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Dear all,
I have been thinking about setting up a Zoom call every two weeks (and review the regularity). On which PF sufferers and caregivers can exchange ideas and energy with regard to how people are coping with PF and how they are treating themselves.
When I was diagnosed my doctor simply stated what PF was, that I was suffering from it and pretty much said ‘get on with it’.
Through research and speaking with lots of people, I have devised my own treatment plan, which is evolving all the time. Most of what I do is a form of self care (i.e eating well, trying to exercise regularly, taking various supplements), although I am also exploring self healing techniques, i.e frequency healing, DMSO, meditation etc, which so far have been very good for my breathing and anxiety levels.
I very much came from a conventional family, who relied on conventional medicine (i.e tablets) for healing. The journey that I am has been gradual and coincidental, BUT I feel massively empowered simply by following a ‘programme’.
I thought that in a community forum, we could share what is/ isn’t working for us and hopefully provide others with some ideas.
Let me know if you would be interested.
best regards,
Wes
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I have reached the end of year 3 after being diagnosed. My last lung function test had me at 74% but I feel I am getting worse. I do not take meds as they are too expensive and with unacceptable side effects. I am not on oxygen but have a portable concentrator.
I would like to hear from others.Mark Anderson
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Hi @bradley88 I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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Yes, I would be interested in joining you.
I have just found out about a Vancouver Island support group that meets every 1st Monday of the month.
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Hi @sweetred22 I removed the private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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I would love to join in a Zoom conference.
I live in Houston and even though we have the largest medical center in the world here and both University of Texas Medical School and Baylor College of Medicine are rated as Centers of Excellence, I would rate the care for IPF much the same way you have — fatalistic. Pretty much “okay you have IPF, the normal life expectance is 3-5 years so make your final plans.
Through some of the websites I have discovered that many people with IPF live for 8, 10, 12 years. Since I am 78 if I live another 10 years I will have lived a normal life expectancy.
I am a lot like you — I am a take a bull by the horns guy. I have made the decision to shape my own course of treatment. Am I am interested in hearing from other with the same disease.
Why don’t you pick a date and time and just schedule a meeting.
Thank you,
John
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Hi @jgrubbgrubblegal-com I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
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Hi Wes, Gordon Sandmire here. I attended your first zoom meeting so thought I would be included in your future mtgs but evidently is not the case. I didn’t even get a notice about time or date. What do I have to do to be included? I found your first session very informative so would like to be included.
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I would be very interested, am finding it difficult to get information from my pulmonologist.
Bob Henderson
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Hi Robert. Your situation may be like mine, which I’ll talk about later. My 2 cents: (1) You deserve a top IPF MD. Fire your Pomologist. Seek an MD whose primary practice is treating IPF as criteria #1. (2) Confirm the diagnosis you were given that says you have IPF. Get a sound assessment, particularly if you are not having breathing difficulty or are not coughing a lot. To me, a couple of breathing tests with similar results, accompanied by an explanation of the results is critical before a treatment recommendation. (3) Both OFEV and ESPRIET are tough meds for many, severe side affects are not uncommon. Don’t be too hasty in taking either med if you do not have breathing test results and explanation that warrants taking them.
I was diagnosed with IPF in 2018. Web searching said I had maybe 3 years to live, which got my attention needless to say. I found a super MD who treats many IPF patients. She conducted breathing tests and an MRI. The MRI confirmed lung scarring. Interestingly I had an MRI 10 years earlier for a different problem that happened to show the lower lobes of my lungs, that also showed scarring. Imagine, 10 years! I joined this forum where I read about one individual who had IPF for 17 years already. I became encouraged and I adopted an attitude of “no way is this going to take me down!” After several months and many conversations I started OFEV with the same side affect as you experienced. My MD cut me back to half dose. No improvement, so I got stopped completely.
Today, October 2022, I do not get out of breath frequently (or any more than other fairly inactive 85 year old), I cough a little each day but not severely, so I consider myself mildly affected with IPF, and go on with my life. I consider myself extremely fortunate and am frankly embarrassed to comment on this excellent forum where so many severely affected and brave people are. My heart goes out to all patients and their care givers. And I hope you find yourself in a situation like mine.
