[lori-kathryn-ward]

Thank you, Julie! I am so sorry for your loss! I plan to continue to live life to the fullest and am getting over that ‘bump in the road’ with my friend’s insensitivity and am in good spirits again! It was a hard lesson, but I will guard my heart a little more and not expect everyone to be as empathetic and compassionate as I thought they would. May you have a blessed day! Lori

[lori-kathryn-ward]

Diane, I am so sorry you are also struggling with IPF and depression. Has your doctor talked to you about OFEV or Esbriet? I have read that they can significantly slow the progression of PF and I went on OFEV soon after my diagnosis and will see in Jan after another CT how my scarring has progressed (hopefully NOT progressed!). You need to have a doctor from a COE that is familiar with this rare disease and is on top of the latest treatments. I have also joined a couple of support groups that meet virtually, but haven’t had the chance to attend one as of yet. Maybe we can meet on one virtually some day! I pray that you have a blessed day and week ahead! Lori

[lori-kathryn-ward]

Thank you, Christie! Very kind and wise words. May you have a blessed day! Lori

[lori-kathryn-ward]

I am believing for a cure and have participated (along with 9 other family members) in two research studies aimed at finding the cause of familial PF so a cure can be found before it passes down to our children and grandchildren. May you have a blessed day, Lori

[lori-kathryn-ward]

Don, I am just now getting back to you. Thank you for your kind words. I am sorry that you have IPF and had to retire from your profession, but I am happy that you see that ‘forced retirement’ as liberating! I like your statement that planning is necessary but worrying only creates fear. I have never really worried about what lies ahead, I just see it as inevitable. When I say things like “I retired so I could enjoy my family and go see our grandchildren’s events before I’m dragging around an oxygen tank” I am ‘planning’, or thinking ahead, and trying to live my best life as best as I can. My friend was insensitive by saying ‘We all could die any day and we all have problems in our lives, don’t dwell on it’, but I think she also spoke out of fear because she doesn’t want to face the fact that we aren’t going to grow old, into our 90s together, like we thought we would. Interesting that I had read “When Breath Becomes Air” in 2019 before my diagnosis. I just listened to the audio book this week after you reminded me about it. It reminded me that I had started to write a book in 2004 that I put aside for another day and I looked up my notes on that and am thinking of continuing that book and include my journey with IPF in the story line.

I ordered another book that was recommended to me called “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks With You” by Kim Fredrickson and am anxious for it to arrive.

Today I am thankful for this forum and the support I feel from everyone. We are all on the same journey, just going down slightly different paths and can use all the empathy and love we can get!

May your day be blessed! Lori

[lori-kathryn-ward]

<p style=”text-align: left;”>Don, I wrote a nice response to your reply and before I hit ‘send, I lost it so I will have to stay over tomorrow. I need to get to sleep now! Thanks for writing!</p>

[lori-kathryn-ward]

Willie, Thank you for writing and sharing your story! I am sorry that IPF runs in your family as well. I have said to my husband that I would rather have cancer for which there is some hope, than IPF which is terminal! I try to walk 2-3 miles every day and do as much as I can throughout the day, but I do go to bed early and stay in bed until I get 8-9 hours sleep and I know this helps. When people see us doing all of the things we do, they forget we have a disease and are confused when we might have to cancel due to this. I have suffered from Fibromyalgia for over 20 years and that, too, is a silent disease. I am used to everyone trying to ‘fix’ me by saying I need to slow down and stop doing so much, as if I am causing my exhaustion, headaches, pain and flare ups just by living. So I am prepared for this to happen when my IPF progresses and I will remember your words; “I’ll do until I can’t”. May God bless you today and always, Lori

[lori-kathryn-ward]

Thank you Ron for your kind words and prayers. My 53 year old nephew is 17 months post-transplant and I remember the months leading up to his surgery. Praying for the perfect match to become available when you are ready and that you have a successful surgery and quick recovery! Blessings, Lori

[lori-kathryn-ward]

Thank you, Charles for taking the time to reach out to me and tell me part of your story! I am blessed to know Jesus as my Lord and know that this is the cross I have to bare on my journey to meet Him in person and am usually very positive so it is good that we have people like you on this forum to pick us up and encourage us on the days we aren’t doing so well! I always suspected I would develop PF since my Dad and 2 sisters died from it and my other 2 sisters have it, but I am sure it was a TOTAL shock to you when you heard those words! I hope that you continue to find strength from God and support from your family and friends. Reach out to me if you need to share or vent! Praying you have better days ahead! God bless, Lori

[lori-kathryn-ward]

Thank you Mary, for reaching out! I am so sorry you are living with PF as well! I’m going to look into places where I can continue to exercise after the weather gets colder and I might not feel like taking my 3 mile walk every day! I keep telling myself that I need to pick up some weights and rebuild my muscles after my walk, but usually don’t follow through. Thanks for sharing how that is helping you as that is inspiring me to begin! I am in 2 research studies, as well as about 13 of our family members at UChicago Med and Vanderbilt University Medical Center. Since your Mom also had PF, have you done genetic testing to see if/what might have caused this? Our family has a defect in the PARN gene and Short Telomere Syndrome that is directly connected to PF and why so many in our family have PF or have died from PF. I believe knowledge is power and if you know that your sister and children could have some defect that could cause them to develo0pe PF, it would be helpful to know so they can take the precautions of staying away from environments or medicines that could trigger PF.  I’m usually very positive and upbeat, but was just so upset by the way my friends treated me that I reached out for help and I’m glad I did because I have felt a lot of love and support from the people on this forum. I’m much better this week, but I think I’ll keep more to myself from now on to avoid this hurt again. May you be blessed in a special way this week!

[lori-kathryn-ward]

Denise, thank you for replying to my post. I, too, rely on my faith and did a 24 hour fast and prayer Sunday-Monday that helped me calm my resentful feelings. I would love to connect with you in a closer way as well, as we seem to have started this IPF journey around the same time. Be gentle on yourself and try to avoid stressers that can cause an exacerbation. (EASY to say, NOT so easy to do, right??!!) Blessings to you as well, Lori

[lori-kathryn-ward]

<div class=”gmail_default”>Wendy, thank you so much for taking the time to respond! Happy 69th birthday coming up! Thankful you can enjoy another birthday! Thanks for the book suggestion – I checked into that and will be able to start reading that today! And thanks for the suggestion of looking for palliative and respite care. My husband, bless his heart, has NO idea how to cook, clean or take care of me so I know I will need help in the future. I’m sure that our 2 daughters will come help, but they have young children and I don’t want the full burden to rest on their shoulders and our 2 sons probably won’t help.</div>
<div class=”gmail_default”>I have suffered for almost 20 years with Fibromyalgia and my kids have complained that I still try to do all the things I used to do and ‘rally’ well when they are over so it’s hard for them to believe me when I say I had to stay in bed for days afterwards. But it’s so hard not to want some ‘normalcy’ and to do special things for our 4 kids and 7 grandkids. This weekend, my friend said the same thing about my PF. She said “you tell us about your illness and that you need to stay away from stress and be careful – so why do you still do all the things you do?” So I guess I need to 1. Stop bringing up my diseases and 2. Don’t overdo things that might cause a flare up. 3. Don’t put on a good face if I don’t feel well and try to push through it – just admit I’m feeling bad and allow them to step up and help.</div>
<div class=”gmail_default”>But I WILL be seeking counseling to help me through these feelings and I have prayed and meditated A LOT since all of that happened this past weekend so I am much more at peace today.  Have a wonderful day! Lori</div>