How long do we wait

[kathleen919]

My hubby 56 diagnosed on 11th Jan with severe aortic stenosis.Hes had all of his tests and pre assessment back in April. The cardiologist explained his situation to him like this.........Think of me as the mechanic and you the car thats come for an MOT. Ive given you an advisory that your valve needs replacing, you may get upto 18 months, possibly a bit more but I advise you to have this done. I asked him when this would be done and he told us 4-6 months.

Hes happy to through with this, my concern and fear is that time is ticking by, my hubby has rung up every fortnight to ask if hes on a list, only to be told he is placed as "urgent" but again they cant tell him. I strongly feel he has been patient on the 11th of July thats bang on six months.

What should we do? I do think he is becoming more breathless but nobody is doing anything

[Tos92]

Hi kathleen919

I’m sorry to hear about your husband’s health.

I know you said you’re on the wait list, however, are you on the cancellation list as well?

Also, if it continues to be a problem, you may have to go down the route of PALS (patient association liaison service) at your local hospital. You can locate their email on your local hospital site and I would outline what the issue is and that in the midst of having already waited 6 months, his symptoms are deteriorating. You should be able to get a quicker response this way too.

Let us know how you both get on.

All the best.

Tos

[kathleen919 in reply to Tos92]

Thankyou Tos, that sounds like a plan

[10gingercats]

AsTos92 writes. Do get on the cancellation list of the dept where your husband will be seen for his op. They do work and I have been quite lucky to get a phone call about 50% of the time when someone pulls out.

[Dingledaw]

My young relative has been on the "urgent" list for over 2 1/2 years. Then suddenly was given a couple of days notice for a pre op and op is very soon.

The local hospital has been dealing with urgent and hospitalised only. They've just made a start on their urgent non hospitalised list.

I hope your husband gets in sooner. It's not a good feeling to be left wondering.

🤞

[Rhinos67]

Hi kathleen919, please get in touch with his Cardiologist if his symptoms are worsening.Also, if you or he aren't a member of UK Aortic and Heart Defects Pre and Post surgery on Facebook would highly recommend. That group gave me so much support leading up to my surgery. Everyone in the group has been though or is on a similar journey

Joanne

😊

[Astronomyrules]

Hi Kathleen, I waited just under a year for my urgent heart valve replacement, which included 2 cancellations, (during the Covid times), so I know how anxious you must both feel. I think the others suggestions of contacting the Cardiologist and getting on the cancellations list should speed things along. Good luck.