[darlene-cochran]

Keeping weight on has been a chore. So, I have learned to eat a small meal about every three hours. The Nutritionist with my health plan has given me assistance with calorie dense foods, like dried fruit. That helps. I have also learned to eat by schedule rather than hunger. If it does not taste bad then I will eat it, I cannot wait for good taste buds now. So, I have utilized cream of wheat, oatmeal and other cereals in my diet at least once each day. In addition, I make sure that fruit and veggies are a meal each day. I use proteins in at least two of my meals. Peanut Butter and honey sandwiches are my late evening snacks as is hot fresh cooked pudding, I do not bother with instant. The hot pudding is tasty, and I use nonfat half and half to make it. So far, I am holding my own at about 100 lbs/ I am 5 ft so that works for me. I make split pea/lima beans and ham/ vegetable beef with lentils added/ chicken broth with carrots and orzo or noodles. These soups are a quick warm snack or sometimes my meal. I add cornbread or an English muffin to help out. I use brown sugar for sweetening things and have promised myself that food is essential to health.

[darlene-cochran]

Hi Charlene,
I understand how you feel, I was there when first diagnosed. Then I realized that I needed to talk about it so I could learn more, this was important since I had to live with it. Understanding it is part of the lesson. You are right, at this moment you may not improve if the meds are not for you. That said there is so much you can do to feel better and live better. Pulmonary Rehab, the thing I hate but love the results!! So glad I went thru the program. Hints and advice from others who have the disease or one that is very close in nature. Sharing what you do may make a difference. It takes a while to find your way to the place where you are ready. The sooner you find it the stronger you will be. I approach it with, yes, I am going to die, but not at this immediate time. I want to live with grace and also die with grace. Based on that I want to make choices and to do that you need to know all you can. Reading and research will only take you so far. The other people on the same journey will help you and you will help them. So, look for the support group or go to the Pulmonary Fibrosis Foundation and check out their online group, PFF voices. As for your friends there is a Family and Friends card available from the Pulmonary Fibrosis Foundation that I give to anyone who wants to know how I am. It gives insight and informs them of what you ae dealing with, it is well done. Then after an appointment or in conversation when it comes up, when someone says how are you? My response is, I am trekking on my journey and doing my best. Some days are great and others well there is bump in my road and navigating it is a pain in my toosh! If they say, what can I do for you? I say well prayers are always welcome! and it you are doing an errand you might ask me if I need anything, like a quart of milk or a donut, a smile. I may say, no I am good, I might say I could hug for a donut, or just appreciate that you thought of me. We need to make people comfortable with our journey, they cannot get there without our help. But first we have to find acceptance and get comfortable with it. Do not allow your illness to take the joy out of your life, the joy of love, memories, friendships are yours!! hang on tight the joy is a part of you. Do not die before you are dead, do not grieve your loss while you still have good things in your life. I have had to change my expectations, darn darn, but it turned out OK. There are many ways to be happy and joy is important, so I just have to reinvent me as I go. The world changes, we change, and we want to live the best life we can while we can. Saying that means I acknowledge todays best may be very different going forward. May God bless you and give you the energy and peace to travel your path.
Breathe easy, Darlene Cochran

[darlene-cochran]

Consider going to an office supply store and look at some of the carts that are used to haul around laptop computers. They have a number of pockets and I use it to carry personal items and strap the Portable on with a strap. It is easy to roll and meets carry on requirements for the airlines. However, because it is for your Oxygen it is not counted as your carry on. The Oxygen carrier is free additional medical carry on allowed. The extra battery and charging unit fit inside the pockets easily. I actually use the one I had when I worked, it now carries the laptop and the rest of the regalia all in one easy unit. Retired but reused for an equally important task. You may even fine a used one at Goodwill or some other used product store. Good luck. Breathe easy, Darlene

[darlene-cochran]

My four descriptive words for IPF:

1.  Challenging

2.  Motivating (  It moves me to know more and do more in a timely manner)

3.  A Gift  (  Not from my wish list/ however it has brought me many blessings and a better awareness of blessings)

4.  Opportunity ( Not the one I was looking for, but one that will help me be more productive, find strength when I need it and appreciate all of the blessings past and present)

5.  To finish this off I would call it an arduous trek that although it is solo, I am not alone. God and my family and friends are here to cheer me on/pick me up and keep me on focus.  I love all of them.

