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[Charlene Marshall]

Hi Jim,

Thanks for starting this topic and raising such a good question!

I unfortunately don’t have too much personal experience which would shed some light on your question, but hopefully someone else might. I’m curious when they say that it is “post-inflammatory”, does this mean the PF developed following an inflammatory response in your body (ie. an illness or infection)? I have heard of this happening, and various inflammatory diseases that might cause it but I’ve only heard of this based on others’ experiences, not from a medical professional so I really don’t know for certain. Do you have a good rapport with your GP? If so, I’d be inclined to call him or her back and ask for a referral to a pulmonologist. Only because any mention of PF warrants a specialist, in my personal opinion.

Another person I’d ask for more information on post-inflammatory PF is Noah Greenspan. If you google him, you can find his contact information online. He isn’t an MD, but he does know a lot about PF and I believe has a highly specialized degree to do with respiratory health.

Not sure if this helps any? I’d be curious for you to share what you find if you come across anything interesting….

Cheers,
Charlene.

[jimr]

Hi Charlene

I make it a bit hard for doctors because I move around a lot.  I retired 5 years ago and travel full time in my RV.  It’s a great life but things like medical care are a bit tough because I don’t stay in one location.  I’ve been feeling weaker and weaker for about two years now. I thought it was a heart issue.  I spent this last winter in McAllen TX and that is where I saw a general practitioner that referred me to a heart specialist at McAllen Heart Hospital.  After a lot of testing, to include blood work, CT scan, stress test and more, the heart doctor said that I have and irregular heart beat but it is my lungs that are my problem.

I never insisted on being referred to a pulmonologist.  I don’t blame the general practitioner for this.  He had no history on me.  In Nov I have a follow up with the heart doctor and will see if he will refer me and if not I will go back to the GP and insist on a referral.

Thanks for the reply

Jim

[Charlene Marshall]

Hi Jim,

Thanks so much for your reply, and my deepest apologies for the delay in getting back to you. I was spending time away from my computer at my cottage, soaking in the last few days of summer. I hope you’ve had a nice weekend as well 🙂

Your life and moving around in your RV sounds so fascinating, and something I’d love personally. That said, I can see why consistent medical care would be tough for you. Sorry to hear of your increasing weakness, that must be both frustrating and scary, especially when you live such an interesting life of travel and moving around. Did you ever have heart issues before to assume that is what it might be now? Sorry to hear of the heart irregularities, I know that can be scary as I am likely to develop pulmonary hypertension in addition to IPF as a result of my heart working too hard due to my poor lung function. What did the hospital suggest for you after determining that it was your lungs? I know you said you didn’t insist on seeing a lung specialist, but I’m surprised they didn’t encourage you to do this even for a baseline assessment. Good idea to assist in November, even it is for the sake of determining your baseline from here and the progression (or lack thereof, hopefully) of your lung disease.

I have to ask, because I would find your life so fascinating: where has been your favourite place to live in your RV?

Chat soon and thanks for your reply.
Charlene.

[jimr]

“I have to ask, because I would find your life so fascinating: where has been your favourite place to live in your RV?”

I stay in the southwest now.  There is more open space and the sunsets are the greatest form of entertainment I can think of.   I have found it very interesting that if I am at some out of the way place and there is absolutely no human noise. . . after a day or so you start to her things that you would never have heard before.  You can hear bees that are buzzing around flowers from what would seem like an incredible distance away.  Nature sort of sings to you.  It was always there, it was just drowned out by human noise.

Jim

 

[Charlene Marshall]

Hi Jim,

Thank you so much for getting back to me and answering my question! It is one I was really hoping you’d answer, based on my love of travel and seeing new places around the world, so thank you 🙂

Sunsets are one of my favourite things to experience too, and I’d much rather go down to the beach (in my case) and watch the sunset then do anything else on a warm summer evening. So glad you’re enjoying those, and I bet they are stunning in the southwest! I also love the concept of hearing nature once the sounds of humans drown out. That must be so refreshing for you, as we humans make a lot of unnecessary noise I think. Sounds absolutely wonderful, and I am glad you are having this experience. Thanks for sharing a little bit of it with us.

Wishing you well!
Charlene.