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djlfranklin

It has been a while since I have posted. My Son James Had surgery last July To repair his Aortic valve. He has aortic stenosis with a bicuspid valve and regurgitation. The surgery went well " So we thought" his first post op appt went well. His cardio Said it looked like the repair was successful and that the leakage was mild and that it would probabbly be many years down the road before we would have to do a replacemnet. The next appt He said the leak was a little worse not to be too concerened and put him on Zestril to help control his blood preassure. The 3rd Visit he incresed his zestril and added lasix it looked the the repair was failing We went back yesturday and he did the usual tests and said the valve had prolapsed and the the leak was severe. So back to square one. He will need the valve replaced soon in the next few months. We are waiting for our consult with the sugeon and the usual insurance hoops to jump. We are going to revisit our options for the replacement The Ross procedure, Mecanical, or tissue.
Has anyone had a repair that failed? We are really stunned right now especially James he just turned 16 and had big plans for his spring and summer lots of dirt bike ridding will have to wait. His cardio has told him to take it easy he has began to have a lot of symptoms over the last month or two. S.o.B , fatigue, and racing pulse. The worst of all is deppression. My usually very Happy Kid "well Teen" just wants to sleep all of the time.

Sharon MoM To James
 
I am so sorry to hear about James. It is so much harder when it is someone young. I have not had a repair but had my bicuspid aortic valve replaced last February. I chose tissue. Everyone has to weigh the pros and cons and choose what is best for them. I was 44 when I had my surgery. No problems to date. Good luck and I will be praying for James!!
 
I'm so sorry to read this, Sharon. My heart goes out to all you "heart moms" and James will stay in our thoughts and prayers. Take the time to read about all the valve options in the valve thread and there are also many here who have gone the route of a Ross. Let us know what you decide and when you have a date so that we can all help you and James climb this mountain one more time.
 
I had a mitral valve repair so can't offer any insights about the aortic valve repair or replacement choice. I just wanted to say I'm sorry to hear James' repair failed and offer my best wishes with the replacement.
 
I'm so very sorry to hear that the repair didn't last long. Do they give any reasons why? This may factor in to what valve would be best. My personal choice would be to choose which gives you the best chance of keeping him out of the OR as long as possible after the replacement- which would be mechanical (because tissues just don't last very long in teens and Ross's can be pretty uncertain with different factors). However, I'd first want to know if he has any physiology that would exclude or recommend one particular type. I know you must be very concerned and discouraged. You have my prayers as you sort through the options.
 
Wow, Sharon; I'm really sorry to read this. This must be an extremely difficult situation to deal with right now. But, with the repair, you made the best decision you could at the time, based on the information available to you. Sometimes bicuspid repairs work in younger patients. Hopefully James will feel much better next time, with a properly working valve.

Depending on why the repair failed may give you a further clue as to whether an experienced surgeon may or may not feel that a Ross procedure will work. Be sure that you have copies of James' op report and such available; and there may also be a pathology report on any tissue samples they may have taken during the last OHS. There are evidently so many degrees of the intensity of the bicuspid issues, varying greatly among patients. For example, a pathology of my aortic tissue, my surgeon described as, "a little thin."

I don't recall, but was James diagnosed with Marfan's? I once read a report from 1994, I think it was, that tissue valves were preferred with that diagnosis; perhaps that information is now outdated though--I don't know.

BTW, did the docs think Zestril helped James? Everyone's different but many years ago, pre-valve replacement, I took it but I think it sped my heart up, made it beat harder, and made me tired.

Please keep us posted. You and James, of course, have my best wishes. Take care.
 
So sorry to read your news, my sons mirtal valve repair failed but it was a long time ago, it is only now after 8 years that we are looking at surgery again. He too will possibley having surgery in the next couple of months. I will be thinking of you and my heart goes out to you. Wishing you and James the very very best of luck.please keep us informed.
 
Not a repair

Not a repair

Hi there. I had my aortic valve replaced 2 years ago and found out a few months after surgery that it was a faulty valve and I am being monitored every 3 months to see how long I can keep it. I know this is different to you, but I believe that no decision is absolute. I went tissue cause I did not want drugs.....have drugs anyway.......C'est la vie. I hope that whichever you decide it runs smoothly and lasts a REALLY long time. I'm not looking forward to my next surgery at all.
Take care

Lotti (UK)
 
Sharon

Sharon

Having an age 16 soon to be..Grandson..I will be keeping you/James in my prayers......keep in touch with us..Bonnie
 
I sent a PM to Sharon as we are both in So Cal and both have kids into the dirt bike riding thing. But, I did want to say that the depression is definitely the worst. My normally extremely resilient son is really struggling with it all right now. It just seems that at that age they can't see the hope that in time they will be happy again - even if their heart condition is permanent. If anyone has any suggestions about the depression, please let me know.

Sharon, hang in there and let us know if there is anything we can do to help.
 
Dear Sharon,

You and James are in my prayers.I have no advice to give but as a parent I can only imagine your pain and frustration.I pray that this surgery will heal your son and return him to a healthy 16 year old. Please keep us posted on his progress.
 
