Milissa's Guestbook

Rita Savelis  In many ways, a mechanical valve on a younger male patient can be a different (easier) choice for a male because a young female has to think about possible child-bearing and having periods (which coumadin will affect) both reasons a doctor might recommend tissue for a younger female patient and repeated surgeries until she gets older. For a younger male patient these are two things that don't come into play. Any choice is personal however, and there is no "right " choice, just different options.
I'm sorry that you and your son have to go through with this. Being a young patient in the cardiac world is not easy. I was once a young cancer patient (many years ago), way before my heart surgery, and I do know that young people have the incredible ability to not focus on their disease but to just get on with things and to heal quickly. For parents, this experience is a lot more difficult.

Milissa Schmitt  Hello Adrianna!
Thank you for your comments. I know when we found out Luke had this they said it was normal in 50 year-old-people. Crazy that with people born with it it doesn't get caught more!

How did your surgery go? Were they able to repair it? If not what kind of blood thinner did you go with? How are you feeling since surgery?

wishing you the best and a Merry Christmas and Happy New Year! I hope you nothing but the best for the new year with your health!

Milissa

Milissa Schmitt  Thanks for your insite! The Ross procedure was mentioned when Luke was first diagnosed at the age of 2 but at his most recent appointment it was not recommend for him.

I hear you about being scared to get your kids tested! We have 3 more children and have been recommended to get them tested and we haven't yet. It just makes me nervous I know that is not a good excuse but the cost isn't cheap. :(

Michael Shaughnessy  Milissa
I have commented on this subject in depth but this site is hard to search old posts. I have a Freestyle aortic valve for congenital bicuspid valve. I am a physician, was diligent in my research, and continue to investigate. It is a very intimate decision, but I would only choose an UNSTENTED biologic valve with today's technology. Coumadin is controllable but it is no life for a sixteen year old. The drug itself is not as much of the problem as the WHY you need it. The flow of blood across mechanical valves is erratic and turbulent. The transvalvular gradients and hemodynamics of mechanical valves do not compete with biologics. As a young person ( I was 43) biologic valves have a shorter lifespan, but STENTED valves definitely have short life spans. Coumadin data suggests that 40% of patients are not therapeutic at any one point in time. I have seen too many disastrous side effects from Coumadin in my professional career. I want nothing to do with it if at all possible. I take no medications, never worry about a fall or a cut or the wrong vegetable risking me to a stroke. I am very active, compete in triathlons, and could go through that surgery again tomorrow if I had to. The freedom my valve gives me is that I will be in great physical shape when my next surgery comes. Hope this helps.

Enrique K  Very well said Michael. I just take an 81Mg Aspirin daily that is all. No need to worry about other medications.

Milissa Schmitt  Jeff Offermann - you are right. Luke's cardiologist said the tissue valve would last him 2-15 years.

Michael Shaughnessy - thank you for letting me know about the unstinted biologic valve; I am making a list of questions to take with to the surgical consult and will add that to it! I plan on googling the heck out of that before than to be informed.

Enrique K - I have been thinking of doing the tissue valve for this surgery and if he has to have another THEN going mechanical. I just don't like the thought of the meds (blood thinners ) that go with it. I plan on talking about that with the surgeon and cardiologist as well at the next appointment.

Elaine Cutri  Welcome to the group. I would be happy to answer you or your son's questions regarding aortic valves, from a recipient's perspective. I've had a repair, a tissue and 2 mechanical valves. See my story for more details. My life has been very full and wonderful, but I do have to pay attention to my situation to stay healthy. I've been able to make it work just fine. Best wishes. Hope for the best for your son!

Kenny Knox  Hi Melissa! I had an OHS when I was around Luke's age. I was 15. I've had both tissue and mechanical valves. I'd be glad to answer any questions or provide perspective on having OHS as a teenager. Let me know if I can help! Knox.kc@gmail.com

Emily Rowley 
Hello Melissa,
I was reading your Son's story. You have come to the right place for much needed support and advise.

I was born with a congenital heart defect, however it was not picked up until the age of 15 (start of Winter in Year 10. That's when I noticed my symptoms (shortness of breathe, chest pain and fatigue) getting worse. To what extend do you feel your son experiences these or similar symptoms? That could be a significant factor in deciding when the right time to operate on your Son is.

After heart murmurs were detected, an Echocardiogram was conducted and referral to an excellent Cardiologist who explained everything simplistic, which at 15 yrs old I needed! Experienced Heart team that included two Cardiologist from my service and others, overlooked every detail of tests then examined me in the Children's Hospital Department. I had moderate-severe regurgitation with severe symptoms causing my heart to enlarged. Therefore surgery was need as soon as I could. At that very moment I had tears coming down from my face. Being so young I didn't know what to expect, I was so scared! How does your Son feel about all this?

