I talked with them several times and was told that Mayo does not have stem cell therapy/treatment for Idiopathic Pulmonary Fibrosis. I am also in the data base but have never been contacted regarding resesrc Studies.
I talked with them several times and was told that Mayo does not have stem cell therapy/treatment for Idiopathic Pulmonary Fibrosis. I am also in the data base but have never been contacted regarding resesrc Studies.
@wba3721 I'm glad you called. I'm sure that they explained that Lung Regeneration is a focus area of study at Mayo Clinic. Regenerative medicine has the potential to provide innovative new therapies for people with lung diseases, including chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, pulmonary arterial hypertension and bronchiolitis obliterans. Researchers have only recently moved from animal models and Mayo Clinic investigators are now attempting to recellularize human lungs. It is still very early days, which is exciting, yet disappointing I'm sure.
Hi @djallan, thank you for reporting the scam post. It has been deleted and the member banned.
To all, When you see scam posts or questionable posts on Connect, please click Report in the bottom right hand corner of the post. This activates a message to the moderating team. We will review and act on it right away.
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Thank you for keeping Mayo Clinic Connect safe and welcoming.
I'll see my pulmonologist next week. What should I ask him? After five or six years of being monitored for my slowly deteriorating lung condition--coughing, throat clearing, two or three bouts of out-patient pneumonia--I've been diagnosed with pulmonary fibrosis. Idiopathic? I don't know. According to Dr. Google, it's mild--for now. I think I'll be asked to start an anti-fibrotic. But which one? Both Olev and Esbriet sound scary. Is the medical cookbook for this disease something any decent pulmonologist can follow, or is it necessary to go to a teaching hospital? I'll be 80 in December and am in generally good health, but I do have low platelets and several other conditions not uncommon for my age.
I'll see my pulmonologist next week. What should I ask him? After five or six years of being monitored for my slowly deteriorating lung condition--coughing, throat clearing, two or three bouts of out-patient pneumonia--I've been diagnosed with pulmonary fibrosis. Idiopathic? I don't know. According to Dr. Google, it's mild--for now. I think I'll be asked to start an anti-fibrotic. But which one? Both Olev and Esbriet sound scary. Is the medical cookbook for this disease something any decent pulmonologist can follow, or is it necessary to go to a teaching hospital? I'll be 80 in December and am in generally good health, but I do have low platelets and several other conditions not uncommon for my age.
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
Sue
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
Sue
Sue,
I appreciate your thoughtful, detailed response. I’d happened across the Mayo piece some time ago, but the "14 questions to ask" was new to me. It’s exceptionally helpful. (I was startled to learn that 90 percent of the fibrosis patients have GERD. I have it big-time.)
I’ll see my pulmonologist a week from Thursday in Asheville where the only thing we mine is tourist dollars. My uncle, a coal miner in West Virginia where I grew up, died of black lung. My family doctor has referred me to the Duke Lung Clinic in case a second opinion is warranted, and it probably will be.
I’ll let you know what develops. Thanks for asking. And thanks for helping get oriented to and get started on whatever’s ahead.
Bob
Sue,
I appreciate your thoughtful, detailed response. I’d happened across the Mayo piece some time ago, but the "14 questions to ask" was new to me. It’s exceptionally helpful. (I was startled to learn that 90 percent of the fibrosis patients have GERD. I have it big-time.)
I’ll see my pulmonologist a week from Thursday in Asheville where the only thing we mine is tourist dollars. My uncle, a coal miner in West Virginia where I grew up, died of black lung. My family doctor has referred me to the Duke Lung Clinic in case a second opinion is warranted, and it probably will be.
I’ll let you know what develops. Thanks for asking. And thanks for helping get oriented to and get started on whatever’s ahead.
Bob
Bob - You are so welcome. I remember how helpful the people on Connect were when my diagnosis was dropped on me 3 1/2 years ago, by a pulmonologist whose idea of explaining was handing me a one page handout about the drugs he was prescribing. I was lucky he had a good nurse, and that I found Connect - where I learned about options he had never heard of.
Sue
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
Sue
Hi Sue,
I saw my new doc at Duke yesterday and, on balance, it was a good experience. With several years of old CT scans and PFTs, he thought I was still fairly mild, but declining. How soon? How far? Who knows? He started me on OFEV. For me he thought it was preferable to the other one. Even with your helpful tips on dealing with the side effects, I wasn't at all enthusiastic. But I was out-voted two to one. (My wife went with me.)
The plan is for me to have a PFT every three months--alternating with my pulmonologist here in Asheville--and have a CT scan annually or sooner if needed. I'm okay with that and hope my local pulmonologist will be too. I haven't broken the news to him yet.
Thanks again for your help.
Bob
Hi Sue,
I saw my new doc at Duke yesterday and, on balance, it was a good experience. With several years of old CT scans and PFTs, he thought I was still fairly mild, but declining. How soon? How far? Who knows? He started me on OFEV. For me he thought it was preferable to the other one. Even with your helpful tips on dealing with the side effects, I wasn't at all enthusiastic. But I was out-voted two to one. (My wife went with me.)
