Linda Williams

Hello Charlene,

I have wondered about my skin issues, mostly more spots that are pinkish in color, dry and hardened. They also tend to grow some but part of top comes off when I rub it. No redness around it, on arms. Have noted white dry scabby areas on thighs as well. Skin dryer than usual and does not respond for as long to lotion…[Read more]

Dearest Charlene, am so very glad you got to go to Hawaii!   Beautiful photos!! Enjoy and breathe easy!

Linda Williams

<p style=”text-align: center;”>Hi Mark and Wendy.  Thank you both for your comments regarding my issues. I am glad Wendy that you have a good husband who helps you. Have you ever tried having him rub some CBD oil on your back and perhaps on chest as well?I am seeing it advertised at Health stores in our area and even saw in lockup box at a good…[Read more]

Hi Mark ( @mark-koziol )

I was diagnosed with IPF and possible non Hodgkin’s lymphoma of Waldenstrom’s in May, 2018. The latter was discovered by the pulmonologist when he got results of autoimmune land back, as the IgM was elevated. Do he referred me to a hematologist oncologist for follow up with that. As bone marrow results were not elevated…[Read more]

Mark Koziol – sorry, I forgot to say for OA pain only take Naproxen 500mg once about 3 times a week if rest or CBD Oil does not take care of pain.

Linda Williams

Hi Charlene,

Will be thinking of you more than usual today. 🙏🙏💕

Linda Williams

Hi Jim Nox

I wish you good results from Metformin. Had recently read an article that it was being trialed for PF.  A drug so much cheaper than Esbriet or OFEV.  Please let us know how your results come out using it.  How long will you be on it before tested again?  6 months? 1 yr?

Praying all goes well. Linda Williams

Hi again Charlene.

Still on topic of reduced DLCO.  I received a call today from a local hospital pulmonary rehab Dept.  He told me they’d received an order from my Pulmonologist for rehab. I explained I just am starting my 3rd week of online rehab so could he hold the order until after I finished the 6 weeks? He had my latest PFT and told me I j…[Read more]

Hello Leslie – it just seems amazing to me that we can talk to people from all over the earth!  Sounds like you are more like a 50 year old than 70!   Good for you!  Keep on keeping on!  (I am 74 but have never been a big exerciser. Trying to change that now.)   Linda Williams

Good to hear from you again Lorraine! So glad you did your rendition of Happy BD for your granddad!  YES, I think pulmonary rehab bootcamp is DEFINITELY worth it !!! Finished day 9 today.  There was a discount coupon  again yesterday. 50 new members recently.  I think same instructors as you would have in NYC without the traffic. www…[Read more]

Hi Mark! Thank you. So glad you are getting back on routine and feeling better.  I too know I need to change my diet but not easy to do. Have lost between 25-40 lbs more than once but always slowly gain it back. That was before dx of IPF. I did find eating on a smaller plate helped a lot. And no seconds. Don’t do seconds now but need to make…[Read more]

Hi Lorraine – I do not know what affected my DLCO or FVC  numbers. One thing is I decided not to let administer of the test rush me. Last year I was a mess doing the PFT. The young guy seemed to just want to get thru the test and I felt rushed.   This year I decided between the different parts I would not start the next one until I felt ready. Ho…[Read more]

Hi Nan – re frequency of PFT’s, My pulmonologist has done a year apart and told me that next year he probably won’t order a High Resolution CT Scan but just the PFT to compare with.  I have read others saying they do every 3 months.  So I guess it varies. As I don’t want a lung transplant I think he will be more conservative with me. The PFT I j…[Read more]

Hi Charlene – yes, I am feeling better physically with a bit more energy doing bootcamp. O2 sats   yesterday between 95% down to 90%. Room air.   I think of you often and wondered if you have done respiratory rehab yourself  with working & fatigue?  Starts slowly and keeps progressing, did Qigong yesterday, Yoga breathing day before plus worki…[Read more]

Mark – I am sure you knew who I was speaking of when I said Kate Bageshaw. But her name is Katie Bagshawe.  Linda Williams

Hi Mark ( @mark-koziol) – I have had an interesting morning listening to raremark  interview RE  IPF and reading Twitter remarks by Kate Bageshaw here on pulmonary fibrosis.  She is so interesting and informative.

I have truly had no schedule and rarely did any exercises other than in daily life work as an RN, mother, and employee in daily li…[Read more]

Hi Charlene – yes, I am trying to be proactive for my health. This rehab starts slow and progresses over the 6 wks. The Bootcamp is being offered again at 50% discount making it under $50 for 42 consecutive days lessons and strengthening not only Pulmonary but also legs, chest, arms. Lessons in nutrition, meditation, encouragement. I look forward…[Read more]

Hi Charlene, you are welcome. I do get a lot of info belonging to this group. BTW, I did my own 6 minute walk but not with distance today – with bootcamp here in my LR walked a full 6 mins at times even lifted knees and at other times my arms upward.  Started at 95% O2 finger oximeter, with motion starting down to 94% and stayed there until right…[Read more]