Forum Replies Created

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  • @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 IPF brothers and sisters.  Time to read more, share more and feel the love!

    I hope you’re on the upside of the health challenges you were dealt late last year.  My admiration of your courage and perseverance endures!  And as always, I send you hugs and blessings, my dear.

    Marsha

     

     

  • 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 longer a candidate to reap any benefit from taking them?  One thing is for sure:  On my next appointment with my Pulmonologist, I am going to bring up why I have not been put on either drug over the FIVE YEARS since my diagnosis and press the subject if need be to get answers.  I expect to be informed about whether these drugs might help me and ANY CLINICALLY PROVEN REASONS why at my current stage of IPF they will not help slow down progression of my disease.

    I feel robbed of the opportunity to use these drugs so far!  (And by the way, I no longer will allow any Doctor to make my decisions for me before he fully discusses what I need to know and answer all my questions so that I CAN MAKE MEDICAL DECISIONS FOR MYSELF!

    Marsha Harris in Pittsburgh, PA

  • 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 night are 3 times more likely.  Got my attention!

    How it works at the cellular and molecular levels was outlined in a manner that even I could follow.  Thank you, @charlene.marshall for posting such an interesting area of research!  ?                 Hugs,  Marsha

     

  • marshaharris

    Member
    December 26, 2019 at 12:08 pm in reply to: The Production of C02 From Various Foods We Consume

    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 impressive knowledge of and ability to articulate about issues surrounding IPF/PF, I believe it was meant to be!

    Here’s to a healthier 2020 for us all!

    Marsha

  • marshaharris

    Member
    October 31, 2019 at 9:07 am in reply to: Gabapentin For IPF-Related Cough?

    @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 spreading the word on this site:  http://summit-chiropractic.com/laser/class_iv_laser.asp

    Dr. Hall @drandyhall as well as Charlene Marshall, @charlene.marshall  are the people who helped me along the way.  Hope this is helpful and God bless you!

    Marsha

  • marshaharris

    Member
    October 8, 2019 at 6:06 pm in reply to: Aloha from Hawaii

    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 view I am experiencing as I gaze out the bedroom’s huge picture  window…and every so often floating in and out of conversing with you…..(who is also feeling floaty!)……

    Enjoy all that inspires you to act and rest quietly  surrounded by beauty that heals and restores your energy!

    Be safe and maybe even book a massage on the beach!?!  (Oops, my bucket list…oh well!)

    Hugs,  Marsha

     

     

     

  • marshaharris

    Member
    September 21, 2019 at 11:06 pm in reply to: Laser Therapy Results

    @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 April 2019:

    Fvc 82, Fev1 86, DLCO 28.

    And most recently during Sept. 2019:

    Fvc 91, Fev1 91, DLCO 33.

    I’ve not been treated with any prescription IPF medications.  I use oxygen at 2 at home and 3 with exertion.  Since 2015 I’ve been sleeping in a bed with my head elevated (I have GERD for which I take Omeprazole every day).

    So, that’s the big picture (much more than you asked for but I tend to go overboard!).  Plus, I now have my PFT history at my fingertips which will be very convenient for me.

    Blessings to you all and I so appreciate everyone’s input on this site.  Thanks again!

    Marsha

     

  • marshaharris

    Member
    September 19, 2019 at 1:24 pm in reply to: Laser Therapy Results

    @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 DLCO up 5% to 33.  I am thrilled that at present my numbers still reflect improvement (or better) even though the number of laser treatments per month is dramatically reduced to <1 since June.

    Thank you, Dr. Andy, for all you’ve done and continue to do for all of us who suffer this dreadful disease.  Blessings to all!  Marsha

     

     

  • marshaharris

    Member
    August 22, 2019 at 11:17 am in reply to: Is this what depression feels like?

    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 incredulous at what I was hearing.  As if she knew nothing about my physical condition in the 2 years as my Dr.!  I was also very angry at her insensitivity and frustrated but was not able to express any of these to her.  I was speechless and wanted to get the hell out of there asap.  Next came terrible times of depression and hopelessness.

    I might be way off but our stories seem to parallel, along with our respective depression.  For me, depression helped me push my anger inside myself instead of expressing it.  Depression turned my anger toward myself instead of my Respected All-Knowing Dr.

