Yes, diagnosed March 2018. Been taking Esbriet since April and in Pulmonary Rehab. Searching for medical trials that offer stem cell treatment or medication that will help. Very depressing at times. No cure!
Yes, diagnosed March 2018. Been taking Esbriet since April and in Pulmonary Rehab. Searching for medical trials that offer stem cell treatment or medication that will help. Very depressing at times. No cure!
I was diagnosed with IPF(Idiopathic Pulmonary Fibrosis) about 2 years ago. I have been on OFEV 150mg 2X daily. This past February I had stem cell therapy. In May 2018 I had a breathing test to see where I was. There was no change during the past year so that was good news to me that I am stable. I do have an annoying cough after some exertion when I work around the yard so I have to pace myself but that is ok, I'm still able to do most of what I want. Oh, BTW, I'll be 80 in about a week so life is good.
@robinson i was diagnosed with IPF in July and also take Ofev 150mg2Xday. I went through every emotion because I thought I was going to die and I just turned 66! I have decided I’m not going to die of this, but I’m going to live with it. Were you ever a smoker?
I was diagnosed with IPF(Idiopathic Pulmonary Fibrosis) about 2 years ago. I have been on OFEV 150mg 2X daily. This past February I had stem cell therapy. In May 2018 I had a breathing test to see where I was. There was no change during the past year so that was good news to me that I am stable. I do have an annoying cough after some exertion when I work around the yard so I have to pace myself but that is ok, I'm still able to do most of what I want. Oh, BTW, I'll be 80 in about a week so life is good.
Where did you get the stem cell therapy? I was diagnoised with IPF in March 2918 and have been taking Ebriet. I thing i a getting worse. More difficult breathing and can not exert myself. I think stem cell therapy may be the answer for me but can not finf a legitimate provider.
Colleen Young, Connect Director | @colleenyoung | Oct 12, 2018
Hi all,
I'd like to introduce you to newest member of the moderating team, @ethanmcconkey. Some of you have already seen Ethan in the Lung Health group connecting new members with long-standing members. As with all the moderators, Ethan will be in the background, keeping Connect welcoming, safe and inclusive. Learn more about why and how we moderate: https://connect.mayoclinic.org/page/about-connect/tab/moderators/
As the activity and discussions related to pulmonary fibrosis (PF) grow, we plan to open a group dedicated to PF. Ethan will be helping me with that.
In the meantime, there are few members we haven't heard from for a while. @francko, how are you doing? Did you find a portable oxygen machine that works for you?
Also, @penlee have you found strategies to cope with the ongoing fatigue? Does the cooler weather help?
@keira were you able to get that chronic cough under control? What helped?
Let's help Ethan get to know you -- the members of this group. Post an update, tell the group a little about you and how you're doing.
Greetings all, as you asked I do much better energy wise with the cool fall weather. It is beautiful where I live in Oregon. The poor air quality/smoke in August and September bothered me a lot, though I stayed inside my home on the bad (moderate and above). My latest new pulmonologist feels I have reactive airway disease and need to use the rescue inhaler. It seems to help sometimes. I am still trying to figure out when to take those puffs. Pulmonary fibrosis is a balancing act of activity, food intake and medications. Note: I am having difficulty getting mycophenalate ( generic of cell Celcept). Anyone else? Counting my blessings.
I would like to get more information on both potential stem cell treatment and new medications for IPF.
I was diagnosed Feb/March 2018. Started Esbriet about two months latter. Been doing P Rehab for the last 4 months. Been on O2 at night sinceJune 2018. Just started using it during the day on an as needed basis. Had a Sleep Study last week and am waiting to meet with my Pulmonologist next week.
Feels like I and getting worst - breathing is more difficult. No medications for IPF other that Esbriet,Provertil Inhaler and O2. Seems like Doc follows his old routine but no new meds, treatment or anything else that could help.
Seasonal allergies seem to make things worse. I live alone with my companion dog. Planning on selling my house and moving somewhere there are people aground. I am 74 and really do not like all the stress in my life.
I do. Diagnosed March 2018. Currently taking Esbriet, going to Pulmonary rehabilitation 2 days a week. Using 02 while sleeping and as needed during the day.
Can not physically exert myself without getting out of breath. No problem when resting. Life is getting more difficult each month. I live alone with my dog. Can not take her for too many walks, difficult grocery shopping and cleaning the house.
Very depressing, no cure ir hope. Looking for stem cell trestment or new medications to.
provide relief.
Hi all,
I'd like to introduce you to newest member of the moderating team, @ethanmcconkey. Some of you have already seen Ethan in the Lung Health group connecting new members with long-standing members. As with all the moderators, Ethan will be in the background, keeping Connect welcoming, safe and inclusive. Learn more about why and how we moderate: https://connect.mayoclinic.org/page/about-connect/tab/moderators/
As the activity and discussions related to pulmonary fibrosis (PF) grow, we plan to open a group dedicated to PF. Ethan will be helping me with that.
In the meantime, there are few members we haven't heard from for a while. @francko, how are you doing? Did you find a portable oxygen machine that works for you?
Also, @penlee have you found strategies to cope with the ongoing fatigue? Does the cooler weather help?
@keira were you able to get that chronic cough under control? What helped?