The plan is for me to have a PFT every three months--alternating with my pulmonologist here in Asheville--and have a CT scan annually or sooner if needed. I'm okay with that and hope my local pulmonologist will be too. I haven't broken the news to him yet.
Thanks again for your help.
Bob
Thank you for sharing your update. I'm glad to hear you have a good doctor and a solid plan. I hope the meds will be manageable and keep you stable longer.
Come on back and visit whenever you have any questions.
Sue
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I talked with them several times and was told that Mayo does not have stem cell therapy/treatment for Idiopathic Pulmonary Fibrosis. I am also in the data base but have never been contacted regarding resesrc Studies.
@wba3721 I'm glad you called. I'm sure that they explained that Lung Regeneration is a focus area of study at Mayo Clinic. Regenerative medicine has the potential to provide innovative new therapies for people with lung diseases, including chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, cystic fibrosis, pulmonary arterial hypertension and bronchiolitis obliterans. Researchers have only recently moved from animal models and Mayo Clinic investigators are now attempting to recellularize human lungs. It is still very early days, which is exciting, yet disappointing I'm sure.
You can read more here: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration
Be very careful ❗ This is a SCAM❗❗
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1 ReactionHi @djallan, thank you for reporting the scam post. It has been deleted and the member banned.
To all, When you see scam posts or questionable posts on Connect, please click Report in the bottom right hand corner of the post. This activates a message to the moderating team. We will review and act on it right away.
See more info on why and how we moderate: https://connect.mayoclinic.org/page/about-connect/tab/moderators/
Thank you for keeping Mayo Clinic Connect safe and welcoming.
I'll see my pulmonologist next week. What should I ask him? After five or six years of being monitored for my slowly deteriorating lung condition--coughing, throat clearing, two or three bouts of out-patient pneumonia--I've been diagnosed with pulmonary fibrosis. Idiopathic? I don't know. According to Dr. Google, it's mild--for now. I think I'll be asked to start an anti-fibrotic. But which one? Both Olev and Esbriet sound scary. Is the medical cookbook for this disease something any decent pulmonologist can follow, or is it necessary to go to a teaching hospital? I'll be 80 in December and am in generally good health, but I do have low platelets and several other conditions not uncommon for my age.
Hello, I'm not sure how much your read on "Dr Google" (love that term!) but here is info from Mayo:
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695
Here are some suggested questions for your pulmonologist that may help you decide whether (s)he is a good person to treat you: https://pulmonaryfibrosisnow.org/2018/07/10/pulmonary-fibrosis-14-questions-to-ask-your-doctor-after-a-diagnosis/
Pulmonary fibrosis would be classified as a rare disease, as it affects around 150,000 people in the US, or about 5/10,000. In contrast about 25 million, or 750/10,000 have asthma. So while it would be unusual for a pulmonologist to see a lot of patients with PF, many in smaller markets or mining areas may see it fairly often.
By the way, to me, all drugs sound scary. In your place, I would be interested in exploring all non-drug options like supplemental oxygen and exercise too.
I would like to hear what you learn at your appointment, and whether tou decide to keep your doc, or get a recommendation for a new one.
Sue
-
Like -
Helpful -
Hug
2 ReactionsSue,
I appreciate your thoughtful, detailed response. I’d happened across the Mayo piece some time ago, but the "14 questions to ask" was new to me. It’s exceptionally helpful. (I was startled to learn that 90 percent of the fibrosis patients have GERD. I have it big-time.)
I’ll see my pulmonologist a week from Thursday in Asheville where the only thing we mine is tourist dollars. My uncle, a coal miner in West Virginia where I grew up, died of black lung. My family doctor has referred me to the Duke Lung Clinic in case a second opinion is warranted, and it probably will be.
I’ll let you know what develops. Thanks for asking. And thanks for helping get oriented to and get started on whatever’s ahead.
Bob
Bob - You are so welcome. I remember how helpful the people on Connect were when my diagnosis was dropped on me 3 1/2 years ago, by a pulmonologist whose idea of explaining was handing me a one page handout about the drugs he was prescribing. I was lucky he had a good nurse, and that I found Connect - where I learned about options he had never heard of.
Sue
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Helpful -
Hug
2 ReactionsHi Sue,
I saw my new doc at Duke yesterday and, on balance, it was a good experience. With several years of old CT scans and PFTs, he thought I was still fairly mild, but declining. How soon? How far? Who knows? He started me on OFEV. For me he thought it was preferable to the other one. Even with your helpful tips on dealing with the side effects, I wasn't at all enthusiastic. But I was out-voted two to one. (My wife went with me.)
The plan is for me to have a PFT every three months--alternating with my pulmonologist here in Asheville--and have a CT scan annually or sooner if needed. I'm okay with that and hope my local pulmonologist will be too. I haven't broken the news to him yet.
Thanks again for your help.
Bob
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Helpful -
Hug
1 ReactionThank you for sharing your update. I'm glad to hear you have a good doctor and a solid plan. I hope the meds will be manageable and keep you stable longer.
Come on back and visit whenever you have any questions.
Sue
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Helpful -
Hug
1 Reaction