In Spring of that same year (2010), I met with a top quality highly experienced Surgeon (who was the head of the Cardiothoracic Surgeons in that area).

The following year (when I could have time off School after starting at the Senior Campus for my final years of Schooling) my Open-Heart Surgery was booked, but because I was 16 turning 17 I could not have it done at the Children's Hospital.

6 hour operation (found another hole in my heart measuring 9mm) was successful to repair 2 holes+my Mitral Valve. I was the 'baby of the ward' being so young but they made me feel comfortable. Took around 6 months of School, they really helped out sending me work home. It took me 1-2 yrs to feel fully recovered.

5 yrs on (aged 20) I have quite significant regurgitation and my symptoms have returned. My Mitral Valve was working approx 98% after my last surgery. They want to operate before my heart enlarges again because complications are more likely to occur (but don't fear cause complications in this modern medicine era and in good experienced hands rarely occur!).

I have an excellent and confident woman Surgeon this turn, she wants to try repair my MV, but if not give me the best long-term result, she will perform a replacement. Have you spoken about possible repair?

I've spent endless days and sleepless night wondering which valve to choose as my back up. I'm heading towards a tissue (pig) valve with another operation down the track.
Although my Surgeon said, tissue valves tend to wear out faster in younger patients (especially young females probably due to calcify during pregnancy which your Son doesn't need to worry about :P) because the stress teenagers and 20-30 yr olds place on their heart. However the alternative mechanical valve didn't appeal to me after discovering effects of Warfarin such as bone deterioration causing early osteoporosis and increase 2% per every year alive of serious bleeding risk. I'm hoping in years to come there will be improvement in options and treatment. Everything has advantages and disadvantages, but it's about making a decision that your Son and yourselves as his Guardian feel most comfortable with.

My surgery is in early January next year and be 21 years old.

I know this is incredibly long and went on about my story, but hopefully this can give you a good insight and help guide you to making your own decisions.

All the best,
Emily.

Ps. This site wouldn't allow me to send you a Guestbook Post.

Milissa Schmitt  Hey Emily!

Our son says he doesn't experience shortness of breath, chest pain or fatigue. Which I'm not sure if he does and isn't saying or if he just doesn't notice it. He participates in Cross Country without any issues and if he gets tired during the summer he comes in the air conditioning, takes it easy and relaxes. He currently is on 10 mg of Lisynopril which up until June of this year was only 5mg since the age of 5.

He was right from the started listed as moderate-severe reguritation just like you but being that his heart had not enlarged they didn't feel surgery was necessary. Last year when we went for his yearly appointment we were told that repair may be possible because everything was going well and no changes other than normal growth; however, this year when his heart enlarged by 6mm repair was taken off the table and now replacement is where we are headed; just a matter of when.

Where are you from? By reading your post I'm thinking Australia? or at least another country? We found out in November when we went for a recheck that the United States FDA approved a catheter type stint that can be put into a pig/tissue valve if problems occur after replacement (say in two years) to get it to last longer. We were told by Luke's cardiologist that a tissue valve can only last 2-15 years. I actually know of a 76 year-old individual that lives about 5 miles from us that she DID have a tissue valve about 9 years ago and in September/October had to have something done so she chose the Stint that was just approved and it has been working great for her.

I am so shocked that it has taken you 1-2 years to fully recover. My son's cardiologist said that if he would have surgery this summer it would be about 5-7 day hospital stay and 3 weeks of no lifting more than 10 pounds; no driving, etc and back to running Cross Country this fall! I find that SOOO hard to believe but I thought what do I know?

I'm really hoping for the best for you! I hope you get great/better results with your surgery! If you have any questions for me I'd be more than happy to answer whatever I can! :) rjmk94@arvig.net is my email.

Emily Rowley 

Medical improvements are being made especially in your country which is great news for you! :)

I would like to add in, it depends on what position in the heart the mechanical valve is located. For example, my Surgeon told me I would need alot higher dosage being the Mitral Valve that runs straight to the brain. However since it's your Son's Aortic Valve he may require minimal anticoagulant dosage.

Milissa Schmitt  Meredith - Thanks for the info! I have heard NUMEROUS times not to trust or read WEBMD. I did find the Cleveland Clinic (which I liked and seemed a lot like his current clinic) and he is going to the Mayo Clinic. I was not aware there was a difference in anti-coagulants so I made a note on the list I plan to bring to the surgical consult.

Thanks Emily - I think the cardiologist did say it wouldn't be a large amount. I will have to double check his notes that she sent to see if that is mentioned.