Note: Deceased members are noted by an *
1. : Paula Falls
1. : Mary Faria,
|1. : Gloria
"Carol" Farmer, 1942, F
2. : Georgia. email@example.com I am currently not a caregiver.
3. : Emphysema
4. : 60
5. : Difficult to say - other health complications preceded
6. : Increased difficulty breathing, walking, climbing stairs
7. : Was under the care of a pulmonologist
8. : In 1998, Imy right lung was removed due to cancer. I was not told until 2003 that the remaining lung was diseased. I suppose I should have figured this out on my own, but I didn't. In 1998 I had ever test conceivable. Since that time, only chest x-rays and spirometry (?)
9. : Pulmonologist; no
10. : no
11. : Combivent 2 puffs 4x/day; Advair 250, 2x/day
12. : Only ones I have taken
13. : If this questions refers to all medications and not just those prescribed for COPD: Nexium 40mg 2x/day; Tenormin 50mg 1x/day
14. : N/A
15. : Celexa 40mg 1x/day
16. : No
17. : I asked (finally) if there were somewhere I could go to learn to cope with physical activity and breathing deficiencies. The pulmonologist recommended one in 2002 and I went for 7 weeks. I was on o2 for all activities, i.e., walking around room, climing small stair unit, riding a stationery bike and some kind of gadget for arms.
18. : No
19. : Yes. For all "walking" activities or housework, shopping - any physical activity really, sleeping.
20. : From a breathing standpoint I am mostly intolerant to heat and humidity. I cover my nose in the cold weather -- I have trouble sleeping - but generally sleep better with the oxygen on. I have severe GERD.
21. : Yes; full time. But it's an effort.
22. : No
23. : Group insurance through my employer
24. : No
25. : Sure
26. : Lung cancer in 1998 was my second go around with cancer, and all my energies went into stopping smoking, halting the disease, surviving the chemo and radiation and getting my life back on track. I wish that someone had told me that I would also have to deal with emphysema and/or COPD, once I "recovered". I was told that my remaining lung would expand and compensate for the loss of it's other half. I believe, as my breathing actually worsened, I thought that the cancer had spread. This caused great anxiety needlessly. If I had known to expect emphysema I believe I would have handled things differently.
27. : Yes, unfortunately.
28. : No, which is one of the reasons I was attracted to this site.
29. : Prednisone and levaquin
30. : No
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Daniel Fatzler, 1966, M
2. : New Jersey, firstname.lastname@example.org
3. : Emphysema (Idiopathic)
