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So far so good!


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#1 Amanda Thorpe

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Posted 17 February 2009 - 03:11 PM

Hello All

Tonight I finally had my lung function test and echo done, 4 months late. Oh well better late than never and had I had to wait on the NHS the echo would have been in December (Dec 2008 I get an appointment for Dec 2009!) and never even got an appointment for the lung function. Thankfully I have a sort of private insurance from when I worked so was able to "go private" and get seen within days not months. :)

Well for the echo the tech was lovely and I specifically asked her about PAH to which she said no obvious signs but the cardiologist will view the results for the conclusive answer. For the lung function the tech would give no hint so I now have to wait approx 10 days for the results to come to me. My oxygen saturation was 98% so I am assuming the lungs are clear also!

Whilst this is all good news I just wonder why I get so out of breath? If they'd said the results show a problem I would not have been surprised in view of the breathing so now I am wondering what else it could be. It's got worse approx the last 4 months prior to that I've been getting out of breath since 2007. Maybe it's just that my body is used to doing less so when I do more it finds it harder than when I was always active? When I get the results I'll go back to my rheumatologist and see what he says but if you have any ideas bearing in mind you're not a doctor/nurse/tech blah blah. :D

Take care.

Amanda
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#2 Shelley Ensz

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Posted 17 February 2009 - 04:11 PM

Hi Amanda,

It sounds like so far, so good, with this round of tests for you. I hope your winning streak continues. :rolleyes:

Please keep in mind that I have no medical training at all, and I've never even listened through a stethoscope! But as for the shortness of breath, it seems to me that it is pretty common in scleroderma, even in those who do not seem to have significant pulmonary involvement. Recently they've also discovered reduced exercise capacity in scleroderma patients, as well as lower nitric oxide levels in scleroderma patients -- even those without lung involvement.

My guess is, those factors, plus perhaps worsened a bit by more inactivity due to the other effects of illness (loss of job, joint/muscle pain, etc.) probably play a role. I've had shortness of breath, out of proportion to lung findings, for years. Which in my opinion is the good news, as I'd hate to have actual lung function that bad. :blink:
Warm Hugs,

Shelley Ensz
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#3 Amanda Thorpe

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Posted 18 February 2009 - 02:00 AM

Hello Shelley

Thanks for this, I did wonder if it was because I have become so inactive. How bizarre life is! Once upon a time I'd go running with my husband for miles before going to work and foolishly thought that exercising would keep me from ending up like my dear ole Ma, retired early due to ill health! She has heart disease and has had heart attacks.

I think that I'd convinced myself that the tests would show there was something sinister going on so that if there was I would be prepared, I never want to be blindsided again as I was with the sclero diagnosis. :angry:

Take care.

Amanda
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#4 razz

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Posted 18 February 2009 - 09:06 AM

Hi Amanda,

It seems like I've been running on low energy lately too. I get tired faster when I'm up and about doing things like laundry (my washer and dryer are downstairs in my basement) or making dinner. Since the weather's been gloomy and cold, I stay indoors a lot more and don't go out for walks or work in my yard. I think in my case, the low activity level has a lot to do with my overall energy. I watched a program on TV about how exercise has been known to improve brain function in people with Alzheimer's and exercise helps people with MS, so I'm assuming it has to help sclerodermians. It's hard to imagine if I feel tired already, how can I get started exercising. I'm going to give it a try. I have a treadmill I bought years ago for my daughters and I've been thinking of trying it out. I'll let you know how it goes and hopefully I won't go flying like a rocket off my treadmill.... :lol:

Smiles,
Razz
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#5 Amanda Thorpe

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Posted 18 February 2009 - 11:33 AM

Razz

I went to the gym for years and it took me years to pluck up the courage to use a treadmill and when I did I loved it. Whatever you do DO NOT hit the red button, my ex brother in law once did this whilst at the gym and he did come flying off the treadmill for all to see, It's the emergency stop button. Mind you I suppose the only audience you'll have is your cat and they are very forgiving creatures.

