A very long RANT....feel free not to read....

[EireCara]

Hi Friends.....Well, I had an app with my cardio on Tuesday. I didnt mention it beforehand because I have asked you all many times for help in handling appointments with these guys and got LOTS of good advice. I actually wrote some excellent tips that Nancy (thank you Nancy) gave me into a little book that I carry in my handbag, soo,I figured I know how to do this stuff now.....WRONG.....the short version is that Iv been sent home to cut my betablocker in half for 2 weeks then stop it completely. Iv been taking a betablocker for about 17 years due to arrhythmias, I have a.fib and SVT. I even had to have 2 stress tests stopped due to VT and was admitted to hospital immediately after one of them.

I really really tried to explain to this man HOW UNWELL I FEEL, HOW I HAVE TO HAVE A 2 HOUR NAP EVERY DAY, HAVE CHEST PAIN, SOB, PAIN IN RIGHT LEG EVERY SINGLE DAY.among other things.... but he said the betablocker can do that to some people, come back to see me in 6 months.

He did order an echo and my pressures were down somewhat from the last one....down from 45-60 to 37-45. I was pleased about that but then back at the consultation he said that echos were too sensitive (in relation to my moderately leaking MV) and unreliable when reading 'heart pressures'. So, I said what about the right cath....and he said..''if I moved the wire 5 times in your heart whilst doing the cath I would get 5 different pressure readings''.

So, does that mean theres no way to know what the pressures in my heart REALLY ARE. Are they still 45-60 or higher seeing as the echo cant be trusted.


The tech doing the echo asked me was I SOB. And he also asked me this question which is bugging me.....he said DID I GET SHARP PAINS IN MY CHEST,LIKE STABBING PAINS......Yes I know I should have asked him why he asked me that, but Im so used to NOT BEING TOLD that I didnt even venture to ask.

When I went back to the consultation room with my echo results the cardio looked at them and went back to the room where I had it done and was talking to the tech for about 7 or 8 minutes ???

Then he sent me on my ''not so merry way''.

Im devistated. I cried behind my sunglasses coming home on the train.I feel like Im out of plans, out of ideas, and out of energy to fight them. I just dont know how Im going to drag myself out of bed every day feeling like this. Its hell on earth, and if I didnt have kids who need me I wouldnt want to be here.

To ANYONE who has taken to time to read this.....THANK YOU.

 

[bvdr]

I'm so very sorry that you feel cast aside from the medical community. I've felt like that before and it causes much distress. As hard as it is, I think you may need to call up the Cardio's office and perhaps ask to speak to the nurse. Tell her or him what you are feeling and ask for some concrete instructions as to what to do. A good opener question might be something like..."I've been instructed to cut my beta blocker dose in half and then to stop it in 2 weeks. Then what am I to if I continue to feel so very very poorly? Also I need to know what will be preventing a return of the potentially lethal arrhythmias that the beta blocker is supposed to be suppressing?"

Let's hope that getting off your beta blocker may actually help you feel better. Again, I am just so sorry that you feel so bad. As hard as I it is I think you might really have to push this issue.

 

[bvdr]

Also...make sure you get a copy of your echo report. Here in the states they have to give you copies of your medical records when you request them but I don't know what the rights of patients are in the UK.

 

[lynnconnolly]

Hi Jacqui, good to hear about Thomas's appointment, thanks for letting me know, but I'm so sorry you've had this experience. I too end up furious after nearly every visit to my cardiologist. It's soooooooooo hard when they just plain refuse to listen, and I understand how disheartening it is when you have to 'plead your case' to them just to make them believe what's happening to you. It automatically makes me feel like a kid faking stomach ache to get out of school.

It's also unfair that when they get a result from some test or other that THEY want - as in, one that gets us out of their office asap - it's THE most reliable test ever. However, when we have a test that evidentially supports what we are telling them, then THAT test isn't reliable... it's open to interpretation, yada yada.

Do you have a good relationship with your gp? Reason I ask is because, thank God, I do, and my plan is to write a letter to him telling him the problems I'm having with my cardiologist as I see them and how let down I feel by the way he ignores what I'm saying and even deliberately witholds information from me. I could just go see the gp but I know I won't say everything I want to - or be given enough time! - so a letter seems to be the way to go.