4. : July 2003
5. : 33
6. : Short of Breath
7. : Yes, after 2 years
8. : PFT, CT Scan, X-Ray
9. : Pulmo; yes
10. : Yes
11. : Advair 250; Atrovent
13. : Prednisone 20mg
17. : Pulm Rehab - Pending
19. : No
21. : Full
23. : Private Insurance
24. : On Transplant List
25. : Yes, email
27. : Never
28. : Yes
30. : Yes, 4 times
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1. : Larry Faubion,
1. Michael Fealy,1943,male
2. FL email@example.com
6. Shortness of breath
8. Lung capacity/x-rays
9. Technician - No
11. Combivent-2puffs/4times a day
Serevent-2puffs/twice a day
12. No history
13. Prednisone-1/10mg tab once a day
Guaifenesen-1/600mg tab twice a day
14. No history
15. BuSpar 15mg twice a day
18. Yes - Albutarol & Atrovent
20. Excessive perspiration of head and neck while sleeping
22. Only recently applied
23. No insurance
26. I have been told I have approximately 5 yrs to live.
28. No-I was told not to
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1. : Mary Ann Ferreira, 1945, female
2. : MA, firstname.lastname@example.org
3. : Asthma, chronic brochitis,emphysema
4. : I have had bronchitis most of my life, recently dx with emphysema
5. : 30
6. : chest pains
7. : no
8. : At the time, chest x-ray
9. : PCP
10. : No
11. : spiriva, advair, albuterol
13. : none
15. : wellbutrin, 150mg QD, to help quit smoking
17. : not yet on both questions
18. : no
19. : yes, I use it at night. Sometimes during the day
20: Intolerance to heat, incontinence, sleeplessness
21. : full-time
22. : Dr wanted me to go on disability, I refused, can't afford it
23. : private insurance - so far so good
24. : no
25. : not sure I could answer any questions but certainly available for support
27. : yes
28. : no
29. : z-pack
30. : no, not yet - but have family hx of emphysema on both sides of the family
1. : Shannon
Ferrini, 1965, female
1. : Sandy Ferris
1. : Edward Filmer
Sammy Fisher, 09/30/29, Male
2. Meridian, ID, email@example.com
3. Emphysema and Chronic Bronchitis
6. Coughing, Shortness of breath and feeling lousy
9. My personal physician, yes
11. Azmacort, 20mg, twice daily
Serevent, 21mg, once daily
Advair, 100/50, once daily
13. Guiadrine G-1200 (Duratuss), 2 each daily
Singular, 10mg, one daily
14. Two in question 13 is all I have taken
16. None at all
17. No rehab, but purse lipped breathing, walking and exercises that can be done while sitting up in chair
19. Yes, 24/7, 2.5 ltrs. daytime, 3 ltrs. when sleeping
23. Private Insurance (Blue Shield health Sense 65 plus) and Medicare. I don’t think coverage is ever sufficient
25. Yes, e-mail is best but I can be reached at 208-888-1015 or at 4831 Sunfish Ln., Meridian, ID 83642-5345
26. I’ve experienced that being handicapped in this area doesn’t buy you much respect, especially from people who smoke and
I bless the day I found EFFORTS!
27. Yes, FORMER!
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|1. : 1.
Mary Anne Fitch,1942,female
2. : 2. Florida, tywin@mfi 2a. No
3. : 3. Asthma, Chronic bronchitis
4. : 4. 1994
5. : 5. 1994, had the flu
6. : 6. Woke up one night and couldn't breath. It really scared me.
7. : 7. Had been going to asthma/allergy Dr for severe skin allergies
8. : 8. chest X-rays, Dr listening to chest, Spirometry tests in office
9. : 9.My asthma/allergy doctor. For a year I didn't believe that I had asthma. Next winter I caught a cold and had to see Dr's alternate. Even without knowing my history, he, too, said I had asthma by just listening to my chest. What a terrible shock at the time-very scarey;No, I feel like I was not given sufficient Info. When I asked if I had emphysema, I was told no you don't get that problem from asthma- they are 2 distinct problems. I was concerned because my father died from emphysema and his brother died from chronic bronchitis, asthma & emphysema. One uncle had eczema & I do too since age 4 years when it was severe; It is basically dormant now. When it went dormant, is when the asthma showed up. I purchased a book:ASTHMA by Allan M, Weinstein,M.D.,January,1992 edition, published by Ballantine Books - It is excellent-describes asthma, lists meds and how they work, tells what to ask your doctor, etc.
10. : 10. I do not understand this question.
11. : 11. Advair 250/50 every 12 hours;Intal and Albuterol 2 puffs each - 6 hours after Advair
12. : 12. Flonase, Rhinocort Aqua Nasal Spray. (I have chronic rhinitis)
13. : 13. Singular - 10 mg in evening; just finished Zithromax and now on Vantin-200mg twice daily,Prednisone dose pack =right now 20 mg/day(I'm just recovering from the flu, Yes, I had flu shot in 10/2003)
14. : 14. Vanceril,Azmacort,Aerobid - all caused terrible burning sensation in chest and severe hoarseness; can't take any form of theophylline=raises heart rate over 200 beats/min.
15. : 15. No. Even small doses cause aggravation of symtoms of fibromyalgia which I've had since 1971.
16. : Please see 14 and 15 above. Flonase and Rhinocort Aqua Nasal Spray causes my nose to bleed and burn when I breath.
17. : 17. Just walking. Do what ever I can do.I have gone to rehab for fibromygia since that condition does much better if you exercise. As long as I do not do any load bearing and isometric exercises I'm okay.
18. : 18. Sometimes. Albuterol or even better Xopenex. Nebulizer is used just when I catch a cold because I can't clear my lungs easily( I also have a double curvature of the spine which limits my lung capacity.)
19. : 19. No
20. : I normally have sleep problems because of the fibromylgia; but since the flu, my sleep pattern is all but abolished because of constant coughing. I literally feel like I am drowning because I have so much fluid coming up. Without the flu I find hot, dry atmosphere is the most irritating to my respiratory tract. Seems to cause inflammation, burning and fluid build up.
