New here and would like some advice please

[SIMON8234]

Hi, I am new here and my name is Simon and 35 years of age.

I have recently recieved a letter from my consultant cardiologist regarding results of various tests I have recently had at ST Bartholomews Hospital.

In the letter is states the findings as the CT scan showing severe ductal coarctation with a severe hypolastic isthmus. I also have a Biscuspid valve with moderate regurgitation. On echo it showed my aortic root to be dilated at 52-58mm.

The letter also states obvious radiofemoral delay and reduced pulsation in my femoral artery.

Blood pressure was 215/110 mmHG in right arm. I have been taking 10mg of amlodopine and 10 mg of Ramipril but it doesn't seem to be reducing my blood pressure a great deal.

Reason for my post is the letter doesn't really tell me anything about if I am going to require any kind of surgery. Basically all these big words have worried me slightly and if anyone can put my mind at rest I would be most grateful.

Sorry for the long winded first post guys!

[BobD Volunteer]

Sorry Simon but this part of Healthunlocked is primarily for people with atrial fibrillation which is an arrhythmia. In other words an electrical problem whereas yours sound more like a plumbing issue. I suggest that you scroll through Healthunlocked forums in the hope that there may be more dedicated groups out there to suit your needs . In any even we are not medically trained and probably would not be able to help.

Sorry..

Bob

[Hidden]

Hi Simon, welcome to the forum and sorry to hear about your ticker issues. Although many here on the forum have a better depth of knowledge and may be able to interpret the content of your letter, you should be aware that we are not medically trained therefore it could be difficult, and possibly unwise to comment on such a detailed communication. Many of us, me included, have had similar letters that can scare the pants off you, but very often, the outcome is not so bad!! I really think you should seek a follow up appointment as soon as possible to find out in laymans terms, what the best route forward might be.

The volunteers, and some of the more knowledgeable folk here may have some helpful comments once they get in after their BBQ's....all the best, and try not to worry about the long words!!

[SRMGrandma Volunteer]

Hi Simon, It would have been much better to learn all of this through face to face meeting with your cardiologist, vs. a letter packed with frightening medical terms. I hope you have an appointment scheduled soon to discuss your treatment plan which may be a combination of drugs, or often a procedure called a balloon angioplasty. What the plan is depends on your age and the severity of the problem. It is the defect that is causing your blood pressure to be so high so treatment is aimed at correcting that. Take a deep breath, try not to panic and get in as soon as you can with your doctor to learn the game plan. Wishing you well as you figure it all out!

[jeanjeannie50]

Hi Simon, I would ring my doctors surgery and ask my GP to call me back and explain the contents of the letter in a way I could understand.

Jean

[rosyG]

think Jeanjeannie's plan is good- GP should be able to explain but can also get you an appointment so consultant can discuss options

[Jamila123]

Hi

I do wish you well 🌺 Its sad that you didnt not feel you could ask the doctors

These questions

They have no time and sometimes do not realise that patients need support and are scared to ask questions

You need to be assertive with the them

If u are not happy with something tell them

All thses questions are very very clinical and because of that you need to be absolutely sure of whats going on with your body

You can only do this by knowing and understanding what the doctors have told you

So call them make an appt. or make an appt woth your GP although he might not understand too well whats going on because he is not a cardiologist

I would call them

And explain that you are concerned have many un answered questions

Then when you have all the info and diagnosis you then can start your own research on your condition if you want

Good luck

Remmeber uou are not alone in this

June 🌺

[philologus]

When I was diagnosed with heart failure I was referred to my local heart failure specialist nurse team. If I have any questions or need advice I ring them - and have been very grateful for their help and advice. There's a good chance that your cardiac team have a similar set up so you could try to find their number and give them a ring. They have more time to talk to you and will answer most questions in layman's terms for you. (Write a list in advance.)

I went for a scan because I was having a lot of ectopic beats and was told rather bluntly, that I had Heart Failure at the worst level. No advice, no explanatory leaflet, just "You will hear from the specialist". I thought that HF was a cause of death- not a treatable condition so I had the difficult job of explaining all this to my wife who has Dementia. I did my research and found this site and learned a lot. I'm still here three years later so don't worry too much. Give yourself time to take it all in and then assess your options.

George.