Quietly seething and whittering!

[wilsond]

Hello all

Seeking voices of reason here...!

History behind title;

I had a phone appt with one of the arrthymia nurses 16/20/20 during which we discussed at length how I was. I told her that I had seen Proff Osman privately as couldn't get to to see him/ phone appt for 8 weeks and I was increasingly concerned with much increased symptoms since July.

He had then transferred me back to nhs and put me down for her follow up

She noted that I was back on the ablation list. She suggested amiadarone but I was hesitant unless very necessary. She agreed to put me down for review on 30/20/20, which is still on,by either the Proff or team consultant. Ok so far.

I had a copy of her report you my GP yesterday,which bears little resemblance to this conversation. She remarks that I get 2-3 events per day lasting a few seconds which do not impact on my daily activities but only on quality of life. She goes on to say that I suffer fatigue and breathlessness on bisoprolol and can reduce if needed.

So I am cross about that. Anyone reading those notes would think all was mostly well.

My main concern is in the header where they list diagnosis. Here as well as the same shopping list as usual (AF,flutter,bicuspid valve etc) she lists left atrium dilated.

On reading this I got out my paperwork and can't see this anywhere else after echograms.

Proff O report from 9/12/20 says " no evidence of cardiac failure" but an older report from my other cardio consultant reads like this ( copied exactly)

" Bicuspid aortic valve with no significant stenosis or regurgitation on Echocardiogram,preserved biventricular size and function"

I don't know what to think! I want to be prepared to ask right questions on Friday

I have tossed and turned all night! Not a good couple of weeks ..boiler dead so no hot water or heat apart from wood burner,son slashed tendon in hand ( chef) and I'm driving home to appts as Mrs working in other county

Apologies for the whittering long post today!

Hope you are all well.

Keep smiling !! 😘🙂

[Rienij70]

Oh dear, a very familiar story. Many of us can relate to that. Hope you get it sorted, and soon

Hugs from Rienij xx

[wilsond in reply to Rienij70]

Have just ring GP surgery ,who forwarded the report and he will call back this morning ! That's a surprise but nice.

Hope you are keeping well Rienij,and thank you xx

[jeanjeannie50]

It sounds like the nurse may have mixed your written report up with that of someone else!

Jean

[wilsond in reply to jeanjeannie50]

I'm wondering that Jean!!

Do you know if dilated atriums ever respond well to ablation ( if I do have enlarged atrium that is..)

Xx

[jeanjeannie50 in reply to wilsond]

I think if an ablation is successful the atrium can decrease in size and that it's only when it's overworking that it enlarges. The same as if we exercise, our muscles grow bigger.

[Clarrie in reply to wilsond]

A letter I received from cardiologist had changed the name from mine to another person in the middle of it!

[Desanthony]

Oh my goodness. I know this happens. My wife has had a similar experience which is why for the last 15 to 18 years we always ask for copies of all letters to be sent to us and then make an appointment to see our GP. Then we know if the GP has also received his copy and he does whatever is asked for by the specialist. Hope you get it all sorted soon.

[wilsond in reply to Desanthony]

Thank you !

[doodle68]

Hi Wilson 😊 I am speaking to you half hairless having torn it out in frustration over the last few weeks after a catalogue of inaccurate interpretations of the detailed information I gave at my consultations also lost letters and reports including an echocardiogram (I have since discovered the secretary who serves both EPs I have consulted recently has been on maternity leave since august ) and conflicting advice from 2 EPs. I am seriously considering climbing under the duvet and staying there till spring .

I understand (and I am sure someone will correct me if I am wrong) that most people with AF have a degree of left atrium dilation I certainly have which I understand can improve with certain treatment like ablation.

I paid to have an Echo recently ( having been told I would have to wait +6 months for one on the NHS and can't start taking Flecainide until I have one ) and I was relieved to see that in the 3 years since the last one the dilation appears not to have increased in spite of frequent long episodes of P-AF.

I hope your sons hand is ok, another worry for you.

Feel free to request a share of my duvet 😊 there is room for all....x

[wilsond in reply to doodle68]

On my way Doodle! I'll bring supplies with me !

Thank you for all this info. It's so very frustrating ..and not good for the coiffure at all ! It's not us..it's them!!