21. : 21. Full time; right now I have been off work for 2 weeks because of the flu.
22. : 22. No, I don't want to be if I can help it. I feel that staying active is the best way to prevent depression and physical deterioration. Besides then I will not have any insurance. (Ouch)
23. : 23. Private through work place
24. : 24. No
25. : 25. Yes. I usually go online in evenings when I am not exhausted from the day.
26. : Thank you for making EFFORTS a possibility to everyone. it is wonderful. I have viewed every single picture. These are real people with an alarming,lasting, frightening condition. COPD is a terrible problem. It should be treated as such not a means of guilt. All of us are human and we try to do what we think is best. Sometimes we fall short because we are not told or do not realize the truth until it is too late. I know because my parents really did not believe cigarette smoke was dangerous until my mother had her second heart attack because of smoking. By then it was too late for both parents.Then there are people like me who have never smoked but were around people who smoked all the time. I grew up around both parents who smoked a lot, went to college and frequented study areas blue with smoke, worked where co-workers used to smoke- yes, in a hospital!! Thank heavens for totally no smoking restaurants, hospital where I now work, etc. Now that I have this breathing problem, I am in real trouble if I am around cigarette or fireplace smoke. Converted my fireplace to electric.
27. : 27. Never
28. : 28. Yes, walking. Now that I am taking Intal I am able to walk slight inclines without feeling my chest is going to explode.
29. : 29. It was Zithromax. Now I'm not sure since I had to take Vantine also when the Zithromax did not seem to do the job.
30. : 30. No
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Jane Flagg*, 1935
2. Florida < firstname.lastname@example.org >
3. I have all three.
6. Several trips to emergency rooms
8. Pulmonary function tests and allergy tests
9. An allergist in Ohio. Yes at that time.
11. Albuterol, as needed, Atrovent, 2puffs, 4x daily, Qvar, 2 puffs 4x daily, Serevent, 1 puff 2 times daily. Also Nasacourt 4 puffs once daily.
12. Flovent, Intal, Combivent
13. Accolate 2x daily, Allegra 2x daily
14. I do not remember any.
16. Not to any that I currently take (if I’m careful)
17. I went through an 18 hour session at Winterhaven Hospital. Stretching, walking, exercise bike.
18. I use Albuterol Sulfate 4x daily. I only use 2/3 of a vial because any more than that is too much for me.
20. Yes, all of them I feel it is part of the disease and my age. I am having a terrible time with food induced asthma, and congestion.
23. Medicare and private. Yes
26. I found your site when I typed in “End stage emphysema” Another site uses the term a lot and I had never heard it. I have been refered to as “maxed out”
28. Not much
29. Biaxin!!! I often get infections. This antibiotic, combined with prednizone, has been working for me about 3-4 times a year for 10 to 15 years. I feel strongly that I would be in much worse shape today if it had not been available to me. I have an open end prescription for it. I tried Cipro once and it made me very ill.
30. Yes, but I never heard what the results were. I have a twin sister with the same disease, and my Mother died of it.
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1) Al Flater, born 1923, M
2) Florida, my email is MsPVBFlorida@worldnet.att.net. Dad doesn't do computers yet.
2a) I am the caregiver for Al. Deb Flater
I can't answer all the rest without asking Dad.... so I will answer what I know for sure:
17) No rehab suggested. I learned about it on the COPED list and talked to my Dad's doctor to get him in one. He just started... so no exercises yet.
19) Yes about 75% at time at home, 100% of time when outside.
20) Intolerance to heat
21) Retired, not working
22) Disabled, but not originally for emphysema
23) Private insurance, BC/BS of Massachusetts-Medex Gold and Medicare. Not an HMO. Insurance is very good, but very expensive.
24) No... was offered LVRS several years ago and turned it down.... thought was too risky.
25) I will be happy to help if I can.... just email me.... but don't know what I can contribute.
27) Dad is a former smoker..... about 1 to 1 1/2 packs a day for over 40 years.
28) Not exercising yet... just started rehab
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1. John E. Flower, 1946, Male
2. Texas/Kansas, email@example.com
3. Chronic Bronchitis, Emphysema
6. Short of Breath and an Annual physical
8. PFT, ABG
9. They were given at a hospital by a licensed RPT. No, the Dr response is you have a serious problem and you're going to die.
