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  • My life has turned upside down

    Posted by rumana on November 16, 2022 at 8:32 am

    Hi everyone …

    I am new to this forum and I have seen so many people dealing with IPF are helping each other so I thought I would share my story and maybe I would be able to get some help as I am completely lost right now. It will be a long post so I do apologize for that.

    My mom is 75 years old and I came to know she has IPF ( stage 4 ) last year . We are from Bangladesh and I have been living in Australia since 2012 after I got married .She started to have dry persistent cough in 2014 .She went to see one of the best pulmonologist in Bangladesh .He did HRCT scan and other tests and his version was there was nothing wrong with her , its just some inflammation in the lungs and maybe when she reaches 80 years she may get breathing problems and gave her some medication.From Australia I spoke with the pulmonologist over the phone to find out more because my only concern whether the inflammation was anything serious like cancer .He assured me that it was nothing serious .She used to start having dry cough once in a while the pulmonologist gave antibiotics ,steroids which stopped the cough and it kept going on like this .She came to visit me in Australia couple of time where she was mostly fine so I didn’t bother to take her to see a GP here and also I knew it was nothing serious .

    Last year she started to have dry cough again and some clubbing in her fingers ( I don’t recall seeing the clubbing before ).Took her to see a GP in Australia .He examined her ,took history and gave an urgent HRCT scan .From this scan we came to know that she had IPF since 2014 but the treatment wasn’t done properly all this time and I came to know this disease is as deadly as cancer which was my worst fear . I took her to see one of the best pulmonologist in Melbourne where I live .He did the lung function test , walking test .Her lung capacity is 60% but during walking the oxygen intake in her lungs os around 34% which is very serious .She doesn’t need oxygen support yet . In the span of 1 year we did 2 scans and in 6 months time the second scan showed the scarring is progressing which is quite extensive .The medications which she was having all these 7 years was medicines for Asthma and according to the pulmonologist which caused more harm so he stopped all those medications and inhalers as she does not have Ashthma .

    My mom is not a citizen in Australia so her medical treatments are not free and treatment of IPF is quite extensive .The anti fibrotic agents are very very expensive but the scarring has progressed so rapidly that at this stage even she had free medical the pulmonologist doesn’t want to start on those medications because that won’t help much and the side effects may deteriorate her health more as she is a very weak person .If it was couple of years back then maybe he would have tried .She can’t take any medications which are for IPF , she just takes Codeine syrup 5ml t suppress the cough when she needs in extreme and if coughing gets out of control then amoxicillin , predinsolone .We just have to follow up with the pulmonologist every 3 months that’s all .

    I am just feeling helpless .Anyone is this forum who is also facing same situation like my mom’s like not able to take any medications ? I am thinking of getting second opinion and maybe give homeopathy a shot .Anyone has any idea whether homeopathy at this stage will be able to work ?

    I also heard good quality manuka honey dissolved in water in microwave and the using it in nebulizer works to slow down the scar and cough.There have been some success stories on that .As my mom is diabetic it will not be a issue if she inhales the honey will it ?Anyone using this treatment ?  I am just trying to hold on to anything I get to make my mom feel better and feel so guilty at myself .Last few months she was hospitalized with pneumonia ,then she had COVID and last few days she had severe cough which she is recovering now .I am just lost .If the anti fibrotic agents are not safe for her so then there has to be something and I am just searching for an answer ….

    I hope I would get some informations that would help my mom .Again really sorry for the long post

    manzurul-khan replied 9 months, 2 weeks ago 4 Members · 4 Replies
  • 4 Replies
  • gumbo

    Member
    December 8, 2022 at 4:14 pm

    Dear Rumana, Don’t be apologetic about your long post.  I read it all, and I could really feel your concern and love for your Mom.  I wish for you that she will remain comfortable.  I’m the same age, 74, and my PF came crashing into my life in April of this year.  I guess that I have a fast growing fibrosis as my condition is worsening quite rapidly, and I’ve come to find peace with myself, just knowing that there is no cure, and in my case, the end is not far away.  I’ve made my peace with everyone. I have 3 children and 5 grandchildren, so it’s not easy to face the future.  But I’ve found great peace in my relationship to God, and I don’t fear death any more.  I hope my post doesn’t upset you.  I wish and hope for the best for you and your Mom.  Nobody want to leave this earth (except maybe Elon Musk) but we all must leave.  So that’s my story and maybe not so helpful to you.

