I’ve had some upsetting results. - British Heart Fou...

British Heart Foundation

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I’ve had some upsetting results.

Trevor29 profile image
21 Replies

Dear community, I had an angiogram last week and received a letter this morning that I wasn’t expecting. The results of the angiogram show I have severe heart disease . The circumflex coronary artery cannot be vascularised using surgery. They are going to do a bypass of left and right arteries. After that they will try to stent circumflex artery.

Has anyone else been told that bypass surgery will not work for them? I’m really upset and am alone in the house. Have tried to get a gp appointment but nothing available till next week.

Any help, advice etc greatly appreciated x

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Trevor29
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21 Replies
MichaelJH profile image
MichaelJHHeart Star

Hello and welcome to the forum! After being referred to the Urgent Chest Pain Clinic with severe angina and having an angiogram I was told I would get an appointment for stents in about a month. However, further tests revealed I would need a quadruple bypass because of calcification. I found out about this when the specialist hospital I was referred to rang me up. Communication from/within the NHS seems poor. I would try and get an appointment with the cardiology team that did the angiogram. Many GPs are not as knowledgeable as one would hope but then they are generalists and not specialists. Good luck.

Trevor29 profile image
Trevor29 in reply toMichaelJH

Thank you for taking the time to reply. I’m not sure that I should have been sent the letter as it was an internal,one between two consultants. But hearing back from kind people has helped and I wish you well with your health.

benjijen profile image
benjijen in reply toTrevor29

If the letter was sent to you in error then that is not acceptable. Ring the consultant(s) concerned on Monday. You will probably have to speak to their secretary but you can emphasise your upset over it. Also, does your GP do telephone appointments? If so ask for one urgently and they should ring you same day. They may have a copy of the letter and, although they don't have the knowledge of a consultant, they may help to explain things. My GP was very good at putting my mind at ease. You don't need any additional stress at the moment. Good luck and let us know how you get on.

Pommel profile image
Pommel

Dear Trevor, it's so upsetting being given frightening news and I know that we always hear the worst parts the loudest. I think you've done the right thing in writing to this group as it helps to say it out loud. I can't help with your diagnosis as my experience is so different but I do know what it's like being given bad news. I would call the helpline to ask about what this all means but know that there are lots of us out here who know what you're going through. I hope that the explanations you get now will give more reassurance and help you feel better! Take care.

Trevor29 profile image
Trevor29 in reply toPommel

Thank you for taking the time to reply. Just writing it down and hearing a kind voice has helped!

Trevor29 profile image
Trevor29 in reply toPommel

I do, of course, also wish you well with your own health.

Kristin1812 profile image
Kristin1812Heart Star

Hi Trevor. What a shock for you, and it came in such an unexpected way. I’m one of those people who prefers to know what’s going on, but that doesn’t suit everyone, I know,

My experience might help.

I ended up having lots of stents, none of my blockages were suitable for bypass. But it took a while to do them. Some needed the balloon treatment, others were stented, one redone, and one a branching one. My meds have been juggled a lot. Now I’m pretty stable, I exercise 3-4 times a week, and keep pretty busy. It’s not as active as I used to be, but I get the best out of my heart.

It is a new way of living, not a return to my old life.

It sounds like your Cardiologists have a now got a good picture of what needs doing, and will get on with it. Im hugely impressed with the NHS service I’ve had.

Keep posting, others have said how it also helped them to write down what they are thinking and fearing. True for me, too.

Jinky07 profile image
Jinky07

Hi it does sound as if the letter was sent in error as no one should hear news like this that way. Maybe an appointment will arrive soon from the cardiologist to discuss this. I was told the area in one of my valves was too large to stent so I have to go back in a few weeks to see how I have been coping with medication and see what the next step is. Take care

isobelhannah18 profile image
isobelhannah18

hi

I have experience of 2 cardiology teams and have been hugely impressed by them. It seems to be the sort of speciality that attracts the most talented people so maintain faith in them. You probably should not have received an internal letter and in most areas there are patient liaison or support groups who can give support around issues like this.

Good luck

shopman profile image
shopman

If you are having trouble getting a GP appointment you could always ring the BHF Helpline and talk your concerns over with the Heart Helpline - : 0300 330 3311

Phone lines are open 9am to 5pm, Monday to Friday

Handel profile image
Handel

Good luck Trevor. My hubby went in for what seemed to be a routine angiogram in June. Results confirmed he too was in need of a quadruple bypass. Apart from a delay in sending results to another hospital for an operation, we've been lucky I guess.

I'd agree with benjijen. Contact the hospital where the angiogram was performed (this is what we did), ask to speak to your consultant's secretary and hopefully, things will move on from there.

Thinking of you xx

Henry20 profile image
Henry20

Hi Trevor

I really do feel for you and your situation. I suspect that your feelings, being in turmoil, just distort everything about life at the moment. That's certainly how I react when told something I never wanted to hear.

We all have to find our own way of coping though. My reaction is to want something to happen 'Now', 'Immediately'. Feeling out of control is difficult, so I try to take it back by doing.

