Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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@frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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I have had IPF for 18 months. I have just developed hoarseness sometimes. Paul

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@frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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Fran,
I think you have the perfect marriage!
Sorry, couldn’t let that pass!
Check with a pulmonologist and he may order a throat spray that may help such as
symbecort; then again, it could be something else. Got to check with a throat/ lung doctor but do it now while you’re ahead. Only gets worse!

Good luck! Walt
Have IPF for a few years!

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@frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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My husband has had the hoarseness for well over a year. It is getting worse however. I suspect IPF was not diagnosed earlier as what I am learning, it is a rare disease. Even though a year ago when he had a TIA, his lung x-ray showed cloudiness in his lungs. They treated him for pneumonia. Just got the news today about the med he will be taking, Anxious to get it started. Good luck Paul

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@richardlande

hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.

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Diagnosis– severe

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@richardlande

hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.

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Why is prednisone prescribed for ipf?

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Yes, diagnosed about 4 months ago. Still researching ways to improve my breathing. Not on oxygen but started Esbriet three weeks ago. Very interested in finding a legitimate stem cell treatment therapy.

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@richardlande

hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.

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@rosie82, Hello Rosie. I am very sympathetic towards your husband having IPF. There is nothing more miserable than trying to breathe. How much do you know about this disease? Prednisone is usually prescribed to get inflammation down.

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@wba3721

Yes, diagnosed about 4 months ago. Still researching ways to improve my breathing. Not on oxygen but started Esbriet three weeks ago. Very interested in finding a legitimate stem cell treatment therapy.

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@wba3721, Hi there. I am glad that you found Connect. I am a mentor for another lung disease group (Mac/Bronchiectasis) which is what I have. I do not know a great deal about the various types of Fybrosing lung conditions, but I know a little. I see a pulmonologist at the Mayo Clinic and I have asked him about stem cell therapy. He said the stem cell clinics that are charging people $9,000-$12,000 are bogus. That there is a reason that insurance does not cover it. Those treatments supposedly do not work. Please do not give up all hope that stem cell therapy won't be a possibility in the near future because things are changing raipidly. The Mayo Clinic in Jacksonville, Fl. has started new construction on a building that specializes in refurbishing lungs that would have in the past been unsuitable for transplant. They are also working on research to use one's own t-cells in refurbished lungs to cut down on rejection. If you do not already own one, I would suggest buying your own pulse oxometer or have dr prescribe one for you. They cost like $21.00 online w/out a script. That way, you can keep tabs on your oxygen levels. I am here for you if you need help researching anything or just need an ear. I hope others with IPF will jump into our conversation and can offer you tips. -Terri

Liked by cognac

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@dogwood928

I would love to hear from anyone 70+ and has had a lung transplant.

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@dogwood928, Hi there. I have been to support group meetings at the Mayo Clinic in Jacksonville. I did meet a few patients in there that had their transplants over the age of 70. They will do lung transplants on 70+ patients provided they fall under some guidelines. You must be fit and not have other serious diseases going on, cannot be overweight, must have great attitude. If you have not already, you can visit the transplant group and seek others that have had or will need a lung transplant. Best of luck to you – Terri

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@dogwood928

I would love to hear from anyone 70+ and has had a lung transplant.

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Windwalker, thanks for the encouraging information. I am doing my best to exercise, keep weight in check, and have an optimistic attitude. Keeping my fingers crossed!

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@richardlande

hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.

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Use Prednisone for gout

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@dogwood928

I would love to hear from anyone 70+ and has had a lung transplant.

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Adogwood928 Hi there. It sounds like you are doin g what you can. Exercise and good diet can do wonders. The more exercise you get helps the muscles to not require as much oxygen and can help with the shortness of breath. You had asked about transplants at age 70; did your doctor mention that you may be headed for one any time in the near future?

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@dogwood928

I would love to hear from anyone 70+ and has had a lung transplant.

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He referred me to Cleveland, and I have an appointment for testing. But after talking to several people who have had or know someone who has had a lung transplant at the university of Ky. Medical Center, I have asked my pulmonologist for a referral there. I live in Lexington, and it would certainly be more convenient for me. And, if I have a problem, I can get there within minutes.

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@dogwood928

I would love to hear from anyone 70+ and has had a lung transplant.

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@dogwood928 Hi there! I just wanted to add that when deciding on where to have a transplant done; be sure to do your homework. Ask how many lung transplants they do in a year, and survival rate of transplantees. Ask how many years on average does their transplantee patient survive. There are links online that give the stats for most transplanting hospitals in the country. I will see if I can find the link for you. Best Wishes – Terri

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