Teenager in severe status

[anne casey]

Just a nervous mom here! Our 18year old son was just was (3 days ago) told he's now in the severe status...51 pressure gradient and heart wall thickness is 14. When he experiences any symptoms, it's time for surgery. We've been preparing for this for 4 years. He seems to be handling it ok. We were basically told that baseball, now in his senior year is out. He's thinking about golf now. I'm just paranoid that we won't know when it is time...that we'll shrug off slight symptoms. I know about a week ago he got up quick from the couch and had to stop because he got light headed. We'll, that happens to me on occasion too. I feel terrible now that I didn't tell the cardio. About that, although at the time, I didn't even think about it. You know, at the time you don't think much of it. I guess I won't be doing that anymore.

 

[Duffey]

Anne, this is certainly not the best way to start the new year, and my thoughts and prayers are with you. Have you met with a surgeon yet? His criteria for surgery and the cardiologist's might be significantly different. Waiting for symptoms is a hard quantity to measure. I wish you all the best and please continue to update your son's condition.

 

[anne casey]

Thanks for your support!

 

[Guyswell]

When I was waiting for my first aortic valve replacement, my cardiologist wanted me to keep exercising so we could identify symptoms before things progressed too far. We were watching for shortness of breath, chest pain or tightness and a general decline in ability to exercise. Competitve sports may have been ruled out but I think he should stay active for the same reasons.

 

[AZ Don]

I agree with Duffey's advice. It would be a good idea to talk to a surgeon. You can get a 2nd opinion and start the process to find a surgeon that you are comfortable with. It sounds like surgery is inevitable so it would be good to be prepared. Keep in mind that waiting is the worst part. While surgery is not something to rush into, waiting too long can cause harm to the heart, and for what it's worth, in my experience the surgery wasn't such a big deal. A few days in the hospital, several weeks taking it easy, some scars to remember it by and back to normal.

 

[clay_from_nj]

Depending on his overall condition, I would be surprised if, after surgery, he is not playing baseball or some other sport, at least casually.

 

[anne casey]

I'm really having a hard time focusing on anything...does it get better with time...the waiting? I know the stress that this is his senior year just makes it worse...prom, grad party, pictures, missing out of baseball...then our oldest girl is getting married in aug! So of course, all I'm thinking is...will I get this all organized and will everything go off without a hitch or will he be in surgery during one of these events or when will it happen...how can he go off to a college next fall?

Then I'm thinking back to last fall, at the end of his last game, he was rubbing his chest and told me later he had some pains. Never thought of telling the dr. That!..soooo feeling guilty. my hubby is great, but he Is on meds for anxiety issues, so as of now, he don't want to talk about it. (I think he just needs more time to process the fact that surgery is close.) hubby needs to go in for annual phy. Too, cuz he had melanoma a year ago. They caught it early tho, thank God! my mom had this same surgery BAV 4years ago and is just about ready for another surgery again...that's a whole other story. I'm not a total basket case, really, but just hoping things will settle down a bit.... I know, take one thing at a time. Sorry to ramble on...

How do you even find a surgeon? cardio. & mayo is 3 hours away. I figure you just take the surgeon they give you at the time. I think our family just wants to stay away from drs. For now, if we can, and not feel like we are dwelling on his condition. Let him feel like a "normal" kid.:eek2:

 

[AZ Don]

Re. finding a surgeon, you can pick who you want and ask for an appt. To find my surgeon I cross referenced the list of Dr's my insurance would accept with a list of top Dr's that used to be available for free at US News and World Report. Now US News only has a list of Dr's. http://www.castleconnolly.com/doctors/ has a list of top doctors and I believe they used to provide the list to US News. It costs only a couple dollars a month and you can cancel anytime (say after you have a list of cardiologists and cardio-thoracic surgeons in your area).

3 hours is a bit far but then Mayo (even the satellites such as the one here in Phoenix) are excellent hospitals and it may be well worth the trip. I highly recommend Mayo but they do not take all insurance. US News does still rank hospitals for free so you can easily check to see how the closer hospitals compare.

 

[mom2angel]

Talking to your Dr or surgeon about what specific symptoms to look for might put your mind at ease. When I was ready to have my first artificial valve replaced with an adult sized valve, I had shortness of breath. I was getting winded walking up stairs, which wasn't normal for me. My mom watched me sleep one day. I was sleeping on my back, and she said my whole head was moving from side to side because breathing was taking that much effort. We called the Dr. and he said it was time.
To the poster who recommended Mayo, I second that. I had my brain surgery at the Mayo Clinic in Rochester and they were amazing. Best of luck with everything. Don't beat yourself up. Try to talk to your son's Dr and get some reassurance.

 

[tom in MO]

From what you've said, your son is already experiencing symptoms. I would recommend he (not you) call the cardiologist back and tell him what the symptoms he currently has and ask for another explanation of what types of symptoms he needs to be looking for. The reason he should call, is that they will be his symptoms.

 

[Guyswell]

Anne,

I know this is stressing you out because it's your son we're talking about. I understand. I'm a dad to three kids.

I'm confident that everything will turn out fine. Your son is young and will heal fast. In fact, you'll be amazed at how fast he bounces back (ahh, to be young and bullet-proof again). After his recovery, he may very well be able to play competitive baseball again (I was the 50-year old, overweight guy who was riding his bike for an hour each day 6 weeks after surgery).

I had this surgery at age 41 and again at age 50 and I am so grateful for the blessing of open heart surgery. I am so lucky to have been born at this time and in this country with access to the best-quality modern medicine.

