Stuck in the Middle !!!

[giddytd1]

Have been having alot of problems with my medication, so went to see my GP last week. I am currently on bisoprolol 2.5mg, clopidogrel 75mg and ramipril 5mg. I also take patoprazole 40mg. It has been very diificult to manage my heart rate, typically the resting rate is between 75 and 100. This I can put up with but have been experiencing extreme cold and numbness in my left arm and hand. GP unsure what the cause is but would not review my medication until he has spoken to my cardiologist. It had already been discussed, a fortnight earlier, about the benefits of going onto warfarin and a referral had been made. However, this was a different GP that made the referral, and the one I saw last week, suggested looking at alternatives to warfarin, but did not say what these are. Cardiac ablation was also suggested but this just freaked me out.

Despite, contacting the GP surgery daily to see whether there was a response from the cardiologist, he has yet to reply. To complicate matters further, I have also been given an appointment at the warfarin clinic this evening.

This morning I am not feeling too great. Heart rate again is all over the place and I have struggled to get warm. I rang in sick for work ( as I have a very understanding manager who insisted that I need to take time off, whilst things are being sorted) and contacted the surgery for a telephone consulatation. Surprise, Surprise, there is nothing that can be done until the cardiologist has contacted them. I was advised that if I was not feeling well to cancel the warfarin clinic appointment.

I contacted the cardiologist department to be advised that they cannot locate the GPs letter and anyway would not be able to give any advice as the cardiologist is not back in the hospital until next Monday.

I feel that there is nothing else that can be done until advised by the cardiologist. I am not due to see the GP again until the 30th May but feel that this will be a waste of time.

Feeling a little fed up at the moment as I always try to the right thing but just want to feel a bit better than I currently am.

[meadfoot]

Hi Giddytd1. So sorry to hear that you are struggling at the moment. Sounds very similar to my experience last summer. I have an excellent GP and Cardiologist but after a stay in hospital in another part of the UK I found myself back to square one when I needed to be referred back to the Cardiologist. A was given a three month wait to see him and I was so ill that was not an option for me so I paid privately and was seen within a week.

Eventually Cardiologist and GP got me back on track but I went through some terrible times for several months. I only tell you this to say I understand how you must be feeling and to say hang in there.

On the anticoagulation front I was prescribed anticoag as part of my care plan after the experience I have shared above. I side stepped Warfarin and was prescribed one of the new noval anticoagulants.

There is Dabigatran; Rivaoxyban and, very recently Apixaban has been approved by NICE. I am prescribed Rivaoxyban which I have been taking since Feb 2013. The new drugs do not need INR testing. I just had a blood test after one month and will repeat every three months. I have not had any side effects whatsoever.

Equally, I know loads of people who take Warfarin very successfully, are very happy with it and would not choose to change to one of the newer drugs. My thoughts are if its not broken why fix it - stick with what works for you.

The big fear over these new drugs is the current lack of a reversal agent which could be an issue in case of a major bleed or if you have a bad accident and bleed profusely. However my Cardiologist said if I had an accident while taking Warfarin then I could have bled out anyway before getting assistance. There are things that can be given even though the antidote for the new drugs is not yet available.

My cousin is an Accident and Emergency Consultant and advised I should not let this put me off, she mentioned a drug used in these cases, her words were 'there are things we can do so don't let it put you off, you are fine with it - just get on with it and stop worrying'. So I have and so far so good. I am just trusting that long term they will prove ok.

At the end of the day we have to make the best informed choice that is right for us.

Take care and have confidence, you will get back on track. Good luck. Regards Dee.

[rupert12]

Hi Giddytd1 - Oh dear,so sorry that you are having problems, as meadfoot says, it is not unusual for this "stuck in the middle" syndrome to happen, as it has to many of us, myself included. The problem being that sometimes there is no continuity of care between GP and Cardiologist, letters can get lost and unless you are on the ball you can fall out of the system. I have been persistent in sorting out my medication and appointments, (but always polite!). The important thing for you is to be on some kind of anti-coagulate. Please believe me that there is light at the end of the tunnel and your will get sorted out, it's just it takes time, try not to get too stressed (easier said than done!) over it . Good luck and keep us posted how you are doing. Wendy .

[giddytd1]

Had an absolutely awful day yesterday. Had two AF attacks, one in the middle of the night and the other when waking yesterday morning. Contacted GP but could not get through so had to contact NHS24 instead. Unsurprisngly, they sent an ambulance and I spent most of the day in A+E. Had all tests done. which confirmed AF!! (and gladly there was nothing else going on) and also had the opportunity to discuss the symptoms I have been expereincing with coldness in left hand and arm. Finally, it has been put down to the clopidogrel that I am on. I have been advised that it has caused a medically induced partial paralysis. So I have now been takien off the clopidogrel and told the symptoms should go within a couple of weeks. As regards to other medication I have been put back on aspirin and also had the bisoprolol increased to 3.75 mg each day. It was queried why warfarin is being looked into, as there are alternatives, i.e asprin and that the stroke risk of somebody my age (a 42 year old male) is very small and also why the aspirin was stopped in the first place. Again this is where the confusion lies, as many different GPs and cardiologists have differing views. Anyway for the time being I feel alot more relaxed, my heart rate is more controlled and I am taking the rest of the week off work (as I am shattered) until the medication kicks in. My wife was a great support to me yesterday and understands how frustrating it gets for me having to yet again, discuss what the issues are and how they affect me. I confess that I can be a difficult patient at times but this comes about when I feel that I am not being listened to. I was quite happy with the outcome and could not wait to get out of there.

Cardiologist has been advised and no doubt I will get an appointment through at some point to go and see him again soon, as the next appointment is not until September.