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

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Hi Lynn, both times I was stenosed I experienced twinges during my PVC episodes, prompting my doctor (prior to AVR1) to prescribe nitro. I didn't take it after the first use since I got such an extraordinary headache from the wallop it gave me.
If you have a thickening of the atrial septum your mitral valve may be getting caught up with that malformation, left ventricle hypertrophy from your aortic valve stenosis could cause discomfort as well. It's well known that we all take the steps through this disease as uniquely as our fingerprints. Pain is a normal sign and symptom as is not having pain. Vive la difference!
 
Hi Pamela, thank you for your post. As you say, we're all different but it's really helpful to me to know other people's experiences.

I was given nitro when I first went into hospital and it helped me a lot. However, given that my cardio won't even acknowledge that I'm having pain, I doubt he'd listen if I asked for a nitro spray, so I've never bothered to ask.

I've sent off a request to see my notes so I'll be able to know the full details of what's happening with the valves then. As things stand now, I don't really know a whole lot. I find out things in dribs and drabs at the minute. I'm sure once I get all the facts and figures, I'll be posting on here to get everyone's interpretation - which I have to say, I'll put more faith in than anything my cardio says.

Thanks again for your reply
Lynn
 
Hello Lynn

Hello Lynn

So sorry that you had to find out about your stenosis in that manner.I learned my lesson the hard way too a long time ago. When I was 24 I had breat cancer. I felt that I was not being told everything. I didnt know then that I was allowed to get my medical records. Well, I decided to go into the medical field an become a medical assistant. I worked for 20 years as assistant, billing manager, and practice manager. Now , every time I have a test or see the dr. I wait a few days , call them up and tell them I would like them to send me a copy of the test or the visit I just had because I know the dr has not told me everything. On reason: he is in a hurry to get to the next patient because he sees too many in a day. Another reason, he doesnt think I will know what he means anyway, just gie me a pill .
I have found out more from those reports than from the docs mouth.
 
gmnordy said:
So sorry that you had to find out about your stenosis in that manner.I learned my lesson the hard way too a long time ago. When I was 24 I had breat cancer. I felt that I was not being told everything. I didnt know then that I was allowed to get my medical records. Well, I decided to go into the medical field an become a medical assistant. I worked for 20 years as assistant, billing manager, and practice manager. Now , every time I have a test or see the dr. I wait a few days , call them up and tell them I would like them to send me a copy of the test or the visit I just had because I know the dr has not told me everything. On reason: he is in a hurry to get to the next patient because he sees too many in a day. Another reason, he doesnt think I will know what he means anyway, just gie me a pill .
I have found out more from those reports than from the docs mouth.
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Hi, I'm very sorry to hear about your struggles, and yes, you're right; it is a lesson learned and I'm going to feel a lot more in control once I've seen my records. Having your life literally in someone else's hands is unnerving enough, without fearing they are witholding information also.

Thanks a lot for your post
Lynn
 
I've read a lot about how patients in the UK feel they don't have any right to their medical information. You're not alone. A lot of people around the world are under the same impression. It's up to us to educate our fellows and let them know that they have a RIGHT TO KNOW.

According to the procedure brochure on obtaining your medical information from the NHS, you have a right to your personal information without exception and if the agency or office refuses to comply with your request their denial must be explained to you in terms of the way this applies to how it is best for the Public Interest.

Protecting doctors from litigation is not a criterion for passing or failing this test. Your personal medical information (perhaps actual monetary expenditures could be withheld) isn't a national security issue and shouldn't be treated as such.

Fill out the release forms and wait a reasonable amount of time for the paperwork so as not to be labelled "vexatious" and if they haven't complied or notified you of withholding, then ask about your request. If they can't satisfy you, as a last resort, complain to the authorities. All of this info is available through a google search "patients' rights UK".

Patient Confidentiality and Access to Health Records. You may be charged a fee for printing/copying or burning to a cd but only for the actual materials and work involved and not to provide a profit to the agency providing you with these records.
 
pamela said:
I've read a lot about how patients in the UK feel they don't have any right to their medical information. You're not alone. A lot of people around the world are under the same impression. It's up to us to educate our fellows and let them know that they have a RIGHT TO KNOW.

According to the procedure brochure on obtaining your medical information from the NHS, you have a right to your personal information without exception and if the agency or office refuses to comply with your request their denial must be explained to you in terms of the way this applies to how it is best for the Public Interest.

