JJ Castillo - Heart Valve Journal

My Journal

Here's my newest picture!

May 11, 2016 Like | Chris Vereb, Amy Dorsey, Tim Alonso and 7 others like this

Two days after my 5th open heart surgery.

Bob Fessler Wow! You look great especially after only two days. I hope I look half as good.

Joanne Casserly You look amazing!!!!!! :) :) :)

Jeff V. What valve type did you select, JJ?

Dan Edle what were all of your 5 open heart surgeries for? I had my first in early March to repair my mitral valve.

Kate Watson 5th! Oh man, I can't imagine. Two was bad enough but you look great!

JJ Castillo Jeff, my surgeon likes the bovine tissue valves so that's what I have. And Dan, my first OHS was when I was 1 to correct several defects in my heart, 3 Of the ... Read more

JJ Castillo Jeff, my surgeon likes the bovine tissue valves so that's what I have. And Dan, my first OHS was when I was 1 to correct several defects in my heart, 3 Of the surgeries were to replace the pulmonary valve and one was to put a patch on my right pulmonary artery after a lung collapsed.

Sophia Ridley JJ - you're smiling and an inspiration!! Very best wishes for a smooth recovery.

JJ Castillo Thank you 😊

Kate Watson Wow you've been through so much so young. Hope your recovery goes great and that your bovine valve lasts you a long time!

JJ Castillo Thank you! My surgery was in February and I feel absolutely great 😀 And yes! If the valve lasts 10 years I'll be happy 😊

Kate Watson That is awesome, JJ! So glad you feel so well.

Dan Edle You are a Warrior>>> with a Smile!!! Best of Luck going forward!! I had my mitral valve repaired in early March & feel good.. did a little jogging this week... ... Read more

Dan Edle You are a Warrior>>> with a Smile!!! Best of Luck going forward!! I had my mitral valve repaired in early March & feel good.. did a little jogging this week... it will take some time to get back where I was before my surgery... but I Will...

Petey Bello Wow 5 surgeries...I can't imagine. You look great! Thanks for sharing your wonderful picture. Very inspiring!

JJ Castillo Dan, thank you! and yes, you will! 😊 And petey, thank you 😊

Julianne Beatty wow!!

8 weeks after surgery/martial arts

Journal posted on April 7, 2016

So Wednesday was my 8th week after surgery and I feel great. I'm cooking like crazy and getting my energy back. I generally feel very good, however I do still feel a twinge of pain just to the right of the top of my incision. I feel it when ever I get out of bed, stand up from bending over, and sometimes when I breath in deep. I know it is just part of healing. My question is, when would it be safe to return to full contact martial artist? I know in 8 weeks the sternum is healed, but I can't imagine it would be smart or safe to be hit or thrown so soon.

Like | amy ., Stephen Doherty, Nicola Laker and 2 others like this

Wanda Mroz No it wouldn't feel good. Ask the surgeon... They will let you know what is safe.

Mary K Wanda is right. Ask your surgeon. And ask yourself...."do I want my life saving surgery site potentially damaged with my mended heart ticking valiantly behind ... Read more

Mary K Wanda is right. Ask your surgeon. And ask yourself...."do I want my life saving surgery site potentially damaged with my mended heart ticking valiantly behind it?".

I had a CT scan of my chest four months out and was told that the sternum was only partially fused at that time. My cardiologist subsequently told me that the sternum might NEVER completely fuse.

Would I willingly let someone do a roundhouse to my chest now almost a year out. Ummmm. That would be a resounding "No way!".

JJ Castillo Ok thanks

Great news!

Journal posted on March 5, 2016

I had my surgery a little over 3 weeks ago and I feel great! I had a visit with my cardiologist a few days ago and had an echo. The results were great. Before surgery I had a lot of leaking in the pulmonary valve, now I have none, and I have only a small amount of leaking in the tricuspid valve after repair. But the best news of all was that before surgery my heart was enlarged and now it's gone down to a normal, healthy size! 😀 We are so happy!

Like | Patti Talbot, Joyce Shelby, Pat Bijas and 7 others like this

Sophia Ridley All wonderful news about the valves and reduction in size.

Bob Fessler Wow! You couldn't ask for better results.

Elaine Cutri Yay! That is wonderful!

Wanda Mroz Awesome! Keep up the good work!

Liz Burroughs I'm so happy for you!!

JJ Castillo Thank you! 😀

Pre-op visit

Journal posted on February 8, 2016

Today I went for my pre-op visit and everything went good. It's really getting close, but I'm still ok. They're going to replace the pulmonary valve, but they also might patch both pulmonary arteries because they are stenotic. And they're going to look at my tricuspid valve because my last blood culture was positive for vegetation, but my cardiologist said that it's not unusual for congenital heart patients to have some growth. So that's where we stand. Oh, and I will be in the pediatric icu which is good.

Like | Kate Watson likes this

Elaine Cutri Sounds like plans are coming together. Best wishes for a great outcome and smooth recovery!

Cheryl Bass JJ, praying for a successful surgery and a fast recovery.

Whitney Nelson Good luck JJ!!!

JJ Castillo Thank you everybody

Best wishes for a smooth surgery!

Alina FH Best wishes for tomorrow, JJ!

Kate Watson Best wishes for a successful surgery and smooth recovery!

