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susieq40

Back from Seattle

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Hey everyone. Made it back home and safe and sound. The doctor's did all the usual tests. Lots of blood work. Think they took a gallon. :D

 

Anyway, they have a basis to go on, in case I need to go to Seattle for a transplant or any other treatment, that I can't get here in Montana. So far, because of the difference in altitude, I do pretty well there. I'm not as bad at breathing there. So anyway, they are going to keep me on all my med's maybe add Enbrel. We'll see when I have an appointment with my doctor's here at home.

 

We brought the boys with us to Seattle. We took them to Chuckie Cheese, and also to the Seattle Aquarium. They had a blast. It was a long ride, we drove straight from Seattle

all the way home, which was 10 hours. But the forecast for Spokane to home, was snow on Sunday so we just decided to head home, so we wouldn't have to drive in snow or a snow storm. It was good to get home and back into my own bed. Monday the snow hit home, and we got 6 inches.

 

Well, I hope to continue to maintain my health, and I hope everyone else is doing well!

 

Warm HUGS to All!!

Susieq :emoticons-group-hug:

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Glad to hear you made it back safe and sound before the snow hit! Do you have to revisit them for a recheck or will they do a phone consult for lab results? I went to one in New York City this past Monday and will see her in two weeks to discuss labs and x-rays.

 

Lori

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Hey Susie,

 

Sounds like it was a good trip! Did you like the people you saw? What did you think of the hospital?

 

I was out in the Seattle area last autumn and loved it. Dropping the altitude made a big difference to my breathing as well. It's kind of amazing, isn't it? Who would have thought?

 

Hope your snow is melting and you are warm and cozy at home!

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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It's good to hear that your timing was so great- snow driving- yuck.

I do hope you get good and helpful news soon from all these tests. Keep us posted please.

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Hi Susie

 

That's good news that your doctors' visit was so positive and that you and your family had a really great time and got back home safely.

 

Do keep us posted on your test results, won't you?


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi SusieQ,

 

I'm glad your appointment went well. What a relief, eh?

 

It's a very interesting thing to note that altitude makes such a difference. In a way, isn't it misleading that you are so much better at lower altitudes, but not where you actually live?

 

I'm wondering if this means you'd qualify for a lung transplant at some centers but not others, based only on the altitude difference.

 

We contemplated moving to a higher altitude years ago, because we both love the mountains so much, but we probably both remained better off at this lower altitude.

 

I may be wrong (I often am!) but wouldn't you be best off if your testing (and potential transplant) was done at the same elevation as where you live? I'm quite sure we have several forum members who need oxygen where they live (at a high elevation) but don't need oxygen at normal altitudes -- it can make that huge of a difference.

 

Anyway, I'm glad you and your family had a fun trip, that you have your baselines taken care of, and that you beat the snow home!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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:happy-dance:

Hi Susie,

 

I'm so glad to hear that you had a safe trip to and from Seattle. Do you have to go back or will the doctors in your hometown give you the results?

 

I'm also glad that you were able to spend some fun quality time with your family whilst you were there it takes the drudgery out of all the tests.

 

Ten hours is a long drive home, you must be shattered! We'll take it easy and keep your chin up at least it's all over and done with for now.

 

:emoticons-clap:

 

Take care love and hugs

queenie.

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Thanks everyone for the well wishes! I appreciate it so much! Your support means a lot to me!! The doctor's in Seattle will send a report to my doctor's here and I'll go over it with them. Can't wait!

 

It was amazing that I could breathe better there. I never thought of the altitude as maybe being one of the factors in a transplant....I may want to talk to doctor's in Utah. Closer to the same altitude, i'm guessing. Or Colorado? I'm not sure where all else they do transplants. I'll have to look into it.

 

I feel so bad for everyone who is going through a hard time! Big Hugs!! And know you are not alone!! We all have up and down days. I think it's taken me all week to try and get some energy back after our long trip. It takes so much out of me. The doctor's in Seattle want me to go back there in June. But if I'm maintaining, I'll probably put it off for a while? We'll have to see. I'll keep everyone posted on the results.

 

HUGS to All!!! :happy-dance: Brrrrrrrrrrr it's cold here!And Snow!

Susieq

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Hi Susie,

 

There is an interstitial lung specialist at National Jewish Hospital in Denver -- and he is a top sclero specialist. FYI

 

Best of luck to you!

 

SV - Wyoming

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Look here for the Colorado specialists. As it happens, there are several expert rheumatologists who have a particular interest in autoimmune lung disease at National Jewish Health. There are also some at the University of Colorado Medical Center.

 

Susie, we're at over a mile in altitude here in Denver and distance-wise, I think you would be closer to Seattle and possibly also Salt Lake City than here. Something else to consider.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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