Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Is this something I need to be concerned about

  • Please log in to reply
4 replies to this topic

#1 summer


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 13 December 2009 - 05:48 PM

I haven't been posting for some time, but read everyone's
posts daily. I have Limited/Crest Scleroderma, and have been
diagnosed with this for nearly 3 years. I have no skin issues,
but my stomach/bowel issues, have worsened this year.

I have just come back from the hospital, after having
a 6 minute walk test, and an extensive Echo.
Last year everything seemed to be within the normal
range, and my saturation oxygen levels were near 100%.

There has been a change with the Saturation Oxygen levels today.
I started at 100%, whilst walking for 2 minutes rather
briskly, it plummeted to 74%. By then I was a little breathless,
so I slowed down my pace to a normal walk, during this time until
the 6 minutes were finished it went up to 100%.

I am not due to get my results for my echo and saturation rates
until next year. Is this something to be concerned about?

I have tachycardia and on medication to bring down my heart rate,
and I am seeing multiple specialists at the moment.

Many thanks


#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 14 December 2009 - 03:18 AM

Hi Summer,

It's unusual that they would continue the 6-minute walk when your sats are that low. My husband is on oxygen, and they always stop the test completely if his sats drop below 82. Was it that you were just walking way too fast?

Walking is supposed to be at a pace when you are still able to hold a normal conversation; it is brisk walking, and then speed-walking, to go faster than that. It takes several months of training to be able to adequately do a speed-walking pace as it takes the heart and lungs time to adjust to the new demands. Since you popped right back up to 100% when you reduced to a normal pace, maybe you were just over-stressing your current endurance level? Since you are normally hovering at 100%, even without oxygen, you're probably in fine shape.

I have never been able to get my sats to 100% using my husband's oximeter (and neither has he.) So for years we assumed his oximeter was probably off by a few notches, until our granddaughter tried it and, with a minute of deep breathing she got it up to 100%. And she was an 11-year old nonsmoker in excellent shape, who loves to run, yet she still had to put some thought into getting it to 100%.

But bear in mind, I'm only a patient. I have no medical training at all. I'd recommend you ask your doctor whether or not the 74 is anything to be concerned about, under those precise circumstances.

If you were walking a normal pace, and your sats dipped and stayed low or kept worsening, that would be very worrisome. Since that was a little bit odd, if you want to keep an eye on it yourself, you can purchase an oximeter and use it while you are exercising to pace yourself to keep your sats above 90% when exercising. (You don't need a prescription to purchase one.)
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.

#3 summer


    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 14 December 2009 - 05:21 PM

Thanks Shelley for replying to my post.

For the past couple of months, I have finally been able
to do 3 days a week, 40 minute walks to the shops, having a short break after 20 minutes. I
usually walk at a moderate pace, unless I get tired,then its a slow walk.

Yesterday at the hospital, I was told to walk faster than my usual
pace, but not that fast that it's too uncomfortable.It was a flat surface.

I know that if there is a slight incline or a small hill, I become fatigued and
breathless very quickly.

I guess I will have to be patient, and wait to see my doctor. If there is anything
that Scleroderma has taught me, that is to be very patient.


#4 janey


    Platinum Member

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

Posted 14 December 2009 - 06:09 PM

I have the same situation in that my O2 sat stay above 90 up to a certain pace; however, once I start uphill or pick up the pace, my sats drop to where I need my oxygen. Walking in the cold seems to lower the sats faster at a slower pace so I'm having to wear my supplemental oxygen more in the colder weather. As Shelley pointed out, walk at a pace where you are comfortable and can carry on a conversation and not short of breath. I walk a lot slower than I use to, but I still walk and that is the important part. When I went through cardiac rehab, the doctor and techs stressed that due to my heart/lung problems, the most important criteria was length of time walking, not the speed. A slow pace for 50 minutes was better than a 20 minutes fast pace. So between now and the time that you see you doctor, try slowing down to where you can walk comfortably without getting short of breath. If you push yourself to hard and struggle, you might get discouraged and stop altogether which would not be a good thing. Please let us know how your appointment goes next year.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 summer


    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 18 December 2009 - 05:06 PM

Thanks Janey,

I am due to go for my Pulmonary Function Test next week, so I will
be interested to see if there is any change.

I will keep you updated