Let's help Ethan get to know you -- the members of this group. Post an update, tell the group a little about you and how you're doing.
I do have a quick question for the group ….I flew last Thursday for the fist time in 6 years since my disability. Prior to that I have flown over a 1,000,000 miles.
I have an Oxus POC that took with me. While in flight I checked my o2 several times getting readings from 61-75% , my usual readings are 88-92% . I wonder if the purity of the o2 in an aircraft might be slightly less than normal causing the concentrator to not produce as good? Plus I think I had the begging on a flare.
I'm heading back Monday and its a 2 hour flight so not too long.
Any and all feedback is greatly appreciated.
Breathe easy
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Yes, diagnosed March 2018. Been taking Esbriet since April and in Pulmonary Rehab. Searching for medical trials that offer stem cell treatment or medication that will help. Very depressing at times. No cure!
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Helpful -
Hug
1 Reaction@wba3721 I know it is a tough diagnosis to receive, as well as a tough disease to live with. Do you find that the Esbriet helps?
I was diagnosed with IPF(Idiopathic Pulmonary Fibrosis) about 2 years ago. I have been on OFEV 150mg 2X daily. This past February I had stem cell therapy. In May 2018 I had a breathing test to see where I was. There was no change during the past year so that was good news to me that I am stable. I do have an annoying cough after some exertion when I work around the yard so I have to pace myself but that is ok, I'm still able to do most of what I want. Oh, BTW, I'll be 80 in about a week so life is good.
@robinson i was diagnosed with IPF in July and also take Ofev 150mg2Xday. I went through every emotion because I thought I was going to die and I just turned 66! I have decided I’m not going to die of this, but I’m going to live with it. Were you ever a smoker?
Where did you get the stem cell therapy? I was diagnoised with IPF in March 2918 and have been taking Ebriet. I thing i a getting worse. More difficult breathing and can not exert myself. I think stem cell therapy may be the answer for me but can not finf a legitimate provider.
Hi all,
I'd like to introduce you to newest member of the moderating team, @ethanmcconkey. Some of you have already seen Ethan in the Lung Health group connecting new members with long-standing members. As with all the moderators, Ethan will be in the background, keeping Connect welcoming, safe and inclusive. Learn more about why and how we moderate: https://connect.mayoclinic.org/page/about-connect/tab/moderators/
As the activity and discussions related to pulmonary fibrosis (PF) grow, we plan to open a group dedicated to PF. Ethan will be helping me with that.
In the meantime, there are few members we haven't heard from for a while.
@francko, how are you doing? Did you find a portable oxygen machine that works for you?
Also, @penlee have you found strategies to cope with the ongoing fatigue? Does the cooler weather help?
@keira were you able to get that chronic cough under control? What helped?
Let's help Ethan get to know you -- the members of this group. Post an update, tell the group a little about you and how you're doing.
Greetings all, as you asked I do much better energy wise with the cool fall weather. It is beautiful where I live in Oregon. The poor air quality/smoke in August and September bothered me a lot, though I stayed inside my home on the bad (moderate and above). My latest new pulmonologist feels I have reactive airway disease and need to use the rescue inhaler. It seems to help sometimes. I am still trying to figure out when to take those puffs. Pulmonary fibrosis is a balancing act of activity, food intake and medications. Note: I am having difficulty getting mycophenalate ( generic of cell Celcept). Anyone else? Counting my blessings.
-
Like -
Helpful -
Hug
1 ReactionI would like to get more information on both potential stem cell treatment and new medications for IPF.
I was diagnosed Feb/March 2018. Started Esbriet about two months latter. Been doing P Rehab for the last 4 months. Been on O2 at night sinceJune 2018. Just started using it during the day on an as needed basis. Had a Sleep Study last week and am waiting to meet with my Pulmonologist next week.
Feels like I and getting worst - breathing is more difficult. No medications for IPF other that Esbriet,Provertil Inhaler and O2. Seems like Doc follows his old routine but no new meds, treatment or anything else that could help.
Seasonal allergies seem to make things worse. I live alone with my companion dog. Planning on selling my house and moving somewhere there are people aground. I am 74 and really do not like all the stress in my life.
Feeling discouraged.
I do. Diagnosed March 2018. Currently taking Esbriet, going to Pulmonary rehabilitation 2 days a week. Using 02 while sleeping and as needed during the day.
Can not physically exert myself without getting out of breath. No problem when resting. Life is getting more difficult each month. I live alone with my dog. Can not take her for too many walks, difficult grocery shopping and cleaning the house.
Very depressing, no cure ir hope. Looking for stem cell trestment or new medications to.
provide relief.
-
Like -
Helpful -
Hug
1 ReactionHi Ethan...welcome aboard!
I do have a quick question for the group ….I flew last Thursday for the fist time in 6 years since my disability. Prior to that I have flown over a 1,000,000 miles.
I have an Oxus POC that took with me. While in flight I checked my o2 several times getting readings from 61-75% , my usual readings are 88-92% . I wonder if the purity of the o2 in an aircraft might be slightly less than normal causing the concentrator to not produce as good? Plus I think I had the begging on a flare.
I'm heading back Monday and its a 2 hour flight so not too long.
Any and all feedback is greatly appreciated.
Breathe easy