Marsha

@charlene-marshall

Good morning, Charlene!  Mixed responses to this issue, for sure!  Next Friday my goal is to get some answers about these two meds from my Pulmonologist, someone I respect and trust.  I am happy to get back to you with what I learn!

I’ve been scarce on this site and miss the “closeness” of my prior involvement with you and my…[Read more]

I was diagnosed with IPF in 2015 and the only comment my pulmonologist made when I asked about Esbriet and Ofev was, “Oh no, they have terrible side effects.  You don’t want to get involved with them.”  Now in 2020, I see a new Pulmonologist, and he has not mentioned these drugs either…  Is it possible that since I have severe scarring, I am no…

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Glad I listened to this…very interesting and do-able!  So, it’s 7 hours of sleep for me consistently every night.  Very simply put, the subject research suggests that those who have PF and sleep under 4 hours a night are 2 times more likely to experience further fibroid activity in the lungs.  And those who have PF and sleep over 11 hours a ni…[Read more]

Happy New Year, Charlene!  Your sneak peek re: ‘CO2 production from foods we eat’ came as an extremely interesting revelation to me and I look forward to reading your full article on Monday.  Will definitely have more feedback for you then…

What a wonderful opportunity for you to sit next to and engage with Noah Greenspan!  With your im…[Read more]

@tomp

Hi, Tom!  Don’t feel like the Lone Ranger in finding where to post for more info about laser therapy…it’s confusing at first!  Having successfully undergone laser therapy treatments for almost four months in 2019, I am happy to share the link to access laser therapy info on the website of the wonderful doctor who is responsible for s…[Read more]

Aloha, Charlene!  You are so sweet for sharing your Hawaiian Awe with us!  Love your pics!  As you described your morning resting in bed while drinking coffee, my immediate thoughts were, “damn, I want to be there, too, drinking Kona coffee and relaxing in the bed right next to yours…feeling buoyant from the lusciously beautiful panoramic vi…[Read more]

@drandyhall @let666 @steve-dragoo

Thank you, Andy, Steve and Leontis for your kind comments regarding my new numbers!

Leontis, you asked about my numbers when I was diagnosed in 2015:

Fvc 87, Fev1 97, DLCO 46.

After lung surgery and chemo in April 2018:

Fvc 76, Fev1 78, DLCO 38.

I started laser treatments late February 2019 and did a PFT in…[Read more]

@drandyhall

Hi, everyone!  Time to share my numbers for my latest PFT done a few weeks ago.  Please note that I began treatment February 2019 according to Dr. Andy’s protocol and for the last two months have been treated once a month.  Current numbers are as high or better than those I posted in April:  FEV remains at 91; FEV1 up 2% to 91, and…[Read more]

Susan, first, I send you warm hugs and total understanding of how you must be feeling.  Depressed?  Absolutely.  Angry?  I would certainly think so!

When only one month after chemo and continuing IPF, I saw my Pulmonologist who told me to stay active all day (no laying down) and use my bed only to sleep (“dance around and play” she said).  I felt…[Read more]

@drandyhall  @charlene-marshall
Thank you, Andy, @drandy for sharing your thoughts on this “new territory” (good call!) of long-term laser use.  You always have a way of clarifying the big picture and then addressing the necessary details within it…surely one of your many gifts that I so admire!  I will address the situation with Dr. Cebek wh…[Read more]

G’morning, Andy @drandy and Charlene @charlene-marshall!  It feels like forever since we’ve been in touch and I hope you are both doing well.  My reason for posting is confirmation re laser treatment protocol.  Dr. Cebek (who has been wonderful since I started seeing him last February) has recently started scheduling me for treatment once every tw…[Read more]

@tmoriarty

Terry, I so appreciate your post!  Makes me not quite so concerned about my DLCO at 28! I was diagnosed in 2015 and use oxygen at 3-4 24/7 at present.  I us the Inogen system for all my oxygen needs and my rep’s name at Inogen is Fred. He is great and I recommend him when you call for your own system! Just ask for him! I find my s…[Read more]

Hi, Liam and all…

I, too, am concerned about a decrease of my DLCO (I call it my “output” number) from 38 to 28 over the past year (my other numbers which I call “oxygen input”) went up to 78 and 82.  While I am happy about the ones that went up (which are a direct result of Dr. Hall’s @drandyhall) laser therapy treatments which I’ve been…[Read more]

I am so pleased to report that my recent PFT, 6-minute walk and CT scan indicate that I am experiencing every single benefit of laser therapy since I started treatment last February! And I have the tests to back it up!!</p>
The Radiologist’s findings unequivocally state that all aspects of my CT scan (of just two days ago) are unchanged from my CT…[Read more]