Pulmonary stenosis post ross help??

[skimomck]

Thanks Bryan,
We are letting Teddy make this decision but the problem is he is so frustrated with what I described and is begging us to try to cut through the red tape and get him the answers he so desprately wants. His remark several hours ago was that he feels he knows less than he knew before the cath. Hopefully all will be resolved soon.
Cindy

 

[Bryan B]

I understand the feeling of not being able to get answers. I felt like I was in a race to have my surgery done before my employer fired me due to my inability to to handle the traveling my job required. I couldn't get my cardio to take the time to refer me to Dr. Jaggers, so finally I contacted him on my own, then had more delays waiting on my records to get to him. It was actually a RELIEF to finally walk out of my office that last day to go have my cath and surgery. I barely made it...lol. On Monday I was released by Dr. Jaggers to go back to work next Monday and my employer called me yesterday to let me know they had filled my position and I no longer had a job.

Sorry to go off topic and vent, but as frustrated as I was before my surgery I found out that it didn't help speed up the process...and in the long run I feel that my persistence paid off by getting the best care available to me. Jobs (and other things in life) will come and go, but the most important thing to me was getting the best health care available so I can be around to deal with these pesky "details" life is throwing at me now.

Hang in there!

 

[surfsparky]

Sorry it's been a while!

Sorry it's been a while!

Hi Cindy,
I've finally logged on for the week... sorry it's taken me a while. Really sorry that the valvuplasty didn't make a huge difference, it would have been great if that could have done the trick so Teddy could start college as planned in 3 weeks. I've been told too, that the procedure would not work on my valve either...I'm sure for the same reasons. I'm surprised that you are not seeing the surgeon at this point. My mean pressure gradients are at 45 mmHg (much less than Teddy's), and I"m seeing the surgeon already. He wants to see me every 6 months in conjunction with my cardiologist appointments. I have been told that when my pressure gradients reach approx 50 that is when surgery will be probably be considered. I'm sure too that they do not look at this measurement alone, they would take into consideration my right ventricular pressures etc. What are Teddy's other measurements & physical symptoms? I'm asymptomatic, and I was even before I had the Ross Procedure, but at the moment I'm just experiencing quite a bit of arrythmia during the day, and a little breathless when running or climbing stairs.
I really hope that you will find the answers you need and be able to see a cardio before Teddy goes back to school. I've read somewhere too, that you can send copies of your reports to the Cleveland hospital (for a fee), for a second opinion. I'm not sure though, how long this would take either. I wish Teddy all the best, keep us updated and know you are in our prayers.
Bryan, thanks for the info about the method they used to employ of using aortic homografts in the pulmonary position, as compared to using the pulmonary homografts now. I'll be interested to see what the practice is here in Australia. Thanks too, for having a chat with your surgeon about the issues on this post. Also, sorry to hear mate that you lost your job, seems pretty unfair to me. It must be disappointing. Hope you find something else soon. Thanks for all your input as a fellow "rosser"!
Regards,

 

[skimomck]

Chris,
Thanks for the reply. We did get some info yesterday and the cath report has now been faxed to Teddy's surgeon in Oklahoma (retired form doing surgery) who will call us Monday. They called us last night and they are concluding they since he is asymptomatic which like you he was before the Ross too, and his gradient did decrease after the rather unsuccessful balloon, they feel he can go back to school as planned and we will come up with a plan to follow him there. We are not sure what they have determined to be his current cath gradient.
Chris have they determined where your valve is stenosing.? In Teddy's case it isn't the valve itself but the conduit where they connected it which we were told is the most common place to have stenosis initially.(they claim only 1-2% have this problem after a Ross) Also is your gradient from an echo or have you had a cath? It is sounding like his cath echo over estimated his gradient by a lot. I will let you know when I get more info. Hang in there and thanks for all your info and concern.

 

[Mary]

We are not sure what they have determined to be his current cath gradient.
Also is your gradient from an echo or have you had a cath? It is sounding like his cath echo over estimated his gradient by a lot.

Cindy,
Can you clarify a little? Was it the echo or the heart cath where you think the gradient was overestimated?
I'm watching this thread closely since I will have the Ross, I hope, in the next 6-9 months.
Thanks,
Mary

 

[skimomck]

Mary,
It is the cath echo that is generally over-estimated. They say it can beoverestimate by 30, but 20 is average. They determine the gradient in a echo by measuring the velocity of the blood flow across the valve and then squaring the number and multiplying it by 4. But they told us the cath gradient would be considered the gold standard and the true value. The other thing they explained was that there is a peak gradient number from the cath which is usually a range, Teddy's was (80-100) and then they come up with a mean number which they didn't calculate in his echo this time. Also they told us they have to correct the cath gradient if it was done under general anesthesia which ours was, because of the extreme slowed and relaxed state the heart it is then. Hope this helps. One other note is that before Teddy's Ross the aortic gradient was higher when they did the cath(which they said was very unusual) because it was leaking (severe insufficiency) and somehow it through off the calculation and the number they got on echo was not accurate. Good luck Hope this helps