11. Combivent 2 puffs 4x's a day or as needed
Servent 2 puffs 2x's a day
Flovent (220) 2 puffs 2x's a day
13. Theophyline 2 pills a day
17. Yes but not with force until after a year or two. I ride the bike for 20 minutes, arm exercises 5 minutes, treadmill @ 2.6 to 3 MPH for 30 minutes. All of these except the arms are done 4 times a week. In addition I do weight lifting for upper body 2-3x's a week. This is all done with oxygen using the high flow method.
19. I am on oxygen 7x24. 1-2 lpm at rest, 3-4 lpm when active
20. I do have problems in extremely hot or cold weather. Cold is especially bad when it gets down to 20 and below.
21. I am retired.
23. I have private insurance. It provides great benefits including prescriptions. At present it pays for LVRS but of course that can change at any time.
25. Yes I would prefer email unless it is determined the interchange would be better served via phone or other more interactive method.
26. I find the medical community as a rule are very under informed as to this disease. I have had several Dr while I know I was in the early stages of E who could have made a bigger impression on me to stop smoking. I am not blaming others. However, I think more of an issue could have been made of the consequences. An example of this is the ALA, until recently, was still telling everyone if you would stop smoking your lungs would fully recover within 10 years. This is just not true. In addition I have gone to Rehab virtually from coast to coast and it makes my blood boil when I see PT's under exercising people to save on oxygen or worse yet asking the participants to bring their own 02. The great work Mark M and others like him do are far and few between. My problem has been much less since I started high flow 02 exercising with Mark.
27. Former for 10+ years
29. It depends on what the cause. If it is an infection with yellow or green sputum then Biaxin. If it is swelling without a change in color of sputum then Prednisone.
30. Yes Unfortunately, this was not the cause
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1. : Susie Floyd,
1. : REINE FORTIER
Diane Fournier1956, female
2. : Oregon, WhozYourMamaNow@excite.com
3. : Alpha-1 deficiency, A.A.T., Asthma, Chronic Bronchitis, Emphysema
4. : 47
5. : 1985
6. : hospitalized for pneumonia Mother's Day of 2004
7. : Yes, thank goodness!
8. : cat scan, x-ray, spiro
9. : primary care physician, yes from my pulmo
10. : no
11. : Advair 250/50, Spiriva, DuoNeb 4x a day
12. : I thought the Spiriva didn't work so my doctor took me off it, but a week later I was having trouble so he put me back on it
13. : prednisone 60x2, 40x2, 20x2, Neurontin 600mg for circulation, hydrochlorot 100mg as a diuretic
14. : all new to me except the prednisone and it always works
15. : no
16. : I'm dizzy alot and can no longer drive my car but I imagine it's a combination of all of the meds.
17. : go to re-hab 3x a week if I can make it
18. : DuoNeb 4x a day as needed
19. : yes, 24/7 at 3
20. : all of the above except cold -- for me the colder the better -- I also have gained a LOT of weight and have terrible swelling in my extremeties
21. : had to "retire" after I got out of the hospital
22. : yes, full disability
23. : private ended on July 31st and Medicaid took over immediately -- as for coverage I don't know so far they have covered everything
24. : no
25. : yes-- I'm home all the time now if you want to email me for my phone number please feel free to do so
26. : This past Monday I had my first Aralast infusion. It had to be administered at the local oncology lab but this week it will be done by a home nurse who will supposededly teach me how to do it! (I think NOT!!) This is all new and scary and I'm very angry that it wasn't found 20 years ago when I first started having problems with my lungs.
27. : Former, very light smoker(2 cigs a day), quit January 2004
28. : Re-hab
29. : starts with a T not the z-packs -- I think I've developed a resistance to them
30. : I am Alpha1
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1. Jan Frankie, born 1939, female
2. Arizona, Frankski@cyberhighway.net
3. Chronic Bronchitis, Emphysema and former Valley Fever.
6. I had what I thought was the flu and it wouldn't go away. Turned out to be Valley Fever. I had Pneumonia 2 years before and was having SOB after that
8. It has been so long ago I do not remember... I know I had a bunch of test, x-rays, etc..
9. My Pulmonolgist. After treatment for the Valley Fever put me in a safe area. the Doctor continuied to treat my Chronic Bronchitis.
