He has Pulmonary Valve Stenosis as well as Wolffe-Parkinson-White Syndrome (WPW), I

Hi

    To the woman whose son Ryan will be having surgery for PVS. I am on this group because I THINK I have Noonans. I havent been officially diagnosed but I have enough of the same symptoms to think that I have it. I was also born with PVS plus with a hole in the heart. The hole closed before I was 5. I had surgery when I was 18 for the PVS. It REALLY helped me physically ! Before then it took me the entire gym period to run 4 laps around the track and then another full class period to really recover from that. After surgery I went on a hike of several miles and came in last (of course) but within 10 minutes of the last ones in the group. Within  2-3 years I could walk 3 miles an hour . That was over 25 years ago and I am still in good health.  I think the most difficult thing in growing up was the fact that there was no pain  and no physical affects. I didnt FEEL sick so it was hard to realize just how "ill" I was. Marathoners talk about "hitting the wall " and keeping on going. No such thing could happen to me - I could run and then my body would stop long before I was ready to stop mentally. That might be a good way to explain the need for surgery to your son if he wonders why he needs it. Another way that it affected me was that in any activity I was always looking for ways to conserve my body energy. I learned how to budget long before I knew what the word meant. I would determine how I felt and then look at the activity and decide 'Is it worth doing or will it mean missing out on what comes next?"   I learned early when I could "pour it on" and when I couldnt. You could probably explain to your son that having the surgery would mean that he would unlimited energy to use all the time. I realize there are risks but the benefits to having surgery now - to me would make it worthwhile. 

  

   I am not sure what type of dry skin your son has. My hands would get chapped and bleeding during the winter months. Now I use lotion with aloe vera in it and it seems to work.

                                                                     Shirley