Protecting doctors from litigation is not a criterion for passing or failing this test. Your personal medical information (perhaps actual monetary expenditures could be withheld) isn't a national security issue and shouldn't be treated as such.

Fill out the release forms and wait a reasonable amount of time for the paperwork so as not to be labelled "vexatious" and if they haven't complied or notified you of withholding, then ask about your request. If they can't satisfy you, as a last resort, complain to the authorities. All of this info is available through a google search "patients' rights UK".

Patient Confidentiality and Access to Health Records. You may be charged a fee for printing/copying or burning to a cd but only for the actual materials and work involved and not to provide a profit to the agency providing you with these records.
Click to expand...

Hi Pamela, we do indeed have the right to see our records and I've recently applied for mine, but it's a lengthy process, it can be costly and each time we want to see a new item - such as the results of the latest test - we have to reapply. I saw my records years ago and was watched like a hawk while I read them. I had to attend the office at their convenience and as I say, was watched throughout. It's not pleasant and they make it deliberately so, which I suspect is to discourage us from asking. They are also entitled to remove anything that they consider could affect us negatively, physically or mentally, so we're never entirely sure that we are in fact see the entire record.
 
To answer the question (are you wrong), hell no. I personally think doctors are obligated to tell you what's wrong with you if you couldn't know without their help. Like tell me now so I can take action to protect myself like , i dunno, eating better. I don't know why they try to hide stuff. For me, that just causes me to feel uncertain and it makes the doctor feel untrustworthy.
 
AaronJ said:
To answer the question (are you wrong), hell no. I personally think doctors are obligated to tell you what's wrong with you if you couldn't know without their help. Like tell me now so I can take action to protect myself like , i dunno, eating better. I don't know why they try to hide stuff.
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Thanks Aaron :) I often wonder if they think we need protecting from the truth or if it's that they think we aren't intelligent enough to understand what they're saying! It's part of their God complex I think. They seem to enjoy feeling superior to us mere mortals who don't have a medical degree. I know not all doctors are the same - my gp is brilliant - but consultants seem to be particularly prone to being uber-up themselves :)
 
The first site I went to when I was looking at the FOI act procedure guidances for the UK stated that maximum << note MAXIMUM fees are 10 pounds for computerized records and 50 for copying (xrays and other imagery can be a bit more expensive to obtain hard copies of). There should be no fee for simple access, it costs them nothing to provide you with a reading.

Seriously, research your right to change physicians and get away from anyone who doesn't treat you like an intelligent adult.
 
Doctors can take things out of your medical history if they think it will affect the individual negatively ??? That is an absoultly terrifying thought to me. Any individual should have the right to see every test result or doctors comments that applys to them no matter how bad it may be. Is there the prospect of getting copies of things as they happen and building your own history ? Maybe bite the bullet and pay the $$ to get the initial copy of your history and then get copies of things as they happen ?

Im sure in the US doctors may remove things from time to time from patients folders but I do think that is the exception. And if and when it does happen its probably to cover their own butts, I don't think they are doing so to ensure the patient doesn't have anxiety over what is there.

After reading all these posts I can say with all honesty I think I would be the worlds worst patient if I had to deal with what your dealing with in a Nationalized medical system. Im a patient person most of the time but having people trying to tell me what THEY think is best for me and then dismissing me when I disagree or challenge their opinions with questions ? I can see that situation ending very poorly.....for them:mad:
 
pamela said:
The first site I went to when I was looking at the FOI act procedure guidances for the UK stated that maximum << note MAXIMUM fees are 10 pounds for computerized records and 50 for copying (xrays and other imagery can be a bit more expensive to obtain hard copies of). There should be no fee for simple access, it costs them nothing to provide you with a reading.

Seriously, research your right to change physicians and get away from anyone who doesn't treat you like an intelligent adult.
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Hi Pamela, I'm so sorry that in my previous reply to you I didn't thank you for taking the trouble to look up this information for me. It was very remiss of me and I can only say that I am very grateful to you for taking the time to try to help :) It's extremely kind of you.
 
Its not good that you have had poor treatment, you should be told all that is necessary for you to make adult decisions about your health. I really dont think its helping your cause by getting angry and upset about it though. You are right it will be sending your blood-pressure sky-high.....Somehow you need to detatch yourself, calm down and become assertive instead...

PS. when does BB08 start? I'm looking forward to following your blog.
 
