The following letters, in E-mails, simply and richly illustrate the power
of informed patients and/or caregivers:

Subj: [COPD] Peak Flow Meter
Date: 98-04-20 13:03:56 EDT
From: jmobbs@************ (John Mobbs)
Sender: COPD@HOME.EASE.LSOFT.COM (COPD/Emphysema Online Support Mailing List)
Reply-to: jmobbs@************ (John Mobbs)
To: ******************

Hello everyone:

This is the second time I've written about my mother-in-law Nana. She's 85 and just diagnosed with emphysema last December. She's on COMBIVENT AND ATROVENT. Also has bronchitis. Stopped smoking immediately.

They used and gave her a peak flow meter in the hospital. After finding this group I encouraged her to start keeping a peak flow diary. (also thought she might see some change for the better since she is walking at the Mall and therefore she might be encouraged.) She kept the diary for about 2 weeks and then she had a Drs appt. The Pulmonary Spec. informed me(in a diplomatic way) that this was worthless and when I questioned him, he said "Let me put it this way It won't effect my course of treatment in any way". When I wanted him to explain "why" he said this was only relevant to ASTHMA pts. and not emplysema pts. I said, why was it used in the hospital? He said he didn't know why.

I asked him what her chart indicated her peak flow reading was in the hospital, because I wanted to compare. It can be anywhere from mid l50's to 200. She hit 200 after walking for a couple of weeks.

She's up to 1/2 mile with a couple of rest stops. (he didn't have her hospital chart, he didn't know why)

I asked about her PFTs in the hospital (I was so ignorant at that time I'm not sure that she had any) Of course without her chart he didn't know. He said he would do some tests on her next visit, (4 months away). I brought up Pulmonary Rehab. He immediately poo pooed that idea. But because of this group I had the courage to question him again. He stopped me and asked me if I was in the medical field. (My Nana was impressed) I told him"no" but that I had found a group on the NET that was educating me. He said if we wanted to try Rehab he would set it up (She should start soon and I KNOW they will do PFTs). Nana is very positive about the Rehab.

I also asked the Dr. about the nebulizer for her because she just can't seem to do the inhaler very well. I think maybe she is not getting her medication properly. But I do know she had no trouble using the nebulizer in the hospital. He didn't think much of that idea either, but he did eventually write the prescription. I think the Drs. negative attitude about the nebulizer scared Nana and she wants to put that off untill after she starts rehab. I have asked Rehab. to evaulate her technique with the inhaler and see what they think.

Did I do O.K.?? :) I want so much to help her get the most out of her remaining years. (many I hope) I'm so thankful to this group for CARING AND SHARING AND ENCOURAGING!!! sorry this is so long:

Sincerely, Rita

Subj: Thanksgiving
Date: 98-11-24 23:13:14 EST
From: DRenzu1010***********
To: SOBnSA************

Hi Bill,

I just want to take a little time out and express my thanks to you and your efforts.

Because of you and your suggestions, i've taken the bull by the horns. My MD is definately not an aggressive doctor, at least not with my condition, emphysema.

In february of 1997 I was diagnosed with "e", he told me to stop smoking and walk alot! I kept thinking to myself...That's it! Is this the treatment? But like a dummy, it took me to february of this year to quit smoking.

To make a long story short, I enrolled in a fitness club in april, I work-out 3 nights a week and feel great.

I enrolled in a 6 mos. research program at the beginning of this month, and was told that my exercising has greatly contributed to the good condition I'm in. My last PFT test has shown a 31% increase for the better. My peak flow has gone from approx. 220 to 390 at present. I am 60 yrs. young, a self employed carpenter and remodeler, and still going at it. I'm sure I've left alot of info out of this little chat, but my primary reason was to give THANKS to you, Bill Hordan, my thoughts and prayers will be with you and yours this thursday when I sit down with my family and give thanks for what I have.

Happy Holidays to all.

Doug