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    • #13615

      This topic thread will be used to add healthy recipes for solid foods. Feel free to share your favourites! 

    • #19139
      Marianne
      Participant

      Does anyone with ILD disease follow a vegan diet?  Because I was overweight I began eating vegan Sept. 2018 and have lost 40-41 lbs.  I feel better.  I would love to lose an additional 10-15 lbs.  I am not a fan of some vegan foods so I don’t eat those items.  I know this is off topic.

       

      Marianne

      • #19169
        Mark Koziol
        Keymaster

        Hello Marianne, I am not a vegan but I am sure the same principles apply to losing weight. When I needed to lose the 80 pounds for transplant I used to eat 5-6 small meals a day. I never wanted my stomach to be to full as this impacted my breathing. I basically cut out breads and flour most days of the week. I had a protein and usually a fruit or vegetable with each meal. This is very possible even with a vegan diet. I know your last 15 pounds will be the hardest to lose. If you stick with your 5-6 small meals a day plan and exercise I know you will lose it. Your metabolism will improve. Keep your breads and flour products to a minimum. Drink the maximum amount water you can a day as well. I hope this helps. This is basically a generic healthy living plan but it worked for me. Keep in touch, tell us how this is going. Mark

      • #19170
        Mark Koziol
        Keymaster

        Hello again Marianne, how are you feeling after the biopsy? I hope you are doing well and without pain. mark

         

    • #19180
      Marianne
      Participant

      Mark ( @mark-koziol ) –  You must have a much higher pain tolerance level than I do.  The VATS was only the 2nd time I have ever had surgery.  The first surgery I ever had was an emergency C-Section in my mid 30’s for the birth of my second child.  The day of the VATS surgery was a really rough day.  Surgery was about 45 minutes late getting started.  Surgery took about 1 1/2 hours plus they did a bronchoscopy.  The scope did not show any nodules on my trachea.  So that was great news.  They told me when I was in recovery I told the nurses that I got hit by a truck.  I remember telling them that when I got into my room.    I was so glad when my kids said they had plans for dinner. I have 2 adults kids who live in different states so they don’t see each other very often.  I was exhausted.  The first 24 hours I was in constant pain.  I thought about you saying that you had no pain only mild discomfort.  I fought the nurses on giving me narcotic pain meds.  I finally agreed to the Oxy.  I am still in a bit of pain but try to stay with over the counter meds during the day and take the Oxy at night.  Today is better.  The past 2 days have been rough – constipation and pain.  I am not doing as well as I need to on the breathing machines – Vibra Pep – is good.  Voldyne is not as good.  My friend who is a nurse said I need to get those numbers up higher.    At least I am not coughing as much as before surgery.  The surgeon said I should have results in about 10 days.  So I still have a bit to wait.  She will call me with the results as I don’t go back for staple and stitch removal until May 28.  On May 24 I have an appointment with my pulmonary doctor.  I am sure we will discuss which ILD and treatment plan.  My oldest child who is a DVM talked to a friend who referred her to a cardiothoracic surgeon.  That surgeon knew of my surgeon.  Guess that aren’t alot of cardiothoracic surgeons in the US.  He told her my surgeon was very good.

      Hope you are having a good day.

      Marianne

      • This reply was modified 10 months, 3 weeks ago by Charlene Marshall. Reason: tagging
      • #19184
        Mark Koziol
        Keymaster

        Hello Marianne, I am so sorry to hear about your troubles with the VATS procedure. I am hoping for a quick recovery. I have been told by doctors and nurses they feel my  pain tolerance is high. I have had 3 bone marrow biopsies and I didn’t move an inch. After my transplant I had them remove the pain pump dispenser after one day and just used the patch for a  pain remedy. The VATS procedure was uneventful as well. Keep doing your breathing exercises and keep moving. I don’t want you to get pneumonia. Best wishes and keep in contact. Mark

    • #19183
      Jan Riche
      Participant

      Hi,
      Four years ago I was diagnosed as prediabetic. My doctor suggested a class that is a cooperative effort between the YMCA and the CDC (Center For Disease Control). They put me on a diet that simply had me restricting fat grams. There was an app that helped me count them. I found that my eating very naturally included healthy food, as the only foods that contain very little fat are fruits and vegetables. A side affect of lowering my fat consumption was a loss of cravings. I found that to be a real help in staying on track. I was about thirty pounds overweight and lost the thirty pounds in about four months. My energy level increased and I looked much better.

