IPF How To Cope with Sick Feelings

Posted by vaugen @vaugen, Mar 16, 2017

I got a type pneumonia in May 2015 an never felt same. I work in a high stress long hours job and in 2016 could not work 4 hours without resting and napping. I August 2016 I suddenly got out of breath climbing steps, mowing doing anything with my arms. I went to ER extensive heart evaluation was fine BUT my x-ray was not good. Had a CT showed PF did all blood tests in Sep the lung Biopsy end of Sep showed I had IPF. I started taking NAC and my ER visit 2 weeks ago shows no change. NAC maybe working??
BUT I have most days miserable. Get tired easy, the feel sick all over (like bad flu), chest feels full and tight, BP high 190/100 then goes down after sleeping, (I sleep 7 hours solid) muscle aches, weak, dizzy etc. My doc says IPF does not cause that. I do not want to take Esbriet cause I feel bad now.
Anyone experience these feelings?

@tula

Hello, I have not had Espreit yet. Actually just got the diagnosis in Feb 2017; however, a scan from 2012, showed the Interstitial lung disease at the base of the lungs. Do not know the extent of progression from that earlier 2012 -scan. How is that measured?
How did you get in a study, how do I find studies or clinical trials?
I am sorry you have IPF & hope you find relief.

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I have taken Esperit for the past year and my tests have shown very little change in my condition. You should discuss this with your Pulmonary doc. A study i read a few days ago found that patients on Espreit for a year tend to live .2.5 years longer than people that are not on medication. There are several new studies regarding drugs that show promise in treating IPF in progress in the UK and another in Australia. The sooner you get treatment, the better you chances of a cue are.

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@rayhastings

Sorry for the typos. my keyboard keys are sticking.

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check out this site. https://www.phassociation.org/AboutPH. it is the home of the support group for pulmonary hypertension and should have plenty of information to help you better understand what is going on and what your future might be like.

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@rayhastings

Sorry for the typos. my keyboard keys are sticking.

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That was a typo, sorry. should have been portable oxygen concentrater. .i bought one of the smaller ones that is easy to travel with and especially on plans.

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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

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Hello @annabeyta,

I’d like to welcome you to Connect, and sincerely thank you for sharing your story and your thoughts; we are so happy that you’ve joined us.

We have a few discussions on IPF and pulmonary fibrosis that might interest you:
Stem cells for Pulmonary Fibrosis: http://mayocl.in/2s0BVfW
Pulmonary Fibrosis: http://mayocl.in/2nbVlMF

And, while we wait for others to join the conversation, I think you might enjoy watching these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI
@annabeyta, I also want to let you know that you’ve discovered what Connect is all about: a community of incredibly supportive people, many who share your journey, and help each other along the way with their shared experiences, questions, insights, suggestions and tips…just as you have done with your first post.
So do keep talking…we’re listening.

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@annabeyta

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

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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

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@annabeyta

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

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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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@kturchin

I feel the same every day every muscle aches and joints my feet and ankle joints even hurt I’m tired and on 4 liters of oxygen when active and I still will get out of breath and have to stop and do breathing exercises I was in cellcept that shut my kidneys down to 50 percent working and I tried imuran and I was deathly ill throw up unable to eat and barely could keep liquids down for 6 days I won’t take either one again I’m at a loss I’m in so much pain and the doctor does nothing I’m going to keep on hanging in there you too it’s hard

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hi, kturchin i was dx with ipf 6 yrs ago and went thru the usual meds for ipf, imuran, prednisone, with insignificant results,then Esbriet was made available… i have been using for two n half yrs breathing tests are stable… i take NO other meds but use 02 24/7 4ltrs i feel as long as the oxygen is available and i can av9id contracting something else! i wll be around for awhile. i am 80, never smoked! Mayo dz me 2002 with hypersensitive pneumenitis, which cleared up for ten yrs and then ipf. i exercise very little due to fatigue sleep alot and just glad to be here!

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Thank you, Linda, for your support. My family and friends don’t really know what to do with me. I think they notice that I am not the cheerful soul that I was 3 months ago, before the diagnosis. But other than that, I don’t think they understand the shock that I am feeling. I was thinking of creating a brief sheet of paper with the topic of IPF for Dummies, only not with those exact words, of course, to share with others. My family doesn’t quite understand the “down” days that I have. They think that what I need may be psychological counseling and a quick walk around the block. They think that perhaps my sleepiness and aching joints are all in my mind. It is so comforting to find people on this website who have had my same symptoms and who have not ended up in a mental ward. They have not only survived past the statistical “end” date but are living meaningful lives. Thank you so much for reaching out to me and sharing some of your own stories. I will definitely check out the links that you listed on your reply. Blessings to you and your family. –Ann Abeyta

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@annabeyta

Thank you, Linda, for your support. My family and friends don’t really know what to do with me. I think they notice that I am not the cheerful soul that I was 3 months ago, before the diagnosis. But other than that, I don’t think they understand the shock that I am feeling. I was thinking of creating a brief sheet of paper with the topic of IPF for Dummies, only not with those exact words, of course, to share with others. My family doesn’t quite understand the “down” days that I have. They think that what I need may be psychological counseling and a quick walk around the block. They think that perhaps my sleepiness and aching joints are all in my mind. It is so comforting to find people on this website who have had my same symptoms and who have not ended up in a mental ward. They have not only survived past the statistical “end” date but are living meaningful lives. Thank you so much for reaching out to me and sharing some of your own stories. I will definitely check out the links that you listed on your reply. Blessings to you and your family. –Ann Abeyta

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Ann: Sounds like a great plan !
I also encourage reading Dr Amit Sood’s HAPPINESS book.
I had the honor and pleasure of being involved with Dr Sood’s Paced Breathing Research Study 9 years ago, his teachings helped me accept my lung disease, move beyond the shock and stigma and live!
Let’s stay Connected, ok?
hugs
linda

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Linda, I would love to stay connected with you. I guess I am still in the “shock” stage, but I want to move on to investigation and proactive behavior, rather than to stay in the self-pitying hole that I have fallen into in the recent past. Today my husband and I decided NOT to sell our RV and to go exploring instead! I will read the Sood book that you recommended. Thank you.
I am not afraid of dying, I am just not ready yet. I still have things to do.
A big hug back! Ann (living in Albuquerque)

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@kanaazpereira

Hello @annabeyta,

I’d like to welcome you to Connect, and sincerely thank you for sharing your story and your thoughts; we are so happy that you’ve joined us.

We have a few discussions on IPF and pulmonary fibrosis that might interest you:
Stem cells for Pulmonary Fibrosis: http://mayocl.in/2s0BVfW
Pulmonary Fibrosis: http://mayocl.in/2nbVlMF

And, while we wait for others to join the conversation, I think you might enjoy watching these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI
@annabeyta, I also want to let you know that you’ve discovered what Connect is all about: a community of incredibly supportive people, many who share your journey, and help each other along the way with their shared experiences, questions, insights, suggestions and tips…just as you have done with your first post.
So do keep talking…we’re listening.

Jump to this post

Thank you for listening. I thought that I had found so much on the internet and you have turned me on to SO much more! Thank you! I am researching! I guess I have more homework to do! — Ann

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