I figured what I'd do is put it all down, then ring the surgery like a few days later and ask to speak to him to see if he's read it. If he wants to discuss it, then I'll suggest I go in and see him. Also, you are entitled to ask for a second opinion. I know how hard it is to do though so that may not be an option.

I think you should see the gp to discuss how miserable you're feeling too. It can't be helping things to be so upset and down, understandable though it is.

All the best Jacqui

 

[Karlynn]

Jacqui - I'm so sorry this is so devastatingly frustrating for you. Please don't give up on trying to feel better.

If possible (and I know it's hard) try doing some deep breathing. If you believe in God - you might try inhaling slowly and thinking "love of God" and exhaling slowly "peace of God". If you are not a believer - try "feel peace" "live peace" or any other words that come to mind. These types of exercises really helped me relax a bit and destress a bit when I was my sickest. I was getting so overwhelmed by not feeling well and not finding someone to believe me that I think the stress was adding to it all. The exercise didn't cure me at all, but it did help me focus.

You and your son remain in my prayers.

 

[BDMc]

Love and Sympathy

Love and Sympathy

Jacqui, This really sucks! The lack of "care" is astounding these days.Keep up the rants. I certainly want to know how you are doing, and what's going on. My love and sympathy to you and your family. Brian Mc

 

[Susan BAV]

Jacqui, I'm sure there are very many of us here who really feel for your situation and hope things get better for you soon. Hopefully this med adjustment may be helpful?

 

[susieq14]

Jacqui,

You can rant here as often as you like and don't ever apologize for asking for advice and assistance. I am always flabbergasted and po'd every time I read one of your posts about the awful treatment that you and Thomas must endure. I can't believe what you have to put up with.

I'm sending some BIG HUGS "across the pond" to you with my very best wishes that you somehow get some answers and resolution.

Take Care!
Susie

 

[Cooker]

Jacqui ...I' sorry for what you are going through....I have no answers but how about a hug from the Chimp.........
((((View attachment 5799))))

 

[Superbob]

I am very sorry that you are getting advice you do not have confidence in, Jacqui. Pardon if you have explained this before, but is it totally out of the question to fire this cardio and get another? Hope everything improves for you.

 

[Curtsmum]

Hey Jackie, sorry that you didn't get the answers you wanted from your appointment. Really hope things work out for you. I know how frustrating this can be, its our turn on wednesday and i like you am going ready for answers but i wont hold my breath. Sending you all the best, please stay strong.

 

[WayneGM]

Sorry to hear the frustrations continue. Hang in there.

 

[ALCapshaw2]

And to think that the British and Canadian Nationalized Health Systems are being touted as a Model WE in the USA should aspire to ! God Help Us ALL !!!

 

[pamela]

And to think that the British and Canadian Nationalized Health Systems are being touted as a Model WE in the USA should aspire to ! God Help Us ALL !!!

Al,
It's not all doom and gloom. I've had my procedures in a timely and professional manner. You cannot tell me that by virtue of a patient paying out of their own pocket (or into a private health insurance plan) that automatically makes a doctor or hospital better. There are absolutely no assurances in place that because you pay more you will get a better quality of professional. Only common sense and research can tell you when you've opted for the best course of action. Besides, there's no law in place preventing any of us from going to the place where we can get the best care, if we want to pay for it.

What socialized health care does, is provide everyone with access to a guaranteed minimum standard of care at a cost affordable to even those without the ability to pay for it. How can you resent that possibility?

 

[Dawn-Marie]

Jacqui ~ Sorry to hear of all the problems you are having with your health care. I hope they get resolved soon. Go ahead and rant all you want...i'm sure we all understand as lots of us have had problems ourselves getting the proper care.

Best wishes for better care in the future ~~hugs~~ Dawn-Marie

 

[kfay]

And to think that the British and Canadian Nationalized Health Systems are being touted as a Model WE in the USA should aspire to ! God Help Us ALL !!!

