My 21 year old autistic son got a routine echo in December as part of monitoring for Dilated Cardiomyopathy because his father has the condition and no reason was found for his fathers condition.
2 days before Christmas my son gets his results letter which we presumed would be normal again because the technician appeared to indicate another one was reassuring. The letter said he has now been diagnosed with Dilated Cardiomyopathy and he would get an urgent cardiologist appointment, an MRI, a holter and be started immediately onto heart failure drugs. We were all shell shocked.
It took 3 months for him to get an urgent telephone consult with cardiologist which told us very little and left my son quite confused because they were not overly concerned about the diagnosis. Don't work in a heavy lifting job but otherwise carry on as normal and push through any breathlessness or chest pain as it won't be his heart. This is confusing for anyone let alone an autistic person.
5 months on and he has still not got an appointment for the MRI scan.
My question really is, why did they not do the MRI before they have started him on medications? They will never now know what his heart was like before medication.
Have they diagnosed him based on the fact his father has the condition?
It just seems they do not understand the enormity of the diagnosis to us, they are all quite blase about it. They say nothing for him has changed, well that is not true, he now is on meds for life, he has a heart failure nurse who he has to monitor his bp and weight daily for, he will struggle to get insurance etc. EVERYTHING HAS CHANGED.
Thanks for reading my long post. I am so angry he has the condition and just wish they would reassure us more.
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scottish1
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Makes me sad and angry to read this, the level of care that you have received is shocking,
Sadly it seems to be a common thread on this board in the last year, long waits and low levels of care.
In my opinion/suggestion is that you can begin to learn more about this condition and what it means, and understanding the scans and quantities mentioned you will be able to judge how serious or not it is.
The fact that you have years of data from these routine echos is a good start.
I would begin by writing to the hospital and getting all the information on these scans, and storing the information at home.
The echo will primarily give us all the dimensions of the heart, and the size of the chambers, wall thickness, valve function and blood flows, ejection fraction. (You can dm me for a rough non-medical opinion - I have a degree in Medical Physics, no one can actually give you medical advice on this website except the BHF staff).
This will be a great start to understanding what's really gone here.
I will be leaving soon for Asia , where I will be having a full suite of scans for less than a few hundred pounds, echo, CCTA, Cardiac MRI, as part of my ongoing personal monitoring.
The NHS is great for acute needs and the staff do their best, but for many chronic conditions the NHS has collapsed, thats why I suggest to people to take their condition in to their own hands, as much as they can.
Other suggestions would be to contact PALS at the hospital and I am wondering if an autistic charity might be able to assist in this situation.
Thank you for the reply. I am just so annoyed that he has had to wait for the MRI because I thought it would give us more information. I still can't understand why the technician said every scan gives us more reassurance when his EF is now said to be 44%. I just have a niggle about why she didn't see the changes.
Not medical advice, opinions and suggestions only.
I agree no one should have to wait so long for a heart MRI, we can only sort of guess what it might have been, like it was on the threshold and didn't want to alarm you.
So you have a record of all the EF's as the scans have been done?
If not maybe write to the hospital for the records of the scans.
He has been put onto valsartan and just started carvedilol and his bp has dropped to 100/60 , pulse 60 and they intend adding a morning dose of carvedinol in a few weeks time then another 2 more meds later in the year.
Hi sorry to hear what your son is going through. It sound horrendous.
21 yrs ago I was diagnosed with dilated cardiomyopathy (DCM) and heart failure. My EF was around 43%.
My diagnoses came about after I had a continuous attack of supra ventricular tachycardia (SVT). Xray showed an enlarged heart and echo showed my heart was struggling to work. I was then given an angiogram which confirmed DCM. I had an ablation to stop the SVT, and they noticed that was stopping my heart from pumping too. I’ve never had an MRI
Over the years I had several ablations and eventually had a pacemaker fitted and my AVnode ablated as SVT was coming out of there.
During this time I continued to work in a quite stressful job. Things were different then. I was only on blood pressure tablets which had diuretic in them. I did see a heart failure nurse once a year and a heart failure doctor once a year.
5 yrs ago my EF dropped to 10% and I was given a pacemaker defibrillator (CRT-D), and put on a cocktail of HF meds. My EF is now 23%.
I found even years ago I had to wait for things to move along, and I found it difficult. It wasn’t so much waiting for the tests, but it was more waiting to see the consultants and having procedures, like ablations, to get rid of my SVT. From what I’ve heard it’s even worse now.
I see a HF cardiologist 2 times a yr now and have my device checked 2 times also.
Thank Diane. I just wish they would stop referring to his father's condition. My son's gp letter said his ventricle was non dilated so god knows why they call it dilated cardiomyopathy. It just feels like they are not treating my son as an individual, more an extension of his father. My husband also has an ICD.
With DCM they do because sorry to say it can be genetic. I have it in my family both sides so they always take it as inherited. His father probably got it from another family member. Years ago people died early and didn’t even know they had these things. Some cancers are the same. It’s no one fault, it’s in the genes. My children were offered tests but they declined. I have grandchildren they might want tests, but they all seem healthy. I always struggled, even as a child.
Doctors are blasé about these things, they’ve seen and heard it all before, but they forget patients haven’t. There are many people on here with DCM. The good thing is they’ve studied it for years and know all about it. That doesn’t help him or you though, because you’re worrying about the future and you need reassurance which they can’t give, but I found they never give up on their patients once they get to know them. Some people have even had heart transplants. I’ve declined it, I’m in my 60s. He’s no where near that stage yet. Medications are doing a wonderful job these days.
Go on the BHF website and also pumping marvellous. Years ago I was given loads of books from both and I still have them. I’m hoping they still give them out.
I don't believe the books are sent out anymore. HF nurses send the PM literature to their patients these days or you can download them from their website.
Ok I got mine from the cardiologists and the nurse. Recently I discovered the pumping marvellous one. At the time I got them I read them then put them away.
Another thing you can always speak to BHF nurses if you have concerns. He is autistic and certain things being said could affect him differently from me or someone else.
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