@constancedc1
-
Darlene Cochran replied to the topic Why do IPF patients lose weight and how to help in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 3 weeks ago
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…[Read more]
-
Darlene Cochran replied to the topic Larry Runyon in the forum In Loving Memory 3 months, 3 weeks ago
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 replied to the topic Life span in the forum Diagnosis Information and General Questions 4 months, 2 weeks ago
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 t…[Read more]
-
Darlene Cochran replied to the topic End of Life in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
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…[Read more]
-
Darlene Cochran replied to the topic Starting Esbriet after stopping Ofev in the forum Esbriet (Pirfenidone) 8 months ago
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 failur…[Read more]
-
Darlene Cochran posted an update 9 months, 2 weeks ago
In reading the question about what a newly diagnosed person should have for tools to help adjust, I suggest the following:
1, The Friends and Family information card from the Pulmonary Fibrosis Foundation. Short, concise and accurate.2. A friend who can listen and listen as you talk through it.
3. A support group that gives you contact…[Read more]
-
Darlene Cochran replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 9 months, 3 weeks ago
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…[Read more] -
Darlene Cochran replied to the topic Rolling cart in the forum Diagnosis Information and General Questions 9 months, 3 weeks ago
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…[Read more]
-
Darlene Cochran posted an update 10 months, 1 week ago
Hi, Saw the question about weight loss. My experience was the time on Ofev pushed me into a weight loss mode. After stopping Ofev and then starting Esbriet, I continued to lose weight. Food no longer tasted pleasant, and I felt little in the way of hunger. I dropped from the 158 number to 120! Wow, not a good thing in one way as my energy…[Read more]
-
Hi Darlene, you’ve posted a status update, which only moderators will see. If you’d like to post this as a topic in the forums for other members to respond to, select a forum from the homepage and scroll to the bottom of the page to the textbox there. If you need a hand finding the original post about weight loss, let me know. I think a lot of peo…[Read more]
-
-
Darlene Cochran replied to the topic Rare Disease Patients: We're in This Together in the forum Join the Discussion: Welcome to all PF/IPF Patients 11 months, 1 week ago
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 s…[Read more]
-
Darlene Cochran replied to the topic High protein vegetarian meals. in the forum Healthy Recipe Sharing 1 year, 4 months ago
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,…[Read more] -
Darlene Cochran replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 1 year, 5 months ago
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
-
Darlene Cochran posted a new activity comment 1 year, 5 months ago
We used World Vision as our organization to support. I am sure almost any mission based organization has a similiar type of program. I think the UN also has something going. worldvisiongifts.org is a quick way to take a look. You are right the goats provide milk, cheese, yogurt and because we bought a pair there should be more goats. The…[Read more]
-
Darlene Cochran posted a new activity comment 1 year, 5 months ago
Thanks, great to be a part of this. I have enjoyed the conversations. For Christmas this year my Sister and I, we both have health issues decided we wanted to buy goats, donate to a water system and purchase ducks through a major organization. We do not need anything and we are enjoying our status as “goat owners in absentia” They help…[Read more]
-
I love that!! I’m guessing the goats were purchased for someone who is raising them for milk/meat? Same with the ducks? What org did you go through for this? Sounds like a great way to help others this holiday season and you have inspired me 🙂
-
We used World Vision as our organization to support. I am sure almost any mission based organization has a similiar type of program. I think the UN also has something going. worldvisiongifts.org is a quick way to take a look. You are right the goats provide milk, cheese, yogurt and because we bought a pair there should be more goats. The…[Read more]
-
-
-
Darlene Cochran became a registered member 1 year, 5 months ago
-
Welcome to the PF forums Darlene, thanks for joining us!
-
Thanks, great to be a part of this. I have enjoyed the conversations. For Christmas this year my Sister and I, we both have health issues decided we wanted to buy goats, donate to a water system and purchase ducks through a major organization. We do not need anything and we are enjoying our status as “goat owners in absentia” They help…[Read more]
-
I love that!! I’m guessing the goats were purchased for someone who is raising them for milk/meat? Same with the ducks? What org did you go through for this? Sounds like a great way to help others this holiday season and you have inspired me 🙂
-
We used World Vision as our organization to support. I am sure almost any mission based organization has a similiar type of program. I think the UN also has something going. worldvisiongifts.org is a quick way to take a look. You are right the goats provide milk, cheese, yogurt and because we bought a pair there should be more goats. The…[Read more]
-
-
-
-
Hi Darlene, these are great responses to the post but they got posted as a status update somehow.. would you mind copying your message into the Toolkit thread? Click here and scroll to the bottom, paste in the text box there, and click submit. Thanks! I’d hate for people to miss out on your thoughtful responses. 🙂