ASD - PULMONARY HYPERTENSION

[SinbadCFC]

Just over a year ago i had OHS to/ close an atrial septal defect. On of the main reasons for the closure was to stop or reverse the development of Pulmonary Hypertension. I have and am still undergoing various tests (including a Right Heart Catheter, Echo, Lung Ventilaion and Profusion Test and who knows what else tp see if the ASD has had the desired result.

So far it looks like the Pulmonary Hypertension has not improve and I have be prescribed Tadalafil to help the blood flow to my lungs.

I am posting this to see if anyone else has had a similar experience and what may I expect down the line.

Any thoughts would be very much appreciated

[LadyZ13]

Hey Sinbad, I think I follow your posts as I'm a fellow adult who was discovered to have an ASD. My hole was large and atrial dilation severe. The hole was closed 3 months ago with one of the Guy's surgeons at London Bridge hospital.

AFAIK I don't have issues with Pulmonary Hypertension so can't be much help there. What I would suggest is connecting to folks on the Somerville Foundation's FB page if you can, as they're specically a congential community and have more ASD patients than probably are active on this forum. You may well be on there already so apologies if this is telling you to suck eggs.

Hope you get some answers soon and that things improve for you. I'm sure having the hole closed is doing us both more good than leaving it open, even if it hasn't yet sorted out every issue.

[SinbadCFC in reply to LadyZ13]

Hi Zoe

Thanks for the reply. Although our ASD's were about the same size, I lived with it for 68 years before closure so its had chance to cause other issues. Hopefully, this is not the case with your

I'm sure you're right that having the hole closed was a good thing. I did know about the Pulmonary Hypertension before closure but hoped it might improve after closure. It would seem that the pressures are roughly the same, so the specialist team have decided to medicate me while they carry out more tests.

I've been reading your blog, some "journey" you've had. I hope that its behind you now.

Thanks you the Heads up about the Somerville Foundation, I will certainly look in it.

All the best for ehe future, I hope the AFib issue has been resolved

Nick

[LadyZ13 in reply to SinbadCFC]

Hi Nick, apologies for the delay, I meant to reply to you days ago!I'm interested to hear our ASDs were the same size as I think my consultants and the surgeon put a lot of fear into me about the size, I assumed it was freakishly uncommon!

I'm sorry yours had time to provoke this issue and I really hope it can be managed so that it doesn't cause you any troubles. There seems to be little information out there on medium and long term outcomes of congential heart corrections, it seems very individual, so all we can really go on are other's stories.

Keep us posted and take care.

Zoë

[SinbadCFC in reply to LadyZ13]

Hi Zoe. My ASD was 30mm at the widest point. If I recall my consultant referred to it as a moderate hole. I did ask what was considered large and he said he had seen ASD's at 50mm. I remember thinking 50mm. can't be much more heart left lol. We had the same surgeon and he didn't seem to bothered by the size.

There is very little information about Pulmonary Hypertension that's why I decided to post about my condition and the fact that it has been linked to congenital heart disease. Hopefully my case will help others.

I have a lung profusion test this week to rule out any pulmonary embolisms and I will continue to post updates.

all the best

Nick

[Deejay62]

Hi. I discovered this year I have sever pulmonary hypertension. It was never discussed, I saw it in a report after a cardiac visit. I have heart failure.

In October I will see my cardiologist and I will ask about it. I did send off to pha uk for some leaflets on it. I discovered due to my EF being so low it doesn’t look good for me having this too. They mentioned diuretics which I’m already taking.

After my appointment hopefully I will know more. My breathing is awful when I move around so I don’t often feel like going out but I don’t know if it’s that or the heart failure causing it or both together.

Not many people here have mentioned pulmonary hypertension or even on the lung group. I don’t think I have ASD, but who knows.

[Hometeam2016 in reply to Deejay62]

Hiya deejay can I ask please what was your symptoms of ph also do you have any lung diseases xx

[Deejay62 in reply to Hometeam2016]

Hi I don’t know what the symptoms are. I have heart failure with a heart function of 23%. I had an echocardiogram in January and it mentioned it. Previous echo over the years as mentioned it but this time the pressure as gone up a lot. They had put me down for a heart transplant but I’ve declined it. I tend to struggle a lot when I walk trying to breath. Inclines or hills are impossible, my heart beats excessively so I have to keep stopping to get my breath back. It’s hard work. It could be heart failure, that or both.

[Hometeam2016 in reply to Deejay62]

So sorry thank I for your reply, can’t they reduce the pressure

[Deejay62 in reply to Hometeam2016]

I don’t know yet I will find out next month.

[SinbadCFC in reply to Hometeam2016]

Hi Hometeam, In answer to your question the symptoms include, breathlessness, swollen ankles and lower legs, tiredness and chest pain. The definitive test used in diagnosis is to have a right heart catheter to measure the pressures within the heart. Hope this helps

[Hometeam2016 in reply to SinbadCFC]

Thank you my doc said I could have this but the only thing I have is a cough and oxygen level dropping but then goes up withiin minutes

[SinbadCFC in reply to Deejay62]

Hi Deejay. Thanks of the reply.

No doubt it was a shock to discover the Pulmonary Hypertension. Have/are you being referred to one of the Specialist centres. I'm with the Royal Free who have been excellent .

My heart was/is healthy apart from the ASD but I suppose after living with it for 68 years it ws bound to cause other issues. I think Imy condition is classed as mild,with a Pulmonary Artery Pressure of 32 but like you I needed to discuss in more detail with my consultant.

Fortunately, my breathing is not too bad . I have more tests next week to rule out any Pulmonary Embolisms. But for now they have decided to put me on Tadalafil to help relax the artery's.

When I find you a bit more Ill post on here just in case you find it useful.

All the best for the future.

Nick

[Deejay62 in reply to SinbadCFC]

I have to discuss it with them next month. Mine is 68. Until I speak to them next month I don’t know anything. I have dilated cardiomyopathy which for me is progressive because I’m in heart failure so this added to it will make the right side of my heart struggle. I’ve declined transplant so I’m just waiting for the end to come.

Okay thanks for that. Apart from what I have read, there isn’t many on here with it, but you’ve explained a bit. I will see if they mention tadalafil when I speak to them next month.

[SuperFluff]

Hello SinbadCFC. Unfortunately I can't answer your question but just wanted to say that İ too have pulmonary hypertension, as a complication of having mitral valve regurgitation. Over three years ago İ was diagnosed with a scarred and leaking mitral valve as a result of a childhood illness that İ didn't know that İ'd had (rheumatic fever)! At diagnosis it was more a mild than moderate leak. In May however I was told it was now a moderate leak but that İ had pulmonary hypertension (33Hg) and a mildly leaking tricuspid valve! All the cardiologist said was that we don't worry about it till it gets to 50! Obviously it unnerved me when I read about it and I am concerned now! Even when my valve is replaced, it may not fix it but should reduce it. İ am currently improving my posture and my breathing skills (!) with the help of a physio. İ currently don't have any breathing issues - never smoked, blood pressure always good - but finding this helpful as it is also improving the flexibility of my ribcage. Plus, the charity pha UK mentioned by a previous poster have a helpline that İ contacted. Anyway, fingers crossed they manage to fix your PH. Did read new treatments coming along all the time. Best wishes.

[SinbadCFC in reply to SuperFluff]

Hi SuperFluff Thanks for the reply. It seems that having Pulmonary hypertension (PH) seems to be as result of another defect in the heart. At least we are below the 50 mentioned by your cardiologist. It is unnerving to read about PH but I should resist looking at Dr Google lol. Ill have to look into the breathing skills.

I wish you well for the future