April 21, 2019 at 10:58 am #18667
This is my first post. I discovered the Pulmonary News website a few weeks ago while awake during the middle of the night. That led me to the thread on dying from PF where I read postings for over two hours before finally falling sleep.
I am a 75-year-old male who was diagnosed with IPF in late October 2014. The diagnosis was confirmed by a lung biopsy. I am thankful I have made it 4.5 years from diagnosis with not much progression of the disease. I feel a bit of guilt submitting this entry because so many others have progressed to disabling situations. My heart goes out to all of you and your caregivers.
The only intervention I use is an albuterol inhaler as needed. My breathing is both labored and shallow. I had once led a busy life including much physical activity and exercise. My current physical activity is limited to 4 to 8 block daily “business trips” with our golden retriever. I have a terrific pulmonologist who I see every six months. Immediately prior to those appointments I do the PF tests and the results are ready for my pulmonologist to share with me when we meet. My pulmonologist is bright, empathetic, and willing to spend as much time with me as necessary to respond to my questions and concerns. He trusts the test results, but he also puts a good deal of credibility into how I report I am feeling and my symptoms. About two years ago he suggested I try esbriet. Unfortunately I could not handle the side effects of diarrhea and loss of appetite. I tried reducing the dosage at my doc’s request, but it did not reduce the side effects. I told my doc that quality of life is more important to me than longevity and I stopped taking esbriet.
I last saw my doc in February when my PF test scores began slightly trending toward IPF progression. The doc’s response was to wait until the next 6 month testing cycle to determine if it is progressing. That was fine with me despite my concern that my chest/lungs were tender likely due to ongoing post-nasal drainage. He suggested I use my neti pot consistently for a month to see if I get chest/lung relief.
It has been just over two months since that appointment and my condition has deteriorated. Current symptoms: (1) ongoing and frequent coughing, both productive and dry. Productive coughing results in yellow to yellow-green phlegm. I have coughed up so much gunk in the last month that one would think there could be nothing more left to expel. Dry coughs are painful episodes resulting in a sore chest. (2) sore throat must mean I still am experiencing drainage, but I do not sense I have a cold or sinus infection. My throat is raw and often tickles. (3) ongoing wheezing (that can be heard from a distance) on exhale only. (4) extreme fatigue to the point one simple errand is more than I can handle without coming home for a nap. (5) I have a difficult time falling asleep and/or staying asleep at night due to my coughing and bringing up phlegm. I do use a CPAP machine for sleep apnea.
Finally, I getting to my question. Do these symptoms sound like IPF progression? I look forward to reading your responses and any advice you have to offer.
April 21, 2019 at 7:38 pm #18678
Hello Merle, I don’t think anyone on this forum can truly to tell you if these symptoms are a sign of ipf progression. Once I got the cough it never subsided until i received a transplant. Please speak to your doctor regarding bringing you in for another pulmonary function test before six months. This is one of the ways to tell if your fibrosis has progressed. Ask him for something for your post nasal drip. I had before transplant and still do. I take claritan. Merle I am happy you engaged in discussion and hope you remain active. Mark
April 25, 2019 at 9:22 am #18757Steve DragooParticipant
This is definitely the right place to discover opportunities to share, learn, find helpful ideas with supplements, K-laser, herbal concoctions, and find resources for clinical trials for starts.
I got the news while in the Philippines in October 2016 and it was confirmed when I returned stateside April 2018 and found this forum a few months later. Many discoveries and conversations since then have been enlightening so much so I am taking a few supplements I never heard of and doing K-laser treatments too.
I was developing a cough about 5-6 months ago from mucus build up and it was then I was introduced to serrapeptase. Basically, it eats dead protein and that might even reduce or slow scarring it certainly thinned out and significantly reduced the mucus in just a few days. I started at 120000 SU (not IU) total daily for a few weeks, now I take 205000 2X daily – enteric coated – empty stomach. Developed a harsh cough but it is virtually gone and I have other lung problems, many cysts, and enlarged lymph node. I used to have many micro-varicose veins on the top and sides of my feet but more than 90% of those are gone too – not sure why because I do take other supplements that may have helped as well – ask me.
Because I also have pulmonary hypertension, I take nattokinase and it slows my heart rate to the low 60’s high 50’s while resting – a nice reduction from high 70’s low 80’s.
Started K-laser about 3 months ago and my O2 levels are holding and 6-minute walk tests are good, endurance is increased. Many have said and claim it stops or markedly slows the progression of this insidious disease. Worth looking into.
April 21, 2019 at 7:58 pm #18679
Thank you for commenting Mark. I will be calling tomorrow to seek another pulmonary function test. Merle
April 21, 2019 at 9:12 pm #18680
You are welcome Merle, please let us know how it goes. Best wishes and keep staying active. Keep walking your pup! Mark
April 22, 2019 at 7:37 am #18686RobParticipant
Hello Merle ( @sandford ),
I am 57 diagnosed with IPF 2 years ago and am on Esbriet. I constantly suffered with a phlegmy cough but a year ago started inhaling Acetylcysteine solution(Mucomyst) 10ml twice daily by nebulizer and now cough rarely and feel much better.
