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Heart Echo Test Worries

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#1 Kathy D

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Posted 04 August 2014 - 12:40 AM

I have an ECHO scheduled in a few days.  I have been increasingly breathless the last few years from the slightest exertion..... I somehow managed to skip my bi-annual ECHO due in 2011 because of pregnancy another few years from moving to a new state that required new health insurance.  Now I fear the new test results that will come.

 

In 2009 I had a baseline ECHO which was good.  In 2010 ECHO they said I had 2nd degree heart failure.......which I did not.   A larger hospital then reversed that diagnosis with another ECHO and CT scan.  Meanwhile we worried too much. 

 

I almost #1. don't want to know if I have ILD, and #2. I fear I cannot confirm or void another false positive if I DO NOT have ILD, the confirmation/reversal diagnosis hospital is too far away to get done. 

 

I had Pulmonary Function Tests scheduled 2 weeks ago (also a few years overdue) but I recently caught a terrible cold that has lasted longer than expected so the results would be pointless with this cold anyway.  I guess I will reschedule the PFT when I finally get over this cold.  Am I correct?   Please tell me if you know different.

 

I had the gift of an unusually long remission from our miracle pregnancy that let me deny I have diffuse sclero for awhile.  Sadly, as many of you know, it's back in full force plus new clinical signs.

 

Thank you for any input, nice messages or thoughts. :)


Diffuse Scleroderma Diagnosed March 2009

#2 Shelley Ensz

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Posted 04 August 2014 - 10:20 AM

Hi Kathy,

 

Yes, you were right to postpone your pulmonary function tests until your cold is completely resolved.  In the first place, the test results would not be reliable or helpful, and in the second place, you'd be scattering germs around an area often frequented by immune-compromised folks.  So altogether two thumbs up for cancelling that!

:emoticons-yes:

:emoticons-group-hug:


Warm Hugs,

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

#3 Amanda Thorpe

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Posted 04 August 2014 - 01:57 PM

Hello Kathy

 

Yep, have the test when you're better.

 

Even with yearly ECHO's and LFT's scleroderma can inflict severe damage. I'm telling you this so that you can hopefully worry less, even when it's BAD it can get better otherwise I would not be here now.

 

In February 2009 my ECHO showed a  left ventricular bundle branch block and ejection fraction of 50% (normal 50-55%), BBB's are defects in the heart's electrical conduction system, ejection fraction measures the function of the left side of the heart which pumps blood around the body. I was told there was nothing to be concerned about, LVBBB's were common in society so I dismissed it all. As hindsight makes Einstein's of us all I can now say this was grossly inaccurate, LVBBB's may be common in society BUT in people with scleroderma it can be the beginning of heart involvement and it obviously was for me and I should have been monitored much more carefully.

 

Fast forward to my April 2010 ECHO and I am told I have myocardial fibrosis, LVBBB, LV diastolic dysfunction (eventually global dysfunction) with grade 3 heart failure and with an ejection fraction of 30-35%. Although no doctor would tell me at the time despite frequent requests my life expectancy was then about 2 years. Actually no one was truly up front about how ill I was including myself, I neglected to say I also got out of breath just talking not only upon exertion which would have put me in grade 4 heart failure.

 

September 2010 I had a biventricular implantable cardioverter defibrillator implanted and within the hour could breath easier. The 2011 ECHO showed an ejection fraction of 40-45% but the 2012 ECHO showed it to be 50%! Although I will always be in heart failure because my heart does not function without the device it has done its job for sure!

 

Of course this was a very difficult period with lots of tests, uncertain outcomes and so forth but the treatment worked and here I am. However bad it gets it can get better and I am living proof so please bear this in mind and of course that worrying does absolutely nothing for you other than steal from you time that you could be enjoying!

 

Take care.


Amanda Thorpe
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#4 Joelf

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Posted 05 August 2014 - 04:14 AM

Hi Kathy,

 

Sorry to hear that you're still suffering with your nasty cold and laryngitis.

 

I would certainly reiterate the advice from Shelley and Amanda about postponing your PFT's and in fact whenever I receive notification of my next PFT appointment it always states that the test should not be undertaken whilst suffering with a cold or chest infection as it would affect the results. I have lung function tests every 6 months and an ECHO once a year and as my lung function is so much improved, I only see my consultants at The Royal Brompton Hospital once a year now, with 6 monthly appointments with my local consultant.

 

As Amanda has stated it's certainly a very worrying time whilst all the tests are being done and I can understand that you feel apprehensive about your ECHO and PFT's. When I was first diagnosed my lung function was 43% and I was breathless whilst doing exercises that I would have considered a mild warm up pre-Sclero (only my extreme fitness at the time saved me from being on oxygen). However, thankfully my lungs have been stable for the last couple of years and in fact at my last appointment at The Brompton I was forced to sprint the 45 minute walk from Victoria station to the clinic in 20 minutes due to my having missed the earlier train (wearing wedge heels, I might add, which nearly crippled me!  :rolleyes:  ;) ) My consultant was rather staggered when I told her that!  ;)  :o

 

I mention the above to show you that things can and do improve and certainly when I was first diagnosed I did wonder if the quality of my life would ever be the same again. It's not the same, but different and improved in many ways. 

 

Kind regards,


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#5 Kathy D

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Posted 05 August 2014 - 07:46 PM

Thank you, Dear Friends.

