Re: new member: info

[Guest guest]

... I want to say welcome to our board. You are in the best place you can be with all of this. Always someone here to help, support and give good feedback that you can count on.

I'll catch up with you later. You said so much in your post I can't respond to it all right now but again welcome!

There are those who live 10, 12, 15 years with IPF. You won't die in the next month.

God Bless.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new member: info

age 70; diagnosed based on CT scan in August, while doctors were looking for blood clots in either heart or lungs. Lung specialist characterizes the condition as mild; he has shown me the honeycomb pattern on his computer. He recommended 1.5 grams of NAC, which i have not yet started to take. I read online a recent report that implicates NAC with causing pulmonary hypertension.The doctor has never mentioned that IPF is a terminal illness.I have had to rely on information from the Mayo Clinic, Pulmonary Fibrosis Foundation, and a few other sites, to get a better grasp of what to expect.I have read that the median survival rate is 3 years after diagnosis. No one, however, discusses "quality of life" -- presumably that average of 3 years includes a lot of time spent in a state of being barely able to breathe.I have also read that a common pattern for IPF is for a person to be symptom-free for perhaps a year or two after diagnosis -- and then experience a sharp, rapid decline.My IPF may, or may not, be complicated by a heart condition: several weeks before the CT scan was done, I was told by an electrocardiologist that i had a flutter in one heart chamber, and atrial fibrillation in the other. (I had been taken to ER by ambulance, following an ECG done in a clinic, with a heart beat rate of nearly 200 bpm.) At the end of September, a catheter ablation was done to deal with the flutter. It apparently worked, but a recent Holter Monitor test showed that my arrythmia has increased by 12%, compared to one done prior to the ablation.) I am due to have another Holter Monitor test done on Nov 27th. (Due to the ablation, I was allowed to stop taking a beta blocker and digoxin -- and felt much less dizzy and disoriented as a result. I continue to take a blood thinner - warfarin.)An Oximeter test was done, also in late September, recording my oxygen levels during the night. I was deficient in oxygen 90% of the time, and "severely deficient" at times.My heart, it appears, is contributing to low levels of oxygen in my body. The lung specialist believes there is a crossover effect between heart and lungs (due to sleep apnea)and that both the irrythmia and oxygen deficiency are releated. He has ordered up a sleep study that will be done in the hospital, leading most likely to CPAP therapy.I am a non-smoker, not overweight, exercise by walking whenever I can (but in the last two months I notice a frequent shortage of breath and an increasing cough... not a deep cough, more like a reflex -- but now frequent.)As I said, the original CT scan was done in August. I was not aware of any IPF symptoms at that time. But now there is a feeling of "tightness" in my chest when I breathe, sometimes odd pains, and the frequent cough. I would like to have another CT Scan done by the end of the year -- but I don't know if the lung specialist will authorize it.I live in Canada, where most of what I need (except CPAP equipment) is covered by a government health plan. I would welcome having a doctor who is candid with me about IPF. I would also welcome any further information or advice that readers of this forum may care to provide. johnH

[Guest guest]

:

What province are you from? I am in New Brunswick. I was diagnosed with Pulmonary Fibrosis in June of last year and have been a member of this board for that same time period. There is a wealth of information here and there is always someone to answer your questions. The best thing is that their information is based on personal experience and not impersonal statistics. They are a very kind and caring group and always helpful. Diane IPF June 07New Brunswick, Canada

To: Breathe-Support Sent: Tuesday, November 18, 2008 4:30:09 PMSubject: new member: info

age 70; diagnosed based on CT scan in August, while doctors were looking for blood clots in either heart or lungs. Lung specialist characterizes the condition as mild; he has shown me the honeycomb pattern on his computer. He recommended 1.5 grams of NAC, which i have not yet started to take. I read online a recent report that implicates NAC with causing pulmonary hypertension.The doctor has never mentioned that IPF is a terminal illness.I have had to rely on information from the Mayo Clinic, Pulmonary Fibrosis Foundation, and a few other sites, to get a better grasp of what to expect.I have read that the median survival rate is 3 years after diagnosis. No one, however, discusses "quality of life" -- presumably that average of 3 years includes a lot of time spent in a state of being barely able to breathe.I have also read that a common pattern for IPF is for a person to be symptom-free

