[John Weitner]

I contacted Matrix – they do not offer liquid..

I dont have a pulmonary DR here – Have one in  Canada where I’m from

There I have a tank and hiflo stroller and that;s what I would like here too.

[John Weitner]

I replied twice and my response doesnt show up

[John Weitner]

I contacted Matrix and they do not offer liquid o2

I dont have   a Pulmonologist here but have reached out to two locally and see if they respond.

I am a Canadian and in Canada I have the Caire tank and the hiflo Stroller.  A company comes weekly  to refill the tank. This is what I would like here.

someone passed on this article whch explains why liquid O2 is becoming a thing of the past here in the US..

 

https://www.alpha1.org/growing-scarcity-of-liquid-oxygen-endangers-patients-advocates-say/

 

 

[John Weitner]

Carlo,

I did post my experience a couple of months ago..

 

this is what I posted:

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 has gone down – noticeably so – I cough less and have to clear less mucus than before the treatment. However there hasnt been any improvement in my breathing or a lower need for oxygen – my SPO drops below 90 with ANY activity including slow walking.  I feel my breathing has gotten slightly worse over these 6 months.

I’m glad I did it simply because it was worth trying. The staff at the clinic were wonderful.

Hard to say if it was worth the expense – region of $20K – if reduced inflammation would slow down the progression – then it’s worth doing – otherwise no.

 

[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

 

 

 

 

[John Weitner]

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 clearly opt out if you dont want to donate your organs.

So I’m guess I’m trying to say – who gives a hoot if some are obnoxious on social media – your advocacy is very important and can accomplish much good.

Thanks for your advocacy!

John

 

 

[John Weitner]

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 has gone down – noticeably so – I cough less and have to clear less mucus than before the treatment. However there hasnt been any improvement in my breathing or a lower need for oxygen – my SPO drops below 90 with ANY activity including slow walking.  I feel my breathing has gotten slightly worse over these 6 months.

I’m glad I did it simply because it was worth trying. The staff at the clinic were wonderful.

Hard to say if it was worth the expense – region of $20K – if reduced inflammation would slow down the progression – then it’s worth doing – otherwise no.

[John Weitner]

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.

[John Weitner]

Jerry,

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

where do you live?

[John Weitner]

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.

[John Weitner]

Hi @christie-patient

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.

[John Weitner]

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 dont have a reaction. I had no side effects other than a little soreness on the arm receiving it.

As for a doctors note, a friend of mine was able to get his shots at Toronto General Hospital where he had a liver transplant 14 months ago.  I would encourage anyone in Canada with a lung issue to find out about getting it.

 

 

[John Weitner]

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.

 

[John Weitner]

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 treadmill daily for 30 minutes and lost 20 pounds.  I have seen some improvement – but impossible to know if WEI made any difference.  Their products are too expensive for what they are. If they were say $300 a month I would keep using them.

 

[John Weitner]

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 get a Vaccine as soon as I can..

 

 

 

[John Weitner]

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.

[John Weitner]

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, durable, and easy to clean. It features a digital contents indicator with LED lights that are easy to read with the touch of a single button.

[John Weitner]

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.

[John Weitner]

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?

[John Weitner]

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.

[John Weitner]

Hi Charlene..

thanks for the suggestion about a lung rehab program – there is a place not to far away that does offer personalized exercise programs – I will contact them.

This is the video I use for breathing and stretching – it was put together by the Irish Lung Fibrosis Association..

https://www.youtube.com/watch?v=2UMpPrvLJu4&feature=youtu.be

John

[John Weitner]

Hello Reshma,

I use a wedge pillow and it really helps. Around $40 Amazon..

I want to ask the group what causes the coughing?  My doctor says it is from Acid Reflux. He gave me a med for it and I changed my diet and my coughing has dropped dramatically.  I’m guessing that acid reflux is not the only thing that triggers the coughing ?

 

 

 

[John Weitner]

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 story – you were 64 when diagnosed – that was 16 years ago and you are still with us. I am 69 and would be happy to live another 16 years.

Thanks to those who contributed to the book.

John