Please advise on what to do next!

[TPar]

I apologise in advance as this request for information may be long and complicated.

 

Basically, I underwent a quadruple by-pass in September 2011. Five days after the operation I suffered a CVA and a clot was found in my left atrial appendage. The clot dislodge and went to the brain causing multiple (about 100) TIAs. The clot was successfully dissolved and I was released from hospital after 8 weeks. In November I suffered another TIA whilst out shopping and a further clot was discovered.

 

Again I was admitted to hospital and the clot was dissolved after 3 weeks. The cardio-thoracic surgeon then referred me to a cardiologist at Barts hospital for an urgent appointment to discuss an occlusion operation. This consultant did not respond until early January and hummed and ha'ed about the procedure. Even though he was supposed to be an "expert" in this particular field it became apparent that he had actually never performed such a procedure but merely been for training. He kept me on an overdose of blood-thinning medication which resulted in a GI bleed in March and me having to spend a further 8 days in hospital.

 

He sent me for a CT scan which showed scarring/thrombis in my left atrium which he said was inconclusive so would send me for an "urgent" MRI scan which would be more definitive. This "urgent" MRI scan took 8 weeks to materialise.

 

In the 7 months he has been "treating" me he has delayed follow up appointments, not booked urgent appointments with Haemotologists or revised my medication in anyway.

 

I saw him last on 28 May 2012 and he advised a four week follow up. No follow up appointment was made.

 

During the last two weeks I have suffered further TIAs which I advised him of both in telephone messages and e-mails. He did not suggest my visiting the A&E (even though the NHS direct advises that TIAs could be a possible indication of an imminent stroke.

 

He has now advised me by e-mail that he was taken ill 3 weeks ago and would be off for 3 months and would be requesting a colleague to take over.

 

My concern is that over 7 months no-one has been able (or willing) to diagnose my problem. I keep on being told that my case is "unique and complex" but no explanation as to the uniqueness or complexity and finally no one wants to take responsibility.

 

I am living on borrowed time and am not even able to claim DLA as there is no fixed diagnosis and my medication is deemed sufficient for a "normal" person. However it has been proved that none of the medication prescribed prevents clots from forming.

 

What is my next step. Any help would be gratefully received.

[TPar]

Nobody able to help?

[honeybee13]

Hello there.

 

This isn't a very busy forum and you may need to bear with us until someone with the right knowledge comes along and sees your thread.

 

I'll try to get you some help.

 

My best, HB

[TPar]

Thanks honeybee

[honeybee13]

Hello again.

 

Another member of the site team has suggested contacting the PALS group attached to your hospital. I'm told it can be a quick process and that you would be well advised to mark it urgent.

 

Hopefully someone with more knowledge of PALS than me will be along later.

 

http://www.pals.nhs.uk/

 

HB

Edited June 26, 2012 by honeybee13
Adding link.

[TPar]

Again thanks honeybee your'e on the ball - suggest you start a training group for NHS employees

[TPar]

I am in the process of applying for all my medical records.

 

Just an update. The "sick" consultant phoned me yesterday to say that he was arranging for "urgent" consultations with his colleague and the cardiac team would contact me yesterday to fit a 7 day heart monitor.

 

Guess what? Heard absolutely nothing.

[honeybee13]

I wouldn't dare, but thank you for the compliment.

 

I hope you get some more replies.

 

HB

[Marianne7]

Not a lot of help, but could you try contacting the consultant's secretary? They are usually very helpful and a good one should be able to chase appts for you, get people to give you a call, etc.

[TPar]

Thanks Caducea have not had much luck with secretary in the past but will try again. Thanks again.

[assisted blonde]

Have you tried going back to your GP and asking him to refer you to another consultant?

[TPar]

H iAssisted Blonde.

 

Unfortunately the original referral was made by my surgeon and therefore the GP is loath to interfere. The surgeon on the last occasion I saw him admitted that the consultant was dragging his heels but said that if he referred me to another consultant it "would cause waves". I am getting to the point where no-one wants to take responsibility.

