How to determine when to have a PVR?

[Fiona]

Sorry - this is long.

My sister was born in the UK 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 could not she was, unhelpfully, told 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 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 valve replacements and what determines when she should have a pvr?
I have seen some of the threads talking about a choice of which valve to have. This is not something which has been discussed with her – I don’t know that we are so hot on choice in the UK. Does anyone have any experience of patients having a choice of valves in the UK on the NHS?
Thanks in advance.
Fiona

 

[Lynlw]

HI Sorry to hear about your sister being surprised to hear she needs ongoing check up for something she thought was "fixed" unfortunately it is pretty common, since until recently doctors didnt know that things could get worse so everyone with CHDs especially those that needed any intervention as a child will need life long check ups, many people like your sster wre lost ot the system and were shocked to hear their still had problems.
. "When" you need to have a pulmonary valve replaced depends on alot of things, but FWIW the pulmonary valve is the one that does much better with regurgittion, actually many people dont have a pulm valve or had it removed and not replaced as a child, so alot depends on how the right ventricle is doing etc As for percutaneous treatment there could be a few options, even having another valvupasty, but right now to have a pulm valve replaced by cath, im pretty sure one of the criteria is you already need to have a tissue valved that was replaced and not a native valve. Altho they are working on manythings.
IF she isn't being seen by a cardiologist that specializes in Adults with Congenital Heart defects? If not she really should.

There is a great org in the UK for Adults with CHD http://www.guch.org.uk/ that should be able to help your questions or reccoemnd docotrs who will answer your sisters questions and not blow her off like her cardiologist seemed to do

 

[Sarah_Louise]

Hey Fiona,
Welcome to the boards,
I'm from the UK and currently awating a pulmonary valve replacements, I'm 18yr old and was born with a complex CHD (see signature) therefore already had 4 OHS & 1 op done via cath, as well as suffered other complications resulting in embolectomies & strokes, therefore i am a candidate for a pericutaneous pulmonary valve replacement BUT this opperation isn't "available" on the NHS, my cardiologist is having to apply to the government for a special funding for me to have the op, but there is a set criteria that needs to be met, and i'm not meeting one of them- i'm too young!!!
Here in the UK they do give you a choice, and your sisters surgeon will advise her on which valve is best for her situation,
I've gone for a good few years living with my pumonary valve being i moderate stenoisis and only now as it became severe that i need something done to it,
If i can help just shout
Thinking of you and your sister
Love Sarah xxx

 

[Lynlw]

Hey Fiona,
Welcome to the boards,
I'm from the UK and currently awating a pulmonary valve replacements, I'm 18yr old and was born with a complex CHD (see signature) therefore already had 4 OHS & 1 op done via cath, as well as suffered other complications resulting in embolectomies & strokes, therefore i am a candidate for a pericutaneous pulmonary valve replacement BUT this opperation isn't "available" on the NHS, my cardiologist is having to apply to the government for a special funding for me to have the op, but there is a set criteria that needs to be met, and i'm not meeting one of them- i'm too young!!!
Here in the UK they do give you a choice, and your sisters surgeon will advise her on which valve is best for her situation,
I've gone for a good few years living with my pumonary valve being i moderate stenoisis and only now as it became severe that i need something done to it,
If i can help just shout
Thinking of you and your sister
Love Sarah xxx

that is so strange in the uk you're having problems because you are too young for the Melody valve, since it was mainly made for children and young adults I think the normal cut off as far a youngest for the trials, is 5 years old, as long as your valve is large enough to fits the smallest Melody valve you can have it done here, so I thought it was the same everywhere else until you wrote about why you had to wait to get approval a couple weeks ago. I think. Most of the people who got the earliest ones in the uk were young children and teens, it's a shame you need special approval now

 

[Sarah_Louise]

that is so strange in the uk you're having problems because you are too young for the Melody valve, since it was mainly made for children and young adults I think the normal cut off is 5 years old, as long as your valve is large enough to fits the smallest Melody valve you can have it done here, so I thought it was the same everywhere else until you wrote about why you had to wait to get approval a couple weeks ago. I think. Most of the people who got the earliest ones in the uk were young children and teens, it's a shame you need special approval now

See my CLN said they where specifically made for old people who where too frail to have OHS? therefore i was in minority?
Maybe i'm getting something different to the melody valve? Got an appointment with my cardiologist next month, so got a lot of questions for him,
Love Sarah xxx

 

[Lynlw]

See my CLN said they where specifically made for old people who where too frail to have OHS? therefore i was in minority?
Maybe i'm getting something different to the melody valve? Got an appointment with my cardiologist next month, so got a lot of questions for him,
Love Sarah xxx

Tha's odd, the valve that are made for older high risk patients are the Aortic ones (sapien , corevalve etc)
Pulmonary percutaneous valves are made for children, they actually were the first percutaneous valves made since the valve pateints that usually require the most surgeries are kids with pulmonary valves replaced in hopes of cutting down on the number of surgery they would need thru out life. The main one is the melody valve they started using it in the UK in children about 10 years ago, I know there are some places doing trials using the Sapien valve in the pulmonary postion, but I'd be surpised if they would want to use that on you since they have been using the melody valve so long with great results. I think I even read of babies younger than 1 getting the melody valve in the UK. SOME adults do have their pulmonary valve replaced, but for the most part they are peeople who grew up having pulmonary valve replacements

Let us know what your Cardiologist says next month.

 

[Debbrn]

Welcome Fiona,

I am 46 years old and was born with Tetralogy of Fallot. I had my last PVR almost 2 years ago. I was not a candidate for the percutaneous valve because that wanted to repair my tricuspid valve. This was my 4th surgery. I have a Carpentier Edwards porcine bioprosthetic valve. When to replace the pulmonary valve is still very controversial. It depends on the change in size of the right ventricle, EEG, arrythmias, and exercise tolerance. I had my pulmonary valve removed when they did my "repair" at age 6. At the age of 25 I had a cadavar valve placed in the pulmonary position. I was not symptomatic at the time, but the right ventricle was enlarged and my tricuspid valve was leaking. That lasted another 19 years and I had my last pulmonary valve placed when I was 44. By this time I had decrease exercise tolerance and had trouble getting through my shift as a nurse. For me recover was pretty easy. Pain was not to bad. I took 3 months off from work because I am a pediatric ortho/rehab nurse. I was walking 12,000 steps/day 10 days after surgery. I feel so much better now. Thursday I played with my grandkids on a trampoline without getting out of breath. I was able to jump longer and higher than before surgery. I had so much fun.

Lyn is correct that percutaneous pulmonary valve replacement is generally performed on younger patients.

Debbie