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IPF How To Cope with Sick Feelings
Lung Health | Last Active: Oct 19, 2022 | Replies (62)Comment receiving replies
I have just been diagnosed with IPF. As the saying goes, "I've got a lot of living to do." I am not ready to die in 3 to 5 years, as too many of the statistics state. I want to try everything possible to live a few more years. I am willing to try Esbriet, but I need to get on some type of research project or be awarded a grant. With my Medicare and my insurance, I would still need to pay an additional $2,800 a month. Undoable for a retired teacher. I have "down days." These are days when I am so tired that all I can think about is sleeping, reading, or lying on the couch to watch movies, one after another. Even on good days, I don't have a lot of energy and I ache in my joints and my muscles. My energy gets spent easily. I do have interests in collecting teddy bears for orphanages in Ukraine, making jewelry, reading. All of these activities are sedentary so I realize that I need to add some exercise to my days. Doing the dishes and sweeping the floor is not what I have in mind as far as physical activities. I also have osteoarthritis in my lower spine so I can stand or walk for up to 15-20 minutes. Past that I'm in too much pain. I want to be the cheerful, optimistic person that I have always been in my life. I used to think nothing of rearranging my livingroom and painting the walls in a weekend. Those days are gone. I need to look forward to more activities in my life. I have a caring caregiver. I am 63 years old. I am generally sad. And... I need to get out of this slump. I hope that by getting on a website like this I can hear from others in similar circumstances. Who knows, maybe I could even help someone else. I hope so. Thank you for reading this, Ann Kathleen
Replies to "I have just been diagnosed with IPF. As the saying goes, "I've got a lot of..."
hi Anna:Live and live long! I say this because I am a 9 year 5 month lung cancer survivor. I was blessed with a second opinion st Mayo Clinic that saved my life. It inspired me to get upAnd move despite the pain and odds! Watch my TedX talk on UTube "Beating The Odds & Summiting Kilimanjaro with One Lung."
Lung cancer diagnosis and surgery became my blessing. Now, I live life to the fullest one day at a time. Oh, I forgot to say, I also had a wedge in my lower lung lobe removed due to PF.We are living in a remarkable time withamazing research happening everyday!
I truly admire your "Love of Life" and your desire to help others, which is an inspiration. This is my passion as well!
I welcome you to Connect where there is a wealth of support and resources. The people are wonderful as well ! You deserve a big cyber hug. linda
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Dear Anna: Pretty name ! I am a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic. Shockingly, I never smoked. During VATS procedure to remove my left lung and a 3cm tumor It was discovered I also had PF and part of my lower lung was also removed!
I had horrible pain for 2 years pre surgery & proper diagnosis. Local doctors dimly were not aware that an athletic never smoker could have lung cancer. Some suggested my choking cough was psychological.
After surgery I have lived with the unfair stigma, that simply just made me so mad, I started running, after I had the honor and pleasure of completing a Mayo Clinic Paced Breathing 3 month Research Study.
1- I do not believe anyone knows for sure how long a person will live. A life insurance company told me "Acvording to statics (at my 5 year survival celebration) You should be dead!" & my policy was cancelled!!!
I set a new goal, after running a 5K race in every state...to run a 10k in every continent! August 2016, I summited Kilimanjaro at 19,361feet altitude without any supplemental oxygen.
After lung cancer surgery I took baby steps and it hurt to breath
I couldn't sleep, walk, talk without taking a breath!
My loving husband tied my shoes when I couldn't bend over, and said, "You belong outdoors, let's go!" I could barely move, I walked heel toe heel toe.
I got on an elliptical machine, I got back on x country skis. I called my sergical team and said,"it hurts to breath!" Spring came I got back on a bike.
Yes it was scary ! But with Mayo Clinic amazing support teams I now believe Lung Cancer and lung disease has been my blessing.
My husband have recently started a foundation to raise Lung Cancer & Lunh Health Awareness.
You have found an amazing network of support. The resources are priceless and support Quality Of Life!
We never know what is around the corner do we?
Anna, I admire and respect your goals and ambitions as you have shared. Get a second opinion, like I did! It saved my life and I have learned how precious living one day at a time with gratefulness and kindness truly is.
You bet, you can help others! It looks like Your heart is in the giving place ! Go for it! And welcome to Connect, the people are wonderful!
You deserve a big cyber hug! Thanks for sharing.
linda