Am I wrong to be this fuming all the time?!?

[lynnconnolly]

Hello all, time for another rant at the medical profession if I may! My employer asked for a medical report from my GP - as I'm off work and have been since I got ill in March - which he's duly done. A lady phoned me yesterday to tell me it was done and I could go and read it before it went off to my employer. The GP wrote the report on 'advice' from my cardiologist.

So, I've just been to read it and found out that I have aortic stenosis. I had not been told this. As far as I knew, I had mitral and aortic regurgitation. The thing that's maddened me most is that my cardiologist continually says he can see no reason why I have chest pain. I now know that stenosis commonly causes pain, so a) I'm livid that the cardiologist saw fit not to tell me I have stenosis for some reason and b) that he's made me feel like a hypochondriac by constantly denying any reason for me to be having pain!!! I'm going to write off to get my records from the hospital just in case there's anything else he hasn't told me, like that I've got rabies or something but it's on a need to know basis!

Oh f*** I'm so angry - again! I'm sorry to sound off on here yet again, and for the profanity, but I am so mad I don't know where to put myself. It's no wonder he's doubled my Ramipril... it's his sodding fault that my blood pressure's going through the ceiling!

Thanks all for letting me go on and on and on....

 

[Ross]

Hon this is the exact reason why we tell people to get copies of their records. You learn alot more from those copies then you do from a visit to the Doctor. There are lots of things they don't tell us.

 

[lynnconnolly]

Doesn't it drive you nuts though Ross?? Who do these people think they are! Like a medical degree equates to being able to apply for the post of God.

I've written the letter asking to see my records so by the time they've got around to allowing it, I'll probably be about 60, but I'll feel a lot better once I've seen them.

I hate being treated like a mushroom - kept in the dark and fed bullsh**.

Thanks for your reply Ross

 

[Bonzo Dog]

Lynn, others may contradict this, but, aortic stenosis never caused me any pain. It was quite severe prior to my first op. The general tired all the time malaise, you have previously described as suffering yourself, was the main symptom. Pain no. On the technical point of pain causing, based on my experience, I would have to back the Doc up.

You are right to be angry at the lack of transparent info. I would just caution against reading too much into it and getting stressed.

 

[lynnconnolly]

Hi Simon, thanks for your reply. I can't help getting stressed out - it's all driving me insane. I realise that not everyone will have pain - and maybe this isn't the cause of mine - but some people do, so his denying any knowledge of why I may be having pain is what's annoyed me... as well as not telling me the full diagnosis.

I'll know more when I see my records but I really don't think I should have to do that just so that I can get a full picture of my diagnosis. I dither constantly between thinking it's all in my head and alternately, being certain it's not all in my head. I feel like I'm fighting for some damn thing all the time and I hate it.

Anyway, thanks for your reply. Hope all's well with you?

 

[perrypiratesdad]

Ditto

Ditto

Ditto to what Bonzo said. When I had my Aortic Stenosis, I didn't have pain either, just being extremely tired all the time.

As a general rule, I always ask for a copy of my visit from the doctor so I can add that to my personal records that I keep. I find by asking this each time the doctor is always willing to tell me everything at my visit.

- John

 

[paco512]

Aortic Stenosis did cause my pain..

Aortic Stenosis did cause my pain..

I can say for certain that the stenosis (.6/cm) was causing my pain. We even did a heart cath to make sure there was no blockage causing this problem before the surgery. Of course there was the weakness and general tiredness... depression and worry about the surgery too.

Its a shame that health care providers can't get all the information to you when you want it. But as best i can tell (in the USA) the insurance companies are running the show. The idea of washing myself with the special anti microbial soap and driving myself to surgery a couple hours before they put me under sound to me like a greedy insurance company. I bet they would like it if i made the first couple if incisions too.

I don't think the health care providers are allowed the time to review and discuss with the patient anything beyond 10 or 15 minutes worth of info. I can see it in their eyes. They are run ragged and everything is on such a tight time line that they are guaranteed to be 2-3 hours late for every appointment. Consider this; when they are required to put something in writing may be the only time they can sit back and properly review the details of the case.

Paco512

 

[lynnconnolly]

Hi John and Paco and thanks for your replies. It's odd that some people have pain and some don't, but thanks to you both for telling me your experiences.

Paco, over here, as you probably know, we don't rely on insurance - unless we go to see a doctor privately - but yes, our doctors and nurses are all busy all the time. That said, there's lot of times when I'm just sitting there for ages while my cardiologist sits reading my notes and deciding on the next move. I just object to not being privvy to all the facts about my illness... it's so patronising to have someone else make judgements about what I do and don't need to know.

It does seem harsh and weird that you have to prep yourself and get yourself to hospital literally just before your surgery. I hope it goes well for you when you do have to do all that though.

 

[Curtsmum]

Hi Lynn, know just how ure feeling, i found out about Curt's tricuspid regurgitation through a letter but i don't know if it is severe yet. He as mitral stenosis and regurgitation. He often gets pains in his chest, when i rang the hospital about them they said it wouldn't be connected to his condition, so i really don't know. Wishing you all the best, stay strong. We have a appointment on wednesday evening with his consultant and i'am ready to get some answers. Take care.

 

[lynnconnolly]

Hi Paula, I'm sorry to hear that you're finding Curt's got more problems. It must be very hard on you, Curt and all your family, and as you say, to find out in a letter something the doctor didn't tell you is not good. I don't know how they can say that stenosis isn't the cause of pain. I did a really quick google search on 'valvular stenosis chest pain' and nearly every article I saw said that chest pain was common. It's also common not to have it, but nonetheless, when it's there, why must they deny it?? It makes no sense to me at all!

