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… Read more

Hi everyone – just sharing a site I recently heard might be of help to pay for lots of different medications.  http://www.PrescriptionHope.com

Linda Williams

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… 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… 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… 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.… 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… 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.… 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… 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… 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… 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… 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… Read more

Hi Mark – Thanks!  I did orientation Fri evening for pulmonary bootcamp and Day 1 today as I had a full day yesterday. I think this will help me a lot as I cannot walk too far without resting.  Also get motivational talk and a lesson re breathing, nutrition, things that matter to us in our endeavor to maintain what wherd we are at least.… Read more

Hi!  This posting made me go lookup my results between 12-2-2015 thru 8-14-2019.  My % of predicted DLCO went like this: 57-52-53% . So I guess that is pretty stable. The respiratory therapist administering the PFT this last time was so helpful in letting me take my time in between each area of tests, he did not push me to just get thru it. As I… Read more

Hi Mark!  Somehow I missed that posting that gave places to get information and support from. I just now used the URL above the photo thinking it would tell me.  Will try info under it in a minute. This website was the first one I found in looking for information and I have found it is easier to manuever on than some other sites. All the members… Read more

Charlene
Yes, I hope that our discussion not only benefited me but his other patients as well.  Seems a lot of Drs refer to him in our area.  Even the cardiologist I saw does. I know the pulmonologist does the six minute distance walk in his office as I saw a lady doing one. I did forget to ask him about that but wonder if they might do at… Read more

Hi Charlene. It’s Linda Williams again. Had a HRCT scan last week with a copy to a second pulmonologist name on it as well as the first pulmonologist name. Don’t know if he saw it or not, but his office called for me to come in that day. It was his order to get the HRCT scan. So I went in and told him how I felt about him just seeming to want… Read more

@daryllong

 

Hi Daryl Long!  Thank you for responding to my question. I take it that the Nonin and Zaccurate are finger oximeters.  I had never heard of these brands but now I have thanks to you. This should seem like an easy topic but appears much yet to be learned. Wondering if your therapist puts on thumb as mentioned by Terry Moriarty… Read more

Okey dokey! Have a good week!! Linda

Hi Lorraine ; keep practicing at home. Won’t hurt anything and will give you exercise. Maybe you’ll still be able to sing Happy birthday and add in just a little harmonica!  Experience of any kind still teaches.   Have a good evening . Linda Williams

Hi Lorraine.  Bet you are coming along with learning to play Happy Birthday. Sure hope so. Did you happen to see on Amazon a Kindle book re playing the pulmonica?  For $.99 I got it to look at. Also bought a paperback book by Dr Noah Greenspan called “Ultimate Pulmonary Wellness”.  There is a FB page by that name as well. There are 12 chapters… Read more

Hi Terry Moriarty.  Thanks for answer. I looked on Amazon tonight and could not find one. Will look again tomorrow. Night, sleep well. Linda Williams

Thank you each for your input. Will keep the one Kathy mentioned in mind also. (H.E.I.O.)  I actually was wondering if anyone would mention the O2 Vibe.  I had seen an ad for it as Costco for $147 to members.  I have a couple of friends who are. But also thought I could just order it myself.  Terry Moriarty it sounds certainly big enough for… Read more

Charlene and Keith, I have another friend that was referred to the same pulmonologist I first saw too and after her CT the first thing she told me was to want to put her on OFEV.  She had taken another friend with her and both thought she should get 2nd opinion. She already has and likes her a lot more as taking her time before… Read more

Hi! This may be a topic already but I have not found it.  I have wanted a wrist pedometer that also shows oxygen saturations ACCURATELY.  I used to use a Fit Bit for pedometer and liked it but the counter will no longer charge, even with a new adapter for charging. So I got a Flex 3 I think it was called but have a large wrist at 8.25 inches and… Read more

@drrandyhall, thank you for your information. I did not think Medicare would pay for laser tx’s. I guess my question is why not????? As for secondary private pay it has told me on other things that it only pays its 20% on items approved by Medicare. 
Linda Williams

