New Zoom meeting – taking the bull by the horn

[renee]

Yes, l would be interested in joining you

[vicky-forget]

Hi Wesley

You can count me in for the zoom meetings.  I am not too good at it but will give it a try.

Thanks

Vicky

[bradley88]

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

[christie]

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!

[dianaj]

Have you tried laser therapy?  A few people have mentioned it on here, but I haven’t heard more about it.  Even a doctor on the east coast, can’t remember where, tried it on a covid patient who had lung damage, and it helped a lot.  Other stories like this are out there.

[linda-del-degan]

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.

[christie]

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!

[ehud-kaplan]

Count me in– it is a very good idea! (And thanks for doing it).

[john-k-grubb]

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

[christie]

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!

[daisyd]

I would be interested as well.

 

Donna

[gordon-b-sandmire]

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.

[wesley]

Great, I am based in France, so my time zone is GMT+1, so please let me know what times work for you Vicky and Renee and we can arrange. BR, Wes

[rob1ert-henderson]

I would be very interested,  am finding it difficult to get information from my pulmonologist.

Bob Henderson

[karl]

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.

[millie]

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?

[dianaj]

Have you tried laser treatments?

[vicky-forget]

I live in Ontario Canada

[vicky-forget]

You lift my spirits I am staying positive and was diagnosed in 2015.

[wesley]

Hi Robert, great! What time zone are you?

[arthur]

I I would love to be on the call.

[jaanetmczach]

I would be interested in joining the discussion. Thanks.

Jan

[linda-maguire]

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

[steve-dragoo]

@lmaguire

Hi Linda,

What part of VA?

Stay well…
Steve

[linda-maguire]

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

[ned]

OK for Ned (Arizona)

[john-k]

Sounds good

[linda-del-degan]

Yes I would be interested

[steve-dragoo]

@wranger

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

[dave-minsberg]

I would be happy to join you. I’m in Las Vegas

[aihnow]

I’m interested

[peg]

I would be interested too.
Peg

[abitothat]

I’m interested in joining you all in a support group. Thanks.
Nancy

[william-e-shotts]

I’m interested. Forward details and time.

[marshall]

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.

[dennis-skahen]

I would also like to become part of your ZOOM.  I live in Wisconsin and was diagnosed with IPF in Sept 2021.

 

[captainmidnightme-com]

Yes, I’m interested.

[susan-w-lyon]

I’m interested too. I’m in Berkeley CA

[wesley]

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.

[Mary Black]

<li style=”text-align: left;”>I would welcome Zoom Meetings

[christie]

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

[pauline-korol]

I would be interested.  I’m on Central time.  We need all the help we can get.  I belong to a great support group in Winnipeg.  We are now starting in person meetings again after COVID.

[christie]

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

[wesley]

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

[denise-stogdill]

I’d love to be on the next call.