As for choice of surgeon... choose a surgeon and a hospital with lots of experience doing these kinds of surgeries. There are many places you can go to receive excellent care. I was very happy with my surgeon and hospital. Most people on this forum would say the same.

Good luck and keep us posted.

 

[VegasBAV]

It might be a good idea for him to have the surgery in June or July so that it's out of the way before he starts college, rather than send him off to college and risk that symptoms start during a semester and then he has to miss the semester.

I had the surgery at 41 last year, before having any symptoms, I flew home by myself a week later, lived alone, was back to a desk job in two weeks, did a 14 day hike in the Himalayas 10 months later. And I've never been in very good shape.

You don't have to just take the surgeon they give you at the time, he/she may be great, or he/she may be the surgeon in least demand with the most free time on his/her hands. Start doing some online research, google the heart surgeons at the Mayo Clinic near you, ask your cardiologist for recommendations, etc. Going to Mayo puts you well ahead of the game in any event because the hospital risk there will be lower than at the average US hospital.

 

[anne casey]

I really appreciate all your posts. I'm feeling a bit " calmer" about all this now. At least for now. I did call his cardio. And he assured us he could play baseball this spring..although I think this will bring on symptoms sooner than later myself. I guess, participating in his "normal" activities will let us know better if he needs this surgery yet or not? Does anyone recommend a surgeon at mayo? My mom had dr. Soon Park. And we thought he was good. Although I'm wondering if my son will have to have a pediatric surgeon? He's probably right on the border for that too...not an adult, but not really pediatrics. Anyone one else with experience at mayo with a teenager?

 

[AZ Don]

I assume you mean Mayo Clinic in Rochester, MN. I had my surgery at Mayo Clinic in Phoenix by Dr. DeValeria and I recommend him and Mayo Clinic. Because I had an aneurysm I was advised that my children should be screened as well and was informed that they did not have a pediatric Cardiologist and I would have to go elsewhere for that. I did not ask if they did pediatric surgery and it could be different in Rochester. The operators at Mayo Clinic in Phoenix were helpful and good at connecting me to the right people. I'm sure a quick call to Mayo would answer this for you.

 

[Garserin]

Hi Anne, you could try to contact Dr. Harold Burkhart at Mayo. From what I understand he specializes in pediatric heart surgery. He was not my surgeon so I have no personal experience.

 

[hannahsmom]

Hello,

I agree with all of the above. My daughter was asymptomatic when routine tests determined that she needed her replacement. Once the surgeon operated he stated that her status was more severe than even the tests had captured. Luckily it was handled before there was any irrevocable damage. I have learned over the years to be very vocal about any concerns, questions, comments I have regarding Hannah. I also encourage her to do the same.

I know to well the feelings you are having. I was not very patient and once the surgery was recommended by her Cardio I scheduled it for a month later. Waiting and watching would have driven me mad! Hannah was only 10 when she received her replacement. She was such a trooper and so strong. Being that she was a young patient she recovered quickly and was back to her physical activities 6 weeks post op. She returned to school 4 weeks post op. The young patients bounce back so fast, it's amazing. It's been over 3 years and she is doing amazing. I won't lie, it's the hardest thing our family has endured, but once you get through it the relief is tremendous. She received an adult-sized valve and will hopefully go decades if not forever without needing another surgery.

Just and FYI: Hannah had her surgery at U of M with Dr. Bove. Our cardio from another renowned hospital recommended this surgeon off the record. She said she would take her child to U of M to Dr. Bove or to the head surgeon at Boston.

I am praying for your son, you, and you family. We are all blessed to have amazing health care providers available that can amazing things. I am confident your son will only be better once he gets through this.

PS - This site was the only thing that kept me sane through all of this. I was petrified to say the least. The members on this site and their experience gave me a sense of hope and a feeling a peace. Any time you are feeling overwhelmed, log on. There is always someone hear that will give you some kind and hopeful words to get you through.

Kelly

 

[Agian]

PS - This site was the only thing that kept me sane through all of this. I was petrified to say the least. The members on this site and their experience gave me a sense of hope and a feeling a peace. Any time you are feeling overwhelmed, log on. There is always someone hear that will give you some kind and hopeful words to get you through.

Kelly

I 100% agree. This is how I feel too. :thumbup:

 

[anne casey]

Thanks so much for your prayers and support Kelly and Again! Means sooo much and good timing. After having a few days of our son occasionally mentioning he has chest discomfort, we decided to get an appt with family dr. Tomorrow. I will bring all his cardio. Papers with, even tho he should already have copies. Our son seems relieved too that he's going. Maybe it's just anxiety, but we know he should talk to a dr. Wish the cardio. Wasn't 3 hours away, but we will be sure to tell dr. All the symptoms he's been having & go from there. BTW...Our son just won a state trip in BPA! (Business Professionals of America) Just had to brag a bit....so nice to have something fun/positive to reflect on through this! :smile2:

 

[neil]

bpa nice one

 

[tom in MO]

Please be aware that your family doctor may not be able to evaluate all the heart information since he's not a cardiologist. I was taken to the emergency room because my family doctor did not understand the abnormal EKG results from the EKG he gave me in his office during my routine checkup before surgery. The cardiologist at the ER said my EKG was "normal" for someone with a BAV in severe stenosis (I had already been told surgery is needed by my cardio.)

Believe me that was a humorous situation. My doctor driving me to the ER (I was the last patient) and me saying, I don't think there's a problem since I don't have the symptoms the cardio said I should have. When I got to the ER, they insisted on giving me a second EKG. The ER cardio was on dinner break. I refused the "lines" since I knew I was probably OK...boy did that piss off ER staff. After 90 min I finally gave in and they put in the "lines." Ten minutes later they said I was OK and released me.