Mayo Clinic Connect
Is there any one out there that has PF?
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don’t seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
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Hi @inspiration, I moved your post to this ongoing discussion about pulmonary fibrosis where you can connect with other members, including @powderpuf @jvivian and @pd02. What makes you reluctant about Esbriet? Have you asked your doctor about other options?
Hello all! I’m new here because my father is awaiting a lung transplant due to IPF. We have the familiar version as my dad is the third generation to be diagnosed. I’m interested in participating in any conversations regarding IPF and lung transplants.
Liked by Colleen Young, Connect Director
My husband was diagnosed with IPF about four years ago. Was listed for a lung transplant in December 2014 and is currently inpatient at Mayo Rochester.
Welcome @hlweber1 and @muskiemama, I’m glad that you have connected with others who have IPF here on Connect.
As you both have family members awaiting lung transplant, I also wanted to make you aware of the recorded webinar we have about “Interstitial Lung Disease and Lung Transplant: What Patients Need to Know” You can watch it here https://connect.mayoclinic.org/discussion/a-interstitial-lung-disease-and-lung-transplant-what-patients-need-to-know/ In the webinar, Mayo Clinic doctors Cassie Kennedy, M.D., Transplant Pulmonologist, and Teng Moua, M.D., Interstitial Lung Disease Clinic Director, discuss interstitial lung disease symptoms, diagnosis, and treatment options, including lung transplantation.
I’m also bringing @nancyligon and @kerchap into this discussion thread.
Heather – do you also have IPF? How concerned are you that you may have inherited it?
Muskiemamma – how is you husband doing? How are you?
Liked by Ali Skahan, Linda, alumna mentor
Yes, I’ve viewed the webinar, love Dr. Kennedy – she’s on service this week. My husband is doing very well, stable and comfortable on opti-flow oxygen. Great staff on Mary Brigh 6F! I’m doing well also, we’re patiently waiting for a donor gifting his miracle of more life.
@inspiration @hlweber1 @muskiemama @pd02 @powderpuf and everyone else sharing in the discussion about IPF. I thought you might be interested in joining us for a live video chat with a patient & his doctor 15 years after his lung transplant.
See more information here: https://connect.mayoclinic.org/discussion/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/ Feel free to post your questions before the chat so Richard and Dr. Keller can consider them before the chat.
Liked by Ali Skahan, steve1948
Thanks Colleen! We’re striving for 15 years too … my husband recieved a bilateral lung transplant yesterday, July 5. So thankful for the medical teams at Mayo and our hero, his donor.
@muskiemama oh my goodness. Your message just gave me goosebumps. I can’t believe the timing. He had the transplant only yesterday? I’m so happy for you and your husband. So begins day 1 of your next 15, 20, 25+ years. Thank you for telling me.
Please join me, @rosemarya and others in the Transplant group and share your story! https://connect.mayoclinic.org/group/transplants/
Liked by Linda, alumna mentor, steve1948
Yes, just yesterday – the greatest gift of all, a second chance. Overwhelmed today with thoughts of his donor/family and so deeply grateful. Hubby is doing well.
Liked by jms7
Beautiful news!!! This is wonderful!! I’m happy for both you and your husband. I can feel the happiness, joy, and relief myself as I recall that special moment myself. I am glad your husband is doing well. And now maybe you can get a good night’s rest!! Our organ donors are the real heroes in today’s world. God bless them and their families for giving life. Thank you for sharing this glorious news!!
Rosemary (liver/kidney 2009)
Liked by Ali Skahan
Colleen, I had registered for the chat but then missed it due to being with my husband as he took his first walk – he lapped the ICU :-). Will this be archived?
You didn’t miss it @muskiemama. The video Q&A is on July 22 (and it will be archived for viewing later). Good that you registered for it. You’ll get a reminder 1 day and 1 hour before the chat goes live.
Congrats on the first walk about the ICU! What a champ. When does he get his room upgrade out of ICU?
Oh my gosh, somehow I thought it was today! He just got kicked out of the ICU, bed needed for a sicker patient :-). Life is good indeed!
Liked by Rosemary, Volunteer Mentor
I’m not surprised you got muddled with the date. You’ve got a lot of things going on. It’s just so exciting that they are all such good things today. Happy moving day.
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