Scleroderma & Raynaud's UK (SRUK)
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CT scan and stress echocardiogram

I'm in need of a chat as there is no-one at home to talk to without upsetting them and there may be no need to worry!

I went into hospital because of GP concerns with my last ECG but nothing was decided apart from one doctor (to another) discussing possible heart failure. I came home no wiser but thankful that all seemed ok apart from them saying they would like further tests done - CT scan, lung function etc.

Had lung function done which shows a reduction in transfer of oxygen from lungs to bloodstream since last time.

I have become increasingly tired and breathless with an ache/ pain in left shoulder and down left side of chest. Ankles and legs are starting to swell more noticeably too.

Had pneumonia and flu vaccinations last Wednesday.

Went to rheumy appointment on Thursday and had a really good check up resulting in being told that the CT scan would be asked for ASAP. I received a letter on Saturday saying scan is next Friday. Quick?

Echocardiogram is the week after.

This morning I have felt quite dizzy and feel a bit sick with a grumbly tummy.

I have now made the ultimate mistake. Yes - GOOGLE! Why, oh why do we do it?

The possibilities are scary aren't they?

I retired in July with endless plans but have felt poorly ever since - grrrrrrrr!!

Who has had similar happenings?

What might be the results?

What next?

Thanks for listening


9 Replies

Do you have Raynaud's and Sleroderma (systemic sclerosis)? If you have complications you are being attended quite quickly which is good. Once it's been diagnosed it can be treated and you will know where you are. You seem to be in good hands.


Yes, I was diagnosed with Raynaud's and Scleroderma three years ago but have had symptoms for much, much longer. Things seem to have suddenly got worse and its been scary.

You're right, I will know more when all the tests are done and I can't fault GP or hospital for the speed they've organised things.

It's the not knowing and being told very little.

Maybe I'm just feeling a bit sorry for myself?

Thanks for replying

1 like

Felling sorry for yourself is ok once in a while. We all have our down time (some often as the disease progresses). Just keep pulling yourself back up. Think of you.


I also have been diagnosed for 3 yrs ,its progressing very quickly im so frightened to what is coming next,everytime i go to hospital theres something else.


Hi Triumph

How did you get on about your heart issue. Hopefully it is all ok. Best wishes Lynn


Hi Gill, I know how horrible it is to be in limbo land where people drop into conversation that things are amiss, one can say anything more until they do more tests. You are in the system and you seem to be having everything sorted so that is all good news. If you can bear it just see if you can keep yourself away from the dreaded computer and wait until the facts are in front of you...hopefully with a clear explanation from a health professional accompanying your results. When they know what is going on then they will be able to look at the best course of treatment.

I know what it is like to wait on heart and lung are going to get through it. Hold on in there. All my best Lucy x


It just takes a couple of people to talk sense and you start to think straight again!

I shall definitely keep away from research - it does me absolutely no good at all :-)

Thanks for replying



Hope you are okay. How did your echocardiogram go ? I hope it went well for you. Best wishes Lynn


Thanks Lynn - very kind of you to ask!

Have you had a stress echocardiogram? The doctors and nurse were absolutely fantastic and we had quite a laugh until I had to get on the treadmill! I was determined to do everything asked of me but practically passed out through being unable to breathe - twit.

Anyway - my heart is absolutely fine (wonderful news)but they reckon there is something wrong somewhere to be causing me to be so out of breath so need to see lung man again.

That will be after I go to another clinic this Thursday for a couple of scans because the CT scan for my lungs showed a small 'nodule' in my breast.

I am getting my absolute moneys worth for all my contributions to the NHS over my working life!! Can't complain at all can I?

Hope you are keeping well,

Best wishes, Gill


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