Talking to the Drs can be difficult in these cash-strapped times, but is there a practice nurse you could ask to see? I have found that having a nurse in the surgery on your side useful on a couple occasions; they have access when you don't.

The suggestion from Shopman above is also good. I've phoned them on one occasion when all at sea emotionally - they helped a lot.

Also, I've found books that claim that even patients with severe heart disease can change things for the better by changing their diet to one based on plants.

(Prevent and Reverse Heart Disease by Esselstyn available through Amazon; there are others on the same lines. The individual case studies will reassure. There are however some fiercesome critics of his recommendations out there on the web.)

But it would give you something to do that at the very least would make you feel you were trying to change things. I know someone who is following the strictures of the diet and he swears by it. - Be prepared to loose weight though, and I found it very difficult to follow, lost a lot of weight so I was significantly under what I should be. But I have changed my diet drastically. You could ask someone perhaps if you could do yourself any harm by following it.

Please don't follow the diet because of this post. But its worth researching, perhaps, and then making up your own mind.

I wish you the best of luck for the future

Henry

Heartlady123 profile image
Heartlady123

Hi Trevor.. .Really sorry that you have had news that you weren't expecting. I believe that when a cardiologist writes a letter then the standard process is that the patient is sent a copy. Although I have sometimes been shocked by the things they have said about my heart in these letters... at the same time it does keep me in the loop.. and keeps me informed about what they are planning to do. So although upsetting I know, try to think that you are being made aware.

Now Next steps, I would suggest is call the secretary of the consultant ... they are normally very helpful and I have found they get back to me either letting me know if and when there is an appt... or they have got the consultant to call me directly.. . Who have then been able to talk me through what it all means.

I would also call BHF helpline on Monday.. . They are manned by heart nurses... and they are brilliant! They not only are great at explaining technical terms... but give practical advice on what you can do.

For me, when I have been worried by this type of news, I found that contacting people and getting mire info helped me feel in control. And when talking to the professionals it has also helped me to be reassured and stopped the stress levels.

I also have severe HF and even in this diagnosis there are differing levels of this... the good news is they now know what is wrong.. and so now they can put together a plan on how best to help you. All the very best karen

sandrann profile image
sandrann

Hi there Trevor... I'm sending you hugs and hope all's sorted for you real soon.. the folk on this forum are a lovely bunch and I hope you find support and comfort from all the replies.

Have a great weekend.

Prada47 profile image
Prada47

Hello Trevor

If my consultant sends a letter to my GP I am automatically cc on it. I do believe that this is now the way the NHS communicate after all it's your illness not your GPs !!! Just look at who the letter is addressed to and who is on the circulation list.

I had CABG in 2015 my RCA couldn't be bypassed so they did LAD and Circumflex 3 years later I needed stents in my LAD my RCA is non viable so it just remains blocked !!

regards

Hi Trevor, sorry to hear of your diagnosis. I have had numerous stents including the left main stem. I know it is a very stressful time for you, and you can feel lost. But you've done the right thing by posting on here. Please be assured you are not alone. I got great comfort from people replying to my posts, at a time when I was feeling both frightened and vunerable. There are a variety of conditions, but the worries are still the same. As others have said, keep posting. I wish you well.💜

Qualipop profile image
Qualipop

So sorry about your news but all GP surgeries have to do same day emergency appointments. If you say it's urgent and heart, they cannot refuse you. You don't need to go into details with the receptionist

CA1949 profile image
CA1949

I do hope that this gets cleared up. I cannot understand what is going on the in the NHS these days.

I was abroad visiting friends in the TRNC when I had my heart attack and had stents put in and I am still here, for a while, being cared for. I was into surgery within 10 minutes of arrival and the work was done in under an hour and a half. The surgeons talked me through the procedure all the way through, in fact I watched it on the screens above my head (fascinating!). I was in intensive care for two days, my own private room for another two and the total cost was about 3k. That includes drugs, food, room, operation, nursing care and follow up for a month in a brand new and immaculate hospital. I am going to stay on until I can fly back as they tend to be cautious on that front. I also think that I can be quite confident in the treatment, too.

I am beginning to wonder what we pay our tax for in the UK!

Helen_BHF profile image
Helen_BHF

Hi Trevor, that must have been a miserable morning for you. I'm sorry you were on your own. Have you managed to speak to your GP? Please do get in touch with our heart helpline team if you ever want to chat things through with them. Call 0300 330 331.

Hi Trevor

Just read your post and you have my sympathy, I was told 5 years ago that there was no more physical interventions left for me (stents or bypass) and had to rely on drug therapy. I`m not going to say it`s been great because some days it`s been hell but I manage on most days.

So don`t give up and try to make the most of each day because they are valuable to you, your friends and family.

Stay strong and good luck

Steve

Trevor29 profile image
Trevor29

Thank you to all of you who have taken the time to reply. It really is very comforting to hear from you.

I saw my GP today who was very surprised that I had been sent such a letter. I had been copied in on a letter from one consultant to another in the cardiology department at my hospital and written using highly technical language. I’m doing better now, but naturally still worried and will be seeing my consultant next week.

Wishing you all the very best x

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