    But in your post, you neglected to say if your Mon is on oxygen therapy.  If she has an O2 saturation of  34%, she must get supplemental O2 or she will develop serious problems with other organs like her heart, brain, kidneys, etc. I hope that you can get help in paying for this, because it’s very important.

    Good luck and God bless.

  • dianaj

    Member
    January 17, 2023 at 8:47 am

    Sorry about your mom. Make sure she does breathing exercises. There is a device called The Breather. You can get it on Amazon. She should do that twice a day..about ten times each time. There are also important supplements like vitamin D, zinc, melatonin, and omega 3’s. Cordycep mushrooms help too. There is also an enzyme called serrapeptase and nattokinase that may help remove some scarring, and help with coughing. But some people have stomach issues with it. THe other thing is see a chiropractor…they do laser light therapy, and soft tissue massage, which is beneficial.

  • christie

    Moderator
    January 17, 2023 at 9:21 pm

    As a reminder to all reading this post, please check with your medical team for starting any supplements, OTC or naturopathic treatments, especially if you are 1. diagnosed with an autoimmune disorder 2. immunocompromised, or 3. taking any other medications.

    Antibiotics are contraindicated with the use of OFEV. My mom had to take mega doses of antibiotics after her appendix ruptured, and she had to completely discontinue OFEV while she was doing that. This whole chain of events lead to the acute exacerbation of pulmonary failure that almost ended her life. Take it from me, supplementing or taking things that change your immune system is something you should experiment with without close supervision from your doctors.

    There is an extensive thread on the use of serrapeptase and nattokinase here if you want to read up on that, especially Steve Dragoo’s contributions, but again, do not start anything without talking to your doctors and/or pharmacists.

  • sheila-d

    Member
    May 16, 2023 at 6:26 am

    Rumma
    Please don’t heat honey in microwave research how best to melt it i use normal saltine water in melts with out having to heat it. I have used it for about 2 months my ct scan from 3 months ago(slight growth for the last 1 1/2) shows fibrous to be stable but no results on fibrous at this point

  • manzurul-khan

    Member
    May 16, 2023 at 4:27 pm

    Hello Rumana,

    I am so sorry to hear about your mom’s condition. I am also from Bangladesh and now live in the US since Jan, 1978. I am almost 70, was diagnosed almost 3 years ago and although my CT scans every 6 months show some progression, I am fortunate that I am very stable and work full time. I have no desire to quit anytime soon. I am on OFEV which I believe is helping me. Good news is OFEV is available in Bangladesh under a different name. It costs about a dollar (USD) a pill It has the same ingredients. Bangladesh has quality pharmas which are FDA approved. If you want the name of the medicine, I can get it to you.

    Rumana is the name of my wife’s niece, quite a popular name. I have many BUET friends in the Melbourne area. If you want to chat with me on WhatsApp, I can provide my contact later. There are things I learned which have helped me immensely. Never underestimate the medicinal benefits of food, herbs, spices and extracts. I take EGCG, Vitamin D, Zinc. I also changed my diet completely. No more acidic food or inflammatory food for me. Mostly alkaline based diet. I quit coffee completely which was hard for me. I substituted rice with quinoa, lots of vegetable, salad, avocado, fish and lean meat. I believe all these are helping me. Above all, keeping a positive outlook toward life and being connected with our source have helped me calm down and get much needed sleep.

    I wish the very best to you and your mom.

  • walt-andersen

    Member
    June 8, 2023 at 11:28 am

    I am new here and to pf, having been diagnosed 3 weeks ago.  My followup to the CT scan that found the scarring is not for another month, and that concerns me.  On one hand, maybe it’s not that serious.  But on the other hand if there are meds that can lengthen my life, I want to get started. I feel fine, can breathe normally, but reading about 3-5 years left is pretty sobering.  Has anyone else had a similar story to tell?

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