Got a date for surgery! 😀

Journal posted on February 5, 2016

A month ago or so I went through a few days of being absolutely terrified. But now I'm almost elated. I have a date and I know everything will be OK. I'm so grateful that this can be fixed and I'm so looking forward to going back to school and get back to my normal self. We just found out this morning that the surgery will be on Wednesday the 10th. That's in 5 days! But I'm so ready for this to be over. Sorry for my rambling 😊

Like | Sharmin Atker, Elaine Cutri, Whitney Nelson and 1 other likes this

susan kotansky Congratulations!!! Having a date makes it real and you know when it will be over!!!! Yessss!! The best to you JJ!!!

JJ Castillo Thanks! 😊

Kate Watson That's great that you have such a positive outlook! Sometimes clarity makes all the difference. Wishing you well.

JJ Castillo Thank you!

Liz Burroughs That's great news!! Best wishes for a successful surgery & a full recovery! I'll be praying for you.

JJ Castillo Thanks!

Afraid of surgery. Help!

Journal posted on January 11, 2016

I'm new here, so, hi everybody. I'm going to have my 6th open heart surgery soon and I'm experiencing fear about surgery for the first time. Granted I don't remember the first three, but I was 11 and 12 for my last two surgeries. I'm now 22 and I'm not handling this as well as I used to and I have no idea why. Everybody is always saying how absolutely wonderful I am about all this. I act like I'm fine with it all but inside I'm freaking out and I have nobody to talk to about it because everyone thinks I'm so brave. At night I obsess over it. I spend hours researching stuff pertaining to the surgery. I wish I could just quit thinking about it. I guess I just need someone to talk to

Like |

Tina Maroon You encourage me a lot by your story. I have had three open hearts. How well do you feel and how do you get by on a day to day living such as physical activities?? ... Read more

Tina Maroon You encourage me a lot by your story. I have had three open hearts. How well do you feel and how do you get by on a day to day living such as physical activities?? Are they hard for you?? I wish you the very best with your surgery.

JJ Castillo Well usually I have no restrictions. I'm a black belt in martial arts and usually pretty active. But my pulmonary valve is leaking, so now I can't do any kind ... Read more

JJ Castillo Well usually I have no restrictions. I'm a black belt in martial arts and usually pretty active. But my pulmonary valve is leaking, so now I can't do any kind of physical activity. If I do I get severely out of breath. I've also been getting low grade fevers for about 3 months. There's a concern for endocarditis so I'm going to have 6 weeks of antibiotics through a picc line before the surgery. And thank you

Wanda Mroz You're scared because you understand more at 22. It's normal to feel that way. Best wishes on everything going well.

Clare Auten Welcome to the website. Everyone here is very helpful. There are even some younger guys. I'm sure they would talk to you about their experience. Good luck.

JJ Castillo Thank you so much. I'm already calmed down about it, I don't know why I just kind of freaked out. But reading everybody's story and their fears kind of put ... Read more

JJ Castillo Thank you so much. I'm already calmed down about it, I don't know why I just kind of freaked out. But reading everybody's story and their fears kind of put my own fears in perspective. But thanks again 😊

Patricia Garcia JJ you will get through this surgery as well and it is normal to be scared. You are more aware of what you will go through and that is extremely overwhelming. ... Read more

Patricia Garcia JJ you will get through this surgery as well and it is normal to be scared. You are more aware of what you will go through and that is extremely overwhelming. You are amazing to have went through 5 surgeries, especially as a child.

JJ Castillo Thank you 😊 It's wonderful to hear the encouraging words

Melinda Queliz Your emotions are 100% valid. I am facing the same emotions as you are and my PCP prescribed some nerve pills to get me through this, I also have started speaking ... Read more

Melinda Queliz Your emotions are 100% valid. I am facing the same emotions as you are and my PCP prescribed some nerve pills to get me through this, I also have started speaking with a counselor to help with everything. I think you are experiencing more fear this time around because you are an adult now and are wiser and have experienced enough life to know the possibilities of everything. I pray for everyone on here and now you are added to that list!

JJ Castillo Thank you so much. is your counselor helping? Maybe you just need to talk about it. That's helped me a lot.

Liz Burroughs I was really scared to have my heart valve surgery. The only surgery I ever had was a tonsillectomy as a small child. I became obsessed with my surgery & I ... Read more

Liz Burroughs I was really scared to have my heart valve surgery. The only surgery I ever had was a tonsillectomy as a small child. I became obsessed with my surgery & I spent my evenings watching mitral valve repair surgeries online. Finally I stopped watching the videos & started to keep my mind on other things. I tried not to think about the surgery too much. That really helped to calm my fears, along with all the wonderful people in this heart valve community. Best of luck with your surgery!

Elaine Cutri Hi JJ,
I had my 4th OHS last May. I was surprised it went easier than the last one 22 years ago. I think they've improved the surgical process and ICU care. ... Read more

Elaine Cutri Hi JJ,
I had my 4th OHS last May. I was surprised it went easier than the last one 22 years ago. I think they've improved the surgical process and ICU care. I have faith that this will be better than the last OHS for you. You're in my thoughts and prayers!

Wanda Mroz What you are feeling is normal. You are older now and understand more about the procedures, so it is only natural to feel more stressed. Lord knows I was ... Read more

Wanda Mroz What you are feeling is normal. You are older now and understand more about the procedures, so it is only natural to feel more stressed. Lord knows I was a basket case before my surgery. You are a champion at this and have gone through a lot at such a young age. Keep breathing, maybe ask for some anxiety meds (I took Xanax now and then), see a counselor. Everyone here is helpful and wonderful for support. The process to do your repair has greatly improved and is safer now than ever... have comfort in that. It truly is amazing how many improvements are made minute by minute. Hang in there... will keep you in my thoughts and prayers... best wishes for a smooth surgery and recovery.