      However shortly after I was diagnosed with IPF. Sorry to say, I took that as permission to abandon my regime. Gained about 15 pounds back and found that my cravings for fat and sugar returned. I was surprised to find out that my cravings were for fat. I had thought I craved sugar but if it is not combined with fat I don’t crave it. Hard candies are safe in my presence but fudge is definitely not.

      As my IPF has progressed I find my appetite has declined drastically. I think I am in the terminal stages, turning over in bed puts my sats in the mid eighties when I am on eight liters O2. Of course my pulmonologist says we don’t know that, as the condition can speed up or slow down and come to a plateau. Strangely enough I am pretty content. Whoa, way off topic here. Don’t know where that came from. Gonna send it anyway.

      Hope my experience with a fat controlled diet helps.

      • #19185
        Mark Koziol
        Keymaster

        Hello Jan, you are allowed to be off topic. I am sorry you are experiencing a loss of oxygen saturation on minimal movements. Thank you for sharing your experience with a low fat diet. I think I am like you; put some chocolate in front of me I’m gonna show you a magic trick. We can’t have it in the house, we are currently staying away from sweets, breads, and other flour items. My doctor would like for me to be below 230 pounds. I could do it but I have to be very strict and right now I’m not ready to do that.  Best wishes, Mark

    • #19204
      Marianne
      Participant

      Hi Mark –

      I am doing better the past 2 days.  The pain is much milder.  Walking more.  Doing the breathing machines.  The 2500 Voldyne machine is the one that is giving me fits.  I know I need to get the numbers up higher.  I was told this by a good friend who is a retired RN.  This machine is based on your age and height.  I should be able to get the breaths up to 1650 and above each time.  Many times I can only get it to 1000.  I am trying to do better.  I have friends and relatives either calling, texting or stopping by to make sure I am behaving.

      If you like sweets can you substitute either fresh or frozen fruit as a snack or part of a meal?  I like to take frozen fruit – like peaches, blueberries, etc. and put it in the microwave for 4 minutes until it thaws out and gets warm.  I either eat it plain or eat it with old fashioned oatmeal for breakfast.  I am a person who really has a sweet tooth but I have cut way back.  I seldom have chocolate in the house.

      Hope you are having a good weekend.

      Marianne

    • #19205
      Mark Koziol
      Keymaster

      Hello Marianne, don’t worry about the volydyne machine. Remember you have a restrictive pulmonary disorder. Your numbers will no longer reflect what the norm is. I’m sure you will see improvements as you recover from surgery. Remember you just a had a wedge of lung cut out, things take time. I have an electronic spirometer at home which they like me to do twice a day to monitor for rejection and fungus infection. I hate it l. So I know your pain. Keep active and keep using your incentive spirometer. Thank you also for the food suggestions, fruit is an excellent alternative for a sweet tooth. If chocolate makes its way in our house it doesn’t have a long shelf life. Take care. Mark

    • #19237
      Marianne
      Participant

      Mark –

      Feel better after talking to my cardio thoracic surgeon’s office yesterday.  They said not to worry about the voldyne machines unless my numbers drop drastically for a few days in a row.  They also told me that my pain level should go down after the staples and stitches are taken out on May 28.  They told me biopsy results are UIP.  They said my doctor would probably put me on some medicine to help with my breathing.  I don’t get short of breath except when I go up stairs.  So right now I am avoiding stairs.  I am taking daily walks outside when the weather is good.

      Hope you are having a good day.

