PVR recommended in 1-2 years but no symptoms -

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PVR recommended in 1-2 years but no symptoms -

Postby Fiona » Thu Feb 23, 2012 9:25 pm

Sorry - this is long.

My sister was born in 1965 with pulmonary stenosis. Her pulmonary valve was widened in 1976 and she was discharged by St Bartholomew's hospital about 10 years later. When I was pregnant 2 years ago I was scanned to check if my baby's heart was ok. The cardiac doctor who did it was surprised that my sister had been discharged and recommended that she get seen by the Brompton. My sister - who is a nurse, medical people are always the worst at looking after themselves aren't they? - was not happy at the prospect of going back to a hospital and being examined all over again. In her mind she had put all of that behind her. 2 years ago she was seen by a professor who said she might need a replacement valve but that would probably be when she was 80 so she went away surprised but ok that it wouldn't happen until she was that age. At her appointment the following year she was told that she would probably need to have a pulmonary valve replacement in 5 years time and last week she was told that it would probably be in the next year or two. She has no obvious symptoms but has moderate to severe pulmonary regurgitation. She was told it might be possible to have it done percutaneously but when she asked what would determine if she could or not she was, unhelpfully, that she wouldn't understand the answer.

My sister is reluctant to have the operation at all because it is still a shock to her to be back in the system when she was thought she had left all the prodding and treatment behind her. Also, she knows that the new valve may only last 10 years so that could possibly mean several operations so she feels it would be better to wait a while to minimise the number of operations she has. Does anyone have any experience of pulmonary replacement valves? Thanks in advance.

Fiona
Fiona
 
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Joined: Thu Feb 23, 2012 9:09 pm

PVR recommended in 1-2 years. no symptoms

Postby Forlyd » Fri Feb 24, 2012 2:48 pm

Hello Fiona,
Have sent you a pm.
Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Forlyd
 
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Location: Newcastle-upon-Tyne

Postby bethfit » Tue Feb 28, 2012 6:32 pm

Hello Fiona,
I am 39, so a few years younger than your sister. Like her, I was born with Pulmonary stenosis and had my initial corrective surgery (valve repair and ASD closure) via open heart aged 9. I discharged myself from follow up aged 19, having been told that the likelihood of future probelms was small, and didn't see a consultant again for over 11 years. I remained relatively symptom free, other than some arrythmia issues and increasing breathlessness, all of which I just put down to getting older.

When I did finally see GUCH consultant, it turned out that my pulmonary valve was severely leaking and my right ventricle was enormous as it struggled to compensate. I had valve replacement surgery within a year. It is my understanding that unless you have had one open heart valve replacement, you do not have the correct 'foundation' for a percutaneous replacement via catheter, although I may be wrong as the technology does evolve.

I should note that I was pretty much unaware of how much my health had been impaired until I recovered from the surgery and understood how much better I then felt. The slow decline had been almost unnoticable to me. It is true that the lifespan of replacement valves can be short, but I have heard of cases where they are still functioning well 20 years later. The prospect of surgery is always scary, but in my mind so is the possibility of delaying it so long that the damage to the heart is permanent. A correctly timed valve replacement means that the heart should recover and preserve its functionality, which of course has a high impact of quality of life.

Hope that helps. Ask away if you have any questions, and I am sure that somebody will answer.

Beth
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PVR

Postby Fiona » Tue Feb 28, 2012 8:44 pm

Hi Beth

Thanks so much for your reply. It's so good to hear that your operation went well and had such a positive impact upon your life. I have previously tried to suggest that my sister might also feel better after an operation but she is adamant that there is nothing currently wrong with her so it will be really useful to pass on what you say to her.

It's interesting to hear what you say about the possibility of having a percutaneous procedure. You would have thought that the doctor who saw her would know so maybe things have changed if she didn't rule it out - or maybe she just didn't know and it was for that reason that she would not go into details with my sister.

All the best and thanks again.

Fiona
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Joined: Thu Feb 23, 2012 9:09 pm


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