 

My husband cancelled the Echo for me as I still cannot speak.    I used to dread it when I realized my grocery checker had a virus and had touched every one of my grocery items!  Only to fall sick a few days later...  Though I doubt I am still contagious, no need to expose others or lend myself to false test results!

 

So, my to do list when I am better is:  PFT, Echo, mammogram, then schedule appt. with rheumy in the state I moved from for interpretation. 

 

Would you believe there is not one endocrinologist in my new state!  I haven't figured that one out yet, but dear husband will make the long drive for me if I need to go to my old one.  Luckily my blood work is within range at my last few tests even though I still have symptoms.

 

A well deserved visit to the dentist will be added too :)


Diffuse Scleroderma Diagnosed March 2009

#6 Kathy D

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Posted 10 August 2014 - 08:13 PM

3.5 weeks  without a voice now and I am regaining a froggy sound :)


Diffuse Scleroderma Diagnosed March 2009

#7 Joelf

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Posted 10 August 2014 - 10:56 PM

Hi Kathy,

 

That does sound as if there's a little progress! :)

 

Hope you recover your full voice very soon.

 

Best wishes,


Jo Frowde
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#8 Amanda Thorpe

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Posted 11 August 2014 - 02:34 PM

Wow, Kathy! That's a long, long time to be quiet and I hope you soon have your total voice back.

 

Take care.


Amanda Thorpe
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#9 Kathy D

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Posted 12 August 2014 - 10:41 PM

Thank you friends for the kind words :)

 

I have not rescheduled all the major tests yet but I will once I regain my voice and the cough calms even more. 

 

Sometimes I cough so hard it sends into heaves I cannot stop.  Of course then I try to suppress it so I don't lose my medications I just swallowed!  That works most of the time.... I am blaming it on this horrible virus in combination with mild nausea from my medications, they have nauseated me since I began taking them years ago.  I wasn't so fortunate this morning,  and the electrician doing remodel in our house turned the power off at that same moment so I did not have water to rinse.  Not fun!  I faked it for dear toddler, she didn't seemed worried.  LOL she, myself, and dear husband/her father all had the stomach flu together about a year ago.  Talk about a family affair!

 

When the doctor told me on my first visit that if it was viral it could be 2-3 weeks before I healed I was astonished, but here I am almost a month later just barely getting my voice back.  I am still resting my voice when I can but I am THRILLED to talk in a low growl if needed :)  Somehow the toddler and dogs still obey whether it be a whisper or froggy growl lol.

 

The last few days my index finger knuckle on dominant hand is sore.  I tried to blame it on clicking my computer mouse too much since I sit most of the day lol but I think I inflamed it while helping dear daughter jump jump jump on the bed, and on the couch, and on etc...

 

Woo hoo, I also cracked a molar tonight.  Dear Husband brought home fast food since its easier because we are in a camping trailer during the remodel.  I hit a bone shard in the burger I ate.  Thank goodness it doesn't hurt, it's just mustering all my will power not to play with the loose 1/4 of my back tooth...  I have recently moved to a new state and have different dental insurance; sadly my new dental insurance does not have a way for me to identify providers. (website "under construction").  I will make phone calls in the morning.  (sigh)

 

I know that life is not easier for any of you either.  I am sorry we are all here, but thankful for a place to come.  Sometimes I just need to put it all out there.


Diffuse Scleroderma Diagnosed March 2009

#10 Amanda Thorpe

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Posted 13 August 2014 - 01:33 PM

Hello KathyD

My husband used to have a saying "better out than in" so I totally agree. Remember that sharing helps others as well as you.

We get to read a real post by a real person living a real life!

Take care.
Amanda Thorpe
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#11 Shelley Ensz

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Posted 14 August 2014 - 05:52 PM

Hi Kathy,

 

I'm glad your voice is thinking about coming back. I'm betting you'll agree with me that there are few better ways to stretch a minute into an eternity than to spend it trying to not talk when you need to. 

 

I'm sorry your tooth bit the dust. We don't have a Sclero Forums Tooth Fairy, but we do have a magic wand!  So I am going to use it to wish you luck finding any dentist within a 50 mile radius. Here goes: :fairy: .

 

There now, do you feel better already? :high-five:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

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

#12 alice1

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Posted 16 August 2014 - 08:45 AM

Kathy...I too have breathing problems but my echo is fine, lungs are ok, heart good, we are still searching for the problem.  Good Luck



#13 Kathy D

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Posted 18 August 2014 - 06:13 PM

Thank you Amanda and Shelley.

 

Amanda, I would rather have it out than in too!  Except I worry about what pills I have not absorbed...  And yes, real stories from real life Sclero person!

 

Shelley, this time it's not my little toe hurting, but thanks for listening anyway.  I appreciate the fairy wand!  It won't get fixed for another week and so far no pain!  (though I'm too fearful to put toothbrush on it.......)

 

Thanks for the cyber support.  Sclero is difficult and all the little stuff that it brings makes the simple things worse.  Your kindness makes better :)


Diffuse Scleroderma Diagnosed March 2009

#14 Kathy D

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Posted 18 August 2014 - 06:21 PM

alice1,

 

Thank you for kind reply and positive outlook!  My tests are not rescheduled yet but I will post the outcome once they all happen.

 

Kathy


Diffuse Scleroderma Diagnosed March 2009





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