Cardiology appointment

[Debbrn]

I just got back from Boston earlier this week. I love the staff up there!!!!!!

One of the things that has always confused me is how much I can do. I know my heart numbers are not terrible, but they are not good either. I am still working as a pediatric nurse along with other things that I accomplish. I figured if I could still work as a floor nurse that my heart must still be pretty good and I just need to stop complaining and live life. On the other hand I know my heart numbers and they tell me a different story. The two just didn't seem to go together. The doctors said that they do not understand it either. The doc said that 90% of people with my function are on heart failure meds and she does not understand why I don't need to be on high dose lasix. She said that I must have a pretty high thought of what exhaustion was.

The big news is that it is almost time for my next PVR. I was not surprised. The plan currently is that I will go back to Boston next May and have surgery. I don't want to be in Boston in the winter. My doc is going to take my case to the review board on 9/14 and let the whole board agree that it is time. My current valve is almost 19 years old. Not bad for a tissue valve!!! I will be in the pre-surgery thread before I know it.

Debbie

 

[Jkm7]

Hi Debbie,
Sorry you are facing surgery again in the not too distant future but happy you are still able to work and function at what sounds like high level.

Which Boston hospital are you having your surgery at? I had two OHS at Mass General and the care was incredible. Amazing nursing; amazing support staff.

 

[Debbrn]

I will be having surgery at Boston Children's. I have already had 3 heart surgeries. The surgeon's with the most relevant experience are there.

Debbie

 

[Jkm7]

A very, very fine hospital. All best wishes.

 

[catwoman]

Debb:

What is a BT? I looked at your profile, and was intrigued by the reference to BT.

 

[Debbrn]

A BT shunt stands for Blalock-Tassig shunt for the cardiologist and surgeon that infented it. It puts a conduit between the subclavion artery and pulmonary artery. Allowing the blood another chance to make it to the lungs in specific cyanotic heart defects.

Debbie

 

[zipper2]

I will be having surgery at Boston Children's. I have already had 3 heart surgeries. The surgeon's with the most relevant experience are there.

Debbie

Wow Debbie,3 surgeries past,but you know half the weight is lifted
when you have the proper docs and experienced care,that part makes
me so happy for you and knowing you are looked after.
All the best to you,keep us posted

 

[knoxbone09]

I wish you all the best, take care!

 

[ALCapshaw2]

I will be having surgery at Boston Children's. I have already had 3 heart surgeries. The surgeon's with the most relevant experience are there.

Debbie

Have all three been done by (full) Sternotomy?

Has anyone suggested Thoracotomy for future surgery?

Just Curious.

'AL Capshaw'

 

[Debbrn]

My first surgery was a thoracotomy and the others were full sternotomies. Because of working on the pulmonary and tricuspid valve, I think they have to do a sternotomy. I am going to tell the surgeon to put in hinges and a zipper to make it easier the next time.

Debbie

 

[ALCapshaw2]

Interesting.

Why did your First Surgeon perform a Thoracotomy instead of a Sternotomy?

I'd be interested in your thoughts / experiences comparing the two approaches. Was your Thoracotomy through the ribs on the right side?

'AL Capshaw'

 

[Debbrn]

My thoracotomy was on the left side because that is when they had to get to the left pulmonary and subclavion artery. I was only six weeks old. The other 2 surgeries they needed to get to the right side of the heart.

Debbie

 

[Lynlw]

Interesting.

Why did your First Surgeon perform a Thoracotomy instead of a Sternotomy?

I'd be interested in your thoughts / experiences comparing the two approaches. Was your Thoracotomy through the ribs on the right side?

'AL Capshaw'

The BT shunt is the one that was developed for Blue Babies that the movie partners of the heart (and another one I can't remeber the name of) were about
Justin's BT shunt was also done with a thoracotomy, I think that is pretty much how most surgeons do them. Justin's starts at the front of his armpit and pretty much follows his shoulderblade almost to his spine. He was 10 days old and 5 pounds it always amazes me when I think of how CHD surgeons can operate on hearts that are smaller than a walnut. For the most part, these days they give them to babies (blue babies) to allow them to get big enough for the bigger corrective (or palltive)surgery.

Debbie, you know you are in my prayers, and Boston is a great Hospital, I'm curious did you discuss at all the percutaneous PVR?

ps I just remeberred the other movie was Something the Lord Made.

 

[Debbrn]

I have not spoken with the surgeon yet. I don't think that a percutanous PVR is an option because they want to repair the tricuspid valve also.

Debbie

 

[Lynlw]

I have not spoken with the surgeon yet. I don't think that a percutanous PVR is an option because they want to repair the tricuspid valve also.

Debbie

That makes sense. It wasn't an option for Justin when he had his last surgery because his valve ended up being great, it was his conduit that smushed.