Deceased members are noted by *
1. : Doc Nelles,
1. : Elizabeth Nelson,
1. : Jimmy Nelson,
1. Cathleen M. Newell; 5/18/54; F
2. New York - email@example.com
3. Severe diffuse emphysemia; chronic bronchitis; asthma
8. xrays; cat scans; pft
9. the 2nd pulmonologist I consulted; yes
11. currently using Albuterol Sulfate Inhalation Solution (0.83%) q4hrs; Ipratropium Bromide Inhalation Solution (0.2%) 4xd; Vanceril (42mcg) 2 puffs 4xd - in the past (when I'm more stable) I use Serevent 2 puffs bid and Atrovent 3 puffs 4xd. I also use Proventil as a resue inhaler.
13. Accolate 20mg bid; Verelan 480mg qd; Lasiz 80mg
qd; Monopril 10 mg qd; prednisone prn; QQuaifenesin
prn; prilosec 20mg prn
16. Theophylline (I had an underlying heart condition)
17. Yes - don't remember
18. Crrently using one now (refer to #11.)
20.Intolerance to heat and cold; slight incontinence with SOB; swollen ankles and feet
23. HMO (primary); Medicare (secondary)
27. Former smoker
28. yes - walking regimen
29. Too numerous to mention all - most recent was Biaxin
Back to Profiles
1. : Ricky Newman,
1. Fran Newsome 1939
2. Naperville, IL firstname.lastname@example.org
3. I have Asthma,Emphysema and many allergies
5. about 56-57
6. shortness of breath, cough, frequent upper respiratory infections, and feeling that my diaphragm was locked and not working, pneumonia
8. overnight oxygen saturation test and pulmonary function tests
9. Tests were ordered by pulmonary specialist, one done in my home, overnight - hooked to a machine, and the other, the pulmonary function test, was periodically performed at the hospital. Also, when I visit the doctor, I'm taken for a walk attached to a meter to determine how fast my O2 sats come down.
10. the doctors tried a few different meds before we hit on the combination I'm on now.
11. Serevent - 2 puffs every 12 hours
Flovent - 3 puffs twice a day
Combivent - 2 puffs four times daily
12. Maxair, Atrovent
13. Claritin-D for allergies 1 tab 2x day
Celebrex 200 mg - 1 capsule 2x daily for a
deteriorating hip (which will be replaced soon)
14. Slo-bid, a form of theophylline, was not tolerated too well
16. Slo-bid - became extremely hyper, had trouble sleeping, couldn't concentrate and would cry at the drop of a hat - just crazy.
Prednisone - higher doses make me itch furiously all over.
17. Was sent to Pulmonary Re-hab after two bouts of pneumonia in one year. Exercises are the usual (bikes, treadmills, recumbent steppers)with weight training, pulleys, and arm bikes to develop upper body strength.
18. I use a nebulizer when I'm congested or have a cold, with albuterol and broncho-saline solution
19. I sleep with the oxygen (2 liters) provided by a concentrator and whenever I have to walk or exert myself, I have to take the oxygen bottle with me.
20. Cannot tolerate heat very well, no incontinence - yet, at times have trouble with sleeplessness - wake up after 2-3 hours. Do not heal quickly from cuts, scrapes and scratches. Inhalers(?) cause red bruise-like marks on my arms and hands.
21. I am an in-active employee
22. Am on fulll disability
23. I retain my company insurance, so far
25. Would be happy to answer any questions from others in the group via e-mail.
26. So far, the pulmonary patients I've come in contact with have been pretty up-beat, and very busy! I'm trying to keep that in focus- at times depression starts, but I try to keep my mind occupied - with reading (I love mysteries) visiting my family members, having dinner every
Friday with friends and now - the computer!
28. Twice a week
29. I've tried them all - believe Ceftin or Keflex was the last one
30. No, what is Alpha1 and/or genetic emphysema?
Back to Profiles
1. : Candy Nicely,1972,
1. Helen Nichols, 1919, F
2. CA; email@example.com
4. 72 yrs.; diagnosed Early Emplysema in 1992, along with malignant Tumor on lobe of Right lung
5. Don't know. Had Acute Bronchitus in Oct. or Nov. for preceding 2-3 years.
Noticed unable to dance a cmplete set (3 numbers) and finally unable to open garage door without help. Was able to ward off common cold and Flu, but not Bronchitus.
6. Family insisted i go to DMV and ask for Disabled parkin plate so that I could park closer and avoid trying to walk (SOB). That Dr. took a chest X-Ray in the process,an discovered a "shadow" that he "didn't like", and referred me immediately.
8. Tech at hospital did breathing test .
9. Only told "Early Emphysema" and that Dr. would read the printout of test and have his nurse schedule me for a consultation . When I arrived home there was a message to come in early next a.m.
10. Only medicatiion at that time was for Glaucoma (Drops) diagnosed in 1960.
11. Just Proventil; 3-puffs ,4X daily.
12. Also had Atrovent in beginning but asked to be taken off when it began to taste like crude oil. Was told that they were trying to change as adverse effect on environment. Proventil dosage was increased to 4X daily, instead of 3X.
