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derekzmom

Member
Joined
Nov 7, 2012
Messages
9
Location
Powell River, BC, Canada
My son Derek (14) will be having the Ross Procedure on Dec 11. He was born with congenital heart disease and has already had 4 heart surgeries, 3 being open heart. We have known for a long time that he has a BAV and would need it replaced eventually, the cardiologist wanting to wait until he was about 6, but my boy does things his own way :) He also has sub aortic stenosis, which has grown back for the 3rd time, he had it resected once, then the Konno, and it sneakily keeps reappearing, so he will have it resected once again when he has the Ross unless they have to do a bailout and put in a mechanical due to the placement of one of his coronaries. The one on the left is right at the top of the valve instead of being on the side. Always an interesting one, my boy is...

Needless to say Im freaking out. There was concern about the amount of scar tissue that he had last time, and that his heart was already fused to his sternum. This time, Im sure it will be worse. They are telling us 7 days in hospital, 10 - 14 days recovery at home and then back to school for half days for a week and then he should be ok to go back full time. As long as everything goes well, of course. Does this sound reasonable to anyone who has had the Ross?

I know that a mechanical valve could possibly be a better option with replacement happening later vs the pulmonary conduit being sooner, but he he is way too over handled medically (he also has Down Syndrome, had leukemia when he was 2.5, and numerous other operations/medical procedures over the years) and Id like to give him a chance at a "normal" life without having to worry about anticoags, INR's,etc...

Looking for some imput about the Ross, the surgery and the recovery time afterwards.

Allison
 
I should also mention that we have not met with the surgeon yet, and wont until pre-op on Dec 10. I have a list of questions to ask him but is there anything that you can think of that I should ask him. I have spoken with our cardiologist numerous times about this and this is the surgeon that he recommends (we are in Canada and in our province there are 2 cardiothorasic surgeons, we dont have the option of going out of province or country to have this done). I totally respect his recommendation, he has known my son since birthand knows him inside and out. Bottom line is he needs to have his aortic valve replaced and the surgeon that has been recommended to us is, from what I understand, the go-to guy for such a procedure.
 
hi Allison!!! Wow Derek is 14? As always it sounds like you are on top of things and making all the right choices for Derek. I can't help with much, but IF it helps remember that Justin's heart was fused to his sternum his last 2 OHS so I know the thoughts that must be going thru your head, but I focused on how good it was for the surgeon to know this before the surgery and make plans and back up plans, and not be surprised when they start the surgery. Yes it makes surgery longer since they have ti be so careful opening them but these surgeons are the best and I told myself to remember they work on teeny tiny hearts day in and out so are very used to cutting very delicately. Hope that helps.
Altho we were looking for a new surgeon before his 4th surgery and most of my questions were about the fact we knew Justin's heart was fused to his sternum and what was plan A B and c. I know one of the things we dicsussed was putting him on bypass before they opened the chest so during preop they check his femoral and arteries /veins in his neck to see what would be ok if needed. Justin asked IF they needed to he would prefer the scar be in the groin area and not another one easy to see. They didnt need to use it the 4th surgery but did the 5th.
So they are thinking half day back to school about 3 weeks post op if my math is right? It might take a little longer, but unless there is a problem, I think Justin went back to school about a month post op after his surgery that was during the school year.
Good to see you, sorry for the reason
 
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I should also mention that we have not met with the surgeon yet, and wont until pre-op on Dec 10. I have a list of questions to ask him but is there anything that you can think of that I should ask him. I have spoken with our cardiologist numerous times about this and this is the surgeon that he recommends (we are in Canada and in our province there are 2 cardiothorasic surgeons, we dont have the option of going out of province or country to have this done). I totally respect his recommendation, he has known my son since birthand knows him inside and out. Bottom line is he needs to have his aortic valve replaced and the surgeon that has been recommended to us is, from what I understand, the go-to guy for such a procedure.

Hi Allison! I'm sure I'm mis-understanding this, as there are 4 major hospitals and 25 Surgeons performing Open-Heart surgery in British Columbia. You can look on the BC Health Wait Times site to see who/where this can be done.

http://www.health.gov.bc.ca/swt/

BC surgeons are doing some amazing things; as I was researching my own procedure, a number of the BC doctors came up in my searches. They are excellent (you don't get to be a Cardiothoracic surgeon without being excellent), and I'm sure you are in great hands.

Best wishes that things go well for you and Derek...
 
Hi Allison! I'm sure I'm mis-understanding this, as there are 4 major hospitals and 25 Surgeons performing Open-Heart surgery in British Columbia. You can look on the BC Health Wait Times site to see who/where this can be done.

http://www.health.gov.bc.ca/swt/

BC surgeons are doing some amazing things; as I was researching my own procedure, a number of the BC doctors came up in my searches. They are excellent (you don't get to be a Cardiothoracic surgeon without being excellent), and I'm sure you are in great hands.

Best wishes that things go well for you and Derek...

My GUESS would be she is talking about surgeons who specialise in Congenital Heart defect surgeries, and not all heart surgeons.
 
My GUESS would be she is talking about surgeons who specialise in Congenital Heart defect surgeries, and not all heart surgeons.

I thought the same, but wanted to make sure she had the list, nonetheless. :)

I know how we adults actively search for more information when it's US having the surgery, and how much it helps to access more resources; I can't imagine how hard it must be to search for that information for your child. Again, best wishes that things go well and that you find the information you're looking for!
 
Hi Allison,

Just wanted you to know that I'll be thinking of you and your son Derek on the 11th and on the days leading up to this procedure!!!

Rachel
 
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