for perhaps a year or two after diagnosis -- and then experience a sharp, rapid decline.My IPF may, or may not, be complicated by a heart condition: several weeks before the CT scan was done, I was told by an electrocardiologist that i had a flutter in one heart chamber, and atrial fibrillation in the other. (I had been taken to ER by ambulance, following an ECG done in a clinic, with a heart beat rate of nearly 200 bpm.) At the end of September, a catheter ablation was done to deal with the flutter. It apparently worked, but a recent Holter Monitor test showed that my arrythmia has increased by 12%, compared to one done prior to the ablation.) I am due to have another Holter Monitor test done on Nov 27th. (Due to the ablation, I was allowed to stop taking a beta blocker and digoxin -- and felt much less dizzy and disoriented as a result. I continue to take a blood thinner - warfarin.)An Oximeter

test was done, also in late September, recording my oxygen levels during the night. I was deficient in oxygen 90% of the time, and "severely deficient" at times.My heart, it appears, is contributing to low levels of oxygen in my body. The lung specialist believes there is a crossover effect between heart and lungs (due to sleep apnea)and that both the irrythmia and oxygen deficiency are releated. He has ordered up a sleep study that will be done in the hospital, leading most likely to CPAP therapy.I am a non-smoker, not overweight, exercise by walking whenever I can (but in the last two months I notice a frequent shortage of breath and an increasing cough... not a deep cough, more like a reflex -- but now frequent.)As I said, the original CT scan was done in August. I was not aware of any IPF symptoms at that time. But now there is a feeling of "tightness" in my chest when I breathe, sometimes odd

pains, and the frequent cough. I would like to have another CT Scan done by the end of the year -- but I don't know if the lung specialist will authorize it.I live in Canada, where most of what I need (except CPAP equipment) is covered by a government health plan. I would welcome having a doctor who is candid with me about IPF. I would also welcome any further information or advice that readers of this forum may care to provide. johnH

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[Guest guest]

By the way , I too am 70, dx (diagnosed almost 3 years ago). I'm doing pretty good. IPF is not the cause of most of my medical problems...

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: new member: info

We welcome you and going to answer the most important question first andthats what you asked about quality of life. It can suck, it can begreat. It will be everything. Good and bad. My life is the best its everbeen. Much of what this site is about is learning to live with thedisease. You can do it.Are you on oxygen? Do you have an oximeter to see how your sats areunder different conditions? Oxygen, when needed, is your friend and keyto any quality and to protecting other organs. Oxygen in your blood is akey.Take control of your medical care with getting copies of tests andreports and asking questions and insisting they are answered. Now, Idon't know how you do this in Canada but get to a specialist inInterstitial Lung Diseases, who in the US would normally be at ateaching hospital. They differ from other lung diseases.Take in one thing at a time and soon you'll start to get a handle onyour condition. Mainly just live the best you can. No one can predicthow it will progress.>> age 70; diagnosed based on CT scan in August, while doctors werelooking for blood clots> in either heart or lungs.>> Lung specialist characterizes the condition as mild; he has shown methe honeycomb> pattern on his computer. He recommended 1.5 grams of NAC, which i havenot yet started> to take. I read online a recent report that implicates NAC withcausing pulmonary> hypertension.>> The doctor has never mentioned that IPF is a terminal illness.> I have had to rely on information from the Mayo Clinic, PulmonaryFibrosis Foundation,> and a few other sites, to get a better grasp of what to expect.>> I have read that the median survival rate is 3 years after diagnosis.No one, however,> discusses "quality of life" -- presumably that average of 3 yearsincludes a lot of time> spent in a state of being barely able to breathe.>> I have also read that a common pattern for IPF is for a person to besymptom-free for> perhaps a year or two after diagnosis -- and then experience a sharp,rapid decline.>> My IPF may, or may not, be complicated by a heart condition: severalweeks before the CT> scan was done, I was told by an electrocardiologist that i had aflutter in one heart> chamber, and atrial fibrillation in the other. (I had been taken to ERby ambulance,> following an ECG done in a clinic, with a heart beat rate of nearly200 bpm.) At the end of> September, a catheter ablation was done to deal with the flutter. Itapparently worked, but> a recent Holter Monitor test showed that my arrythmia has increased by12%, compared to> one done prior to the ablation.) I am due to have another HolterMonitor test done on Nov> 27th. (Due to the ablation, I was allowed to stop taking a betablocker and digoxin -- and> felt much less dizzy and disoriented as a result. I continue to take ablood thinner -> warfarin.)>> An Oximeter test was done, also in late September, recording my oxygenlevels during the> night. I was deficient in oxygen 90% of the time, and "severelydeficient" at times.>> My heart, it appears, is contributing to low levels of oxygen in mybody. The lung> specialist believes there is a crossover effect between heart andlungs (due to sleep apnea)> and that both the irrythmia and oxygen deficiency are releated. He hasordered up a sleep> study that will be done in the hospital, leading most likely to CPAPtherapy.>> I am a non-smoker, not overweight, exercise by walking whenever I can(but in the last> two months I notice a frequent shortage of breath and an increasingcough... not a deep> cough, more like a reflex -- but now frequent.)>> As I said, the original CT scan was done in August. I was not aware ofany IPF symptoms> at that time. But now there is a feeling of "tightness" in my chestwhen I breathe,> sometimes odd pains, and the frequent cough. I would like to haveanother CT Scan done> by the end of the year -- but I don't know if the lung specialist willauthorize it.>> I live in Canada, where most of what I need (except CPAP equipment) iscovered by a> government health plan. I would welcome having a doctor who is candidwith me about> IPF. I would also welcome any further information or advice thatreaders of this forum may> care to provide.>> johnH>