I am in the middle of a medical negligence case at the moment and my lawyers have been obtaining copies of my medical records from the five hospitals that I was treated in during 2005. I have now seen excerpts from the notes and to be honest had I seen them prior to my OHS then I would probably have freaked out. My cardiologist at that time expressed an opinion in my notes that he thought me unlikely to survive a general anaesthetic. It is no wonder that my GP told me that he hadn't expected to see me again when I turned up to see him a few weeks after my OHS.

Interestingly enough, the notes from the hospital where I had treatment (non cardiac) which I am sure caused my health problems had 'lost' part of my notes. The notes they have 'lost' were relating to the third treatment which I had and the notes for my second treatment (the one that caused the problems in my opinion) read just like the notes OUGHT to have read for that third session.
 
I have only one piece of advice. Feel free to very calmly and politely remind your doctor that he or she does work for yor and that means that you should be well informed and satisfied and if they cannot provide this for you that you will find new doctors to give your money to.
Lettitia:D
 
aussigal said:
Its not good that you have had poor treatment, you should be told all that is necessary for you to make adult decisions about your health. I really dont think its helping your cause by getting angry and upset about it though. You are right it will be sending your blood-pressure sky-high.....Somehow you need to detatch yourself, calm down and become assertive instead...

PS. when does BB08 start? I'm looking forward to following your blog.
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Hi, yeah you're right; I'm not doing myself any favours at all getting so wound up about it. I've written my cardio a long letter which helped me vent off some steam... I've just got to decide whether to post it now :)

Thanks for asking about BB. It starts on June 5th :D Very excited.... :D
 
sue943 said:
I am in the middle of a medical negligence case at the moment and my lawyers have been obtaining copies of my medical records from the five hospitals that I was treated in during 2005. I have now seen excerpts from the notes and to be honest had I seen them prior to my OHS then I would probably have freaked out. My cardiologist at that time expressed an opinion in my notes that he thought me unlikely to survive a general anaesthetic. It is no wonder that my GP told me that he hadn't expected to see me again when I turned up to see him a few weeks after my OHS.

Interestingly enough, the notes from the hospital where I had treatment (non cardiac) which I am sure caused my health problems had 'lost' part of my notes. The notes they have 'lost' were relating to the third treatment which I had and the notes for my second treatment (the one that caused the problems in my opinion) read just like the notes OUGHT to have read for that third session.
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Hi, thanks for your post. I can understand what you mean that I might see info I don't want to see, but in that regard, I already knew that they thought I'd die if I had the surgery when I was first ill - they told me at the time - and it's awful, but not surprising, that your notes relating to the part of your treatment that could incriminate someone have gone astray.

I get so little info from my cardio though that it's the only way. My GP is more than happy to show me info from my records but the hospital don't send him anything! I went to see him a couple of weeks ago and asked if I could see a copy of one of my echo reports and he showed me on-screen that all they've had from the hospital was my discharge letter. It's shocking really. You'd wonder how my GP is supposed to monitor my meds etc., when he has next to no info about my condition. My aortic problems weren't even diagnosed when I first left hospital so consequently, came as a total surprise to my GP when I told him about that in addtion to the mitral valve stuff.

Lettitia, as Sue says, although we contribute all our lives to the NHS, we don't directly pay doctors so we 'get what we're given' basically.

Thanks again for your posts :)
 
Hi, Lynn, i wrote a letter to the consultant a couple of years ago, we didn't get anywhere they just cover each others backs. Goodluck.
 
Curtsmum said:
Hi, Lynn, i wrote a letter to the consultant a couple of years ago, we didn't get anywhere they just cover each others backs. Goodluck.
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Hi Paula, yep I suspect he'd probably ignore it. I think what I might do is go to my gp and tell him I want a second opinion and see where that goes. Mind you, again, I do wonder if the second opinion cardiologist will just agree with everything mine's said anyway. It's a pretty small community over here from what I can gather, as in, every cardiologist knows every other, certainly regionally anyway. Frustrating isn't it.

Hope Curt's doing ok at the mo,

Lynn
 
I don't pay a doctor either however, my PCP still works for me. Without my consent to use him as my doctor he wouldn't be able to bill the health care system on my behalf.

I think your doctors are treating you poorly and if you have evidence that they're messing with your records it's time to involve your parlaimentarians. You must have a representative in government that you can address with these issues. The whole country can't be corrupt, can it?
 
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