Re: National Jewish Health Experience.... [3 Attachments]

[Guest guest]

Is it madness, or is it creativity? Hmmmm.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Tuesday, June 16, 2009 11:47:37 AMSubject: Re: National Jewish Health Experience.... [3 Attachments]

Here is my madness in all it's glory. Also attached is a picture of the memory wall I started the day the told me I had IPF. In this wall are some large and some small pieces of stone/rock from every trip Rich has taken me on, a piece from the yard or drive of every family member and friend, Rich's work, our church, etc... You get the idea anyway. Someday, if that someday comes, Rich will always have this wall to remind him of how much I love him and how happy he made me. Of course that's if a good stiff wind doesn't knock it down first. Hey it's my first wall.

Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: JOYCE RUDY

Sent: Tuesday, June 16, 2009 7:53 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: National Jewish Health Experience.. ..

Love it! Any pictures! Joyce Rudy, AZ IPF

National Jewish Health Experience.. ..

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)

Looking for the perfect gift? Give the gift of Flickr!