[Guest guest]

I forgot to tell about the dry cough that is one of the synptoms of the disease. I have asked the docs about the cough, they don't know why. When the cough becomes productive, call a doctor. Pink Joyce IPF 3/06 Pennsylvania

Subject: Re: new member: infoTo: Breathe-Support Date: Tuesday, November 18, 2008, 5:00 PM

,

Joyce's post to you was excellent and touched on alot of relevent information. We're all unique and the way our bodies react to this disease is unique also. Couple that with the fact that there are many many different forms of fibrosis and you have the relative impossibility of prediciting the course of anyone's illness.

But as some around here are fond of saying, we don't come with an expiration date. Most of us LIVE quite well with this disease even those of us tethered to supplemental oxygen. Don't be discouraged, live may be changed but it is not over!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

From: voo99doo99 <undergroundm@ hotmail.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, November 18, 2008 3:30:09 PMSubject: new member: info

age 70; diagnosed based on CT scan in August, while doctors were looking for blood clots in either heart or lungs. Lung specialist characterizes the condition as mild; he has shown me the honeycomb pattern on his computer. He recommended 1.5 grams of NAC, which i have not yet started to take. I read online a recent report that implicates NAC with causing pulmonary hypertension.The doctor has never mentioned that IPF is a terminal illness.I have had to rely on information from the Mayo Clinic, Pulmonary Fibrosis Foundation, and a few other sites, to get a better grasp of what to expect.I have read that the median survival rate is 3 years after diagnosis. No one, however, discusses "quality of life" -- presumably that average of 3 years includes a lot of time spent in a state of being barely able to breathe.I have also read that a common pattern for IPF is for a person to be symptom-free

for perhaps a year or two after diagnosis -- and then experience a sharp, rapid decline.My IPF may, or may not, be complicated by a heart condition: several weeks before the CT scan was done, I was told by an electrocardiologist that i had a flutter in one heart chamber, and atrial fibrillation in the other. (I had been taken to ER by ambulance, following an ECG done in a clinic, with a heart beat rate of nearly 200 bpm.) At the end of September, a catheter ablation was done to deal with the flutter. It apparently worked, but a recent Holter Monitor test showed that my arrythmia has increased by 12%, compared to one done prior to the ablation.) I am due to have another Holter Monitor test done on Nov 27th. (Due to the ablation, I was allowed to stop taking a beta blocker and digoxin -- and felt much less dizzy and disoriented as a result. I continue to take a blood thinner - warfarin.)An Oximeter

test was done, also in late September, recording my oxygen levels during the night. I was deficient in oxygen 90% of the time, and "severely deficient" at times.My heart, it appears, is contributing to low levels of oxygen in my body. The lung specialist believes there is a crossover effect between heart and lungs (due to sleep apnea)and that both the irrythmia and oxygen deficiency are releated. He has ordered up a sleep study that will be done in the hospital, leading most likely to CPAP therapy.I am a non-smoker, not overweight, exercise by walking whenever I can (but in the last two months I notice a frequent shortage of breath and an increasing cough... not a deep cough, more like a reflex -- but now frequent.)As I said, the original CT scan was done in August. I was not aware of any IPF symptoms at that time. But now there is a feeling of "tightness" in my chest when I breathe, sometimes odd

pains, and the frequent cough. I would like to have another CT Scan done by the end of the year -- but I don't know if the lung specialist will authorize it.I live in Canada, where most of what I need (except CPAP equipment) is covered by a government health plan. I would welcome having a doctor who is candid with me about IPF. I would also welcome any further information or advice that readers of this forum may care to provide. johnH