I hope it goes well on Wednesday. Let us know how you go on. I'll be thinking of you.

 

[Superbob]

Lynn,

I never had chest pain with my aortic stenosis -- at most, I had mild shortness of breath. However, I discovered this article from Medicine.net indicating that 1/3 to 1/2 of people with aortic stenosis do experience chest pain at one stage or another. And it discusses the kind of pain. Hope this is helpful:

http://www.medicinenet.com/aortic_stenosis/page3.htm

And I second what Ross said: always get the records. They contain much information. I never did that until I joined vr.com and learned the value of doing so.

 

[lynnconnolly]

Thanks Bob, that was a really good article and very enlightening. Thanks for taking the time to post it

 

[WendyD]

Hi Lynn,
So sorry to read that you are feeling so frustrated. I agree that the best thing to do is get hold of your records.
When my husband went into hospital for his AVR we were only given a booklet on "What to expect for the first week after surgery" , when Ernie was discharged 8 days later !! (By that stage I was a nervous wreck !! )
Finding this website was a Godsend as I received more info , advice, & support here than anywhere else.
Try and take it easy
Very Best Wishes
Wendy

 

[ctyguy]

Lynn,

I also had stenosis and in thinking back I also had instances where I had chest pain. Usually it was from exercising, even light to moderate. But in thinking back I can also remember times just sitting where I would get a feeling that I thought was indigestion, now I know that that was not the case.

I totally understand why you would be so peed off. I am the type of person who wants to know everything, I asked ALOT of questions before surgery, while I was in the hospital and in my followups. Sometimes I could tell that I was probably rubbing the docs and nurses the wrong way but I didn't care, I wanted to know the answer to my question. For me I thought the whole thing was overall a good experience. Im very thankful that I have excellent health insurance. I read your posts and others from countries where the healthcare is nationalized and I can sense the frustration. Seems like getting appointments take months at times and obviously getting detailed information is a huge challenge. There are people in the US who think we should go the same route but based on what I've read I think the system we have here in the US is better even if its incredibly expensive to the average person.

 

[lynnconnolly]

Hi Wendy, thank you for your post. Sorry to hear you and Harry had such a bad time - it's horrible when you don't feel informed isn't it. And I agree about this site; it's been invaluable to me. I don't know what I'd have done without it.

On an entirely seperate note, my brother lives in Silverdale. That anywhere near you by any chance?

 

[WendyD]

Hi Lynn,
Yes Silverdale isn't that far away from us, we are in West Harbour, (NW) of Auckland City and your brother is directly North.
Ernie sometimes plays golf near Silverdale.
Small world isn't it ?
Got to go to work now - 7.30 am Friday here !!
Take care
Wendy

 

[lynnconnolly]

I'm soooooooo sorry, I just noticed I put 'Harry' not 'Ernie'. Brains of a rocking horse! My Dad was called Ernest With all this stuff in common, we're practically related!

It is a small world for sure Have a good day at work.

 

[lynnconnolly]

Lynn,

I also had stenosis and in thinking back I also had instances where I had chest pain. Usually it was from exercising, even light to moderate. But in thinking back I can also remember times just sitting where I would get a feeling that I thought was indigestion, now I know that that was not the case.

I totally understand why you would be so peed off. I am the type of person who wants to know everything, I asked ALOT of questions before surgery, while I was in the hospital and in my followups.

Hi, yep mine's very like indigestion sometimes. It kind of rises from my chest and back up into my throat, and mine is most often after exertion or stress can bring it on too.

I do try to ask questions but most often, they are just left hanging in the ether, literally not getting answered, or I get a 'mm yes, yes' and a head nod. No answers at all.

I've always had reservations about any form of medicine where wealth was directly related to the quality of treatment one might expect however I'm rapidly changing my mind. We may all be equals in the nhs, but that also sometimes means we're all treated equally as shabbily. With your system, you can freely 'shop around' and if you aren't happy or satisfied with the care you receive, you can go elsewhere. For us here, that is quite a huge thing to try to do and it doesn't go down well often with the medical personnel.

Thanks for taking the time to post

 

[Magic8Ball]

Sounds like you need a change of cardio.

This really is a tough enough journey to go through without a lack of trust for your tour guide.

It's sad but it is difficult to find one that can communicate like a human...i was lucky and found a great one straight off the bat....pure luck...but have heard some terrible stories about arrogant and stubborn cardios here and in person.

You wouldn't continue to take your car to a garage for a service if they only told you through an aquaintance that you probably had a faulty exhaust...why put up with it for your body.

For what its worth, i had stenosis and regurg and a bloody big anerusym and had zero pain....just the luck of the draw i guess.

You need to let go of the anger and frustration and become a calmer person through this journey, it will help your recovery....if you need to switch cardios to acheive that then it must be done.

Regards.

 

[lynnconnolly]

You need to let go of the anger and frustration and become a calmer person through this journey, it will help your recovery....if you need to switch cardios to acheive that then it must be done.

You're absolutely right. Trouble is, if I ask for another cardio, chances are I'll have to travel a long way for consults and as I'm at the hospital every two weeks at the moment, it'd be a nightmare.

As to becoming calmer, you're right about that too - I just can't seem to do it I get so angry about these things, but it doesn't do me any good at all.

Thanks for your reply - have a good day