Sharon,

I read your post and was so touched by it that I read it also to my husband. My thoughts and prayers are with you during what I know is a difficult time. It must be so hard knowing that it is your child suffering ~ I was very thankful throughout my own experience that it was me and not one of my four children.
I recently had an aortic valve repair myself, just 5 weeks ago, and was told to expect at least ten years and possibly 20 out of the repair. I know there are no guarantees in life, especially when it comes to this kind of thing but it is still hard and I am sure very disappointing.
Sounds like you have a very active young man there who loves to ride motorcycles and do very physical things. With that in mind, if it were my child I would most likely look into Ross procedure first and then tissue valves. My own personal opinion only, and I am sure there are lots of others who will disagree, but quality of life is extremely important, particularly to a 16 year old. I also ride a motorcycle and I am passionate about that~wouldn't want to give it up for anything, even if it means another surgery in 10 years.
One of the most exciting things on the horizon for us valve patients is the likelihood that future valve replacements are almost certainly going to be done percutaneously, a much less invasive surgery and easier recovery!
I know, you can still ride motorcycles, be physical etc. even while on Coumadin but I don't know about your boy...mine would have a really hard time taking drugs everyday, monitoring his diet, checking his INR, etc. and just my opinion but being on blood thinners and crashing your dirt bike can create some real issues with bleeding....just some things to think about. Either way I know you will carefully consider all the options and make the best decision possible!
Again, my prayers are with you!

P.S. My brother in law's younger brother had the Ross procedure at age 13...he is now 23 and things are still looking good!
 
Just wanted to wish you luck again. have you spoke to his cardio about valve choices. We dont have a choice and they will only use mechanical if they can't fix it again. Things may be different for you as james is a little older and we live in the uk. I wish you luck with your choice and send my continude best wishes to you and all the family.
 
nothing much to say on the heart front of things, except to wish all you moms and sons the best; you all sound like caring mums and make, or help your kids make, good decisions.

This has got lengthy, but if you want you cn either PM or e-mail me.

However, I have had "chronic recurrent major depressive disorder" for most of my life, but was not diagnosed (and therefore treated) until I was about 35. Looking back, I can identify two or three major episodes in my mid to late teens. Whether this has anything to do with CHD (I had BAV replaced almost 6 mnths ago) I do not know, but all I can say from my experience is do not let the depression go untreated !!!!!! All my late teen years, I had no drive, no ambition, made some bad life decisions, did not deal well with others, and having to deal with heart problems on top of what I went through, well, I don't know what could have happened. I suggest to ALL of you that you get a psych evaluation, and if necessary, medication. I will be on anti-depressants fof the rest of my life, and since being diagnosed and treated I am not experiencing anything I can't handle. In fact, it was good training for being on coumadin !

There is a link in adult OHS patients getting depressed, the doctor I had in ICU was really concerned, and said a few times that OHS can be a trigger for depression, and told me to watch myself and if I needed any help, let the staff on the floor know, and they would help. She stressed the multi-disciplinary team approach that medicine has these days.

I don't know whether you should talk to your cardios, or your family docs, but please, for the sake of your kids, don't let the ball drop on this!
 
Ross

Ross

Well, i can't speak for everyone but I can tell you that I had a Ross in 97 at Jewish Hospital in Louisville Ky. My Ross is still holding strong! Now I do have to get a fix for a dilation of the Aortic Root (now they fix it all together) but I could highly recommend a Ross for someone so young. Providing the surgeon is a "true blue" Ross expert of course. If you want my surgeons name let me know. As far as the Ross he is a bad man! Hope your son is well. Tell him to keep fighting. He can beat it! :)
 
Replacement

Replacement

I'm sorry to hear that your son's repair job didn't work as hoped. This group is well-represented by folks who've had replacement work done. It's a real downer for your son to face AVR surgery so soon after his repair surgery, but regardless of the solution you folks decide on, replacement isn't a bad thing. You're in a tough situation, but try to focus on the positive stuff. Your son's chances of doing well with a replacement aortic valve are pretty darn good. Even some of us middle-aged guys do well with the replacement thing.

-Philip
 
I wanted to Thank you all for your comments and support. Now that we have had few days to get over the shock of it all, We can get busy reading up on his options and making a decision. The Final decision will be up to James he is a young man now and it is his body. We will give our input though. I have been collecting information and His Dad and I are going to take him out for his favorite baby back ribs and talk about it. Thanks again your are a fantastic bunch and it's nice to know there is a lot of experiance here and you are all willing to share.
Sharon Mom to James my kid with a big heart (pun intended)
 
Sharon (and Brian's Mom),

You may be interested in this book on Heart Surgery and Depression by Carol Cohan, M.A., June B. Pimm Ph.D, and James R. Jude, M.D. titled:

"Coping With Heart Surgery and Bypassing Depression"

It was originally published as "The Heart Surgery Handbook" by the same authors.

Here is my original post on that book from 2002 which is in the Reference Forum:

"The Heart Surgery Handbook"
by Carol Cohan, M.A., June B. Pimm Ph.D, and James R. Jude, M.D. published in 1988 by the Pickering Press.

Chapter Titles:

1 - Bypassing Depression
2 - Choosing Surgery
3 - Getting Ready for Surgery
4 - Surgery and the ICU
5 - Step-Down Care
6 - Recovering at Home
7 - Prescription for Recovery
8 - When Some You Love Has Surgery
9 - More About Depression
10 - Promoting Recovery and Good Health
11 - Prescription for Life

This book has been revised and republished under the title:

"Coping With Heart Surgery and Bypassing Depression" by the same authors.

Check your local library and bookstores for other publications on Heart Disease and Heart Surgery.

The Cleveland Clinic Heart Book and The Mayo Clinic Heart Book are other good references which provide a good basic background in Heart Disease and Heart health.

'AL Capshaw"
 
I am so sorry I can imagine exactly how you feel. Justin just turned 17 when he got his pulm valve and conduit replaced, it was his 4th OHS, so we were hoping it would last 10 years. He got back to doing everything and was getting pretty happy again.About 1 year later he was really tired again, it turned out his valve was perfect, but his conduit was almost completely closed so he had to have surgery to replace his conduit. If we can help , please just email me, I don't stop by here that often anymore, so sorry it took a while to see your post, Lyn
 
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