Pulmonary Hypertension

[fairgo45]

Im a long time afib sufferer but recently had an echocardiogram that showed severe pulmonary hypertension.

My cardiologist is doing a RHC angiogram in a few weeks does anyone have this condition or can tell me anything about it?

Thanks Janet

[Hana2106]

hi, I just came across your post. How are you doing a few months later? I was diagnosed today with it plus tricuspid regurgitation. I’m in shock as I’ve been Googling. Do you have a lung condition and what tests have you had?

[Hana2106]

Thanks for your reply. I hope they get the drug for you if it is going to help. I’m worried about prognosis and don’t really know anything more until I have more tests. It’s the wait that’s the worst part.

Best wishes,

Hannah

[fairgo45]

keep in touch

[Deejay62]

Hi fairgo45 I hope you’re well. I’ve recently noticed i have pulmonary hypertension so I assume it’s new. One report says moderate and another says severe at 60mmHg. I assume because of the stage of heart failure I’m in there’s nothing they can do for me. Hopefully they can sort you out and improve things for you.

[fairgo45 in reply to Deejay62]

Hi Deejay

I'm seeing my cardiologist on the 20th March .

After the right and left heart catheter about 6 weeks ago it confirmed moderate PAH causing stiff left atrial syndrome making the right side of the heart having to work harder therefore causing potential heart failure , it is treatable with a drug that is usually given to treat diabetes.

I will know more when I see him as the drug is not funded in new zealand and he is trying to get it for me.

What I found interesting is

stiff left atrial syndrome can occur after extensive catheter ablation and mini maze procedure, a unique constellation characterized by high pulmonary artery and pulmonary artery wedge pressures due to left atrial dysfunction .

I never knew there was this risk with ablations and I've had three we should be told that it's a possible side affect.

There's no reason you can't be given the same treatment for heart failure caused by PAH

I'll let you know what happens.

[Deejay62 in reply to fairgo45]

hi fairgo45. I’ve had heart failure avery long time caused by dilated cardiomyopathy. I’m in the UK and I wonder if the drug you’re talking about is called dapagliflozin because I’m already on that drug and it actually improved my heart function from 15% to 23, but I have a bad chest infection at present so I don’t know if it’s still the same. My heart damage is the left side also and I have had many ablations the last was AV node ablation. Please let me know how you get on.

[fairgo45 in reply to Deejay62]

Sorry for the long wait to reply.Seems like we're taking the same drug I'm on 10 mg of dapagliflozin

I've been diognosed with left heart Diastolic dysfunction with preserved EF of 50

This occurs when the lower left heart chambers don't relax properly during diastole. As a result, you may experience pressure buildup in the heart so it's slow to empty.

I hope to tolerate this new drug it has a possible few not nice side effects but if it works it can improve things as you have demonstrated .

What's the follow up with your cardiologist?

[Deejay62 in reply to fairgo45]

They haven’t even discussed the pulmonary hypertension, and I won’t see them until October, if I last that long. I have read up about it via some booklets I received. Because the left side of my heart is failing badly EF 23%, but recently I became ill and had a chest infection so possibly it’s reduced again, and I’m struggling badly again to walk and sleep. But as far as I read, the same meds I’m on applies to the pulmonary hypertension.

[fairgo45 in reply to Deejay62]

You shouldn't have to wait till October can you you ask for an appointment sooner?This drug we're on should improve the EF it's supposed to be a state of the art drug that improves our Distolic disfunction you may need to have the dose increased.

Get an appointment be a sqeaky wheel to get things done.

I hope you feel better soon

[Deejay62 in reply to fairgo45]

Oh sorry, I had Echo done and blood test which showed my EF had improved from 15% to 23% since I began taking dapagliflozin. My Gp surgery as been seeing me every 3 months to check my blood pressure and weight and to find out how I’ve been feeling, and the Gp pharmacist has been doing annual reviews on my meds and keeping an eye on my INR for warfarin. Also they started an AF clinic but I couldn’t see the point of it as I still have 6 monthly device checks and they usually refer any changes to the cardiologist, who as told me that they would see me earlier if there’s a problem. They are connected in the same building. I have warfarin blood tests every other month because of my kidney function. So I feel I’m looked after quite well.

[fairgo45 in reply to Deejay62]

Sounds like your being looked after well by your health team I wonder why your struggling now .I'm new to this drug dapagliflozin have you had any side effects from it?

[Deejay62 in reply to fairgo45]

Not what I know of, and why I say that is because I take bisoprolol, Spironolactone, Bumetanide, dapagliflozin and Entresto. I also take Warfarin. Since taking dapa I haven’t felt any worse, maybe better. I’m struggling because my heart failure began in 2003 that’s when they discovered I had dilated cardiomyopathy and arrhythmias which was causing my heart to fail and as soon as they would get rid of the electricity going off in one area then they would spring up elsewhere, so in the end I had a CRT device fitted and I had an AV node ablation because it began to come out of there. I knew my heart would get worse but I’m surprised I’m still alive. I have continuous Atrial Fibrillation now also.

[fairgo45]

That's interesting isn't it that the ablations themselves may cause the problems we have.Thanks for letting me know the drug your taking I'll tell you what happens when I see my cardiologist.

I see your having a lot of snow in the UK depending which part your in so keep warm and dont throw too many snowballs

[Deejay62 in reply to fairgo45]

I’m I London it’s not been too bad here this year. Although some parts have actually had snow, but it’s been very cold after a very hot summer. Thank you I am keeping warm