       

      Marianne

      • #19238
        Mark Koziol
        Keymaster

        Hello Marianne, nice to hear from you. I hope you are pain free soon. Keep being active, it is the best medicine for your body. I don’t like stairs either. They are not my friend. At least they have a proper diagnosis, I do not know much about uip but I do know it’s similar to PF. Take care and keep engaging us in conversation. If you haven’t seen your doctor yet, have a set of questions for when you go in. Mark

    • #19327
      Marianne
      Participant

      Good news and not so good news.  Good news – got staples and stitches out.  Surgeon was very happy with incisions and my walking about a mile each day for past few days.  Actually walked over 2 miles today partly because of 2 doctors visits and 2 different locations.  Bad news is UIP diagnosis translates to IPF which I was pretty sure was going to be the case.  Doctor sent in approval today for OFEV and pulmonary rehab.  Pulmonary doctor was very happy that I was only in hospital 28-29 hours.  Had a long phone conversation with my boss today regarding diagnosis.  He said he felt that the diagnosis was not going to be good.  He told me that he would support me in whatever decision I made regarding work.  Work full-time, work part-time, retire, work from home, etc.  I said I would continue to work from home for a couple of weeks.  He is taking the marketing responsibility of my job away from me and giving it to someone else to complete.  It was a split between 2 of us.  That’s all I know right now.

       

      Marianne

      • #19339
        Mark Koziol
        Keymaster

        Hello Marianne, sorry again about the diagnosis. I am happy you have a plan in place and your employer is willing to accommodate you. Keep active and do what you can. Best wishes, Mark.

    • #19341
      Marianne
      Participant

      Mark –

      I must say I was not surprised at the diagnosis.  Since beginning this health journey last September even my first pulmonary doctor suspected IPF even without having all the tests finished.  So after all the testing I have come full circle one of the beginning diagnoses.  I fully understand some of what Charlene has gone through with her IPF diagnosis.  Family and friends are all over the place with the way they react.  I think some people are so shocked and have never heard of the disease they just say – have more testing, are they sure and sorry.  These are some of the reactions I have gotten in the past 24 hours.  Some people will quietly slip out of your life.  Others will support you 100%.  I am taking one day at a time and trying to live life to the fullest.  I told my employer I was not making any decisions until I started on the drug and had some pulmonary rehab.  I have a friend who has stage 4 lung cancer that is not responding well to chemo.  She loved pulmonary rehab.  So I am looking forward to it.  Doctor said we are not anywhere near discussing lung transplant.  I am not sure if that is something I want to consider.  Perhaps later I will change my mind.  I know you had a transplant and seem to be doing well.  Have a great Memorial Day weekend with family and friends.

      Marianne

      P.S.  Off to the grocery I go since I am allowed to drive locally.  Yeah!!  Feels like I am a teenager again (not really).

    • #19343
      Mark Koziol
      Keymaster

      I was fortunate I had and have an excellent support system. Friends and family are all on board and have chipped in whenever needed.  You will know shortly who will stay by your side. As far as the lung transplant goes, I hope you do not need one and live a long full life. Charlene and I are always here for you and also the forum members. I know it’s not the same as family and friends but we will always listen and respect what you have to say. Mark

    • #19347
      Marianne
      Participant

      Mark –

      I know.  My doctor is very much in favor of Pulmonary Fibrosis News.  Actually my oldest child has a birthday coming up and she requested donations to IPF Foundation.  She did not say they were because of me because I don’t want it all over social media that I have IPF.  Most of my friends are very supportive and everyone on here has been great.  I had a call from a Specialty Pharmacy today trying to get me approved for the medicine.  They first need to see if they are in my network.  I know that my pulmonary doctor’s office is very well versed on getting approval for the medicine as well as talking to organizations to help pay part of the cost.  So I am sure they will jump in to help to get my medicine approved.

