I’m not sure but his situation is the same as mine.
I’m starting my 8th year of PF, on oxygen 24/7 and in the last year my belly is bloated most of the time and sometimes hard.  I’ve found some of it is my diet, as I want to enjoy meals with my husband to add to our memories.  I think the medication itself has it’s own toxins that you need to… Read more

I noticed the last post was in 2022, is there still a forum for caregivers & spouses?

In the last two years I’ve become a walking, human puddle.  I’m always hot and have to dress in layers, so I’m always able to strip down to just a tank top.  This is happening now throughout the year as well.  I literally will be fine/dry one minute and then my head feels like it’s on fire, my face is red and I look like someone is holding one… Read more

Has anyone or is anyone currently taking NAC supplements and do you find it’s helping?

Usually the 7ft part, every 2 – 3 weeks…or when it starts to irritate the skin on my cheeks…that seems to be a sign to change.  The 50 ft. part about every 2 – 3 months..probably should be sooner.  I’m trying out different kinds.  One that said it didn’t tangle/knot up so quickly.

No @lwaldschmidt , I have PF. Diagnosed in 2015. Told I had a year…husband very suppportive then…but now I’m in my 4th year and for the last two, we’ve been separated.

We’ve tried getting back together and seeing only each other, while he lives at a different address. It just never lasts and the words we both say from frustration and fear… Read more

Has anyone else lost their spouse because of this disease?

They just couldn’t cope with being on the other side, watching the person they love, dying.

The limitations of the things you can now do because you’re on oxygen grows frustrating and depressing for both.

 

 

Same suggestion.  I use my Nexus walker.  My liquid oxy tank on the seat, along with my purse with one of the straps  wrapped around the handle area.  I have a water bottle holder hanging from one of the sides.  When I go into a store where there will be a cart, I leave the walker in the car and use the shopping cart for personal and shopping… Read more

This wife started a group on line and wrote a workbook as well.  She and her husband Tony are lovely and very helpful.

https://transplantrogues.com/ 

 

Thanks Steve, I’m going to look into ordering serrapeptase

Glad to try different suggestions and see if one helps me.

I have been taking Clear Lungs, a Chinese Herbal in capsule form for 3 months now and can’t say I’ve seen a difference.  Still hoping to hear about the laser treatments with the chiropractors.  Loved the 70% chocolate idea for dry cough.  Just so fantastic to see so many ideas being suggested for possible relief of all kinds of symptoms. … Read more