Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

@colleenyoung

@agullotti, getting a new diagnosis like IPF can be a shock. Here’s more information from Mayo Clinic http://mayocl.in/2jAEmAi I’m glad you found Connect to ask questions of people who are living well with IPF. What’s your biggest concern?

@loisblo, what is your exercise of choice?

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@loisblo why did you have to give up golf? What activities keep you busy now?

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I was just told I have pulmonary fibrosis.need to know more about this .please help

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There is a series of tests that need to be done to confirm the diagnosis. I was recently told I have IPF even though the original CT Scan shows fibrosis in my lungs it doesn’t necessarily mean I have IPF I am waiting for my blood work and a HRCT scan to confirm. I show some symptoms but not others So be sure to do what needs to be done to be sure

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I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem

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Very like myself, my heart dr said my heart was fine but they saw something on my c scan and a pulmologist came in a said I has IPF. The first thing is you need to have more tests to see exactly what is what. Scaring in the lungs can be caused by many different things and with different outcomes

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@dfay

I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem

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I am 67 and I have had 2 open heart surgeries and 2 lung taps .just could not get back to my strenght after the last open heart so I ask my doctor and thats when he told me about the pulmonary fibrosis.I will see a pulmogist soon .just wanted to know about this condiction

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@dfay

I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem

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I just turned 60 with no real health issues except stress from work sent me to the hospital

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Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs – IPF – idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I’ve learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I’m looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don’t smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.

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hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.

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@oliver22

hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.

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Thank you for your reply. It’s the first and only positive thing I’ve heard since my diagnosis. It gives me hope which is what I’m searching for right now. I’ve gone through the shock and denial phase and now acceptance. My daughters are still in shock and panic and I haven’t had a chance to talk to my son as he’s been away on his honeymoon for the past two weeks returning tomorrow. What an awful thing to come home to.

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Hi and Welcome to Connect, @myiokubo. How frightening this has to be for you. I am happy that you have opted to reach out for support. Any time we receive an unexpected, and frightening diagnosis, we are thrown into a complete mental upheaval. I am glad that @oliver22 has been able to offer you hope during your time of need.
I do not have experience with IPF, but I do know that everyone of us has a unique body with it’s own individual responses to the many diseases that we face. I urge you to hang onto the positive. And to continue to seek out sound medical treatment. Please, do not be controlled by what you read online; instead listen to your medical team. Ignore those statistics! I am sending you my hope for continued strength as you move forward and learn more about your new diagnosis.
Rosemary

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Thank you Rosemary for your positive input. It really is encouraging.

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Thank you .I leave it in Gods hands .I have had health problems the last 20 years .2 open heart surgeries and two lung taps and asthma .because of my heart I have mild hyertension in my lungs they never mention pulmonary fibrosis until this last visit.My husband has end stage copd so I care for him .but this was a surprise.I well see he s doctor and go from there.thanks again for the input

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@dfay, I would like to welcome you to Connect. On Connect, we share our experiences and we support each other. Thank you for sharing your own personal experience, I feel certain that you have given a sense of hope to our other members thru your kindness. I know that you will soon receive some communication from other members who might be sharing a similar health issue.
As for the recent diagnosis for your husband, and the new role you will begin as a caregiver, I invite you to explore the Caregiver Discussion Group. You will find others who share your current situation. You are not alone.
Rosemary

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Hello thanks for sharing your lung story. I understand your fear and I am happy you are brave to reach out to others on connect. I am a nine year lung cancer survivor. I also know about lung fibrosis.
You have made a excellent choice to work with lung health teams at Mayo. They are the reason I can now get outside and enjoy each day with activities because moving makes my lung feel better.
The brilliant pulmonary teams and support at Mayo have given me hope along with a great quality of life and desire to live well oand truly enjoy life and everything it has to offer ne day at a time!
Let’s keep in contact in connect! We need each other’s support. God bless you. You deserve a hug.
Linda

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