National Jewish Health Experience....

[Guest guest]

Hello everyone. I missed you, but I think I have caught up. I had the best

experiences while in Denver at National Jewish. I learned more in 5 days than I

have in 3 years. You have all helped me get there. I found out that when they

looked at x-rays from 1991 (which I brought with me), there were some hallmark

indications at that time that pointed to my current problems. The doctors

indicated that a regular doctor or even some pulmonologists might have had a

very difficult time spotting it as it takes a well trained eye. I feel

recharged and positive about my future as I now have some solid goals and

hopefully some better skills for dealing with this illness. I signed up for an

independently funded study group, too (I mean, a chance to add to the pool of

knowledge of this disease family is kinda the icing on the cake)!! Dr. Evan

Fernandez wants me to consider VATS as it would reinforce his preliminary

diagnosis of NSIP. He says with a lot of work on my part he is optimistic on my

long term prognosis of a decade or longer. I came home with multiple business

cards from people from different parts of the clinic. I am on oxygen for

exercise, and for the most part walking outside my home. It appears that while

seated and in casual conversation, I have no need for oxygen. I learned how to

work around my home and how to make all of those everyday things go a bit more

smoothly. I have, over the last three years developed some good coping

mechanisms of my own. My O2 sats drop like a rock very quickly but recover

equally as quick. My goal is to level them out a bit so I don't have peaks and

valleys. The breathing techniques and 'self-pacing' do accomplish this goal,

but I have to work at it so that it becomes second nature. No other auto-immune

disorders other than the diabetes II and osteo-arthritis. They also put me on

NAC. That was kinda funny. I have been craving high antioxidant foods (maybe

that just happens when you grow up enjoying them anyway). I have noticed that I

seem to feel better some days if I have had a lot of them (blueberries,

cinnamon, cherries, raspberries, brussel sprouts, raisins, walnuts, etc.) I

have a set of fitness goals and I got to go into the pool to do some water

aerobics (first time in 3 years... I used to go 5-6 times a week prior to onset

of shortness of breath). They gave me a new yardstick to guide myself through

using my recumbent bike and treadmill. It is going to take awhile to get back

in shape, but now I have a guide and know how to use the concentrator that my GP

originally prescribed for me. I will be visiting the local home care provider

facilities next week to see what they have as far as oxygen provisions

(canisters, backbacks, refillables, portable concentrator, etc). I have an

appointment with a new pulmo-dude early July who is also in the loop with Denver

and I was instructed to get into the University Pulmonary Rehab program after I

have met with my new pulmo-dude. My GP, new pulmo-dude and myself will be

receiving copies of all of the Denver work within the next 30 days. Once I have

made a decision on the VATS, which Dr. Fernandez recommends for clarity of

treatment options (imuran) and potential future lung transplant (should the

necessity arise). I was a bit of a challenge to some of the staff. I am one of

those people that has wrist arteries that are extremely difficult to find

(nothing new, this has been the story of my life, but now I have cute purple

bracelets on both wrists). Fortunately the gal who did the blood gas work did

find the artery and my actual blood gas is about 2 points lower than the

oximeter reading. Good to know. I also took my new oximeter (kinda got the

impression from you all it was good to have one). My FDA approved oximeter

($79.00) was spot on with theirs every time. They were all impressed with it as

it came with a lanyard that it quickly detaches from and seemed in their eyes to

be quite a " good purchase " . I also told them about this group as you are all so

diverse and at different stages of the different diagnoses within this family of

pulmonary diseases. I told them how I found out about the excellent high

quality care options available (Mayo Clinic, University of Chicago, University

of San Francisco, Duke, etc.) I told them how you provided support through

knowledge, personal experience, humor, and the day-to-day, fact of life common

sense caring and sharing. THANKS EVER SO MUCH - ALL OF YOU. I am going to

check past posts and messages to find out more about the VATS. Feel free if

anyone has questions about my experience... be glad to share. Any comments or

pointers, also appreciated.

Stefani (age 60)

ILD / 2006, Diabetes II / 2006, PF / 3-2009, Severe Sleep Apnea / 2009, NSIP /

6-2009 (which, by the way, is what I am replacing the ILD and PF with on my

signature from now on)