A quick update..!

[Abbanabba]

I just received a letter from the surgeon I originally saw in 2003, as I had also dropped him a quick letter (with the results from 1997 & 2004) outlining the situation. He has responded with a full page letter explaining in part why the diagnosis of surgery was changed (apparently the MRI showed the right ventricle is still coping sufficienty with the PV regurgitation) and further explaining why they feel trace regurgitation through all my valves is not something to be concerned with at this time, etc (..."As far as the other valves go, trace to mild is not unusual, in fact a trace is fairly common even in patients with so called "normal hearts". These are not significant lesions."..). As far as the escalation of the PV regurgitation, he said it would be hard for him to make any judgement without actually seeing the Echo himself, but thought this was only a minor step up from "mod-severe" (..I guess "severe" is a problem when the right ventricle starts to suffer..(?)..).

He indicated that although the aortic root was enlarging, that they would possibly wait for it to enlarge to 5 to 5.5 cm. He suggested this was another complication in the timing of a PVR, because if the aorta also needs replacing, then it may be prudent to do them at the same time.... which makes sense I guess.

He also acknowledged my frustration at having to wait around until things were deemed bad enough to do anything (..thankyou!!..) but again reiterated that it is very hard to judge when the time is right, although if my symptoms were worsening, then it may well be time. He assured me my current cardio is quite competent and should be able to "guide me appropriately".

So - although that still left quite a few of my questions unanswered, at least it gave me SOME sort of explanation of things. I will still see my cardio in May to get a response to the other things I wanted to know.

Meanwhile, I'll be dropping the surgeon a letter to thank him for taking the time to clarify some of these things.


Cheers
Anna : )

[kurli]

Hi mate
I so understand where you are coming from. There is nothing worse than being fobbed off. It's ok for the Drs they know what things mean without needing an explination, sometimes they forget that we dont have medical degrees. So I am glad that you have recieved a letter from your old Dr to give you some answers.
Keep persisting because it always helps you to feel better when you know exactly what is wrong or right with you.

[Ross]

Yes Anna your lucky. I don't think any of us here in the States could get ours to take time to do that. It's nice to know, but then again, those findings are now outdated. What is unknown now is what matters most.

[Karlynn]

That was very nice of your former surgeon to respond. I would agree with his comment that symptoms may be an indication that surgery is necessary. There have been posts lately about how it may be a wrong call not to operate on asymptomatic patients, so what does that say about symptomatic? If you find that your symptoms are greatly reducing your quality of life I'm sure you'll be very proactive in looking to surgery.

It's nice that he is supportive of your current doctor. But continue to follow your own intuition on this. Good doctors aren't necessarily good doctors to all their patients. I found that I had doctors that would look at my tests, confirming my reports, and then look at me and not be able to get past the "she's so young, she must be doing okay." mindset.

[inlaguna]

By all means - send your surgeon a Thank You note for his response. And since he seems willing to respond - have a copy of your echo sent to him also. He just might be willing to comment. Good luck & hang in there.

[Marguerite53]

Anna. I'm so glad you persisted with your concerns. I hope it is comforting to hear from the surgeon. It is so hard to know whether a symptom is a symptom, isn't it? Very aggravating. At least now you have some feedback from the type of doctor who is actually going to perform the work. I think sending him a copy of the echo is an excellent idea. Here in the states they do not charge for such things. You never know if he might pick up on something.....

Keep at it, and I hope you are feeling better these days.

Best wishes! Marguerite

[Abbanabba]

Once again I want to thank all of you guys (and gals!) for your ongoing support and encouragement.... and for allowing me to whinge and vent :D Oh - and my whinging is starting to get on my nerves now, so this will be the end of it!!


Ross -
The results I sent him were the "latest" batch with the '97 results for comparison. I guess I was looking for a another point of view rather than a separate dx, which is what I got, and it also answered a lot of the questions which until now had been left unanswered. And yes - I'm very appreciative that he took the time to get back to me and I made sure to tell him that!


Karlynn -
My partner is convinced the reason I don't seem to be getting anywhere is because I look so good (..but maybe he's just trying for "brownie points" - heh heh..). I think it's also difficult to make comparisons between otherwise "healthy" patients with congenital issues and people with acquired heart problems from poor lifestyle choices, or those who are elderly with the natural decline old age brings. This is something I'll be discussing with the cardio when I see her again.


Inlaguna, Marguerite -
The echo was part of the test results I sent the surgeon. It seems I'm just destined to keep waiting for the time being until things are deemed "bad" enough to act.


Cheers all,
Anna : )