Vindication at last...?!

[Abbanabba]

Hi y'all... I (finally) got my hands on my echo results from 1997, when I was still feeling like a "normal" person and I think I now have sufficient evidence to prove my heart has been in decline and is definitely the cause of my woes.

1997:
PV regurg: mild
No regurg noted in any other valves

Aortic root: 2.7 (normal = 2.1-3.7)

2003:
PV regurg: mod-severe
Tricuspid: mild regurg
No regurg in other valves

Aortic root: 3.7

2004:
PV regurg: severe
Tricuspid: mild
Trace regurg now evident in aortic and mitral valves

Aortic root: 4.0


These are the only measurements I have in each of these echos (some have far more info than others), but it seems pretty clear to me that things have taken a definite downward turn since 1997.

I'm going to revise the email to my cardio to include these findings (and as with my ever decreasing HR, I'll list it clearly as above so there is no confusion) and will send this to her tomorrow (..I'm a bit distracted with Valentine's Day stuff to do it this arvo ..).

Cheers all, and happy Valentine's Day (..which is also "Heart Awareness Day" over here..),
Anna : )

 

[Debbrn]

vindication

vindication

Anna,

I hope the docs will finally pay some attention to things. Though the last echo should have been plenty. Good luck. How will you be sending the letter? E-mail or post.

You are a lot more patient than I could have been.

Debbie

 

[MichyB]

Wow ... I don't know much about the significance of root estimates but that seems like a fairly large jump. Your dtrs. better start listening to you ...

 

[Karlynn]

It's strange satisfaction when you are able to prove to doctors that you have been right all along, but the being right means you are not as healthy as they keep telling you you are. I remember that feeling. It's like "Ah ha! I was right! I am sick!" But there also is satisfaction in knowing that what you have been feeling isn't "all in your head". (A statement I heard more than once.)

 

[Nan]

I second that "Wow"...that is quite a change, and really, how could your cardio and docs miss that? Expecially since you are having problems. It is a little scary.

Please let us know what result your e-mail to your cardio has!

Hope this all gets resolved.

 

[prttyprttyprncss]

Strongly worded letter...

Strongly worded letter...

Anna,

Make sure it's a strongly worded letter. (my favorite saying)

You get 'em tiger!

Seriously though, I am glad that you got your results and have black & white proof that things have changed, and not for the better. If it doesn't stir them to action, it should at least give you enough ammunition to justify a darn good reasn why your cardio doesn't think your problems are related to your heart. Like you really need ammunition, a sufficient answer should have come long before now.. or a solution!

Hang in there!

Good on you!

Shelia

 

[tobagotwo]

It's been a long road for you. Doctor to doctor, tests and more tests, the tilt table, even across a continent. Cherchez vérité!

You done good. The numbers are clear that something is happening to you. Now maybe you can see about getting things fixed.

Best wishes,

 

[char2mar]

Anna,

Yes keep at them....a patient always knows when something is just not quite right. When my daughter was born I instinctively knew that something was wrong with her. She just didn't look right. I took her to 4 different doctors and they kept telling me that I was a nervous mom and there was nothing wrong with her. Finally I took her to the Children's Hospital and the triage nurse listened to me and listened carefully to her chest. Turned out she had a piggy back murmur. She was ammitted so fast my head spun. Her chest xray showed that her heart was grossly enlarged. The diagnosis got worse daily. Coartation of the aorta, small mitral valve, hypoplastic aortic arch, LVH, CHF, SVD, AVD. Four days later she died during a cardiac catheter. If she was diagnosised at birth she may have had a better chance. I learned the hard way from that experience so when it came down to my other children's health I made the docotrs prove their diagnosis. Turned out I proved them wrong with two of my other kids health. If I had gone with my son's diagnosis he would have died too. They told me he had gastric reflux and to only feed him a little at a time. I said prove it, so they rolled their eyes up at me but booked him for an upper GI. Turned out his stomach was twisted and folded over on itsself. He had to have surgery right away to fix it or else his stomach would turn gangrenous and he would die instanly. So the morale of the story is: If you do not feel right and you feel that the Doctors are not doing everything they ought too, then challenge them to prove their work. (The only problem is trying to find a doctor who will listen to you, most of the time their egos get in the way.)

Char

 

[ladyofthelake]

your echo reports

your echo reports

Anna,

I am very sorry to see that your reports show progressing valve regurg. It's good to know your were persistant with your cardio's office to get the report copies. I will never understand why professional's that make a commitment to help others with their health seem to let info like this slide by and not tell their patients about the results. (It may be my own weird traite but I believe it should be considered a crime that results in a penality) At the very least, now you are aware that this may be something that you need to get more help with, so I am saying a prayer and sending you good wishes for you to get this best help there is. I hope you get attention from your cardiologist with the email. Best Wishes,

Lisa

 

[Abbanabba]

Wow ... I don't know much about the significance of root estimates but that seems like a fairly large jump. Your dtrs. better start listening to you ...

I know it's only just outside "normal" parameters, however progressive expansion of the aortic root and progressive regurg are two of the main indicators determining the timing of surgical intervention. I'm still astounded I've been told things are "satisfactory"!!

It's strange satisfaction when you are able to prove to doctors that you have been right all along, but the being right means you are not as healthy as they keep telling you you are. I remember that feeling. It's like "Ah ha! I was right! I am sick!" But there also is satisfaction in knowing that what you have been feeling isn't "all in your head". (A statement I heard more than once.)

OH YEAH!!! All day yesterday I was oscillating between being furious and somehow elated - it was all a bit emotional. It's just that last bit of information to cement what I already knew and to give me sufficient evidence to make them step back and listen, rather than telling me they're the doctor and they know better.

Make sure it's a strongly worded letter. (my favorite saying)

Ha ha ha - this is also one of my very favourite sayings.... so much so that everyone teases me about it! I'm always ready to write a "strongly worded letter" to someone My letter is 3 typed pages (as well as the chart of my HR) and I've tried to be very direct without being rude or accusatory - I figure there's no point p*ssing her off, but I've definitely made my concerns and frustrations VERY clear, and also made it clear that I expect some dialogue about this.

Yes keep at them....a patient always knows when something is just not quite right. When my daughter was born I instinctively knew that something was wrong with her. She just didn't look right. I took her to 4 different doctors and they kept telling me that I was a nervous mom and there was nothing wrong with her

I am so sorry to read about your daughter. I can't imagine how heartbreaking that must have been for you - especially when you knew something was amiss and were ignored. My cousin's daugher almost died from a burst appendix recently because she was misdiagnosed and it was only because my cousin insisted that things be checked that they were caught in time. Medical degree or not, I think I have a much better understanding of how my body feels than any doctor and I wish they would acknowledge that.

Meanwhile, I hope you have been getting somewhere with your own issues.


Debbie, Nan, Bob & Lisa -
Thank you all for your ongoing support and best wishes. I'll be sure to keep you posted when (..and I'll say "when", not "if"..) I hear back from my cardio.


Cheers all,
Anna : )

 

[McCln]

I hope that you will be able to get these issues resolved now that there was evidence that there were problems going back. Keep us updated and I will pray for your health.