    Whoever told you to not sit around and get moving knowing all that you currently do that exhausts you does not understand your needs at all!  I feel your frustration, sadness, anger and, yes, I feel your loss of hope which often manifests itself as depression.  I am so sorry you are going through this.

    There IS hope.  There are doctors out there who will work with you, be interested in how you feel, what your limitations are and take all of this (along with their knowledge of your diseases) into serious consideration before offering suggestions relative to your activity/what you should and should not do.  It is your right as a human being to work with Doctors who take the time to assess and respond to your unique needs.  There is hope for you.  Perhaps you can energize enough to make a few calls to organizations that are centered on the diseases you’re diagnosed with who might refer you to such Doctors.  It took me a few months to reach out and find a suitable Dr. for me and depression no longer comes over me insofar as my Dr. is concerned.  I even look forward to seeing her…

    If you are still ok with your Dr., prayer, talking with your daughter or someone else you trust about your feelings behind your depression might help lift it.  I know how difficult it is to engage with people and how easy it is to isolate when depressed.  If this is true for you, please know that the more you identify and talk about your feelings with those who care for you, the sooner you will have enough energy to act in your own behalf in getting your needs met and speaking up when they are not!

    You are in my prayers, Susan.  I will be happy to send you my email address if you’d like.  Hang on, my dear…better days are coming!

    Sincerely,  Marsha

     

     

  • marshaharris

    Member
    July 9, 2019 at 1:37 pm in reply to: Laser Therapy Results

    @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 when I see him on the 15th.  I really do not want to risk the quality of life benefits I have realized over the last five months.

    On the lighter side, I am looking for part-time work to finance full-body laser therapy treatments…will let you know how it goes if I can find a Dr. to administer it…one never knows!!                  Best regards,  Marsha

     

  • marshaharris

    Member
    July 8, 2019 at 7:04 am in reply to: Laser Therapy Results

    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 two weeks.  I thought the # of treatments would eventually settle at 1xwk and remain as such to continue the positive benefits as long as possible.  I wanted to check with you, Andy, to see if this is accurate.  My concern is to ensure what benefits I’ve experienced to date and timing of future treatments that will support this.  Thank you for your input…I am a bit more foggy recently and as always appreciate your help!  Blessings, Marsha

  • marshaharris

    Member
    June 19, 2019 at 7:01 am in reply to: DLCO level

    @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 system to be far superior over rentals! Thank you again for your comments, Terry.  Best regards and a hug, too…!

    Marsha

  • marshaharris

    Member
    June 18, 2019 at 6:52 pm in reply to: DLCO level

    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 getting since the end of February 2019) I am concerned about my DLCO.  I totally understand your concern about your own.  (Regarding my laser treatment therapy, I might add that my energy level is waaaaay (not a typo!) up from where it was prior to my treatments!!))! Laser therapy is doing  EVERYTHING it promised: (I am running out out of juice on this phone right now and will continue after I charge it, so stay tuned….thanks!).

     

  • marshaharris

    Member
    May 22, 2019 at 6:19 pm in reply to: Laser Therapy Results

    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 scan from January 2019.

    In addition, as I posted previously my PFT indicates that my FVC went up by 6% and my FEV1 went up by 8% in comparison to my PFT from a year ago.

    No change in the amount of oxygen I require at rest or with exertion.

    My pulmonary fibrosis remains  extensive and severe, true.  There is no cure.  However, based on the positive results reported on this site by so many people who suffer with IPF, I firmly believe that laser treatment therapy is so worth trying not just for better numbers but how better numbers  manifest in enhancing one’s quality of life, in my case, elevated energy and a feeling of empowerment associated with being proactive in seeking out and commiting to the potential benefits of undergoing laser treatment therapy.

    I am so grateful to God for leading me to His Angels:  Dr. Hall, Charlene Marshall and all of you who participate on this site! Blessings…

     

     

  • marshaharris

    Member
    March 15, 2019 at 4:05 pm in reply to: Laser Therapy Part III

    Hi, Andy @drandyhall!  Just checking to be sure you received the test results I mailed to you.  If you have, no need to respond!