Hope you got through to Them eventually xx

[wilsond in reply to wilsond]

Ps he had stitches out yesterday so that's better. I lurked in the car as it was at Coventry and Warwick..in tier 2. Xx

[doodle68 in reply to wilsond]

Wilson 😊 I have been trying to get permission to try Flecainide since February with ever increasing symptoms 😒 . I eventually abandoned all attempts to speak to the EPs sec (who it transpires is on maternity leave ) and rang the cardiology department and oh joy spoke to a wonderful helpful lady who had promised to try to help me. She listened to my saga and toddled off to the offices of both the EPs I have consulted recently and they are both on annual leave for 2 weeks so no progress yet. I live in hope of getting some help soon.

[wilsond in reply to doodle68]

It's like ever decreasing circles !

[wilsond in reply to doodle68]

Doodle I'm glad your echo gave some peace of mind . I had to chase my annual one up but it was scheduled for March 2020. didn't happen of course ... Do you mind me asking how much a private one is please as a guide ?

[doodle68 in reply to wilsond]

Hi Wilson I did some research and found a place in the Cotswolds that do ECHOs at a reasonable rate and they have very good reviews...

vista-health.co.uk/services...

...but I hadn't heard of them so settled in the end for the Nuffield at Hereford which isn't far from me. The Echo cost £390 , they do them every Tuesday so there is no wait and it was carried out quickly and efficiently with good Covid security and a report was written and sent the same day I had the scan.

The problem came when the report got lost, I got tired of waiting and after 10 days I contacted the GP surgery and found they hadn't received it but they got a copy emailed to them that moment and they sent a copy to me. It is a lot of money but having waited since February for some action only to be told 3 weeks ago it was likely to be 6 months before anything could be done I think it was worth it.

lI have discovered you have to be pro active, sitting waiting for help leads to inertia from the medical profession.

I hope you manage so sort your boiler and your AF quickly 😊

[wilsond in reply to doodle68]

Thank you very much ! Sorry didn't notice reply until just now. That's very useful to know.

Yes I agree with needing to kick butt as the Americans say..sadly .

Stay under the duvet Doodle !

[Bambi65 in reply to wilsond]

Sweetie, we dont say kick "butt".... More like Kick "A..". In dealing with the medical community; the squeaky wheel is the one that gets oiled. I have just one cardiologist, he has nearly 400 patients. If I need to clarify something that he or his nurse have written incorrectly in my chart, I call, and I call, then I go into the office and "get it resolved. (kick A.. )

2 Years ago, I finally agreed, reluctantly, to take anti-coagulants. This was discussed during a visit with my Cardiologist. Two weeks later, we had to call him back to question the dosage. The n urse there said "STOP taking them" "You are NOT suppose to be on them". All of this was because the doctors notes stated " I was to not to be on Anti-coagulants". What was missing was; If, I was going to have an ablation, I was to be off the them the weeks before. This is what was discussed at the previous office appointment. To make matters worse the nurse was adamant and she refused to send a message to the doc. At this point my husband, a surgeon, called the office to speak to her this time. She repeated the same BS to him and told him it is in her chart. He very calmly said to her, I have never heard of any cardiologist telling a patient NOT to be on A-C, that has Afib. I would like to have your full name please, because if my wife has a stroke because of your refusal to consult with the doctor for clarification, over this mistake, I to be sure I have the correct spelling of names in the law suit. The doctor called my husband that very afternoon. People make mistakes, mis-understand, so be diligent, follow-up, and very pro-active like doodle said.

Good luck.

[Hidden]

Perhaps it really isn’t your letter. My husband received copy of a letter for gentleman who lived in downstairs flat! Goodness knows who got his!

[wilsond in reply to Hidden]

Indeed anything seems possible!

[Finvola]

It sounds like the nurse wrote up notes in batches and mixed them up? Was your agreed review mentioned at all to indicate that it is in fact your review?

From an experience with a consultant my husband had on the telephone during lockdown, I am seriously considering recording future important calls.

You won't be able to get the report corrected, I understand but you can write to your GP with your report of the consult, if you think it is worth it.

In N Ireland patients do not get copied with medical letters and reports so goodness knows what's in most people's files. I always request records in batches - pain in the bum and takes a month.

Perhaps it would be an idea to make your own notes of the conversation, ready for your appointment. Best wishes and keep smiling (even through gritted teeth). xx

[wilsond in reply to Finvola]

Food for thought there Finvola! Yes good idea to take notes and or record calls I think.

It looks like two sets of notes now you come to say,how it's set out us almost two different styles !