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Hi Karl:
I was interested that you said on your post that the lung scarring was there 10 years ago. I recently looked over some old medical results from 12 years ago and noted that the lung fibrosis was there then. However, it was not brought to my attention. Also, 3 years ago it showed up on a chest x-ray I had for something else. Again, I was not told about it. It blows my mind that these doctors don’t tell you all of the findings on tests which are sometimes done for other reasons. They tend to wait until it develops into something and then proceed to treat you for it. Had I been made aware of this years earlier, there are many natural things I would have done to see if they could work in some way. Now, I’m pretty far along and time is of the essence. I’m on ofev since April, having been formally diagnosed in December 2021. Yes, having side effects of nausea, diarrhea and stomach pain but hanging in there. I am 82 and have no other medical problems. Have to use oxygen when exercising, walking and sleeping. No shortness of breath or cough. Lots of energy. It makes me very angry that I was not made aware of this years earlier. Has this happened to anyone else? -
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Wesley,
Is there an IPF support group where you live? I live in Virginia & there are a number of support groups for IPF patients & caregivers that meet monthly & share information, have speakers, and provide support for each other as we deal with this disease. Meetings have been via zoom since the pandemic, but we previously met in person. I find the meetings helpful & informative. I googled IPF to find the local support group when I was diagnosed but my pulmonologist didn’t know anything about the group! Linda
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Steve,
I live in Virginia Beach but the support group covers Norfolk, Virginia Beach, Chesapeake & Suffolk. There is another support group nearby for the folks in Williamsburg, Hampton & Newport News. VCU in Richmond has recently been named as a Care Center, so we now have a Center a couple hours away instead of going 4 hours to UVA or D.C. for those who need/want to be seen at one of the Centers. So far, I am one of the lucky ones & have had no progression of my disease since diagnosis 7 years ago. Linda
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Hi Wesley,
We are similar with our self-care. I’m interested but I am in the Philippines (currently 12 ahead of EDT). Been on PF News over 4 years and previously talked about many subjects. Maybe later on you might want a speaker for example like Dr. Andy – an expert w class-4 laser, has IPF…
Stay well…
Steve -
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Yes please. Great idea!
I’m 2 years in after an accidental and fortunate early diagnosis.
I was unable to tollerate Esbriet, after 5 months struggle, and changed to Ofev which is infinitely better for me personally and, depending on my diet, I usually escape any side effects other than a generalised fatigue.
Looking forward to make contact on Zoom but am CET time (Switzerland). Maybe we need groups organised around time zones.
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Dear all,
I apologize profusely for the outage in contact, but I have been travelling for work.
I suggest we have an initial call on Thursday this week at 6pm Greenwhich mean time. Its very difficult to assess the best time as there are so many locations, so I pinned the tail on the donkey.
If you email me your email address I will add you to the Zoom invite for Thursday.
Best regards,
Wes
p.s we can change times or break off into groups if the time differences become an issue.
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Hi @wranger I removed your private contact details from your post. I’ve advised others in the thread to send you a private message through the forums so that your personal contact info isn’t out there for the public to see. You should get email notifications of those messages, but if not, you can access them from your profile.
We try to stay on top of things here but every once in a while a scammer slips through the cracks and wreaks havoc. Just trying to keep you safe as you forge ahead with this wonderful online support group. Thank you for “taking the bull by the horns”
Christie
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Hey everyone, a note from your moderator here. Please be cautious about sharing personal contact information on the web. Our site is a safe place, but it is open to the public and therefore so are any email addresses that you post here on the forum. You are welcome to coordinate a group with each other, but it would be safer if you sent your personal email addresses to @wranger Wesley in a private message so that he can coordinate with you. Click his name to go to his profile and send a message from there. Any posts with email addresses visible will be subject to moderation and removal. Thanks!
Christie -
Dear all,
It seems I cannot share my email address (which I respect), but was happy to do.
Either way, the first Zoom call is now scheduled for tomorrow at GMT6pm, here is the Zoom link
https://us02web.zoom.us/j/88967710075?pwd=UXVNMjJyTEdFYVJiajRGYmRRUjVuZz09
I hope that works.
Or alternatively private message me here and I will be happy to provide my contact details.
Thank you for moderating Christie, no offence intended.
Best regards,
Wes
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Join us this Thursday at GMT6pm for our second PF ‘taking the bull by the horns’ Zoom call, with our guest Charlie Speller.
Charlie Speller is a highly experienced & multi-disciplined body work practitioner, bringing together a wealth of experience in healing connective scar tissue and a wide variety of other practices.
Have you wondered why scar tissue is created? Have you questioned if we are helping the progression of scar tissue?
Fascia and Fibrin are the two main contributors to the production of scar tissue, which means the more we have of these two things in our bodies, the quicker scar tissue will form within us.Surely this means that if action is taken to reduce these two things, scar tissue is reduced?
Seeking answers to these questions and others will be the topic of discussion this Thursday evening at GMT (Greenwich mean time) 6pm on our second PF Zoom.
Join Zoom Meeting
https://us02web.zoom.us/j/87120657580…
Meeting ID: 871 2065 7580
Passcode: 912034All are welcome, for those of you that want to retain or obtain a sense of control, please attend. Treatment of PF doesn’t have to only be taking a tablet, there are a multitude of things we can be doing to improve quality of life, not just physically, but mentally too.
This session is completely free of charge and Charlie receives no payment for her time.
P.s if anyone wants to PM me, I will give them my personal mobile number if they struggle to get into the Zoom call, I am on WhatsApp, so can be called/ messaged.
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