- This reply was modified 2 months ago by Charlene Marshall. Reason: tagging
April 23, 2019 at 10:42 am #18696
Thanks Rob, I will talk to my pulmonologist about Mucomyst.
April 24, 2019 at 4:45 pm #18751Lawrence HurrellParticipant
Merle ( @sandford ) your story is identical to me ,We are both 75 ant tried Elbert and couldn’t take it with issues. I have tons off phlegm and need to buy the Kleenex co. This has been going on for months and sometimes the phlegm red. I think we need to enjoy what we have until the end. I live in a split entry house and have electric stairs going in on Sat. I get out of breath walking 10 steps and stairs are bad. I have plenty of support a wife 6kids and thirteen grand kids and they all keep me busy. I hope you have support and wish you the best. God bless and better health
- This reply was modified 2 months ago by Charlene Marshall. Reason: tagging
April 24, 2019 at 5:42 pm #18752JoAnn WhitfieldParticipant
I have been going thru the tons of phlegm both coughing and blowing my nose for the past two weeks. My pulmonologist put me on antibiotics a medrol dose pack and I am starting to feel better. I have IPF about 12 years and do usually have the cough but not as severe as lately.I think this is more than the IPF and as I said it is getting better. God bless all.
April 24, 2019 at 6:42 pm #18753
Hello JoAnn, usually the cough the PF patient has is a dry cough, hopefully the antibiotics are working and eliminates your symptoms. PF patients have a compromised immune system, please take precautions to protect yourself. We are nearing the end of the flu season and entering the allergy season. Take care. Mark
April 26, 2019 at 7:53 am #18759
A huge thank you to both Steve and Lawrence for submitting your respective stories. Steve, I am eager to talk with my pulmonologist about the interventions you mentioned. It is nice to know about the possibility of several options. Lawrence, my wife provides magnificent support, but I feel guilty about transferring my lifetime role of caregiver to her. That was not in my long term plans. We decided to get ahead of the curve two months ago when we had a Bruno stairlift installed in our 2-story home. I had hoped to put off using it on a regular basis because I felt the exercise of walking up and down the steps is good for me, but during this current bad spell I am having I am so glad we have the stairlift in place.
Thank you both for making my day.
April 26, 2019 at 7:55 am #18773Charlene MarshallKeymaster
Thanks so much for writing, I am really glad you’re finding the forums and others’ stories beneficial. We’re so lucky to have such a helpful community of those willing to share their experience with this cruel disease. I sure hope this bad spell you’re in ends soon. How are you feeling the last few days? Do you find you’re impacted by weather yet? It has been damp and dreary here the last few days, and wondering if that is contributing to some increased side effects for me.
Take good care,
April 26, 2019 at 8:12 am #18775Lorena McManusParticipant
Good morning everyone. I just wanted to reply in general to the posts related to increased coughing and phlegm. There was mention of a change in colour of the phlegm; one person mentioned a greenish tinge and another mentioned some red. Please always report these changes to your doctor ASAP. Along with your other symptoms both can be indications of infection or other serious issues that should be attended to by your physician as soon as possible. I hope this is helpful. All the best. Lorena
April 26, 2019 at 8:26 am #18779Charlene MarshallKeymaster
This is absolutely helpful Lorena! Thank you so much for this important reminder, and the need to always consult our doctor/physicians about this change. Thanks for sharing 🙂
April 26, 2019 at 10:47 am #18787Steve DragooParticipant
We have similar symptoms but what we need to help each of us may be a little different. I am no doctor but I just want to say western medicine has limited options for us and because this disease is an albatross around my (our) neck(s) I am definitely willing to look outside the box for help but to be clear not in a knee jerk reaction.
So for many, I urge you to look at serrapeptase, nattokinase, a top B vitamin complex, k-laser therapy, autophagy (random fasting at least 14 – 16 hours), exercise – helps me a lot but be cautious, warm lemon/lime/water in the morning, plenty of water, rest, and spiritual walk.
The serrapeptase knocked out 95%+ of the mucus, the nattokinase lowers my heart rate, the laser has helped endurance and O2 levels, B complex is all around good for most of us, the autophagy is easy after a couple of weeks, exercise improves my O2 for the next time frame a point or two, the lemon/lime is a great wake-up and reset for PH in the morning – take it alone and wait 20 minutes before eating or drinking, strive for at least 3 liters of water per day – this can help your heart and BP, and we should look to see if we are an accident from primordial ooze or a Higher Authority created us.
Please ask me any questions – I will do my best to answer… Steve
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