New to this forum and need your wisdom!

[lucy]

Hi everyone,

Thank goodness there is a forum like this out there! I am from Sydney Australia, 32 years old, married for 10 years with two lovely daughter aged 5 and 9.
I was born with right side Pulmonary Artresia with VSD in 1979. I was incredibly lucky that after many Blalock shunts, one failed Hancock valve implant in 1989 the second Hancocmyk implant in 1989 worked. So well in fact I have been lucky enough to have had my two daughters in the 23 years since it was implanted. After my first pregnancy my cardiologist described the level of deterioration of the implant as 2 out of 10. He replaces them when they hit a 7 or 8 out of 10. It held this way for 10 years. Yesterday after a routine checkup he reported it has now hit a 3 out of 10.

I know these things are designed to last 10 years or so and I've had a good run with 23 years but after so long with little to no change I am in shock. I had no symptoms of any change whatsoever. My cardiologist explained that it is either the natural ageing of the implant which will stabilise again or that it may now deteriorate quickly.

I have to admit I am scared. I see him in 9 months and I guess I won't know the outcome until then. I remember how terribly sick I was until the age of 10 and I don't know how I can go through that level of deterioration along with handling work (I'm a child Psychologist) and looking after my kids. I have not had to have surgery (other than a few angiograms) since 1989 and the thought of it coming up again seems overwhelming.
I exercise a lot and eat well but I know that this implant won't last forever. I recognise that I am possibly over reacting but have been close to tears all day long.

My husband and my Mum are supportive however my husband works long hours and Mum is also busy with work. I have never told my friends the full story about my history so can't really do it now after having been friends with them for 15 or so years.

I just really feel that I need words of wisdom from those who have been through something similar.

 

[Mentu]

Lucy, welcome to VR. I think most of us share a similar response to hearing that our hearts have changed and surgery is coming. The news seems to trigger a lot of anxiety about the future and for awhile leaves us feeling very vulnerable. This must be especially so for those of you who carry the memory of surgery as children. Still, that will pass. That will pass once the emotional impact begins to fade and the rational part of the mind kicks in. Perhaps the thing that may offer a lot of comfort is that heart surgery today has changed a lot in the past 30 years. It is safer than ever before and there are many new techniques available to the surgeon's skill set. A good place for you to start is reading Allison's newspaper article. Her user name is Allisoninoz and you can read her article at:

http://www.heraldsun.com.au/ipad/a-diary-of-open-heart-surgery/story-fn6bn9st-1226058541539

Take care, Lucy.

Larry

 

[sarahsunshine]

Lucy,

Welcome to VE. Sorry you have to come here.

Sorry you have so much fear over this. I can’t help you with your heart situation, but in terms of your friends, I wouldn’t worry about not being able to talk to them about it since yo haven’t for the past 15 years. If they are true friends, then they will accept the fact that it wasn’t something that was important in your life at the time, or something that you didn’t want to talk about. Now that it has come back up, they would likely be happy to support you.

I say this because one of my best friends had a very bad accident at the age of 16, which caused her a bunch of brain damage. She was told (or her parents were), that she would never recover her memory. From talking to her I the 20 years since then, I haven’t noticed any such changes. Finally, a couple years ago, I asked her about it (18 years after the accident). She said that it just wasn’t a big deal so she didn’t talk about it. She did however do what the doctors never said was possible and she has fully recovered. In fact, within a year she was fully recovered and was back at school (a year behind).

So, if your friends are true friends, then they should support you either way – whether you choose to tell them or not. I would feel rather odd, myself, if one of my good friends chose not to tell me about something as important as possible heart surgery. I would want to help out as much as I could, especially if they needed help taking care of the kids.

 

[Lynlw]

Hi Lucy, Welcome, my son (almost 24) also has most of his heart problems /surgeries on the pulmonary position, he had a few CHDs one of which was pulmonary atresia too. I'm not sure exactly what your doctor is describing, as far as 3 out of 10 deteriation or 7 out of 10? I've never heard that describing valves so cant even guess what it might relate to, so I cant help you with that, but I would think IF you were 2 and now 3 out of 10 and he operates at 7, it sounds like you could avoid surgery for quite a while. Do you have copies of your test results? If Not I would suggest getting them so you can track how things are going. We usually watch for the size of the valve or pulmonary conduit if you have one, as well as the size and pressures in the right ventricle (and even right atrium/tricuspid valve) and the difference of the pressure gradient before and after the valve/conduit to get an idea when an intervention is needed.

Also What you read about how long tissue valves "should last" is usually quite different for valves on the right side (pulmnary + tricuspid) than the left side, aorta and/or Mitral valves, FWIW most members here and so most discussions are usually about the Aortic and Mitral valves. Tissue valves tend to last MUCH longer on the right side, which is one of the reasons most doctors reccomend them for patients (usually who were born with their heart problems (Congenital Heart Defects or CHDs) no matter what their age is.

Also depending what the problem with your valve is and where the problem is when you do need intevention, it might be something they can hep in the cath labs, either ballooning or stenting open conduits to make them wider or even replacing the valve by cath, which is getting to be relatively common for pulmonary valve/conduit replacements in children or (usually young) adults who've already had their pulmonary valve replaced. If you want to read about that, do a search here and google Melody valves it is pretty exciting, They've been using them for about 10 years now, but were appoved in the US a couple years ago so you dont need to take part in a trial anyone who needs it can get them. when Justin had his surgery in 07 we hoped he would be a candidate, they were still in trials, but it turned out his vve was perfect he needed a section of conduit replaced, but chances are when this valve does need replaced it will be by cath,

Do you go to a Cardiologist that is a specialist in Adults with CHD or CHD?
There are a couple great orgs that are for CHD or Adults with CHD patients that usually quite a few members have Pulmonary stenosis/atresia as their main or part of the more complex CHDs This is an American group but have members from all over http://www.achaheart.org/resources/for-patients.aspx beside the forum there is alot of really good info

Ps I forgot to add chances are VERY high that since so many things have improved since 89, both doctors having alot more experience operating on people who,ve had multiple REDOs and the revovery, as well as the differnt treatments by cath, they would NOT make you wait to the point where you felt as bad as you did before your surgery when you were 10. Even tho Justin needed 4th and 5th surgeries and they knew he had some things going on that made his OHS even higher risk, they operated before he had many sypmtons, actually beside needing to take naps a little more often he didnt realize until after surgery that he was having some symtons, but even with them he was able to continue playing sports work, go to school etc. he just had even more energy postop. IF you start feeling bad and they dont reccomend surgery i would get 2nd opinions at least and not just accept feeling really bad.

 

[lucy]

Thanks everyone. You've given me so much to think about, research and follow up! I am so very behind the times in terms of my knowledge as it has been so long since I've had to think about the issue. I have started to feel less overwhelmed now.