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[barbiejack]

hi im new to this group i got diagnosed in december after having a massive heart attack ,i have takasu not good a spelling,i need to have open heart surgery as my heart has been realy damaged,also my tak has attacked my thyroid and that is no longer working i also have massive blockages in my arms and legs that need operating on,i have had 3 appointmenats this week and not one of the surgeons will name a date for operating as they are so worried about what will happen,my last 3 angiagrams caused my heart to stop im a women of 43,my limitations after being in hosp for 6 weeks is just to sit on the settee i can no longer walk or even have a shower due to the back pain i get which is my heart staying stop anyone else had it light this thank you

[Hidden]

I also have vasculitis, though not the same as yours and also am preparing for open heart surgery and feel for you as it is a very scary position to be in. I have GCA/PMR and am taking prednisolone and am a woman of 62 whereas you are very young to be suffering so much. I went for the pre op assessment yesterday and awaiting results. I do take Arnica regularly which helps me feel more in control! Are you getting plenty of support from friends and family as I think it helps at times like this. I wish you the very best.

[barbiejack in reply to Hidden]

hi i take 60mg of pred also 18 other tablets i rattle lol,i was going to have my surgery but it was canceled with 20 mins togo now again im just waiting,my mum has been with me since i had the heart attack and i have people phoning all the time,but to be truthful that annoys me some times i know they only care but you say the same thing every day.thank yu for replying and i hope all goes well xxx

[BronteM]

Barbiejack, so sorry to hear that you've been so I'll and still feel so weak and dreadful.

The first thing is - where are you being treated? Takayasu's is very rare and there are not many places with a lot of experience in treating it. The most knowledgable are the Hammersmith hospital in London (professor Justin Mason and his team) and Addenbrookes in Cambridge (Dr David Jayne and clinic 12). If you are not with either of them it would be a good idea if your consultant contacts them.

My TAK is nothing like as bad as yours, and although I have a heart problem it is congenital, and nothing to do with the TAK. I do get a lot of pain just under my bra strap though, mainly when I try to do anything active like gardening, so I sympathise with that - but my pain comes from my damaged aorta and the blockages in the arteries of my arms and shoulders.

I do hope they will be able to help you soon...are you on steroids or any other drugs?

[barbiejack in reply to BronteM]

hi im on loads of drugs im on 60 mg prednisole steroids and 18 others i rattle,it is so scary as noone knows what to do next,when i was in hospital they were in contact with america,but now it is just a waiting game,thank you for replying i hope your doing ok xx

[BronteM in reply to barbiejack]

We all rattle, I think! Most people are started on 60mg of prednisone plus a host of others pills and potions. But it's good that you have a really interested rheumatologist who is happy to ask for advice and concerned heart specialists. In fact it's probably the most important thing in getting you back to stability. Good luck.

[barbiejack in reply to BronteM]

im being treated at blackpool victoria hospital which is supposed to be one of the best cardiololgy units,my vasculitus/roomatologist is amazing she seems to no more than all of my surgeons xx

[orsen-trapp]

My TAK was picked up before it could do any real damage, as far as I know. Repeated high fevers and bad fatigue were the main symptoms, along with a very jumpy heart. They thought I had septicaemia and pneumonia on two occasions but it was the vasculitis. Can you ask a physio to give you some exercises to strengthen your muscles while sitting down? I found them very helpful when I came out of hospital too weak to walk any distance. Also, just managing 5 of each exercise then 6 the next time gives you something to aim for and a bit of a morale boost.

[AndrewT]

Sorry to hear that you are not well, not my area, at all really, sorry. I have had kidney problems, and a kidney transplant, in July 2013. Please don't worry however about your spelling- we have had MUCH worse than this, I can assure you.

Please do take care of yourself, kind regards

AndrewT