       

      Marianne

    • #19360

      Hi @marianne,

      Thanks so much for sharing your experience, and although I wish the final diagnosis wasn’t IPF; I’m glad you have a plan in place now to hopefully help manage the disease a bit better. When do you suspect your Ofev will arrive? I am on Ofev too so if you have any questions, feel free to connect. Mark was on it before his transplant too.

      I’m also glad to hear your stitches came out and you’re feeling better since the VATS procedure. Hopefully that will aid in your healing!

      That is wonderful to hear that your doctor is in support of (and has heard of!) Pulmonary Fibrosis News. I really like hearing these stories, as we’re unique in the patient forum aspect of our work and writing from the perspective of those who live with the disease. Thanks again!

      Charlene.

    • #19374
      Marianne
      Participant

      Hi Charlene –

      Currently waiving on approval for Ofev.  The pharmacy doctor sent the script to was a retail pharmacy so they sent it to their Specialty branch.  They are checking to see if they are in my network.  If not, they will send it to a Specialty Pharmacy.  In the US Ofev is in the highest Tier – a Tier 5 drug which need prior authorization and is only carried at Specialty Pharmacies.  I know that The Ohio State University has a  Specialty Pharmacy and since that is where my pulmonary doctor practices – Ofev might have to come from that Pharmacy.  My doctor said that his office has special expertise in getting patients special discounts on Tier 5 drugs.  The pulmonary doctor seemed to think it might take a couple of weeks to get the drug to me.  I know my appointment with him was Friday afternoon and I have already had 2 calls concerning getting authorized for this drug.  I am sure with the Memorial Holiday weekend I probably won’t hear from anyone until later this week.

      Another neat thing is my oldest whose birthday is in June set up a link on Facebook asking for her friends to please make contributions to Pulmonary Fibrosis Foundation for research because this is very near to her heart.  She did not specify me by name since I don’t want my name all over FB.  Most of the family and friends that matter have been told of my diagnosis.  Most are shocked because they have never heard of it before.  Right now most of the time except for the cough and sometimes breathing issues I appear fine to them.

      I was also referred out to Pulmonary Rehab which I understand is 3 times a week for 1 1/2 to 2 hours at a time.  My doctor also mentioned there are some local support groups in my area.

      Is Pulmonary Fibrosis news connected to the Pulmonary Fibrosis Foundation?

      Hope you are having a good day.

      Marianne

    • #19379
      Marianne
      Participant

      Charlene and Mark –

      I do know that my pulmonary doctor stated that he did not want me subject to unnecessary X-rays, CT scans and MRI’s.  He did not explain to me why he did not want me exposed.  After he left the room who walked in but someone from research stating that they heard I had agreed to a one-time study which magnet and an MRI.  I remember my pulmonary doctor referring me out much earlier to this study.  I had talked to the research and had decided against doing this research study but did not call the researcher back.  I told them I was not interested and my pulmonary doctor had just stated no unnecessary exposure.  Not sure why, but I think I read somewhere that some people with IPF later become diagnosed with lung cancer.  I am not a smoker and never have been.  I do know that my right lung is much worse than my left lung.  Pretty sure IPF is in lower and middle lobes of my right lung.

      Do either of you know why my pulmonary doctor would restrict X-rays, CT scans and MRI’s?  I will send him an email and ask him to explain it to me.

      Thanks for listening.

      Marianne

      • #19380
        Mark Koziol
        Keymaster

        From what I have been told the x-rays, they give out low radiation rays. The cat scans and the mri’s are what good and and excellent doctors try to avoid. The radiation exposure is severe and I was told once before, they would only want me to get a cat scan every two years, and not at all if possible. As newly diagnosed PF patient your immune system is compromised. Your doctor is correct by protecting you. I participated in a research study and they only used my blood and used prior pictures. I sure wouldn’t get into an mri tube for a study, even if it was an open mri. Your doctor may also have plans on the horizon for a transplant if you need and he may be protecting you for that reason as well. Take care. Mark

    • #19390

      Hi Marianne,

      Thanks for your reply – wishing you goodluck and a speedy response re: the Ofev approval! Sounds like a lot of hoops to jump through, but hopefully folks will be able to advocate for you and get you what you need.