Amen Al. Having lived in the UK for 3.5 years there is no way in hell I would give up what we now have here in the US for that system. When we first moved there, I looked in the phone book to try and find just a GP for us...there were none listed. I couldn't for the life of me figure out how to find one . I literally got in my car and drove around until I found some and went in and asked them how did I go about making an appt. I found the whole making an appt. with specialist thing to be very difficult and you really don't have any say in who you get. It is true that everyone has access to care, but at what cost. When we were there, the time quoted for something like a knee or hip replacement was around 2 years. They also decide, based on your age and other things what treatment you may get, if any. I know our system here has it's problems as well, but I'll take ours over theirs anyday.

 

[westie]

public health systems

public health systems

hi jacqui

very sorry to read about your medical treatment problems; seems irelands public health system is similar to new zealands; free, instant and probably excellent trauma treatment for road accident, heart attack victims etc but poor to terrible treatment for what is quaintly refered to as "elective treatment".
e.g. wait 6 to 12 months to see a cardiologist

today our largest sunday paper had a long story about hospitals and urged patients to be more aggressive in their dealings with medical providers and demand full explainations of diagnoses and treatments and copies of all reports etc

does ireland have "patient advocates" you could turn to for help?

another good idea is to always take a support person with you when you go to hospital and keep them with you at all times; they should be a determined. if not militant person. actually i have a big mouth. but my wife always accompanies me to very appointment and sits in on all tests like echos etc. in my case this is so i do not suffer the slow death of a 1000 questions afterwards! i am sure you are entitled to a support person.

have you considered writing to your minister of health or contacting your local member of parliament? that can get quick results!

surely the hospital will write to your gp about the results, make an appointment with him and get him to explain them to you and ask him to print out the report for you. if there is an obvious screw up, the gp will be able to get you another appointment

and even though it is a public hospital, you should be able to ask for referal to another cardiologist

but if you can scrape up the cash, the best solution is to give up and go private............

 

[sue943]

"And to think that the British and Canadian Nationalized Health Systems are being touted as a Model WE in the USA should aspire to ! God Help Us ALL !!!"


Not wishing to hijack this thread BUT EireCara does NOT live in the UK and does NOT come under the NHS.

I don't live in the UK either but for some of our care we get transferred or referred to hospitals in the UK and DO come under the NHS. Three years ago I was transferred to an NHS hospital and was treated under that system. My local cardiologist didn't expect me to survive a GA, but I am here and the treatment I received in two NHS hospitals was second to none.

The NHS has its faults but no one dies for lack of money to pay for treatment, no one waves a form at you in the ER before treating you. Please stop knocking the NHS especially in regards to EireCara's experiences, I repeat, she is not in the UK and isn't being treated by the NHS.

 

[EireCara]

You are quite right Sue, I do NOT live in the UK....I live in the Republic of Ireland, but our health system is the same as yours. It seems to be that when you become VERY ill and in desperate need of medical care, you will get it, but the road leading to this is very bumpy indeed. I have family and friends living there and from what I hear there are just as many horror stories under the NHS. Aside from hearsay, there have been numerous programmes made by the BBC which show this to be a fact.. One can also hear the news on almost a daily basis how the NHS is in crisis....long wiating lists for elective operations, long waiting times for out-patients appointment, and dirty hospitals.

I am happy for you that you had a good experience with the NHS and obviously feel protective of them, but I am also convinced that many many people in the UK have similar stories to my own.

 

[ALCapshaw2]

And to think that the British and Canadian Nationalized Health Systems are being touted as a Model WE in the USA should aspire to ! God Help Us ALL !!!

It may have been better and wiser to simply say Nationalized Health Care Systems without referenceing specific countries (and I know that Ireland is not part of the UK .

The more important point relates to the ability we in the USA currently have to simply call ANY Doctor or Specialist, tell them of our condition, and usually be invited to send in our latest Test Results for the Doctor to review before coming in for an appointment.

I have done this in several instances and been accomodated in a VERY SHORT time with either an office appointment or preliminary Telephone Interview with the Doctor (sometimes in 1 WEEK!) HarleyGirl had a similar experience in tracking down an Aortic / Aorta Specialist who agreed to take her as a surgical patient on her own referal.

For those with Complex or High Risk Conditions, getting the 'right' Doctor could very well mean the difference between Life and Death.

'AL Capshaw'