13. For COPD, only Theophylline (200 MG) one at 7:30 AM and 7:30 PM daily.
14. That's all that was prescribed. Between biopsy and my 1st surgery was given Prednesone for 14 days,as I was "a poor risk for surgery at this time" Note; I probably would feel better if I were able to take Pred. but raises pressure behind eyes so it is never prescribed.
17. None. Declined chemo/radiation after each surgery, so have never been referred to Oncologist.
19. Yes. 24-hrs. since 1992. At rest, or just around the house, 2- l. Making bed, showers, dressing or if I go "out the door", and at Resp. Therapy, 3-l.
20. Have neck and shoulders ache occasionally but have now been told that it is from improper breathing, so I almost know now when to expect it. Stress is our worst enemy, I believe. 5-6 hours sleep has always done it for me, however, it is interrupted
Now 1-2x per nite, depending on how late I'm up and still drinking my water (72-80 glasses (8-oz.) Per day, and sometimes more.
21. No. Was working 3-days per wk, but eyes continued to get worse, then when I had to quit driving, that was it.... My portable lasted 8 hours on steady flow and I only worked about 6 hrs per day, so that was still okay.
22. I guess I answered that in #21, see what I mean(!).
23. I have an HMO. At this time, my complaints are all with the doctors ... My original HMO (from 1984 to 1998) was taken over by
another HMO and have changed drs three times. It's very strange to me that as large as this HMO is, they tell me that they do not have one Dr.that specializes in Geriatrics ... And, we all know that their highest percentage of patients is 55+, so, Jerry ... What's all that about!
24. Don't believe that I would qualify, due to my youth and excellent Health(!).
25. Yes. Because I am still learning, I'm liable to be up and around no matter what, but hope to arrive at scheduled hours before too long.
26. Very difficult for me to read so much material (also belong to Copd and have their digest to read also). The bulk and the green print is very hard for me ... as if someone came along and rubbed all the print with one of those gum erasers. Hope to get some advice on lighting from the partially sighted when and if I ever get an appointment ... they're very busy. I use a word Processor for my writing (children's) and the print is yellow and seems to be easier to read. I get newsletters from 3 different hospitals and 3 from Resp. Therapy groups, including one research on lung disease (UCLA), plus assorted magazines having to do with vitamins, minerals and nutrition .... writers mags, plus the regular, so I depend on the Lord to loan me His eyes once in a while, which He never fails to do ... Every time I read about how difficult it is to quit the cigs, I wonder why we're so dumb about some things and so smart about others , Long story short... You can't quit because you like to smoke ... Soooo, try the Lord first instead of last and pray to lose the desire ... I tried 3x in 5 years and failed. It took 2 years before He deliverd me, and untrusting as I was, I kept the 2 packs I had just purchased in front of me for about 10 or so days and I wonder now that He even bothered with me ... but He did, and as with everything else ...if we just "get out of the way" He loves to show us how much He loves us. He's shown me many times since ...
I'm such a schnook, but because I am, I do relate to that particular problem. He delivered me on a Sunday morning, I'm reading the Bible (couldn't go sit that long in Church without) and those cigs were never opened... No one could ever tell me that God doesn't like a little joke now and then! Many years ago, but it still seems unbelieveable to me. I think I was 55 years old And had been smoking since I was 19, so there's my story.
27. Well, I did it again, didn't I? Answered this in #26!
28. Was in rehab for 8-wks (no one had ever told me ... found out by accident), then on maintenance two days per week, but lose the whole day for just that 1 1/2 hours, so am trying to find out about low impact treadmills, price, etc.. Have to be able to handle it myself, as have small place and live alone so have to be able to put it away myself ... Also, no incline. I had gone from 3 min. at .03 to 1 hr. At .06/.08 but now have not been recently, so losing my legs again. Can't walk around here as eyes (depth perception) not able to see. Am using walker now, otherwise I would have fallen several times.
29. Have only had antibiotic 2x in 7 years. Have to look it up. Have kept a daily notebook with med. schedule, water, etc. (try to keep on every 5-hours) and don't recall, but was told nothing ... Gave dr. The problem over phone and he prescribed. They never tell me anything, but then, I don't call them unless whatever is going on is most unusual and/or doesn't respond to my "m.o."(!)
30. If I was ever tested for that I guess not and it would have been my Pulmonary who tested me (he's the only one I've ever had that really cared (had another malig. Tumor and surgery 5 mos. after first one) and he acted as my primary for as long as they would allow it. He's Retired now, and I've had little contact with the one I finally got my Primary to refer. My older son was tested for that because he is 100% disabled. His dr. (VA) said no.
Back to Profiles
1. : Leroy
2. : North Carolina, firstname.lastname@example.org
3. : Emphysema
4. : 59 at first but then basically ok until 64 when it became acute.
5. : 58
6. : Could not breath.
7. : After about 6years
8. : Complete Pulmonary functions/blood gases/x-rays Tis was done twice. First in 1995 and again in 2000
9. : Pulmonology tech and then notified results by my internist. This was done in 1955 and I did not believe I had moderate to severe emphysema and did not take inhaler like advised because after that one episode I was ok again???