      So wonderful of your daughter to do that for her birthday! How generous! Please thank her on behalf of all of us too, as funding any research or collecting donations to do so will only benefit us in the long run. We’re at an exciting time for PF research, I just hope it works fast enough for us.

      Pulmonary rehabilitation did wonders for me! I’d highly recommend it, you learn a lot and I felt better overall after I completed my first round of it. Goodluck!

      No, Pulmonary Fibrosis News is not connected to the Pulmonary Fibrosis Foundation in any way. They do wonderful work as well, but we’re our own entity. The over-arching company that owns Pulmonary Fibrosis News is called BioNews Services. Hope this helps!

      Take care,
      Charlene.

    • #19394
      Marianne
      Participant

      Charlene and Mark –

      Scanners at the airport.  I want to travel by air later this year and I am wondering about the scanners at the airport.  Do either of you go through the scanners or by pass them.  I am wondering since my doctor does not want me to have unnecessary X-rays, CT scans or MRIs.  I am not sure how much exposure one gets from the full body scanners at the airport.  Any thoughts on this subject?

      Marianne

      • #19402

        Hi Marianne,

        Great questions! I travel a lot by air and go through the scanners at security without any issue. They administer only small amounts of rays, as Mark mentioned. From what I understand, it is CT scans that are the most problematic as I frequently get x-rays as well. If I don’t go through the scanners at the airport, it is usually because I am connected to my oxygen and they just manually pat me down to ensure I’m safe to clear security. Your doctors will inevitably need to expose you to monitor your disease progression through x-rays, etc. but as much as you can avoid it, always good to do so. Thanks for chiming in here as well Mark!

        Regards,
        Charlene.

    • #19396
      Mark Koziol
      Keymaster

      Hello Marianne, xrays and the scanners at the airport give off minimum rays. I go through the scanners and I get 4-6 xrays a year. After transplant I was getting two a day for about 10 days then one per day for 8 days. It’s the cat scans and MRI’s that are the problem. Mark

    • #19398
      Marianne
      Participant

      Mark –  Thanks for your quick response.  How do doctors check to see if drug are keeping PF steady?  By PFT?   I was assuming they would do a CT scan but guessing they don’t like to do those if they can avoid it.

      Marianne

    • #19401
      Mark Koziol
      Keymaster

      Hello Marianne, you are correct. They use the PFT’s and xrays to gauge your scarring.

      Mark

    • #19433
      Jacki Baum
      Participant

      Hey @marianne , I am going back to the Speciality Pharmacy for your OFEV.  I use the CVS Speciality Pharmacy and they send it to a local CVS at Target and I pick it up there, it is very convenient.  My insurance pays most of the cost and I  got a grant that covers the rest of the cost, so I am fortunate.  I do not have to pay for this drug, the cost goes up every year.

      I have Humana for prescription drugs and they also have a speciality pharmacy that will send the drug to you, the problem with shipping it is you have to be home to receive the shipment.  If you have it left at the door the cost is NOT covered it is lost or delivered to the wrong house.

      Hope this helps!

      Jacki

    • #19460
      Marianne
      Participant

      Jacki –

      Thanks for your reply.  CVS Speciality Pharmacy called today.  They are still waiting for more paperwork before they can process my prescription.  I am going to check with my drug prescription plan tomorrow to see if I can figure out how much it will cost me.  So far it looks like I may have to pay 25% of the cost.  I am hoping that is not the case.  I have WellCare Classic PDP drug coverage.

