Paige Aguilar - Heart Valve Journal

My Journal

1029 days ago

Lynn Loudermilk, Susan Lynn, Shannon Gray and 2 others reacted to this

Today I am 1 week post op. I've been home for 2 days now, kinda missing the comfort of the hospital bed lol I've had trouble sleeping...anyone get night sweats ...Read more

Today I am 1 week post op. I've been home for 2 days now, kinda missing the comfort of the hospital bed lol I've had trouble sleeping...anyone get night sweats and strange dreams after? I wake up quiet a few times at night although pain doesn't help lol Also having a follow up appt, they did bypass threw my leg (at 16 they didn't) and there's a "large" hematoma next to the incision. Any one have any issues like this? It's gotten a bit bigger since release and it's kinda freaking me out.

Deena Elani Yay, you’re home. We all have been rooting for you! You’re beyond a warrior.— gladiator statu ... Read more

Deena Elani Yay, you’re home. We all have been rooting for you! You’re beyond a warrior.— gladiator status!
Of course, strange dreams and all sorts of different emotions, given what we just went through. Are you kidding?!$&@!. It’s life and mind altering.
As for the bruise, it’s probably getting bigger, because of gravity. The released blood slowly “spreads out” and dissipates.
(That said, if it is getting more swollen, see your doctor.)

Susan Lynn Paige - I had bypass done through my femoral artery, too. I had a big lump and huge bruise at the en ... Read more

Susan Lynn Paige - I had bypass done through my femoral artery, too. I had a big lump and huge bruise at the entry site. I was concerned and asked the nurse about it. I was told they would both go away and they did, but it did take awhile. If you're concerned, put a call into your surgeon and ask. Wishing you a speedy recovery!

Hello Paige, welcome to recovery. So glad you’re home. I experienced the night sweats but I don’t ... Read more

Hello Paige, welcome to recovery. So glad you’re home. I experienced the night sweats but I don’t remember strange dreams. Praying for your complete recovery. God bless you

Dylan Kempers Susan, my surgery was about 2 months ago and I still have a big lump (no bruise) at the entry site of ... Read more

Dylan Kempers Susan, my surgery was about 2 months ago and I still have a big lump (no bruise) at the entry site of my femoral artery. I'm going to have a vascular echo to check it out soon. How long did it take to go away in your case?

Susan Lynn Dylan - Mine was gone in less than two months. The vascular echo is probably a good idea. If you'r ... Read more

Susan Lynn Dylan - Mine was gone in less than two months. The vascular echo is probably a good idea. If you're not having any issues with the blood flow in your leg, it may just be some lingering inflammation. Please keep us posted on your results. ❤

Dylan Kempers Thanks for your response, Susan!

Craig Atwater No night sweats, but strange dreams and odd visions. According to what I've read about "pumphead" fr ... Read more

Craig Atwater No night sweats, but strange dreams and odd visions. According to what I've read about "pumphead" frequently disrupted sleep, hallucinations, and temperature management problems (I was always cold) can occur. However, all symptoms went away over time.

Paige Aguilarposted an update

1169 days ago

Hoping to get some opinions for peace of mind.... I had my first OHS in 2007. Ross procedure. I had Bicuspid Aortic valve stenosis, VSD. Surgery due to Endocarditis. ...Read more

Hoping to get some opinions for peace of mind.... I had my first OHS in 2007. Ross procedure. I had Bicuspid Aortic valve stenosis, VSD. Surgery due to Endocarditis. I now have severe aortic root (5.5) and moderate ascending aortic dilation. Slight outpouching at the site of proximal conduit attachment to the right ventricle with dyskinetic motion. (Not exactly sure what this means) mildly dilated Left ventricle, mild mitral and tricuspid regurgitation, trivial RV-PA conduit regurgitation. My doctor wants to possibly wait until aortic root reaches 6 maybe even further. I cant help but to feel, "is my doctor being too risky waiting?!?!". I had to start on BP medication in July due to my BP suddenly being higher than normal. Which I dont take everyday because some days its normal and will make it too low. I have been out of my mind worried that by taking the chance of wait I might drop dead one day. Lol (I do alot of research) I've seen alot that when you have Bicuspid Aortic is better to intervine between 5-5.5. Now that my ascending is moderatly dilated shouldn't that be reason to go forth with surgery?!?!