Thanks for giving me this opportunity to share.  I will not lose the good in my life to the last challenge, it will just be a exit strategy that I  had not planned on, so on to the next plan !!

[darlene-cochran]

Hi,
I lost a lot of weight and needed to eat more proteins so I had to get a bit creative. I found using lentils with almost anything helped. Mix and cook with stewed tomatoes, soak and add to any kind of casserole, split peas and lentils make a delicious soup. You can enhance with flavors of all types: such as Italian, Mediterranean, Mexican, or even German/European flavors. I make muffins and add quinoa to the batter, makes them a bit heavier but adds protein. Also adding egg whites if you can have eggs increases protein intake. Just a thought to consider. Ofev was not the med I could stay on, but several of my acquaintances who are on OFEV find it great! So always worth a good try. May the search be a good part of the journey. Regards, Darlene Cochran

[darlene-cochran]

Prayers for Larry’s family. Peace for Larry as he starts his new journey. Hope for all IPF/PF patients for a kind life and progress in treatment/diagnosis/potential cures. Regards, Darlene

[darlene-cochran]

Hello Mike,

I am glad that Ofev is working for you.  I have friends with Pulmonary Fibrosis, both IPF and other designations and many of them are doing well with Ofev and Esbriet.

I had a short term on Ofev and then switched to Esbriet due to the complications.  Esbriet worked well for several months then my liver was impacted (those blood tests are vital) and I had to leave Esbriet.  So currently not on any meds.  Still, all is going OK.  Diagnosed in 2019, four years after it was originally on a 2015 x-ray but missed by the radiology team.  So, if you assume that I was with IPF in 2015 then I am now into the game entering my eighth year.  I am still classed as moderate.  I use Oxygen at nite and during the day with exertion.  I am able to read, watch TV etc at room air and maintain mid-nineties.  I use Oxygen at 2 when sleeping and between 2 and 3 when doing chores in the house or yard or walking/exercise.   I am slower than before but still manage to live alone, drive, and shop with some assistance.  Love the little cart I drive at the market.  The key to this being satisfying was to change my expectations and to be thankful for what I could/can do rather than fuss about what was!  I find that life is just fine even if you cannot hurry up and get there.  Actually, it is a bit more relaxing this way after all I am now in my 8Os  so I give myself permission to do whatever I want whenever I can.  Adapting to this new lifestyle was a challenge and now it is just part of life.  I feel I still have some time ahead of me as long as I avoid accidents or other risks.  So based on that I am living well beyond the life expectancy for a woman living in the USA!  God is helping me keep this in perspective so that I can enjoy life to best of my ability.  I hope you find peace in your journey; we all have one and it is better to learn to ride the current then to paddle up stream.  Happy 2023 to all of you!

[darlene-cochran]

when my husband died of IPF in 2003 he was given medication so that he was unaware of the lack of oxygen, but also unconscious.  Hard to watch but better than the panic and terror that lack of Oxygen creates in an individual.  Talk about it with your Dr. and know what you expect and want and share with your family.  I now face the same future as I now have IPF so the family and I have reviewed and addressed the end days.  I would like to move forward with grace and my faith.  Just be sure it is in your written wishes as to how to handle the question.

 

[darlene-cochran]

Hi,  I know this is an older post (2020) but am just now reading it.  I was on OFEV,  slowed the IPF but was unable to live with side effects and 30 pound weight loss.   After a break went to Esbriet.  Good results modest side effects for the first nine months. Then the negative blood test for liver function.  My liver shut down and liver failure is very difficult.  It took ten months to overcome and to get liver  tests to normal.  Left with some cirrhosis in my liver but function is OK.  Be sure to do the monthly blood test and stay alert.  Without that test to have them stop the meds, I may not have made the recovery.  When it works it is great!  Now I am no medication and applying for clinical trials where I can.  It is slowly creeping up on me and I know that my time is less than optimal.  Overall manage fairly well and try to stay as active as possible.  Just had to adopt new expectations for my life.  God Bless all who battle disease of any type, it is a challenge.

 

[darlene-cochran]

Hi,  I have found the saline spray from Arm and Hammer is most helpful with the dryness from the oxygen for my nasal passages.  Easy to use, comes in a pack of three.  Not expensive and really has helped me.  Might be worth a try.  God Bless you and your Dad as you trek on this path, it is rocky for sure, but good stuff happens too! Regards, Darlene