Tina Williams posted a note for Lori that says:
Hi Lori, I just wanted to let you know I am thinking of you and your son. My three sons are the my reason for everything:) I actually passed the Mishawaka exit yesterday on my way to Lake Wawasee...one last chance to feel the sand in my toes and listen to the waves on the shore before my surgery this week - with Dr. Gerdisch in Indianapolis.
Nancy James posted a note for Lori that says:
Hope you find the answers for your son. I did a whole lot of research online once I knew I had a heart valve situation - especially in choosing my surgeon and my choice of hospital. His situation in different than mine, but us moms always do what we can to make it okay for our kids - I have a disabled daughter so I know the feelings that you have concerning your son and his health. You would do anything to help him and that's one of the reasons I'm anxious to get my surgery done with so I will be strong again and be able to help my daughter with her 5 children more than I have done these past few years. The strength and stamina I get from this surgery should go a long way to giving me energy to do more. God bless and I hope all goes well and you find the answers you need.
Ash Berryman posted a note for Lori that says:
Hi Lori, I have a mechanical valve from OHS 2014 and so far problem free, continuing to work as a commercial pilot and living a life on warfarin. The decision to go mechanical or tissue is very tricky, there is so much to consider. But it's comforting to know your son is going to be okay and can live a long pretty normal life. I was 45 when I had my operation and will / should not need another OHS. But life on warfarin means a lifestyle change. Contact sports should be avoided, some jobs that could result in knocks / bruises are not advisable, I've given up riding motorbikes and only ride bicycles on paths thus avoiding motor traffic. INR testing monthly and diet is no issue for me. I eat what I like but I try and maintain a constant Vitamin K intake in a 4 day cycle. I find large amounts of alcohol and long distance travel / holidays cause larger INR fluctuations. My INR is always 2.8-3.0 which is perfect for the St Judes valve. For OnX valves, the number could be different. My aviation medical is now complicated and employment with a new airline would be unlikely, but I knew this and happy to change career should my current employer find me to be unreliable. Long term use of warfarin also can have its issues (google that!) BUT knowing all this I went mechanical and I'm very happy with my choice. I had 6 months to look at the pros and cons and with my wife being a doctor I was well informed. ...But at 17 years old it's a whole new story, a tissue valve may be the better option. There are problems with these valves but technology is getting better rapidly. Your son will most likely be warfarin free for life on a tissue valve and future valve replacement is improving. I would have considered getting a tissue valve if I was 17 years old but it would be a 50/50 call. Depends on the individual. Tissue valves can last 1 to 20 years but in a young person more likely 10-12 years (ask your cardiologist about this and then get a 2nd and 3rd opinion!!). Tissues can last 15-20 years in older people as their activity levels normally decrease. But TAVR / TAVI technology is getting heaps better and so are the surgeons/cardiologists. Others reading this will have had different experiences and may disagree with me so please take all their comments on board and best of luck. Ash
I would prepare a file based on all existing tests and data, then circulate it to three general classes of surgeons. Pediatric heart surgeons are the first group. Next, ask the opinion of ADULT research specialists, as to your son's options 10-15 years out. Hopefully, OHS will be obsolete by then. Third, I would ask a RE-OP specialist if any of your contemplated procedures might be a barricade to future procedures.
I think you can cover all this under one roof at Cleveland Clinic.
As a parent, my heart goes out to you. Putting that aside, I'm having surgery nextd week after wrestling with a similar question, with a few differences: I'm 62, very active, have no symptoms, but have a bisuspid aortic valve and my aorta is enlarged and requires a "fix." I looked a decade ago at a Ross, but am going with a mechanical valve that's built into a "sleeve" that forms an aortic prosthesis. I don't want to do this surgery again, and don't want to out-live my valve. I think I will be able to handle the warafarin compliance. But it would be a different if were younger: in 18 months, when I was 15 to 16 years old, I grew nearly 10 inches taller, and it's one thing to out-grow pants and yet another thing to outgrow a valve. I can imagine someone arguing that a tissue valve would be better, because it would have to be replaced anyway - and a youngster could avoid the anticoagulants. Good luck ... James Lucas
I would DEFINATELY call Dr. John Brown at Indiana University Medical Center in Indianapolis. He specializes in pediatric heart surgery and is skilled in the Ross Procedure as well as the other valve procedures. I consulted with him last month regarding my upcoming Aortic Valve replacement. I was very impressed.