Rosemary, Volunteer Mentor | @rosemarya | Feb 10, 2017
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
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
Rosemary, Volunteer Mentor | @rosemarya | Feb 10, 2017
@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
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
Thank you for your kind word .I have a bad heart so I have learned to value each day .I knew I had asthma but the hypertension and fibrosis was a surprise.waiting to see new doctor .My husband has end stage copd so I taking care of him .God will not give me more than I can handle but it scares me what he think I can handle .ha ha.God bless you too
Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.
Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.
Hello: your last sentence is great with your positive attitude! You may really enjoy looking up Mayo Clinic Dr Amit Sood "Brain" fun talk ! I highly recommend his newest book "Happiness". I am sure it is his life lessons that have helped me direct my positive attitude & daily gratitude as a 9 year lung cancer survivor.
I am a never smoker who was shockingly diagnosed with lung cancer by Mayo doctors. The advances in pulmonary care are light years beyond what they were onlym9 years ago.
Keep connected and keep up your great attitude, that's a huge part of the fight to have a great quality of life. I know, because I have had some of the challenges you shared. Keep Moving & know you are not alone!
Lw
Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.
hi steve_1948,
i have been on Esbriet too, since Mar 2014, the results have been very good. My case is different: i rarely cough! only slight mucous but exercise takes a toll on breathing, i uses twice the liers of O2 constant flow 24/7. i use Famotidine 10 mg taba. for acid reflux.as the Omneprazole caused me problem.i use no inhaler or nebulizer.i take Zyrtecfor allergies.i sleep a lot w afternoon naps.i am a never smoker! i have not heard of the sevier coghing you experience? keep the faith we will all go on with limitations!
Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.
I am recently diagnosed with IPF and shortness of breath was my only symptom until last fall. The cough and shortness of breath got steadily worse,the pft's revealed restrictive lung, ILD. The oxygen is a recent tool and it certainly helps greatly.
Esbreit is going to be used as soon as we get help with payment.I want to stay in touch with this group especially people that have been using this medicine. Thank you for listening. I will watch for your posts.
Connect
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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
-
Like -
Helpful -
Hug
1 ReactionThank you Rosemary for your positive input. It really is encouraging.
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
-
Like -
Helpful -
Hug
1 Reaction@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
-
Like -
Helpful -
Hug
1 ReactionHello 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
-
Like -
Helpful -
Hug
1 ReactionThank you for your kind word .I have a bad heart so I have learned to value each day .I knew I had asthma but the hypertension and fibrosis was a surprise.waiting to see new doctor .My husband has end stage copd so I taking care of him .God will not give me more than I can handle but it scares me what he think I can handle .ha ha.God bless you too
-
Like -
Helpful -
Hug
2 ReactionsHi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.
Hello: your last sentence is great with your positive attitude! You may really enjoy looking up Mayo Clinic Dr Amit Sood "Brain" fun talk ! I highly recommend his newest book "Happiness". I am sure it is his life lessons that have helped me direct my positive attitude & daily gratitude as a 9 year lung cancer survivor.
I am a never smoker who was shockingly diagnosed with lung cancer by Mayo doctors. The advances in pulmonary care are light years beyond what they were onlym9 years ago.
Keep connected and keep up your great attitude, that's a huge part of the fight to have a great quality of life. I know, because I have had some of the challenges you shared. Keep Moving & know you are not alone!
Lw
hi steve_1948,
i have been on Esbriet too, since Mar 2014, the results have been very good. My case is different: i rarely cough! only slight mucous but exercise takes a toll on breathing, i uses twice the liers of O2 constant flow 24/7. i use Famotidine 10 mg taba. for acid reflux.as the Omneprazole caused me problem.i use no inhaler or nebulizer.i take Zyrtecfor allergies.i sleep a lot w afternoon naps.i am a never smoker! i have not heard of the sevier coghing you experience? keep the faith we will all go on with limitations!
-
Like -
Helpful -
Hug
1 ReactionI am recently diagnosed with IPF and shortness of breath was my only symptom until last fall. The cough and shortness of breath got steadily worse,the pft's revealed restrictive lung, ILD. The oxygen is a recent tool and it certainly helps greatly.
Esbreit is going to be used as soon as we get help with payment.I want to stay in touch with this group especially people that have been using this medicine. Thank you for listening. I will watch for your posts.