[Marianne7]

Hi T

 

That's ridiculous ~ especially since your consultant is ill and will be off some for months. Insist on a 2nd opinion; this happens routinely. Think you need to get a bit tough, while polite, with your GP and your original surgeon!

[Night Owl]

Hi TPar.

 

I have just read through your account.

 

Any Cardiac or major vascular surgery comes with serious complications of which you should have been made aware of at the point of consenting to the procedure to continue.

This surgery also involves regular follow ups and anticoagulant monitoring.

 

The fact that you have been having TIA's (Transient Ischaemic Attacks - or mini strokes http://www.nhs.uk/conditions/Transient-ischaemic-attack/Pages/Introduction.aspx) and a gastric bleed means that you should have been followed up as a matter of urgency.

This has obviously not happened and you have been left managing your own deteriorating condition alone - this should not have happened.

 

Might I suggest that you telephone the the secretary of the last surgeon you saw and ask for an immediate review of your condition as you are haveing TIA's and have had a gastric bleed and are not being seen or effectively followed up.

If it is an answer phone message leave this request and ask for an immediate return call to discuss further.

You must also push for a diagnosis of your condition in respect of DLA as this is having an impact of your life as well as your finances.

 

Any further TIA's, or bleeding might I suggest that you phone for an ambulance and get to hospital to be seen.

 

Best of luck and keep us informed of any developments.

[TPar]

Hi Nightowl,

 

It appears you have considerable medical knowledge - for which I am extremely grateful. The only advice on complications was that it was major surgery and the normal complications existed. There was no talk of TIAs or strokes. However subsequent to the operation it has come to light that I have an undiagnosed blood disorder which results in clotting even though on maximum blood thinning medication. There are new drugs available (NICE approved) which attack the thrombis without thinning the blood like warfarin which has been proved to be ineffective in stopping the clots which the Haemotologist refuses to prescribe ("I have been in the business for 30 years and have never come across something like this but warfarin has worked on others for 60 years and I am not prepared to try an 'unproven' medication" - his exact words). So I continue to swing between clotting (TIAs) and GI bleeds without anybody being prepared to make a stand on my behalf. I am now desparate!

[Night Owl]

Hi TPar.

 

They probably worded any complications as bleeding or formation of clots for which they would give you anticoagulants.

A pre-op undiagnosed condition of any sort is a bit of a spanner in the works! and will be treated as found.

Any Cardiac or Vascular surgery, infact, ANY SURGERY, involves a work up of regular blood tests and a group and save of blood for emergency use if needed. Any irregularities in your clotting should have been picked up at testing.

[honeybee13]

Hello Night Owl and thank you for looking in, I appreciate it.

 

TPar, are you any further forward with sorting your problems? You've had some good suggestions and I wish you well with all this.

 

We're here for you in anything else you need help with.

 

My best, HB

[honeybee13]

Hello TPar, how are you getting on?

 

My best, HB

[TPar]

Hello honeybee

 

Thanks for your concern. My son has sent a "long" email of complaint to the consultant, copying in the surgeon and the haemotologist prior to going to PALS. At the moment I wake up every morning surprised that I am still alive . Will keep the forum informed of the outcome (if any).

[honeybee13]

Hello again, nice to hear from you. I've been wondering how you are.

 

I'm sure you'll have an outcome, but you may need to be persistent. It's good that you have your son helping, and I'm sure caggers will do what they can if you need more advice.

 

My best, HB

[Night Owl]

Well done TPar and son!

Lets hope that you get some answers very soon.

Stay well x

[questioning]

Gosh I wish there was an update from the OP as if you read post 19 it sounds like the out come may have been death!

[Night Owl]

Reasuringly TPar was around on CAG on the 8th December.

 

Some peeps just need answers and thats it, whilst others update their threads with results.

We can only help where help is needed at that time and wish them well.

[questioning]

Thats good, I clicked on his name to see when he was about last but only got an error, just tried again and it worked so got to see his profile with the info on.

Thanks Night Owl.