Coarctation of the Aorta

Hi, here are the Patient leaflets (both normal and professional) on the condition :

patient.info/health/coarctation-of-the-aorta-leaflet

patient.info/doctor/coarctation-of-the-aorta-pro

Hopefully they contain everything you need to know

From what I read this condition needs repair so don't hestitate to ask for a referral to a heart specialist. This is usually detected at birth and treated than. I don't know. what your doctor told you but here in the USA its treated in a catherization center and should be the same in New Zealand.

It should be done soon.

I live in UK and they repair it via a catheter through the groin, if that doesnt work they they may opt for open heart surgery, but it depends if it affects his quality of life.

They have attempted to fix mine via groin many times without luck, and also via open heart surgery, but hasnt really affected my life as much as my other heart problems.

Hope this helps x

NZ has fantastic public health system, you may need first to be referrred to heart specialist.

I suspect your husbands file would have been looked at by a heart specialist in the public system when they discovered the issue, and then he was rated extremely urgent, he would never have left the hospital, or needs to be looked at in the future, or nothing to worry about.

Your local GP should have a report on his admittance for stroke and comments about the narrowing should be in that letter.

If there are no comments in that letter to your local GP, its up to you to insist the hospital follow up through your GP firstly.

If you are still not satisfied get to a private specialist and part with the dollars you need to to get that satifaction.

If they then want to put you in a private hospital, be very very blunt and tell him the funds don't stretch that far, insist the specialist write a letter to the hospital for your husband explaining what is going on, insist on a copy.

They will tell you the specialists letters have no more pull than the GP's letters, but I have found over the years, even though they deny it to my face, that I have been seen sooner than I would have without that private specilist appointment.

Makes me really angry and frustrated when you find yourself sitting infront of the same specialist you saw privately.

Last comment - always ask for copy of your results from tests, and specialist letters, and keep them in an old laptop computer case, in date order, amazing the results when you can produce your own files that match or are better than the hospital files, no arguing with a fellow specialists opinion as they would argue with you face to face, or certainly not in your hearing, the number of times I have been asked for copies of my files is frightening.

I always carry my computer case with me when we visit the hospital, and when you get a junior Dr saying ohhhh, this is an old file, I pull up the case, and say well this is current, it has his orginal private diagnoses and then all his hospital letters, incl appointment letters, I don't trust them,  for the past five years, all his ECG's in envelopes, x-rays, Echocardiograms etc, I always ask for a copies, and if I don't get one I keep pestering my GP until I do.

My filing system I believe has saved my husbands life a couple of times as he does not have expected syptoms of heart failure, IE swollen ankles.