New, hoping for some advice - Right ventricular dilation with impaired function

[Liza101]

Hi guys, hoping to get some advice or understanding of a letter my father has received.

Basically he started with chest pains some 2yrs ago and has found over this time his ability to walk and do things reduced so dramatically. He gets breathless, dizzy, and needs to stop and rest after walking only a few metres. For someone that was so active it’s hit him hard and to be honest is so aweful and gutting to see, so upsetting. For this period of time many consultants couldn’t provide a diagnosis, however his gp who has been great got him to go for an echo scan. This provided some results which sound scary, and dr google was unable to provide a simplified answer, and having to wait til next year for an appointment with a cardiologist. The letter stated

Right ventricular dilation with impaired function, estimated severe pulmonary hypertension with associated severe tricuspid regurgitation Pleural effusion

Is anyone able to provide any information on what this means??, we would be grateful of any help. Thank you and so sorry for the long post but I don’t know where else to try and gain some information to give to him, my parents ask and I can’t really tell them much. Kind regards Lisa

[gal4God]

I have a different heart condition but I make sure I do as much as i can and don’t stay in home close to surgery and the minute I’m out of hospital i make sure I get out of the house.

[Inamoment]

Sounds like me. I have scleroderma related pah although I am not clear what the relation is. I think he should be referred to one of the specialist pah centres. Your consultant should have done this, a gp won't have a clue. All my medication is prescribed by the Brompton, they are ones who look after me. Insist this is done, doing an echo doesn't cut it.

[Liza101 in reply to Inamoment]

Thanks for your response and advice. I will certainly speak to the consultant ref this when they meet in January.

Could I ask if things have improved for you following medication prescribed to u? Are you more mobile/able to do more as a result of taking medication? It’s his hope that he could get back to do doing some basic things without the struggles he faces with breathlessness, dizziness, inability to walk far .

Thanks

Sorry to hear of ur problems

[Inamoment in reply to Liza101]

I'm OK, test results are stable. They are bad but stable! I have half a dozen or so different pills, i am sure they are working. I also have oxygen whilst walking which helps a lot. My basic problem is clots in my lungs which won't shift so my heart struggles to pump and I am low on oxygen. I can't do anything about it so I just put up with it.

[Liza101 in reply to Inamoment]

Hi, finally getting somewhere, the specialist cardiologist has had a good look and believes it’s primary pulmonary hypertension. He’s now in the process of being referred to the Brompton, just awaiting letters.

How was your experience of the Brompton? Did the meds u mention they prescribed help u a lot?

Thanks

[Inamoment]

What medication does your father have?

[Liza101 in reply to Inamoment]

I will get the details and let you know. I know within the last week or so they have cut a lot of the medication (gp that is), get the impression they want the cardiologist when he sees him to make some new medication recommendations.

I’m not sure yet if the underlying issue has been exactly identified, but from what the echo showed o believe it certainly seems they have a v good idea. We are pleased from one point of view that no one could find the issue over the last 1.5yrs, just hope something can be done to help him a lot more get some of his old self back as he would say.

Walking he can cope with with regular rests, any inclined walking, such as stairs or slopes then he finds them v v rough and needs several rest periods

[Heartlady1]

Hi Lisa.. .. sorry to hear of your dad's problems and one place that's always helped me with the jargon are the nurses at BHF. you can call them between 9 and 5 in the week... and they are very helpful and can talk through potential tests and potential medication.

I have a different heart issue left ventrical dilation which has left me also with impaired function. I have had this condition for over 20 years... so there is good quality of life after diagnosis.

I try to stay clear of steep climbs ( I always say I don't do hills) although walking on the flat is much easier and exercise is good for the heart.

I hope you get your appt through quickly and please have a chat with the fabulous BHF nurses in the interim... and all the best going forwards x