10. I was tested for the Theo and was on it for 10 years.
11. I am now on Atrovent, 4gram, 4 times a day.
12. I use my nebulizer now with as much effect as my Inhaler.
13. Not taking anything at this time for breathing.
14. Theo worked well for me at the time but caused other health problems and had to quit taking it.
15. Yes. I take Desipramine 25mg 2 x day.
17. I have just asked my doctor about a rehab program and He said we would talk about it before summer got here.... summer 98'
18. Yes I use a nebulizer. and use Albuterol.
19. Yes I have a Concentrator at 02 and a portable E tank and use Oxygen at all times.
20. The heat causes me to have SOB. So in the summer time I stay inside a lot... I do swim everyday though. Here it can get as hot at 120 degrees and not cool off in the evenings... (can stay above 100 degrees).
21. I retired on disiability 7 years ago. however I am an artist and do computer art and oil paintings and pencil art. It gives me extra spending money now and then.
22. I am 100 per cent on disability because of COPD/E and other health problem and some caused by med's from my COPD. Also have arthritis in lower back.
23. I have Medicare and a HMO and feel that I am very well covered.
24. No Have never decussed it with my Doctor.
25.Yes I am available to answer any questions that anyone has, by e-mail or snail mail My snail mail address is:
1923 E Oxford Drive, Tempe, AZ 85283-2345 or ICQ # 7520286
27. I am a Former Smoker.
28. Only in the Swimming pool because of Back Problems
29. I can't help you here because I have been on so may different
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Vera Franks, 1942, female
(2) GA firstname.lastname@example.org
(3) Chronic Bronchitis, Emphysema
(6) short of breath, tired, sleepy
(8) X-ray, Pulmonary funtion test, CT-scan
(9) family doctor and Pulmonologist
(11) Albuterol for wheezing, or 5 min. before exercise--
Azmacort, 4 puffs 3 times daily
Serevent, 2 puffs twice daily
Albuterol and Atrovent in nebulizer 4 times daily
(12) All have helped.
(13) Muco-phen as needed for congestion, premarin 1 daily,
Prozac 40mg daily, Synthroid 1 daily, Ranitidine as needed
Celebrex 1 capsule twice daily if needed
(14) All have helped
(15) Prozac 40 mg
(17) yes- treadmill 1.5 for 30 min., stationary bike 30 min.,
stairs(5 steps) and arm exercises.
(18) yes- Albutorol and Atrovent solutions 4 times daily
(19) yes- 3 liters at rest and 4 for exercise or activities.
(20) intolerance to heat, sleeplessness
(21) retired at doctors orders
(22) full -
(23) private - yes
(24) not yet
(25) yes, any time, pho.770-532-8371
(26) I was already on Prozac before this illness due to my husbands death in 1995. I was his caretaker during the last 8 yrs of his
life, he died of COPD and Heart failure, mostly his heart.
(28) off and on
(29) Emoxil or Augmenten
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1. Wynona French - 1948 - F
2. Virginia - Wynona50@aol.com
3. Asthma-Chronic Bronchitis-Emphysema - all of them
5. Asthma and Chronic Bronchitis has a baby
6. Shortness of Breath when diagnosed with Emphysema - but twice a year to doctor with Bronchitis - as a teen twice had Pneumonia
7. Referred at age 42
8. All the standard Emphysema tests
9. Pulmonologist directed test - No - was only told I had Emphysema, Asthma and Chronic Bronchitis.
11. Maxair Inhaler / Flovent 4 puffs in am and 4 puffs in pm
12. I don't feel any have been effective
15. Zoloft 50 mg daily just started this
16. Nerveness on maxair for 20 minutes after taking
20. can not tolerate heat. humid areas, suffer sleeplessness
21. part time for the airlines
23. work insurance HMO - unsure
25. yes and email
27. smoker still
30. yes - not genetic
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Dec. 7, 1944
6. Had trouble breathing in the shower.
8. Breathing test by the preformed by a Doctor at Kaiser Hospital.
9. pulmonolgist and yes they went over the test with me.
11. ADVair 100/50 and Combivent
12. Azmacort, Servent
16. No None
21. Full Time
22. Not at this time
23. HMO and no not sufficient at all.
25. Home most evening use E mail
26. I have made every effort to keep a normal life style and I will not give in to this disease.
27. Yes, Former Smoker
28. Yes when I can
29. Trimox 500mg cap Apothecon