    I saw Dr. Cebek this morning (#9).  I am feeling so good that I was able to even do some apt. cleaning yesterday (without even needing to raise my oxygen to a higher level during exertion)!!   Of course I am extremely careful not to overdo it and take little breaks if I need it.

    I hope you and dear Charlene @charlene-marshall are also taking little breaks at least to smell the beautiful roses you both are working so many hours each day to nurture and tend.  (I am the coral one, fifth row back, second from the left!)

    Blessings and love to you!  Marsha

     

  • marshaharris

    Member
    March 6, 2019 at 9:33 am in reply to: Natural Relief for Mucus in the Lungs?

    Charlene, @charlene-marshall, I would love to meet you for coffee in Australia! I thought you’d never ask!  Just give me the date and I will be there…maybe I’ll even stay there, who knows?

    Yes, the past 10 days or so I’ve pushed myself too far and it definitely is apparent by the way I feel. Today I made some changes to my calendar that will help.  My top priority is to continue laser therapy in the hope that my energy level will be improved along with my oxygen numbers.  Should that be the case, I’ll feel better.  If not, I am prepared to deal with that too.

    Whoa, it’s after 1am and I need to be up by 6 or so in the morning so I’d best be asleep soon, you think? I’ll touch base with you soon when we will plan to blow this popcorn stand and be off to Australia before we know it!

    Good night and take care, my friend.  You are in my prayers.              Marsha ???

  • marshaharris

    Member
    March 5, 2019 at 8:04 pm in reply to: Natural Relief for Mucus in the Lungs?

    Hi, Charlene! @charlene-marshall.  I am definitely going to eat more pineappple to see it’s effect on phlegm (I don’t have it often) and if it might relieve my coughing which seems to be happening more than before.

    My only comment on this lovely fruit is I believe it is quite acidic (gonna look it up…be right back… I just googled it and unfortunately, it is highly acidic and  would contribute to acid reflux/GERD which is a part of the reason I have IPF.  So, I take back my first sentence and now characterize pineapple as my  forbidden fruit!

    It is possible that those people who don’t have acid reflux/GERD will find it will help mucous and/or coughing.  I sure hope so!

    Not feeling as well as I was but I will see Dr. Cebek on both this Thursday and Friday and then M-W-F the week after.  Yes!

    I hope you and Dr. Andy had some time just for yourselves over this weekend! Oh, and btw, I use whole milk in my American coffee but LOVE expresso, dark and strong, served in a demi-tasse with a lemon peel to touch upon the tiny cup’s rim as I brace myself for a little bit of heaven!  (Actually, I have just one cup of regular coffee in the a.m. and rarely do I indulge in an expresso.  Coffee is also very acidic and, well, you know the rest!)

    I’ll touch base with you and Andy @drandyhall again soon.  Hugs,

    Marsha

     

     

     

     

     

     

  • marshaharris

    Member
    February 14, 2019 at 7:09 pm in reply to: Laser Therapy Part II

    @drandyhall

    Thank you for your message, Andy!  I am so sorry for the chaos and frustration you’re dealing with.  Once things settle down for you (and I totally mean this) I’d like to know more about your call to Dr. Cebek.  I send you beautiful thoughts and pray for God’s Blessings upon you.  ?????Marsha

  • marshaharris

    Member
    March 2, 2019 at 9:04 am in reply to: Laser Therapy Part II

    Happy Friday, Charlene! @charlene-marshall

    So, what would you like in your coffee?  (I’m pretending you’re seated across from me…!)  Thank you for your sweet and encouraging message yesterday.  I felt warm fuzzies as I read it…  I hope you will set aside a whole day this weekend for yourself…perhaps we can have coffee again before you leave for a 1.5 hr massage!

    Hugs right back atcha, Charlene…

    Marsha

     

     

     

  • marshaharris

    Member
    February 28, 2019 at 1:41 pm in reply to: Laser Therapy Part II

    Good morning, Charlene and Dr. Andy! @drandy Thank you for your encouraging posts….I always feel uplifted when I read them!  So true, Andy, about Pulmonary Rehab.  With the energy it takes for me to even get myself there, I usually feel like going right back home!  The potential benefit, however, is worth it.

