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    • #22471
      Kathy Phillips
      Participant

      My husband Toby was diagnosed with IPF in 2017.  His pulmonary doctor is at Duke (5th in the nation for lungs).  He is unable to the prescriptions currently available.  He stayed so sick when taking the meds he gave that up.  He has been a member of another great forum in PatientsLikeMe.com which we highly recommend.

      We are proactive about his diagnosis and I do my research.  I want this man around forever and in the 2 plus years he has only gotten better with his energy, his ability to do things he enjoys, and it only takes a few things to create a more positive outlook for you and your family.

      Soooo, our “Healthy Recipe” involved so much.  Attitude first and foremost.  While this is a very scary topic/diagnosis there are things you must do and things you must not do.  Be active.  As reluctant as Toby was to start Pulmonary Rehab he is now loving it – well most days.  He goes 3 days a week where they have a nurse who checks BP/Oxygen and is there for lung and heart patients support.  Get into a routine !

      Ditch toxins from your home.  We ditched all cleaning products, Lysol, you name it.  I took 3 trash bags of chemical cleaners to the animal shelter.  While it’s not good for them the shelters must use it.  We use plant based cleaners.  Ditch all air freshners, plug ins, wax bars, candles.  This stuff is harming our lungs, messing with hormones, and the chemicals used to make synthetic fragrances will be in your lymph system in 32 seconds.  Google “Fragrance”

      A couple months ago I made Elderberry syrup.  I had never heard of this but a friend shared her recipe.  I ordered the berries at Amazon.  Here is just one link I just googled for the info on Elderberry Syrup.  Please research yourself to find other ways of buying it if you won’t want to make it – but it’s so easy.  https://wellnessmama.com/1888/elderberry-syrup/  

      I don’t support that site it’s just one I found that made sense.  It’s really easy to make.  Get local / organic honey or a good quality honey.  I made pint jars and keep it in the refrig.

      Another one to research is the Wolfberry or Goji berry (I planted a small bush last fall so I hope to have my own berries this year).  We drink this juice daily (only 2 ounces).  If you would like more info on that I’m happy to share.    Here is one site on this berry. https://www.webmd.com/diet/goji-berries-health-benefits-and-side-effects

      Again there are more sites so just research.

      Take your vitamin C and be sure to do your hand washing and stay out of the large public gatherings if possible.  I make a spray that I take into restaurants and spray the table and silverware (yes I’m trying to keep my hubby from getting sick).  We always sanitize our hands when we get into the SUV after going in any store.

      Eat your veggies!  Drink lots of water.  Stay positive!

      What are your wellness tips?

      Kathy & Toby

       

    • #22476
      Mark Koziol
      Keymaster

      Hello Kathy, I see you have found your way around the pf forum. That is great. Thank you for providing information on important websites, recipes and other suggestions that are useful to our forum members. Thank you, your sharing is invaluable. Mark

    • #22512
      Rob
      Participant

      I take Zinc, Vit C, Vit D and Oregano Oil daily for immune boosting.  I wear a device called an Airtamer(bought on Amazon)  whenever I’m in public near other people.  It’s supposed to repel germs and I believe it works.  I always have an individually wrapped medical mask with me if I’m in a train, theatre…  I’ll put it on if people near me are coughing.

      Stay well

      Rob

    • #22516
      Mark Koziol
      Keymaster

      Hello Rob, thank you for sharing your experience with the “Airtamer”. Thanks bringing it to the members of the pf forum. I didn’t even know something like this existed. I would have used it this morning while I worked out, there were several people there who were hacking and coughing. To bad it didn’t have a taser component if people who were sick coming to close to you, you could zap them. Take care, mark.

    • #22538
      Regina Bolyard
      Participant

      I just picked up the last necessary ingredient to make liposomal vitamin C. I used to make it on a regular basis, before being diagnosed with PF. Now I have compelling reason to resume this practice. I got my flu and pneumonia shots today also. I want to be as strong as possible before biopsy surgery.

      I’m thinking I might add some glutathione to this batch.

    • #22542
      Mark Koziol
      Keymaster

      Hello Regina, it seems you are quite the chemist. Thank you for sharing your next concoction. I have to believe your vitamin c mix will be better for the body than pills that are manufactured by the thousands. I wish you good health and a quick recovery from your lung biopsy. I had the biopsy done as well and recovered quickly and without complications. The biopsy ultimately properly diagnosed me with ipf. Best wishes, mark.

    • #22595
      Susan Howitt
      Participant

      @obleek

       

      Hi Rob  I also take Vit C daily and prescribed huge dose of Vit D monthly plus a daily doses of  Echinacea, (disgusting taste) but really does seem to work, just fought off a nasty flu type virus before it really took hold.  Must admit I am paranoid about anything with the word zinc, that is what poisoned me (zinc chloride) at work so stupid as it may seem I avoid zinc. in any form.

      Other than that I agree with Kathy, a positive outlook  and healthy eating are  key, I have a lovely neighbour but she wants to do everything for me, no, I really need to do it myself for as long as humanely possible, she does do my shower base as I can’t bend, once she gets going though my whole bathroom gets cleaned, sure she has a touch of OCD but lucky me, I get a shiny bathroom once a week.

    • #22608
      Kathy Phillips
      Participant

      Susan can you share your neighbor?   Are you using toxin free cleaning products?  That is the first thing we tossed out of the house after getting his diagnosis.  NO cleaners with fragrance / chlorine !   Even our detergent is 100% natural so we aren’t sleeping on toxic sheets and wearing the clothes that formerly smelled great……….’fragrance’ is very dangerous for our lungs.

      Toby had trouble with anything that requires bending down / decreasing lung expansion.  Even eating to much causes problems.

      I agree you need to be as active as possible even forcing yourself to do things.  It’s hard during winter even for me but it’s been great for Toby to be in pulmonary rehab 3 days a week.  Keeps that 02 and heart rate going.    Hugs for a great day everyone, Kathy & Toby

    • #22611
      Kathy Phillips
      Participant

      Yep Toby has hiatal hernia !  Good call.  He eats a main meal during the day and snacks for dinner

       

    • #22612
      Mark Koziol
      Keymaster

      Hello Kathy, I was wondering if Toby has been checked for a hiatal hernia. I have a hiatal hernia and the symptoms you describe for Toby, I also have. These symptoms are attributed to my hiatal hernia. I have had a lung transplant and I watch how I eat and how I bend to avoid discomfort. Take care, mark.

    • #22613
      Susan Howitt
      Participant

      OOh no Kathy, keeping my neighbour all to myself  lol.  I have always used everything as natural as possible and Stella shuts the door and opens the window even so, she really does take awfully good care not to do anything that will cause me trouble.

      My lungs are going stiff and that is the problem for me re bending, it cuts off all oxygen and I once checked my blood oxygen after trying to tie shoe laces, 77 !! now have elastic laces  and shoe horn, great, being alone I have to learn to do things for myself, feet have become very useful aid at flipping things up so as to be able to pick them up when the pincher thing can’t.

    • #22615
      Mark Koziol
      Keymaster

      Hello again Kathy. I try to eat small meals with snacks all day long. Sometimes things don’t go as planned though. When I follow that rule I very rarely have discomfort from eating. My doctor will not do anything about the hernia because it is not threatening. She would like for to lose weight and this should alleviate some discomfort from the hernia. Your husband has a good plan and an excellent caregiver. Thank you. Take care, mark.

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