you are actually diagnosed and the methods used to make the diagnosis. My sister was diagnosed a week before she passed away. For years she had been variously diagnosed as having bronchitis, pneumonia, asthma, etc. She walked into the hospital and never walked out. A lung biopsy confirmed IPF.
I was diagnosed 11 years ago after a routine chest XRay showed honeycombing. Subsequent PFTs and then a lung biopsy confirmed IPF. I am not on oxygen and am able to maintain oxygen levels at 96-97% except when I do strenuous work it will drop to low 90s.
I recently was diagnosed with moderate congestive heart failure which is not surprising since IPF puts a strain on the heart.
I was initially taking Esbriet but the side effects were horrible- diarrhea 8-10 times a day, weight loss, fatigue, low blood pressure. I am now on Ofev and not sure whether or not I will continue with it due to the side effects, although they do not seem to be as severe yet as those with Esbriet.
In my opinion, many people have lived with IPF for decades until it becomes severe enough to have definitive tests such as a lung biopsy. That’s why the survival estimates of 3-5 years are not reliable. Those are based on so many people not being diagnosed until the disease is well progressed.
-
Elizabeth, I’m so sorry about your sister. And your point about it being hereditary gives me pause, because my son is smoking cigarettes. He doesn’t live with us, but the risk of and ILD seems even greater if there is a hereditary component. Something I am going to investigate. Thank you! Jayme
-
-
Hi Jayme,
I was diagnosed October 2016 with ILD and confirmed May 2018 as IPF after I returned stateside. Diet, water, exercise (a little forced if necessary), proper rest, other supplements, Pulmonary PT, and spiritual walk add up to be a significant arsenal against this disease.
Steve
-
Steve, thanks for all your comments throughout this chain. I completely agree with you about the best components to incorporate in our lives to keep IPF at bay, and they are helping, at least inasfar as they are helping us feel less powerless, and that is a big thing. Also bought the book by Noah Greenspan, wgi you (I think) and others mentioned – it is called Ultimate Pulmonary Wellness and it has been a gift. Right now, after our trip to the Mayo Clinic two weeks ago, and my husband’s agreement to start taking Ofev, I’m feeling more hopeful about slowing down the progress of this disease. We are big on supplements, so I am going to go through your messages and write down all that you are taking. Thanks so much for your help. jayme
-
-
I thank all who have responded so candidly. I feel more optimistic, and I’m going to print out all these responses and share them with my husband. It really helps to feel that we are not alone in this. Of course, we know we’re not, but your information and support matters so much. It gives us inspiration. Thank you again!
-
My brother was diagnosed in 2017 and died 2 years later. Every disease is different. You need to find out what type of ILD you have. I work with my pulmonologist here in Chicago and also one at the Mayo Clinic in Phoenix. You need spirometer tests and CT’s and maybe a bronchoscopy to do biopsy’s of your lung tissue. Good luck.
-
Steve, I’m not sure what you mean by “type” of ILD? Also, I have not heard of spirometer tests…or a bronchoscopy so I will make note of those when we get to Mayo (in Jacksonville). Thank you for the suggestions.
-
There are over 200 types of ILD. The most common is idiopathic pulmonary fibrosis, which doesn’t have a known cause, followed by diseases caused by occupational exposure or connective tissue disorders. I find Healthline to be a reliable resource: Interstitial Lung Disease: Symptoms, Causes, Types (healthline.com). Let your pulmonary doctor/medical team tell you what you need. I’ve never had a bronchoscopy or biopsy because my medical team is certain my ILD is caused by my autoimmune disease and hasn’t seen the need to put me through these tests.
-
Oh, thank you for the clarification. My husband has IPF in fact, but I misunderstood. All the best to you.
Jayme
-
-
-
I really appreciate all these responses, and have finally read them all and taken notes. (In the last two weeks got COVID and pneumonia and was in the hospital for six days…so it’s been quite a time.) I have a few questions about the responses. Some relate to the wide variety of supplements mentioned, and my question is, do you feel they are they helping? Most everyone mentioned taking Esbriet or Ofev…my question here is, do you feel that these meds have made a big difference in slowing symptoms or even making them less apparent to you?
I see my husband is deteriorating so quickly after being diagnosed just over a month ago. I can’t understand how he went from walking 9 holes on the golf course a few months ago to sleeping/resting several times a day, coughing a lot, eating little, and having no energy. He has wanted to hold off on the Ofev (our insurance approved it) until our appointment at the Mayo Clinic in 2 weeks. I am counting the days and wondering if I should encourage (push) him to go ahead and get started on it…in other words, could 2 more weeks make a difference?
Once again, thanks very much for your input!
-
I dreaded taking Ofev because of all the known terrible side effects, but I have been on it for four days and so far have had no side effects. I feel like I may be coughing slightly less since starting it. My ILD is very progressive and severe, and my pulmonary doc strongly encouraged me to get started on it as soon as insurance approved it. Will it make a difference? Time will tell, but I’m only 60 and would like to live at least another decade. I’m willing to try whatever my doc recommends as long I can manage the side effects. Your husband sounds worse off than I am. I’d encourage him to get started on the Ofev sooner rather than later. You can’t say how something will affect you until you try. Everyone’s experience is different.
