John Weitner

John, I recently posted my experience with stem cell therapy – however I had it done in Colombia not Panama.

so not sure if you are referring to my post or not

John

Hi Christie..

No doubt  social media brings out the worst in people – especially those that do not post using their real names. I  use my real name on any forums or FB groups I join and so far I haven’t been attacked.

I share your desires to increase awareness and especially agree with making organ donation the default option and you have to c…[Read more]

Due to this thread I decided to have stem cell therapy done – which I did last December at a clinic in Colombia.

I was told that it would take 4 to 6 months to see any results. They stated that the improvement would be less inflammation in my lungs. They never made any claims that the scarring would get reduced.

I can state that my inflammation…[Read more]

I finished the book today  and would recommend it to anyone suffering with IPF/ILD. The biggest takeaway for me is the critical importance of exercising – I do exercise but will increase it and work more on the stretching and muscle strengthening. Lose your muscle strength and you get out of breath much quicker.

Grace – I was encouraged by your…[Read more]

I have not had any success finding out where in Canada or the US, this type of therapy is available.

it is available in Costa Rica and Mexico and very expensive which doesnt surprise me , but I would prefer someplace in Canada or the US.

Jerry,

Thanks for sharing your experience.. Based on this I definately want to do it

where do you live?

Hi Rob..

I have a friend in Ontario who had a liver transplant 15 months ago at the Toronto General Hospital – Both he and his caregiver (his wife) were able to get the vaccine and the 2nd dose 3 weeks later.  He did however have to get the shots at the same hospital.

Hi Christie..

You should not feel guilty in the slightest. The advice experts give is when you have the opportunity to get it – take it. What makes this one so different is the huge number of people who are A- symptomatic. You being younger and healthy could very well pick it up – not know you have it,  and easily pass it on to others.

I received my 2nd shot of the Pfizer vaccine on Thursday and it’s a real feeling of relief to have it.  I wish I could say I got it here, but I have a home in Florida and received them there. They are very well organized and efficient – took all of 30 minutes and that includes 15 minutes in the waiting room after getting the shot to make sure you…[Read more]

No..I never ran anything I was taking with the pulmonologist.. They should have provided information about other useful things to take other than Ofev.  Doctors tend to push pharma meds and dismiss natural remedies.

I did a 3 month trial of the Wei products shortly after I was diagnosed last August. For me it is impossible to say one way or the other if they had any benefit.  In addition to OFEV,  and medication for acid reflux, I was taking quite an assortment of other vitamins and supplements prescribed by my Naturopath. As well I started using a t…[Read more]

Mark, I’m happy to hear that you came through this without any damage to your body.

I’m very nervous about getting Covid. I spoke with my lung doctor a few weeks ago about Covid with those with IPF. He stated that my odds of dying doubled if I did get it,  compared to another 67 year old with no underlying conditions.

I’ll be first in line to…[Read more]

Hi Dawn..

Yes I do use some weights for the arms as well as strengthening my legs in the Yoga exercises.. So sorry to hear about your family..this sure suggests PF is hereditary.

Hi Susan..

I use this one:

CAIRE® Hi Flow Stroller®
CAIRE’s Hi Flow Stroller offers continuous flow up to 15 LPM and is the perfect option for hospitals, long-term care facilities and ambulating oxygen users that require high flow rates. The CAIRE Hi Flow Stroller is housed in an attractive leather-finish soft case that is both attractive, dur…[Read more]

My POC goes up to 15! and the O2 is gushing out. I’ll up the flow rate when exercising and see if I can raise my O2 level.

Hi Suzanne

I do have supplemental O2 which I use while on the treadmill.. I have it set to output 3L/min and I still will drop to 77.. should I increase the flow rate ? or should I slow the treadmill speed down so the O2 level stays higher?

Thanks for sharing this Mark – It is really assuring as I was concerned about long term use – especially on the liver.

I have only been on Ofev for 3 weeks so cant answer your question. So far, I only had diarrhea once, and as long as I eat a decent amount of food, I am tolerating it very well.