Heart Biopsy

[GreenMonday]

Hi all, my husband has inflammation in the heart (confirmed by a pet scan) and has now been asked to have a heart biopsy in order to try and determine the cause. Has anybody had to have a biopsy and if so we are wondering if it was successful in determining the type of inflammation? We have been advised it is not always possible to do this.

Thanks all

Kerry

[Milkfairy Heart Star]

Hello

Have the doctors suggested your husband may have cardiac sarcoidosis?

You could ask for a second opinion from a specialist unit such as the Royal Brompton Hospital in London.

rbht.nhs.uk/our-services/he...

I also suggest you give the BHF Helpline a call and speak to one of the Cardiac nurses.

[GreenMonday in reply to Milkfairy]

Hello, yes either cardiac sarcoidosis (although no evidence of that from the pet scan) or myocarditis. We are possibly hoping to transfer to Papworth as it is a lot closer to us but equally don't want to hold any processes up.

Thanks for your help and reply.

[Milkfairy Heart Star in reply to GreenMonday]

The Royal Papworth is a centre of excellence too.

You may find this link helpful

bmjopenrespres.bmj.com/cont...

You can ask your GP or present Cardiology team to refer your husband for a second opinion.

[GreenMonday in reply to Milkfairy]

Brilliant thank you for your help.

[Milkfairy Heart Star in reply to GreenMonday]

Good luck.

Please come back and tell us how you get on.

[GreenMonday]

Thank you. That is our concern going through the procedure and not being able to confirm a diagnosis or treatment. Can I ask, were you home the same day that you had the procedure? Thank you again.

[Ads568 in reply to GreenMonday]

Hello GreenMonday,

I have had many heart biopsies. In my experience it is not at all painful, can sometimes be a little uncomfortable and sometimes a bit achey afterwards. Any discomfort is around the entry site at the side of the neck. I sometimes get a funny fluttering feeling inside my chest when the small ‘pinch’ is taken from my heart. Yes, when I’ve been an outpatient I drive myself to the hospital & drive myself home (usually after a few hours of other tests & consultations, etc). Hope that helps!

Best wishes.

Adsterp

[GreenMonday in reply to Ads568]

Hello, thank you so much for your reply. I will pass the information on to my husband, it's a huge help. Can I also ask were they successful and able to diagnose treatment from the biopsy, I understand it's not always possible.

Thank you again

Kerry

[Ads568 in reply to GreenMonday]

Hello Kerry,

Yes they were successful on every occasion, but my situation is slightly different. I had a heart transplant last year & the biopsies are performed to detect/rule out rejection. I’ve had one episode of rejection picked up immediately by biopsy. By 8am the next morning everything had been put in place for me to attend my local hospital immediately for 3 days of IV steroids - sorted!

Best of luck to your husband.

Adsterp

[GreenMonday in reply to Ads568]

Oh wow! What a journey you have had. I really hope you are doing well now?

Thank you again for taking time to help me, everything is all still new to me so every piece of help and advice is amazing. Thank you.

[Jhmom]

Hello, I’m in the same boat as your husband. Did you decide to do the biopsy? Did it give you information? I hope your husband is doing well.

[GreenMonday in reply to Jhmom]

Hi there. My husband had an ablation on 17th Dec and was supposed to be having the biopsy on 6th Jan, we have just received a call advising this has now been cancelled due to covid. He had the Pet Scan in September and still no meds or biopsy for the inflammation. I think Paul is nervous about the biopsy as he has also had an AVR four years ago, we have read this can make the biopsy a little riskier but we will take the consultants advice.Can I ask if you are going ahead with your Biopsy, if so I hope it goes well. Take care.

[Jhmom in reply to GreenMonday]

Thank you for your response! I’m nervous about the biopsy. This is the second time they are recommending it. I got a second opinion last time and was told to hold off. I’m waiting to speak to that doctor again( Myo expert but located in another state), to see what he thinks now. I’ve had 3 instances of ‘flare ups’ with a significant increase in troponin since august. I’m 44 and had no heart issues prior.

I’m on a bunch of meds, but not sure if your husband has a different treatment plan due to his condition. wishing you guys the best. this is such a tough disease. feel free to reach out.

[GreenMonday]

We have had conflicting info regarding the biopsy as well. One doctor didn't seem as keen so we are also hoping to speak with him before new biopsy appointment comes through. My husband is just on Sotalol at the moment but they are hoping the ablation may have helped the vts. We have been told they think he will need some kind of immunosuppressant to try and tackle the inflammation which is a worry as I have read the side effects can be a struggle. Although the care we have received has been great covid has just held all processes up (to be expected). I hope that you can soon speak to your doctor for a second opinion as well and are getting all of the support you need. My husband is 45 and until four years ago was fine, it's all so scary but I have to say this group has helped me cope, I don't feel quite so alone. Take care and please stay in touch.