I know what you mean about the thought of exercising when you already feel exhausted, please let me know if it helps as I think it may be something I need to consider.

Take care.

Amanda
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#6 smac0719

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Posted 18 February 2009 - 01:28 PM

Amanda,

I'm glad to hear you finally got in for your tests and I hope the Dr will confirm that all is well.

Keep is posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#7 razz

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Posted 18 February 2009 - 06:53 PM

Amanda,

I'll admit I have a fear of anything that's computerized or has a mind of its own. With that in mind I am weary of stepping on my treadmill. There's so many buttons and flashing lights, like your ex brother-in-law I need to be careful. I was thinking of training my dog to walk on it since it's been cold out. But it wouldn't be fair to put him on the contraption first. You're right about my cat, she watches everything I do. I can imagine her saying "Now what is Ms. Lady up to?"

I will definitely let you know how I fare and whether it helps.

Smiling hugs,
Razz
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#8 janey

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Posted 19 February 2009 - 06:01 AM

Amanda,
Thrilled to hear that you finally got your tests done! Sounds like the results are going to be good. Usually if there were something serious like a high PA pressure, you probably would have heard by now.

When they took your oxygen saturation were you walking? When I'm sitting my O2 sat is in the high 90's, but once I start walking it drops. It use to drop into the 80's after just a few feet of walking but now it takes speed (2.0 mph :lol: ) and time for it drop. I've been doing the treadmill for about 8 months and it has made all of the difference in the world!!!!! My cardiologist started me on a rehab program last May and I can't tell you how much my quality of life has improved. Like you, I would get short of breath and go into a coughing fit just getting up from the couch and walking to the bathroom. Which of course, I do quite often. :) Now, daily movement and chores are no big deal.

From personal experience, I highly recommend that people talk to their doctors about getting back into exercise. I started off really, really slow - 1.6 mph for no more than 10 minutes. Now I'm up to 2.5 mph for 45 minutes! I know it's not the 4 mph I use to walk, but I'll take it!!!!!

Please let us know what you actual results are. I'm sure they're going to be really good!

Big Hugs,
Janey Willis
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#9 lizzie

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Posted 19 February 2009 - 06:40 AM

Hi Amanda, Glad you got your tests done and hopefully all Ok with the lung function. As a fellow NHS user, I was however, very suprised by the length you have to wait for your tests. I usually get to have my echo and PFTs within about 4 weeks of the referral being sent - seems some things are better oop North! :)

lizzie

#10 debonair susie

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Posted 19 February 2009 - 07:18 AM

Thanks for letting us know about your Echo and PFT results, Amanda.

It's so nice when the techs can allay our fears, by giving us the good news ahead of time! I SO appreciate that!

You always do such a great job with your wonderful support of others...thanks for allowing us the opportunity to support YOU!

Yes, please DO let us know when your final results are in, won't you?
Special Hugs,

Susie Kraft
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#11 Amanda Thorpe

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Posted 19 February 2009 - 02:07 PM

Janey, the sats were while I was sitting. I did see an exercise bike and though oh no! It was a stationery test and I actually think it's quite hard. They peg your nose make you blow OUT OUT OUT into a tube until you see stars! And why talk to me when I am doing it? The dear tech must be married to a dentist. :D

Lizzie, I'm gonna say it...you Northeners are supposed to be much more unfit than us Southeners...so the media would have you believe! All I can say about the appointment a year in advance is thanks a bunch Mrs T. :angry:

Susie, thank you, you're very kind. I will let you know the official results when they're in. Now if they did turn out to be bad don't expect a serious post because I'll be laughin' my head off! :lol:

Life is such fun!!

Amanda
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#12 Buttons

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Posted 19 February 2009 - 11:33 PM

Glad you managed to get your tests done Amanda. I've not had a Lung Function test done now for 18 months! How often should they be done?

Jensue

#13 lizzie

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Posted 20 February 2009 - 03:59 AM

Hi Jensue, think you are meant to have PFTS/echo at least annually. My Reheumatologist said that I should have them 6 monthly - but in fact only get them done once a year.
Lizzie