10. : No
11. : Combivent 4puffs 4 times a day. Advair500/50 l puff 2 times a day
12. : I have been on so many and all seemed to work until breathing became worse and the the new rx was ok.
13. : Singulair 10mg
14. : Have used prednesone only at times but it is great. Not on it at present
15. : Paxil 30mg. ldaily, adivan 1mg as needed many days not at all
16. : No
17. : Suggested but I did not do anything but deep breathing which I had previously learned from psycologist.
18. : No
19. : At night 2ltrs. During walking or any type of exertion I need my helio.
20. : No, I seem to handle these ok but I have been depressed for years even before emphysema.
21. : No
22. : No
23. : Medicare and a retirement supplement ins.
24. : No
25. : Yes
26. : At this time I have no pains and can breath fairly well with medication and oxygen but would like to know how and where pain is in our later and final state of death
27. : Former. Have been smoke free since l2/5/2000. Started at l6 years old but had quit at 40 and then resumed at 49 .
28. : Almost now unable to. Mow grass on riding lawn mower
29. : zeepack
30. : Not that I know of.
Back to Profiles
1. Ivar Noodt, 1937, male.
2. Oslo, Norway, email@example.com
3. All 3, recently the pulm dr emphasises emphysema.
4. About the age of 53.
5. Chronic bronchitis as a small boy (i e as long as I can remember..).
6. Routine check-up via company health insurance scheme.
8. Blood tests, a full set of PFT's, 10-day antibiotic treatment, 1 week on
30 mg prednisolon.
9. Pulmonary dr, was given information but failed to grasp the seriousness of diagnosis.
10. Yes, exercise test before and after nebuliser with Ventoline (salbutamol).
11. Ventoline 2.5mg and Atrovent 0.5 mg in nebuliser, 1-2 times/day;
Pulmicort turbuhaler 400mcg 3x/day; Oxis (formoterol.fumarat.dihydr.) turbuhaler 4.5 mcg 2x/day; Lomudal capsules 20mg 2x/day; Bricanyl (terbutalin) turbuhaler 0.5 mg as required, 0-3x/day.
12. Ventoline MDI - do not remember dosage.
13. None when in 'normal' condition, during exacerbations: Dumoxin
(Doxycyclinum) 100mg tablets for 9-19 days, and Prednisolon 5mg tablets, 6
tablets/day up to one week without tapering down dose.
14. Nuelin Depot (Theophyllin) 250mg tablets - got depression.
16. See 14 above.
17. Went through both an 'asthma school' and a comprehensive 6 weeks rehab course at the hospital where I got my diagnosis. Emphasis on strengthening of chest muscles, PLB, relaxation techniques.
18. Yes, Freeway Lite II, Ventoline and Atrovent (see 11 above for dosage).
19. Compressed O2 gas in 1kg bottles, with Oxymatic 201A conserver, portable. During exercise.
20. Intolerance to cold, sleeplessness, stomach gas.
21. On sick leave.
22. Hope to be on full disability soon.
23. Have coverage both from government and private insurance. Sum should be adequate, I hope!
24. No (was rejected).
26. Alarmingly fast lung function deterioration the last few years, may be due to A1AD.
27. Former, quit 4 years ago.
28. Yes, in group once/week, at home irregularly.
29. Have only switched between Dumoxin and Imacillin, both worked well at times - but not always!
30. Yes, I tested positive...
Back to Profiles
1. : Heidi Noperi
2. : 2. Arizona firstname.lastname@example.org, 2a) n/a
3. : Emphysema
4. : 55
5. : not sure - probably 5 years prior to diagnosis, Iit never dawned on me that I could have emphysema
6. : Visit to ER, so much out of breath, I could not walk. I received an albuterol inhaler, and was told to see my doctor. I was fine with the inhaler
7. : no
8. : spirometry - not a complete PFT
9. : my PCP, and no, I did not receive any information, except that I had COPD, which at the time didn't mean anything to me, because, I had never heard that word before
10. : no
11. : Spiriva, Advair 250, Xopenex if needed
12. : Duo Neb
13. : Theo24 - 200mg, Clartin, Singulair
14. : some kind of albuterol pill, I forgot the name
15. : not anymore, I did for a while because I had anxiety attacks, and did not know how to handle them
16: Albuterol Inhaler, rapid heart beat
17. : no
18. : no
19. : yes since two years ago, , 24/7 now, more or less, on 2l, 4l when exercising
20: heat, cold, sleeplessness, I do not have sleep apnea
21. : no
22. : full
23. : Medicare and Blue Cross/Blue Shield - Blue Cross was sufficient, but since Medicare is now primary, somehow I end up paying more doctor bills
then before with just Blue Cross
24. : no, but my my pulmo suggested either one (I have a pulmo now), I don't qualify for a transplant yet
25. : sure, any time between 11am and 11pm, either email or phone
26: If I had a Pulmonolist 10 years ago, I would not be in the shape I am in now, I know that much. Exercise certainly helps
27. : former, 1.5 to 2 packs, I quit in 1998 cold turkey
28. : yes - daily
29. : for me it is a Zpack
30. : yes - I don't have it
Back to Profiles