Help.

[janann]

Lupus seems to love attacking everything I have. I have blackouts and unfortunately had one outside onto concrete. I broke my wrist in 2 places,dislocated it and rearranged all the bones. After trauma surgery then lots if physio I have limited use back. Just as I thought all was ok I got very breathless and my G.P sent me to hospital. I spent 4 days in and had lots of scans etc. I now have a tear in a heart valve which causes back flow of blood as it pumps from the heart to the lungs. Anyone else had this problem? Is the future heart operation?

[Johnnyb10]

Janann sorry to hear of your problems with Lupus. In terms of the heart valve, in 2016 at a routine rheumatologist check I was told I had a heart murmur, investigations found a leaking heart valve. In my case this resulted in valve replacement surgery in August 2016. I am fully recovered and fine now. I am not sure if in your case a tear can be repaired or you will need valve replacement. You will need to see a cardiologist I would think in order to assess your condition.

[janann in reply to Johnnyb10]

Sorry it is a leaking valve. I do get my words wrong. 😕

[Johnnyb10 in reply to janann]

Janann Obviously you will need to speak to cardiologist but normally you will need some kind of surgery.............if you have any questions about it then feel free to ask, mine was an aortic leak John

[janann in reply to Johnnyb10]

That would be great because at the moment I am stressed about it. Being breathless is not nice and climbing the stairs was leaving me panicking for breath but I control it now. I will see my GP again soon. He told me about this and I feel I need a bit more info. I will contact you when I have seen the cardiologist if that's ok? Thanks for your input I do appreciate it. Jan

[justjan2 in reply to Johnnyb10]

Sorry about your black outs. I had. them too. But it was related to CBS. I would not remember what I. did during the black outs.

[Hidden]

Hi dear... did u have fall and have that tear in your heart?? My sister had Lupus sle..we were told all her organs is damage but if we have a quick diagnosed she can recoperate and survive since she is young...we have her diagnosed they Drs started to treat her with steriod we don't have lupus meds in my country's guyana and we don't have a rhumatologist but steriod is the first meds for lupus i was told..my sister was completely not walking for month...she now start walking i massage her feet and learn her to walk again as a baby...my sister is home with us now she been discharge from the hospital and doing great home i gave her the meds in time and she doing good dear..

[Hidden]

Sorry tear in your heart valve i get it wrong??

[Hidden]

And i read on the internet that lupus sle cause tear in your heart valve etc

[janann in reply to Hidden]

I am not sure if it's a tear or a leak. I will see my GP and verify. It was not the blackout I had but definitely my ALE. I will know more when I see the Cardiologist. Sorry to hear about your sister but this ALE can attack anything and everything. It's a very cruel disease.

[Hidden in reply to janann]

Thank u dear..i made a mistake dear its sle not ale..lupus

[janann in reply to Hidden]

It was my error. I meant ALE but my fingers have a mind of their own 😔

[Chanpreet_Walia LUPUS UK]

Hi Janann,

We published a factsheet on 'LUPUS: The Heart and Lungs' which you may like to read here: lupusuk.org.uk/wp-content/u...

[janann in reply to Chanpreet_Walia]

Thank you. I will have a read as not really read about the heart as this is very new.