    I will keep y’all in the loop and I so appreciate your kind interest to help.  Charlene, I’m about ready for that coffee you mentioned.  Meet you at the corner cafe in 15 min.??! Blessings,   Marsha                ???

     

     

     

     

     

  • marshaharris

    Member
    February 27, 2019 at 11:15 am in reply to: Laser Therapy Part II

    @drandyhall @charlenemarshal

    YAY!! Great to see you are back, Dr. Andy!  You were missed by all. Thank you and Charlene for the many hours you spent trying to keep things moving in spite of all the crazy happenings of the past 13 days.  I hope you got some rest and are weighing in on the positive side of your respective IPF scales!

    I am happy to tell y’all I had my first laser treatment with Dr. Cebek last Friday and my second yesterday. He and his staff are wonderful!  I go again tomorrow morning.   Next week we are doing just one session on Friday as the Dr. will be out of town until then and we’re picking up again with 3 sessions the following week. Just one or two more things and then I will share the early changes I’ve experienced pretty much from the start of my treatment!  Sooo….Andy, I received test results today that I will mail to you and Dr. Cebek.  As I haven’t yet registered for the laser study yet, I will do so tomorrow.  Please advise of anything else I need to do.  Thanks!

    Now on to more good stuff: Dr. Cebek spends a fair amount of time (after his nurse, Karen, finishes working with the laser) applying accupressue up and down my cervical and thoracic spine.  I am in less pain when I leave each session than when  I walked in an hour before!  I have stayed out of bed during the day and in 4 out of 5 days, I have had more energy to get where I need to go and stay out more than 1.5 hours without having to go home due to pain, trouble breathing and low energy.  Of course, I continue to use my oxygen (at 4) and my rollater whenever I go outside of my apt.  Had a long day today with my first pulmonary rehab session and another dr. appt. as well.  Not feeling as well as I was earlier right now, so I’m ready to sleep and greet tomorrow morning with gratitude, hope, one cup of coffee and my third laser therapy treatment!  I’ll keep you posted… Blessings and hugs,

    Marsha ???

  • marshaharris

    Member
    February 8, 2019 at 1:28 pm in reply to: laser therapy

    Greetings, Andy!  Thank you for your feedback relative to your conversation with Dr. Cebek.  I, too, feel he is the right Dr. for me.  I just called him to ascertain the cost of my sessions and adjustment of my thoracic spine. He was with a client and will call me back sometime this afternoon!

    Yesterday I requested the results of my original and my latest CT scan as well as results of my first and my latest PFTs.  As soon as I receive them I will fax them to you and submit my registration to you online.  Does that work for you?

    I certainly hope your snow-shoveling days are over and the temperature has risen enough that you can actually enjoy your beautiful outdoors!!  I’ve never mentioned that I lived and worked in San Francisco from 1979 to 1989 and still feel enamored when I even think about the richness of the Bay Area’s outdoors.  I could go on and on!

    Dr. Cebek just called me back.  His rate is $60 per treatment and his plan is to do 3 treatments Week 1,     2 treatments Week 2 and 1 during Week 3.  He added that if treatment doesn’t show any benefit by the 4th week, he would stop future treatments.  I’m not sure what I think about his plan.  Do you think it’s ok?  Thank you for your kind guidance.  Blessings,

    Marsha

     

     

  • marshaharris

    Member
    February 6, 2019 at 10:19 pm in reply to: laser therapy

    Hi, Dr. Hall and thank you for your feedback on your call with Dr. Cebek.  I have no problem with having my thoracic spine adjusted.  And I agree with you, he seems to be a kind man.  I will call him on Friday for information about the cost of treatment and how many times a week I will be treated.

    Question:  My most recent tests were done around 2 years ago. I  have an appt. with my Pulmonologist this Thursday and will ask her to order tests that are up to date if you prefer that the results I send you are current.  My latest CT results are from 3 months ago.  Will you need more current CT results?

    You have been so attentive  and helpful to me!  I am so grateful to you.  Thank you!  Marsha ?

     

     

  • marshaharris

    Member
    February 6, 2019 at 7:36 pm in reply to: laser therapy

    Charlene, thank you for your support of and enthusiasm for me every step of the way toward becoming a participant in Dr. Hall’s Study!                       You are a blessing in my life, my dear!  Marsha ???

     

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