Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Six minute walk test


  • Please log in to reply
18 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 08 June 2010 - 03:16 PM

I had my fourth six minute walk test today at the hospital where my scleroderma specialist is located. I did research on it before I went and found out that the one I had last year, at a local hospital, when they determined I needed O2, was done wrong. There are very specific directions on how it should be done. The same man did the test as my very first one. I had a forehead oximeter and was connected to 02 in case my level dropped too much. When I was finished he said I did very well. I asked if they had to use the O2 and he said no. He faxed the results to my scleroderma specialist who I saw a little while later. She said the results were so good that I don't need O2 anymore (!) so I am calling the company and having them pick it up.

The other good news is that my skin score went from a 16 to an 11. I started out at 45 five and a half years ago so there is quite a difference. Between all of this and a working kidney I feel like a new woman!

miocean
ISN Artist

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 08 June 2010 - 03:22 PM

Miocean, that is absolutely brilliant news! Congratulations!! Can we point new members at you as a real success story? You are living proof that things don't always turn out badly.

:happy-day:

Great big, very happy 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

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 09 June 2010 - 01:02 AM

Wonderful news for you, Miocean!!! :happy-day: :happy-day:

May you continue to improve at the same remarkable rate!! :emoticons-yes:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 09 June 2010 - 02:08 AM

Wow! So much good news! This brings optimismus (spelling?) into sclero society!
Erika

#5 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 09 June 2010 - 02:44 AM

Hi miocean,

What awesome news!!!

Hugs,

warmheart :emoticons-yes:

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 09 June 2010 - 04:52 AM

Hi Miocean,

I am really happy for you, it is wonderful news!


Buttons

#7 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 09 June 2010 - 06:16 AM

Miocean, that is terrific news!!! :jump-for-joy:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 09 June 2010 - 09:18 AM

Fantastic news, Miocean!! Well done!

Keep on improving, you are an inspiration to us all.

:thank-you:

#9 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 09 June 2010 - 10:51 AM

Hi, absolutely brilliant. Hope you continue to florish with renewed stamina!! :emoticons-yes:
Happy days!
Lynn x

#10 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 09 June 2010 - 01:26 PM

Miocean

That's absolutely wonderful news...you must be over the moon with happiness and I'm really happy for you too! :happy-day:
Sending good wishes your way!

#11 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,002 posts
  • Location:Pennsylvania

Posted 09 June 2010 - 01:48 PM

Hi Miocean ,

I'm so glad to hear you don't need the O2 anymore. I hope the kidney continues to keep performing great, too. :emoticons-yes:

Take care, Everyone.
Margaret

#12 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 09 June 2010 - 02:27 PM

Miocean,
This is all great news! Congratulations! You must be on cloud nine.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#13 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 09 June 2010 - 03:56 PM

Youer doing so much better is wonderful. Congratulations.

#14 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 10 June 2010 - 10:01 AM

Miocean, this is fabulous news! I am glad you don't need to wear oxygen now. That is a huge relief. I'm delighted for you!
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.

#15 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 11 June 2010 - 10:07 AM

I certainly hope I don't have to take back my good news and that all your congratulations were in vain. I went to the kidney doctor this afternoon and while I was waiting for him I took a good look at the report from the test. I hadn't looked at the date and when I did it was the one from 2005! After playing phone tag with my scleroderma specialist's office I finally got a nurse and they are going to mail me a copy of the one from this week. I should still be okay as far as no 02 because my level only dropped to 93% after the test but you never know. I didn't call the oxygen company to take it out yet because I wanted to run it by my pulmonologist and see if he agreed. Good thing. You really have to check up on the doctors and get copies of the reports.
ISN Artist

#16 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 11 June 2010 - 10:24 AM

Miocean, it might be good to keep your oxygen machine in case you have high humidity days or feel short of breath on any one given day here or there. My mother uses her O2 about 4 nights a month and a couple days for a few hours when she feels week or fatigued. As long as it isn't costing you anything to keep it you might just want to hang on to it. Keep us up to date on your new PFT's when you get your final results.

Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#17 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 21 June 2010 - 04:38 AM

Well, it seems your congratulations were in order. I sent my current test result to my pulmonologist and he agreed that I don't need the 02. He said I could keep it in case I needed it but I told him Medicare was paying $350/month for it and I am not using it. We decided to remove it and if I needed it bring it in again. They are coming tomorrow to take it out.

miocean
ISN Artist

#18 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 21 June 2010 - 04:46 AM

Hi Miocean,

That's terrific! Here I am, waving bye-bye to your oxygen tanks. Let's all wave bye-bye now! :bye:
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.

#19 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 21 June 2010 - 02:05 PM

:bye: Waving bye-bye to your O2 too!!

Great news, I'm really happy for you and you certainly have earned having calm seas and sunny skies. Long may it continue!
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