Steven Methot Well, my surgeons will operate all things being equal when it is 5.5 I am at 5.1 now and stable. Ea ... Read more

Steven Methot Well, my surgeons will operate all things being equal when it is 5.5 I am at 5.1 now and stable. Each person's case varies but I do know that there is a perception here among Canadian surgeons that some of their US colleagues wait a bit longer than the Canadians would.

Paige Aguilar Thank you for your response Steven! I do know that each case is different so I am trying to being und ... Read more

Paige Aguilar Thank you for your response Steven! I do know that each case is different so I am trying to being understanding and trust in my doctors course of action. But every medical article/study/webinar I have read and seen has always said with the bicuspid value to never allow it o get over 5.5 and I think that is where my worry comes from. Lol I can definitely agree with that, but I dmjust don't understand the logic of waiting until its almost an absolute need rather than being proactive. I do have an appt on the 17th and im hoping he will just schedule surgery.

Marie Myers I know there are equations to calculate when surgery is indicated based on height and body surface ar ... Read more

Marie Myers I know there are equations to calculate when surgery is indicated based on height and body surface area. Have you had a second opinion at another major medical center? 6 cm sounds a bit scary to me, but I am not up on the latest surgical recommendations for this problem. I hope you are able to get the consultations you need to feel comfortable with the surgical plan. Wishing you all the best!

Paige Aguilar Thank you Marie!
I was actually just reading that yesterday and trytp look through my records to fin ... Read more

Paige Aguilar Thank you Marie!
I was actually just reading that yesterday and trytp look through my records to find that information. Im pretty short lol im 4'11. I do agree 6 seeming scary! My mother is freaking out lol we have been searching for doctors to get another opinion. But wanted waited until after my results from last mri. I have also been weary to seek other options, as ii have been receiving care at the hospital for 29 years. I had my pediatric cardiologist for 22 years and been with my current 7. All at the same center. Im hoping this next visit gives me more clarity!!

Steven Methot Paige, I would bring all of this up with your cardiologist. One thing that was explained to me is t ... Read more

Steven Methot Paige, I would bring all of this up with your cardiologist. One thing that was explained to me is that there is a risk of "negative outcome" each and every time you go under the knife for aortic root or valve surgery. Let's say that for me at my dilation it is a 3% risk. The risk of my aorta dissecting and me dying suddenly is less than that at the moment, and so they won't risk surgery. Those calculations vary with gender, with age, with surgical history... so you need to speak openly and clearly about where you're at and what you're feeling and get the doctor's input.

Charles P Very sorry to hear. In my opinion the following; Size is directly correlated to height. If you were a ... Read more

Charles P Very sorry to hear. In my opinion the following; Size is directly correlated to height. If you were a 6' person, than I might agree with the wait and careful monitor approach. But, you're 4'11". Therefore, the max size for you is much lower. You can google charts that show relationship to age, height, gender and average sizes. I'll try to paste it in here. It appears that that you are more than double the average. So, sooner than later is best. As others have mentioned, surgery has risks, so if it were me, I would try to get everything addressed in one surgery to prevent future surgeries.

Susan Lynn Paige - I agree with Marie. There's nothing wrong with getting multiple opinions. It's just inform ... Read more

Susan Lynn Paige - I agree with Marie. There's nothing wrong with getting multiple opinions. It's just information - you owe it to yourself to make an informed choice. All the best to you! ❤

Paige Aguilar Thank you all for your responses. I have since been and will b posting an update!