My husband was diagnosed with a congenital heart condition when he was 49 years old! He was diagnosed with Coarctation of the Aorta and underwent stenting to correct this. He has residual issues with his heart I guess due to living with undiagnosed problem for 49 years!
He is also a cancer patient and is receiving treatment for that too.
He suffers greatly with breathlessness and coughing even with low exertion and everyone we ever see or speak to in his cardiology team claim that his breathlessness is not cardiac related. However when we research the things listed as his diagnosis or findings from his echos we read that several of these little faults can cause breathlessness.
I am exhausted with trying to get them to take us seriously about how his breathlessness and coughing are impacting his daily life. His life has changed so much in the last couple of years.
He's had a few lung function tests and scans and these have been inconclusive and the lung specialist we spoke to claimed that his breathlessness was not lung related. His oncologist also states that although he has cancer nodules on his lungs they are far too small to be causing breathing issues.
My question is does anyone have any quantifiable and evidence based knowledge that any one of or any sum of the following conditions are most likely to be the cause of his breathlessness and coughing?
Left ventricular hypertrabeculations and thickening of wall apically
Low normal left ventricular systolic function reduced longitudinally
Mildly hypokinetic basal, septal and anterior wall regions
Moderately dilated left atrium
Mild regurgitation to mitral valve
Bicuspid Aortic Valve with raphe fusion and mild aortic regurgitation
Mild regurgitation to pulmonic valve
Left ventricular ejection fraction -53.5% and GLS - 18.7%
At this stage I guess I'm just seeking more information and support and reassurance that my instincts aren't wrong and that his breathlessness and coughing is cardiac related. Feel like I am banging my head on a brick wall.
Thank you in advance.
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Another suggestion is are you aware of the Sommerville Foundation? It is a support group for adults with congential heart problems they maybe able to help you further.
Thank you interestingly enough that is the precise hospital he is registered too, yet they haven’t referred him to a Cardio-oncology specialist! Thank you as I will now ask them if we can be referred to that specialist area.
Ok then- the ACHD team at Liverpool are very likely to have already sought the opinion at an MDT but you can always ask to see the advice. I believe the consultant leading the Cardio-Oncology Clinic is Dr Rebecca Dobson. - do not quote me to that as I am an ACHD Patient in Birmingham.
I am going to second Milkfairys' suggestion that you should ask for a second opinion from a Cardio-Oncology Specialist. I would also check out the list of congenital heart disease specialist centres (its on the somerville foundation link- milk fairy sent) and make sure your cardiologist is from one of those centres (or linked to those centres). - all congenital heart patients should be managed (not necessarily seen) by these centres.
FYI: Even if your centre is not listed on the Somervillefoundation Website that does not mean its inappropriate. Congenital Heart Disease Care is delivered in different levelled centres to make sure outpatients is done as close to the patients home as possible with the patient only travelling for intervention. So if the hospital your husband is at is not listed and you do not know which level 1 centre they are attached to ring them and ask. If they try to fob you off- point out all congenital patients care should be managed (not necessarily delivered- can be delivered by other people ) by the Level 1 Specialist Centre and you want to see the specialist centres advice.
From what you have written and what I know, although I am not a medical professional, some of those conditions can be quite problematic with symptoms. However, I can equally see where the cardiologist is coming from.In the diagnosis list you are repeatedly saying 'moderate' , 'mild' or 'low normal' - the treatments for these conditions is most certainly not moderate and for some of them would could require repeat interventions. For the ones I know what they are (7/8) they are normally very stable conditions that can really wait until any cancer treatment is over. Therefore I can see the cardiologist, as they did with me, waiting (for the best time for him). Breathlessness can be associated with valve insufficiency but studies have shown reported breathlessness correlates badly with severity of vavle insufficiency.
I know how infuriating your position is , I been in your position but with tiredness not breathlessness. I felt my symptoms were cardiac and was told by my cardiologist they were not (ironically first time I met the surgeon he admitted otherwise). Three years out from Cardiac Surgery I can say without a hazard of a doubt that the symptoms were at least part cardiac. I had so much more energy after surgery (they were not completely- some of it was GI). However, I have no regret in being made to wait until it was necessary. I was 20 at the time of surgery and the inserted Pulmonary Valve will wear out repeatedly- so sooner intervention would have meant more surgeries in my life.
Trust me- when the time is right for your husband intervention for the congenital heart disease will happen. It is unlikely you reports of breathlessness are falling on deaf ears but it may not be time yet. If you do not trust the opinion you have received- get a second opinion either from the Specialist Level 1 centre overseeing your husbands care or form an alternative level 1 centre to reassure yourself. Also seek the opinion of a Cardio-Oncology Specialist.
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