I shall investigate ...xx

[Doggiemomma]

Hi, Wilson,

I've walked this same path with differing info on my medical records! Apparently I have gastroesophageal reflux disease (GERD), noted years before my AF reared its head. I have NEVER seen a doctor for it (because I don't have GERD!) and didn't even notice that diagnosis on the after-care paperwork I received.

Recently, in the Emergency Room for AF, I asked about my "p waves" and if the doctors could tell if I was in some kind of AF tachycardia, or if I was in SVT and they said they couldn't tell (even with a 12-lead ECG!).

At that point, I had steady rhythm but tachycardia rate of 135 to 155 beats per minute for close to a 24 hour period, which led me to seek Emergency Room treatment. I converted back to NSR after receiving an IV of metoprolol which I thought didn't work on SVT. Oddly enough, when I looked at my ER discharge papers, the diagnosis was SVT. What???? Huh????? Spin me around and call me Dizzy! When I emailed my specialist, he said the ECG from the Emergency Room visit showed those p-waves associated with SVT.

All this is to say it's possible, as others have said, that your paperwork was misfiled or got mixed up with someone else's paperwork, AND that sometimes, people just put odd things in your chart. I don't know if perhaps they have everything computerized and perhaps they hit the wrong number-key-code for one thing, and something different and inaccurate was noted.

Oh, and if you're still reading this, I discovered months ago on another discharge paper that I have aortic stenosis. No one ever told me this, so I asked my specialist how they know this, and he said it showed up on the chest X-ray. Gee, thanks for telling me. I was told the x-ray was normal.

[wilsond in reply to Doggiemomma]

Hi it's all rather worrying isn't it? It seems quite common to have odd or mistaken information on our notes.

I will be vigilant.

What a confusing time for you ! I don't think A and E ( ER) are really able to diagnose properly but should not then just guess !!

Best wishes xx

[Doggiemomma in reply to wilsond]

Thank you for your reply! Yes, it's rather worrying and frustrating, too! Best of luck to both of us, yes? Take care!!

[David1958 in reply to Doggiemomma]

When it comes to paperwork of any kind who has the most interest in making sure the information is correct? You. Nobody else has the time or inclination to do this for you. You are dealing with humans who make mistakes, fumble fingers or what have you. I have been listed as having high blood pressure for years. I have never had high blood pressure. I was taking a beta blocker to slow my heart down. But beta blockers are primarily for lowering blood pressure. So you can see where errors creep in just because you are taking a drug for off label purposes.

[Doggiemomma in reply to David1958]

Thanks, David! I did find it quite disconcerting that the ER doc told me one thing and then something different was printed in my discharge papers. By the way, you have quite an interesting back story! :0)

[belindalore]

So sorry. I'm in the USA and find many Drs over here totally useless and don't listen. I see my cardio Dr tomorrow and it will be pointless. You have a case of malpractice it seems to me. Best hang on to your paperwork and take it with you. If you can MAKE copies so if you give them what you have it doesn't somehow disappear somewhere. Good luck!

[wilsond in reply to belindalore]

Thank you sorry you've had problems too! I will keep originals at all costs xxx

[philologus]

My daughter is disabled and we had a nightmare getting PIP for her because of the lies on the various reports.

I bought a "SpyPen"!!!

It records sound and video and slips into my shirt pocket. If I only need the sound I can put it under a thin shirt so that no one knows it's there.

It proved to be very useful.

I now use it when I have GP or specialist visits. (None since lockdown.)

I can then double (or treble) check everything.

Crazy isn't it?

I learned a long time ago that when I look in the mirror I'm looking at the person with prime responsibility for my health.

[wilsond in reply to philologus]

Wise words and a very good tip. Thank you x

[Elfiejean]

I found out that I had sick sinus syndrome on some paperwork Never explained to me. Pulse rate in 30"s during sleep. Confirmed with 7 day moniter,. Supposed to get pacemaker in 2 to 3 weeks. Not holding my breath. The virus is surging in our part of US. There is a shortage of beds here. I have had bradycardia over 2 years and now they say I must do something. Asked about it 2 years ago They said not for you. I guess you simply soldier on. My records are all messed up too.During a visit to a different cardiologist I was getting dire news. I glanced at the name on chart. It was not mine. so here's hoping you can sort it out. Be a squeaky wheel. Only thing that has worked for me.

[wilsond in reply to Elfiejean]

I will squeak loudly !! Thank you and hope all goes well for you too xx