Hi Charlene.  Sorry your left thumb is painful. I assumed it is from my OA. Was having trouble opening jars, etc so ordered some handy jar openers from Amazon. This helps and I still use my rubber gripper too. The 2 items from Amazon not quite what I thought they’d be but work.   If it gets too bad and I cannot do ADL’s my GP will order… Read more

Charlene. I live in Ohio. Linda Williams

For any or all of you: Does insurance pay for laser treatment and the different types of therapy you are receiving? You get laser at chiropractor office, correct?  Do you report ALL the supplements you take to a General Practitioner, pulmonologist, cardiologist, etc?  It seems to me they each wonder why I am on so many. Because of a high calcium… Read more

Hello everyone. My daughter gave me some mixed CBD oil in coconut oil. She uses it for her back and neck as she has had Harrington Rods with hooks put through 6 vertabrae and it helps her. She gave it to me to try for my OA neck, shoulders, knees, back.  Recently I have been having constant pain in left thumb and index finger, palm. It… Read more

Hello once again. I am signing in to correct my previous post.  In December, 2008 when applying for life insurance, my GGTP was 383, not 600+.  Normal  0-60. Why I thought so much higher I do not know.  Also my SGOT/AST was 55 and normal 0-40.   Therefore, because of these readings and previous breast cancer history two insurances refused to… Read more

Hello. I was on Lipitor 10mg for some time for total cholesterol until 2010 when I had blood work at the time I applied for some life insurance. Before that 2 of liver enzymes were slightly elevated but a GGT not done as not in basic panel. However they did it and found it to be quite high. So my GP took me off first the niacin I was on and… Read more

Hi Charlene.  Thank you for your note. You will be going to your third harmonica class soon, hope you continue to do well in it!  Linda Williams

Hi Lorraine!  The cardio-pulmonary rehab Dept at Hospital where BBC is has been looking for a teacher for harmonica but has not found one yet.  I did receive my harmonica and books but have not tried yet. Thinking of returning as I can reorder if a teacher is found.  Going to live vicariously in this via you!  Haha.  When  I get to see a new… Read more

Hi Lorraine! I am glad you went back to harmonica class! I have my harmonica & music books but not a teacher. Spoke with cardio-pulmonary rehab & leader for Better Breathers Club. She tried to find a harmonica teacher for their club but has not found. She also has problems getting people to come out for BBC due to their health so for rt now… Read more

Dear Charlene, thank you. Will f/up.re seeing cardiologist & ? pulmonary hypertension.  I am going to ask him also who he refers to for pulmonogist as I want a 2nd opinion re diagnosis of IPF. A friend was just recently sent to the same one I had seen and he tried to get her on OFEV right away too. As he did me.  I really question why he does… Read more

Charlene, will do. Linda Williams

Hi Charlene et al.  I am fortunate that I do not have to work any more, age 74. Diagnosed last year with IPF but extreme fatigue for 2 straight months + cough that wouldn’t stop is what took me to Dr. At the time the flu was going around and I thought maybe I had that. Also had pneumonia back in 1993 and barely could drag self across the hall… Read more

Thank you Charlene and Keith for encouraging me to seek a second opinion. I have been considering this but thought I would wait until after my next HRCT in late September and seeing him early October.  It will then be a year since having seen him.  I plan on asking him why a 6 min walk distance wasn’t done yet too.  I thought maybe I was just… Read more

@Steve Dragoo,. From what I read that you wrote I should take Serrapeptase 3 hrs before/after other meds or food. Is that not correct?  Linda Williams

Hi Charlene.  I.have noticed that I don’t hear from my friends as often either. But 2018 when I was diagnosed with a very busy year. Also got diagnosed with MGUS after labwork & bone marrow biopsy. At first it was questioned if I had a non-hodgkin’s lymphoma, Waldenstrum’s. But bone marrow showed numbers if chains of protein not high enough… Read more