support for family members

[sutaylormills]

Hi all my husband has a congenital heart disease. When he was a baby he had a pulmonary valve stretch.

Now almost 52 years old he has suffered from pulpertaions for years ( which he's on medication for). after being unwell 6 months ago he was taken into hospital to have several test done, anyway to cut a long story short the tests have come back with severe regurgitation from the pulmonary valve, the right vertical is 1.8 larger the the left, he's suffered from SVT and pulpertaions are still present.

He is currently on the urgent list to have a ablation then followed by pulmonary valve replacement, since he has been given the diagnosis he seems to be going down hill being tired all the time, he struggles walking up hills etc.

As for his wife I'm really scared, what support is there for family members?

thanks.

[Midgeymoo17]

Firstly is your Husband being seen by at an Adult Congenital Heart Specialist unit? Clinically it is not necessary if the only operative procedures he has had are on the valve (many hospitals have as good results if not better results for valve operations than congenital centres) but these centres do tend to approach care more hollistically. As such often some of clinical nurse specialists are trained councillors and the nurse at my congenital unit will do family sessions- but not sessions solely for family members. I.e: It would have to be you and your husband together.

If you were talking about less formal support but more community support then this forum is good and you could try this Facebook group:

m.facebook.com/groups/43569...

The Somerville Foundation is set up to support young people, adults and family memebers affected by congenital heart disease. They also have a helpline and a support worker who does have fairly good knowledge of ways in which you can access more formal support.

Also just to reassure you complications from pulmonary valve leakage do develop very slowly. We joke I was on the surgical waiting list 15 years because this was the time being told an operation would be required to actually receiving it. It is very likely the symptoms you listed were there before diagnosis and due to diagnosis you notice them more. I was the same. I was a competitive swimmer but had fallen behind my peers and was training with people 4 years younger. To be honest I was oblivious to this until my cardiologist said my heart had deteriorated and I started re-evaluating if I had missed something. I also had not noticed my really cold feet until being told my heart had deteriorated- my parents had noticed this however.

[sutaylormills in reply to Midgeymoo17]

Hi

what you mentioned about being oblivious really made sense.

yeah he's seen a specialist from Bristol which said his ops were needed and the he will only get worse, it really is worrying seeing him struggle at things he never had no problems with a few years ago.

He has been told if his symptons got worse while he was waiting for his first op to go to see his doc, but I have mentioned how he's been and that he should re visit the doc but he's very reluctant to.

thanks again.

[skid112 Heart Star]

Hello there, welcome to the forum. You will get plenty of support from members here, we too have a few family members who post (not enough though other members maybe have a chat with partners, children!!) The BHF helpline will also be able to provide some assistance, 0300 330 3311. It is perfectly normal to be scared, I always suggest making a list of questions to ask the cardiologist, easy to forget what you wanted once you are in the appointment.

Is he on any medication? if its beta blockers they will contribute to the tiredness, as well as some others.

Good luck

Mark

[sutaylormills in reply to skid112]

Hi thank you...

he's on verapamil, as far as we know they don't cause tiredness.

yeah we had a list when we went to see his cardiologist she just bombarded us with all these medical terms we didn't really understand. it's just waiting now till he has his first op.

[skid112 Heart Star in reply to sutaylormills]

hi there, the lack of blood pressure will also cause his fatigue.

there are some threads on here which may provide some further information healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...