-
I appreciate your reply, and I’m happy to say that my husband started on Ofev last week, after an appt with a doctor in pulmonology at Mayo Clinic. He hasn’t had any side effects (I shouldn’t tempt fate!) and it may be partly because we are making sure he takes it at meals and the meals are protein-rich. Someone at Mayo told us that would help. Anyway, it’s a big relief, especially because he seemed to be getting worse so quickly, as you said you were too. But it’s helped a lot to feel less powerless and be eating better and resting plenty, and even exercising with my son. The book Ultimate Pulmonary Wellness has been so helpful, too. All the best to you, Jayme
-
That’s great that he’s started Ofev, Jayme. I wish him and you all the best. I also take my Ofev with plenty of protein and fat, and it helps a lot. Thanks for the book recommendation. I will check into it.
-
-
-
I send you my best wishes and hope things will improve for your husband.,
It has been so helpful reading experiences of other patients, so far I am not being prescribed anything at all, but simply monitored. Trying to stay as active as possible and doing breathing exercises. It is a challenging condition to cope with and in the UK we are not in the best place as far as our Health Service which, although excellent, is riven with Strikes which are further delaying appointments. So the patient lists grow daily and we wait and hope to hear when it is our turn., I send you all my very best wishes.
-
I was diagnosed with IPF in 2009. My PCP heard crackles in my lungs and referred me to a Pulmo doctor. The disease was mild for 10 years and then, in 2019, it suddenly became worse. I required O2 24/7 and was put on OFEV initially. However, that drug caused me severe diarrhea, therefore, I was switched to Esbriet which I take with no problem. I am also on Myfortic.
I manage now the best I can but I know that someday the IPF will become severe and I do not know what will happen then.
-
I was diagnosed with IPF 2 years ago. My doctor recommended OFED and I began taking it twice a day. I have to say it was a learning experience, OFEV is unforgiving, if I ate the wrong thing I paid the price. Saying that I learned from experience and others on the forum, I am stable and my numbers are good. I have not had to rely on oxygen, knock on wood, I do use an inhaler twice a day and it greatly reduces my cough. My doctor says I have stabilized. I have started using the zinc supplement and I am scheduled for the complete battery of tests in March. Time will tell if OFEV helps or not, however I have become an avid reader about IPF both in American Medical publications as well as those in English from other countries and it appears that it is the medication with the most promising results.
-
Don, could you tell me more about the zinc supplement? The amount especially? Is it just zinc or is it combined with something else?
-
-
Hi to all:
This is my kind of fisrt post, since i found this wonderfull forum, expresing differnt experiences in the dark tunnel of this ugly desase ( for now)
My healthy and wondrful wife ,my love of 43 years, was reacently diagnosed , she is very healty otherwise and living 100% without symptoms, I think, is because, the desease is progresing slowly.
She did have a LFT that indicate some lung anormalities FVC 80% and DELCO 55% ,but, she is able to walk all day doing all house chores,work 8hours a day, clean, and time for gardening, She also excersise 5 times a week 3 of them with weight lifting. As you cans ee, the picture perfect wife!!!!!!! we also work toghether in our business for the last 38 years, the simbioses we have is second to non.
I still so upset, that my only refuge is to come here on daily bases to educate and find confort with great succes stories, leke Steve Drago, Charlene, DR.Don, Lee Forge , and many that offer so much information for people like us that are transiting this ugly path.
Our Pulmonologies, say not to worry because, it is mild or even slow progeresion, but, as I reaseched ,this is totally umpredictible, and deadly for some people. He offer us the 2 anifibrotics , but my wife say that she prefer not to have them yet, till the second LFT schedule in 5 months to see the rate of decline. I opted to find a second opinion, and I am awaiting he call from a Toronto Hospital then , I think with a all the info she/we will make desicions.
I have read a lot and i came down thith 3 options going forward, and I would like to share with you all, as I belive on the wisdom of the craud.
1) Wait and see, keeping our helty way of living as all IPF information boards indicate. ( pleanty of water, good diet, pleanty of excersie, and mainfullness )
2 ) Start asap the antyfibrtic, that has shown reduces the speed of this sickness and continue with the above, life style
3) do all of the above and start the process of lung transplant.
.I know her age is a mayor factor for a negative prognosis but her almost perfect picture helth may play a roll, also er devotion to God who she visit every sunday.
My last thought is that there are many ongoing medicine trial on the pipeline, like BI 1015550 , Sarcatinib, the Insilico , and many more that needs just time to bring better treatment options. perhaps in the next 5 years providing we can all make it, the conversation topic would be about, what is going to be the menue for the next meetin.
God bless you all .
-
Hello to all:
I was diagnosed with IPF in October of 2020. The diagnoses followed a brief hospitalization and lung biopsy. My pulmonologist at National Jewish in Denver Colorado recommended that I consider either of the two oral medications currently available. I chose OFEV, 150 mg twice a day. The side effects are significant but I have been able to deal with them. To date my PFT’s have been near normal and my regular CT scans showing no progression of the IPF.
