waiting for lung function test

[Helenlouise40]

hi all

I am wondering if anyone else has had trouble waiting for their annual tests. I have been on a waiting list for the lung function test since June and I am getting really worried. I have had a heart scan which was fine apart from some mild thickening which the Dr did not seem too concerned about and no breathlessness or anything. I have chased the appointment up but keep being told there is a backlog .

I today received a letter from my specialist in Manchester suggesting a referral to cardiology due to the mild thickening and my young age (43). So of course my health anxiety has kicked in as my biggest fear is heart involvement. When I spoke to my Gp and regular rheumatologist about this initially they did not seem concerned and said a lot of people had mild thickening . My heads all over the place now. Any advice from you lovely people welcome x

[trunchalobesity]

it’s best to get a cardiology referral. I have mild thickening .

I was diagnosed at 32 and am 55 now.

With regards to your lung function. When was your last one? There are waits but I would ring your consultants secretary to chase this x

[Helenlouise40 in reply to trunchalobesity]

Hi, thank you. My last one was about 3 years ago so a long time. I will ring again today and chase. I have made an appointment with my gp to get a cardiology referral but checking online it seems like a nine month wait. Can I ask what treatment they recommended for you? I’m really worried about pulmonary hypertension although I’ve never been breathless or anything. Thank you so much .

[trunchalobesity in reply to Helenlouise40]

Please try and ring your rheumatologist secretary. Or I usually email. You should be having lung function every year.

I’m on mycophenolate, Toxilimab and Nintendinab.

There has been great progress made in medicine but you need to be your own advocate and shade this with your consultant.

Good luck.

If you have problems ask to be referred to The Royal Free hospital London, the lead hospital for Scleroderma. Or and The Royal Brompton the lead hospital for lungs, sister hospital to the Harefield, lead hospital for hearts x

[Jacko37]

My last long function test was March 2020, week before the first lockdown. Appointment keeps being cancelled. Everything with the NHS takes forever these days. Try not to worry too much about cardiology, best to be on the safe side

[Helenlouise40]

thank you both. Spoke to the secretary of my rheumatologist today and she said there is such a huge wait for the lung function test it could be the middle of next year! May have to pay private if that is the case. She did say she would look into the cardiology referral for me, but again this will be a long wait. I know the nhs is a mess and I feel for them so much but we really shouldn’t have to wait this long for annual tests, it really could be the difference between life and death.

[OldTed60]

I can really relate. I too am asymptomatic and I have had annual lung function tests all back within range so far. But it’s other way round in my hospital and the very long list for cardio screening is the problem - no echocardiogram for 3 years when it’s supposed to be annual. I worry as my Raynaud’s has suddenly got much worse and attacks last for ages despite all measures possible. And I have even more red telengecstasia spots arriving which I read here points to higher risk of developing pulmonary hypertension.

My rheumatologist says I’m on the list and agrees I need annual testing although normal lung function reassuring at least but doesn’t exclude PH. She said that if I become symptomatic breathless to let her know and she’ll chase up as urgent.

I don’t think mild thickening is a PH sign necessarily because it’s right side I believe but it’s normal to worry if we aren’t routinely getting tests which should be annual - especially when we have a rare condition which cardiologists surely don’t see very often. I don’t want to wait for symptoms to finally get annual echocardiogram testing! x

[Helenlouise40]

3 years is such a long time to wait. I understand the worry. For me the fear of the disease progressing is the worst bit. I sometimes feel it is certain I will develop ph, even though I have no reason to believe that. I am not on any medication apart from high blood pressure and I am really lucky with my symptoms, mainly being the raynauds and Calcinosis. I was diagnosed around five years ago and I have developed really bad health anxiety due to this disease. I too have the telengecstasia on my face and I was really worried about this. My rheumatologist said although there is a small link to pah with it there are lots of people who have it and do not develop pah. The disease is so individual but you can’t help but think the worst. If we could have the tests annually it would make life so much easier. I was thinking of maybe having a private lung function test and maybe additional heart scans but as I have no symptoms it may not be wise. And of course if they do find something I will still have to wait for the referral for treatment. Fingers crossed we get some appointments through next year maybe! X

[Bkart]

Hi Helenlouise,

Heart thickening (muscle) seems to be a genetic condition which sometimes, as with other heart conditions, does not always show up until we are adults, depending on the symptoms. It may be that this condition was there all along and not actually caused by the Scleroderma but now because it has been found they want to monitor you and medicate appropriately if needed. Try not to worry as this doesn’t necessarily mean it will get worse, better that you and your Specialist are aware of this, from your post you don’t seem to be getting any symptoms so that is also a good thing. Like trunchalobesity I’ve lived with heart probs for years, so please try not to worry as stress doesn’t help.

I noticed that you mention Manchester so presume your Specialist Rheumy is at Salford, which is where I attend. I have my lung function tests at Wythenshaw, I see Dr Barrowcliffe, he’s very nice and easy to talk to. My tests are usually arranged pretty quickly, so perhaps you could be referred to him. I initially saw him privately a few years ago at the Alexandra Hospital in Cheadle and have seen him through the NHS since. Wishing you all the best, I know we all say try not to worry but we can’t help ourselves can we! Good luck.

[Helenlouise40 in reply to Bkart]

Hiya, thank you so much. I am actually under Bolton hospital but see a specialist in Salford once a year also. Salford are really good but unfortunately don’t seem to order the annual tests, and Bolton has huge waiting lists. I guess I could ask Salford if I could have them there. I never want to impose on them as they are all so busy but I think I will have to learn to be a little more assertive. Researching the mild thickening has made me feel a little better as it seems to be fairly common and does not cause any issues for most. But obviously it’s something that needs checking. Wishing you the best also!