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Amanda Thorpe

Optimisation ECHO, LFT and rheumatology

3 posts in this topic

Hello All


So I was at the Royal Free 2 weeks ago having an optimisation ECHO one day and lung function test and rheumatology the following day. I had thought that the optimisation ECHO looked at both sides of the heart but it doesn't, it looks at the left side and pacemaker function only. Well I can't tell you how disappointed I was when the technician told me this as my concern this year is the right side of the heart and I can't tell you how thankful I was when he agreed to do a full ECHO in view of the circumstances.


Weirdly the ECHO was painful when pressing on the ribs on my left side, it wasn't last year so I don't know what that's all about! Although they couldn't give me the ECHO results they were able to confirm that my pacemaker had already been set at optimum function for me.


This year the lung function test was actually hard and I knew in myself it was worse than last year. So far all I know is that my results are down again on last years which were down on the previous years and that my FVC is 87% and my DLCO is 68%. Anyone know what the normal ranges are so I can get an idea exactly where I am?


When I saw rheumatology I talked about the return of shortness of breath, fatigue and the possibility of plaquenil and also talked about pain. The rheumatologist had a few ideas but wanted to talk to cardiology before changing any medications which is fair enough. He said that the lung function was within normal limits but no discussion on year on year deterioration and I didn't question it as my concern was what the optimisation ECHO results were. Unfortunately it turned out that they were not available and wouldn't be for days because they take a long time to process, it being a specialised test. It was left that an appointment would be made for me to return in 6 weeks time to see the pulmonary hypertension team and rheumatology on the same day that way they co coordinate any change of medication and the ECHO results and their implications. The specialist nurse would ring me when the results came out just to say whether there was anything alarming.


Well I have my appointments and the nurse rang today to say a letter is on its way to me. She said that there was an improvement with the function on the left side of the heart but didn't elaborate, I need to find out what the ejection fraction is this year as I was expecting to hear things like vast improvement etc. I asked about pulmonary hypertension and she said the pressure in the right side of the heart was elevated but again I don't yet know how much. The pressure was up last year and they thought it a knock on effect of the left sided heart failure but that being the case the pressure should have returned to normal once the pacemaker did its thing...right?


Here's my concern, in 2009 the left ventricular bundle branch block didn't necessarily effect heart function and then in 2010 I was in serious heart failure, I went from one extreme to another. When I go back to the Royal Free I must clarify the significance, if any, of falling lung function and whether I have or am on the cusp of having pulmonary hypertension as I'd rather not find myself suddenly seriously ill again and wondering how I got there.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Amanda,


I had a Lung Function test this week too and I have just been reading the letter which they sent me with my results. Last year before I had my heart repair (balloon valvuloplasty for mitral stenosis) my DLCO was 60% of expected, low but not alarming was how I perceived it. This time my DLCO is 68% of expected - low normal - and an improvement which is always nice to hear. At the same time I have been less fit than ever. I have been finding it very hard to do what I was doing even when my DLCO was lower so I really don't know what to think. Last year my FVC was 106 and this time it is 103.


From what I have read DLCO is diffusing capacity and this test is most useful to identify beginning of fibrosis when chest x-rays show nothing untoward. Apparently the effects of my heart disease are less than before so I have to hope that it has been slowed down in the meantime, but why I am less able physically is something I want to discuss with my general practitioner and rheumatologist.


I have found it very hard to find much help in understanding these results. I have googled 'how do I interpret DLCO results' and that came up with some helpful comments but nothing very comprehensive. Which makes me wonder if the whole thing depends on results relative to one another as well as the clinical indications.


I think I was quite lucky to strike a Cardio Surgeon who was keen to establish positively that my pulmonary hypertension was NOT caused by anything other than the mitral stenosis, and the procedure he performed was done much earlier in the run of the disease than would normally happen with people who have rheumatic heart disease. I can understand you being keen to establish that you do NOT have PAH. I was beside myself for all of the time I had to wait to be told what was actually going on.


I have only once had an Echo at the hospital and that took so long to get results of I swore I would never do that again. We have an adequate Insurance policy (taken out in 1972 long before I was very sick and one of the best things we ever did!) so now I do it privately and get a letter in about a week after the test.


I will keep my fingers crossed for you that you will get some good news soon.


Warm hugs from downunder.



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Hi Amanda,


I'm due to have a lung function test in a couple of weeks but the last one I had showed FEV/FVC 2.8/3.6 - 129%/140% predicted and DLCO was 82% predicted. The reason I mention it is that my consultant said that these were essentially within "normal" ranges. :emoticon-dont-know: I do think that "normal" can vary from person to person though; even when my lungs were at their very worst and my DLCO was only 48% I was still fairly able to continue with things much as before, albeit feeling a little more breathless. Unfortunately, my lungs have not felt quite so good over the last few weeks so I'm not expecting such a good result next time. :(


Thankfully, I don't have pulmonary hypertension so can't advise you about that from my own experience and the last ECHO I had at The Royal Free showed normal pulmonary artery pressure.


It's good that you've got your appointments and I do hope they can answer your questions satisfactorily. It must be very worrying for you and I wish I could give you more helpful information. One comfort is that you're being dealt with by an experienced and knowledgable medical team, so that's a mercy, at least!! ;)

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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