When I ask my pulmonologist for a prognosis he simply said “there is no way to predict how rapidly your IPF may or may not progress. The best things you can do are: follow the recommendations of your medical professionals, eat healthy, stay hydrated, exercise, keep a positive attitude, and don’t dwell on predictions of 3 to 5 years from diagnosis as a prognosis. The data behind that estimate is outdated. Every case is different”. I have found that advice helpful in my journey with IPF.
I am a person of faith and believe God is in control. I am comforted by that and am at peace with His timing. God Bless every one of you! I pray for our IPF family daily.
-
Diagnosed 5 years ago. Began Esbriet, supplemented with Quercetin, Turmeric and Metformin, based on my own research. Walk 10-15 miles per week, get 8 hours of sleep per night, multiple vitamins . Now stable for 5 years with minimal 2-3% decline per year. Age 81.
-
Hi Mario:
I is wanderfull to read your story, i hope my wife will tolerate the medication, as because she is asymptomatic, she had decided to wait and see strategy, that , in my point of view is wrong.
As supplemt she is taking zinc and curcuming for now, she try nac, but her cough was too much for her to handeled, and quit. She sitll lifing weights and walking everyday, plus house chres, and a great feeling of been watched by God.
Be well
-
-
HI the computer says no to my post again HEEEEEELP
-
Hi Malcolm, your post came through here. Are you trying to post a topic? Feel free to email me at [email protected]
-
-
i have had IPF for four and a half years now started taking Esbriet or pirfenidone immediately and my condition has been stable. And I would encourage you to get on these anti-fibrotics ASAP Good luck
-
Thank you for your reply. My husband has been on OFEV for about 6 months, but his lung capacity has declined significantly, from 59% to 47%. He is making more of an effort to exercise now, though, and we are helping that will help.
-
74 yrs, 5 yrs since my ILD diagnosis, still have lungs in decent condition, almost normal life. Exercise and remaining happy (and a good partner – for 50 yrs) also helps. Take Esbriet since 4.5 yrs-helps! good luck
-
-
-
My shortness of breath started within 10 weeks of my heart attack in 2019. I was diagnosed with IPF on October 2022 (FVC 62%).
I was on OFEV for 8 weeks but couldn’t continue due to (diarrhea, loss of appetite). In October 2023, my FVC drop to 57% (5% declined ).
I started OFEV in November 2022 and diarrhea side effects is manageable with 1 leparomide (2 mg) in the morning.
In April 2023, my FVC dropped to 50% which is 7% declined in 7 months.
Does anyone have similar experience regarding OFEV.
-
So sorry about the difficulty you are having with OFEV. My husband has tolerated it pretty well, though his appetite has seemed to decrease since taking it.
-
-
I was diagnosed with Progressive Pulmonary Fibrosis August 16th in 2023. I was having trouble breathing so I went to the ER. They did a CT with Contrast and found it. When I get up in the mornings I have a terrible time breathing for about 2 hours until I get to moving around and walking. Some how I think all that mess settles in my lungs at night. I also have emphysema which complicates it even more. I have not been perscribed OFEV . I only use 4 different meds in my nebulizer but they don’t help. I do better on up in the day. I use 4 liters of oxygen at night and if I get short of breathe during the day I use it. I live in NC and my lung Dr. is in Winston Salem. He does not do much to help. I think if you are older they don’t seem that concerned. He just tells me this is what I will die from. Not a good thing to say. I am 66 years old. I know my only help is that God will take it away. I know He can. I pray for your husband and everyone on here . I ask for all prayers to. May God bless and heal all.
-
About all the Pulmonologist can do for me, IMO, is scheduling CT scans and appointments and getting me on OFEV. Hopefully that will be a help. I don’t know what else they can do for me, so I don’t rely on them going forward. I am very curious why you haven’t been offered one of the two medications that may help slow the lung scaring. I would ask about it. Your morning problem could be caused by Dairy foods. The OFEV mfg. warns of dairy. I have probably learned more about how to care for myself by learning how to manage possible side effects of OFEV. My Dr. started me on 7L of oxygen. I have now weaned myself off of oxygen except for when I exercise but it is always close by if needed. I monitor my oxygen levels frequently. Since there is not much more a Dr. can do for me, I have decided to take care of myself like I feel is best for me. If they can’t find out what causes IPF, how can they fix it? I’m all for clinical trials and my Doctors, but in the meantime it’s up to me. Attitude and learning what I can do for myself to have the life IPF is trying to end. I will 🙏 for you and all of us. Sandy
-
thank you for asking. I was diagnosed in 2020 due to a cough and now am deteriorating per the test assessments.
I am on Ofev. I need encouragement . I am fearful and anxious. I cant sleep due to cough. I am single and 64. I am not sure i want to chk into Lung transplant. Had 3 fam members w IPF also.
any words of encouragement would be helpful…..
I walk 3 miles per day on a treadmill at a moderately high incline. No Shortness of breath altho pulse ox. 86% when first up in a.m. Not on oxygen /yet….
help please, Chyna
Log in to reply.