      Marianne

    • #19466
      Jacki Baum
      Participant

      Hey @marianne, I get a grant from Healthwell that covers the cost of my copay.  Perhaps you could apply to them. If you want, I can send you the information.  You have to give them your monthly income, just yours, if it is too much, you will not qualify.  There is financial help out there.

      jacki

    • #19559
      Marianne
      Participant

      Jacki Baum –

      Thanks for your reply.  I looked at Healthwell’s web site.  I called my doctor’s office this morning and put this back in their hands since they are telling me that information and contacts necessary to get the cost down to a more reasonable amount.  So I will wait to see what happens.  I have done alot of research online recently looking for foundations that help with the cost of these drugs and so far I am not finding much that helps me as I am on Medicare A, B, Supplemental Plan and Plan D for prescription drugs.  I am also continuing to work full time so also affects not being able to qualify for assistance.    One day at a time.

      Marianne

       

    • #20198
      Fran Johnson
      Participant

      Hello everyone, this is my first post – I am the caregiver to my husband, Randy, who had a lung biopsy in June, was doing really well after, then he suffered a slow leak which led to a collapsed lung.  He just got out of the hospital about a week and a half ago, so he is recuperating.  He was doing well after the biopsy, then wham.  He is on oxygen when exerting himself (which seems to be anytime he is moving).  The biopsy was sent to the Mayo Clinic in Arizona, confirmed IPF.  He was approved for Esbriet, but we haven’t started it yet, the representative from the maker is coming on Monday to speak to us about it.  BUT, here is my food related question – he seems to have lost his appetite for food – I am breaking it down into about 6 small meals a day, but getting him to eat is a challenge – any ideas?  He doesn’t need to lose weight – he needs to get stronger.  We have PT coming twice a week, home health care twice a week… so he needs fuel to participate!  Any suggestions would be welcome!  Thank you all, finding these forums have been a life line for me!

      • #20200
        Mark Koziol
        Keymaster

        Hello Fran, thank you for commenting. It seems you are doing everything correct with Randy’s diet. I don’t know how you feel about whey protein. You can very tasty smoothies that are protein and fiber rich to supplement his diet. The 6 small meals a day is the strategy I used when I needed to lose weight for transplant. Along with protein he’s gonna need some carbs for fuel as well. You can pack some veggies or fruit in a protein smoothie as well. Hopefully his appetite will come back after he is healed from the collapsed lung. Maybe even talk to the dietician at the hospital. I’m sure he/she has some ideas. Best wishes, Mark.

      • #20761
        Suzanne R Brennan
        Participant

        Fran, I echo what Mark said about using whey protein to make smoothies. I use almond milk and frozen blueberries in mine – I use a blender and it becomes like a milk shake but healthier. It helps me to get enough protein (I think the Whole Foods brand I buy gives you 20 grams in each serving) as I don’t always get enough each day. Eating small amounts of favorite foods also helps me. I will split an apple with my husband as a whole one is too much. I also eat sweet cherries when in season, grapes – both red and green. Usually just have a small piece (3-4 ounces) of some kind of meat/chicken/pork and vegetables or a salad for dinner. We also do at least two non-meat meals per week. Since we were pretty strict vegans for about four years, we have some good recipes for meatless meals.

        My mid-day snack is typically some kind of nut – almonds, peanuts,  walnuts – I eat a small handful.  I also have yogurt a few times per week and try to get the lowest sugar brand. I might have a glass of wine every few weeks but typically have cut out any other alcoholic beverages as that plus Esbriet can be hard on the liver.

        I drink a lot of water but also buy a beverage called Ice that comes in a lot of flavors and it helps me to get enough liquid.

        I hope this helps somewhat as you work on helping your husband.

        • #20908
          Tracey Phillips
          Participant

          Hi Suzanne R,

          Thanks for sharing your food recipes! I’m definitely going to invest in a blender!

           

          Tracey P

    • #22071
      jason
      Participant

      Hy

      if you talk about a healthy diet , Paleo diet is a good diet plan to follow if you want to know more about paleo diet follow the link below

      https://bit.ly/2L9nZeL

       

    • #22097

      Thanks for sharing Jason! Yes you’re right – Paleo diet is a good one for a lot of people too. I mentioned it in the column I wrote for PF News but must have neglected it in this forum post. Thanks for reminding folks and for the link you provided.
      Charlene.

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