Apologies as this is a little rant as well as a request for some help so please bear with me if possible ....
As you can tell by my username i am posting this to get information for my mum. She is 65 yrs old and she was diagnosed a few weeks ago with what we think is paf.
However the road has not been a smooth one and we are in a constant battle with gp's and the nhs.
A little bit of background:
Looking back we think mum might have had symptoms as early as 2013. Sudden waking in the night with palpatations which gp put down to stress at the time and prescribed medication to help sleep.
However in may this year mum blacked out ... again passed off by gp - cant remember what they came up with on that occasion. A few weeks later mum had another 'attack' in the middle of the night and 111 told her to get a family member to drive her to a&e or get a taxi. No family available (i live 1hr30 mins away) and no bloomin taxis would come out at that time (she lives in a village) mum left it as she said the feeling subsided and felt she might be making a fuss about nothing. She went to the gp the next day and the excellent locum (sadly never to be seen again) referred her for an ecg. Mum then had to fight for approx 6 weeks to get that ecg as the surgery didnt know how to download the software (!!!!!!) Eventually they managed it after 7 seperate calls constantly chasing them and the 24 hr ecg was completed. Mum said she hadnt had an attack during those 24hrs so felt there wouldnt be anything to show. The gp said possibly paf as a result of the symptoms she described but would refer to a cardiologist.
Mum went to see said cardiologist - (listed as an ep on afa) but unfortunately she got the monkey not the organ grinder.
After hearing what he said he was possibly THE most unprofessional person out there to the point i question his qualifications and his right to practice.
Basically he didnt have the ecg results to make a decision on treatment so said he would go off what the gp thought it was. He said he would start her on sotalol and refer to an anti-coagulant consultant. Also referred her for an echocardiogram.
Since that appointment mum has had two more attacks both requiring paramedics and once going to a&e. Her heart rate was caught on the monitor on the way to a&e going from 58 to about 160. The frequency of attacks have increased dramtically in the last few weeks. During this time she had still not received the said sotalol so was no further forward.
She has now seen the anti-coagulant dr and they have prescribed the medicine which doesnt require regular blood tests. She has started taking these. She has also had date through for the echocardiogram - end of October!!
In the last few days we have decided for mum to go private for the echo and she has written a letter of complaint about the cardiologist (who in his letter made a lot mistakes re: important facts such as family history of heart diesase and frequency, intensity and symptoms of attacks). After more chasing she has now got the sotalol but is afraid to take it.
Basically because of the following:
- she has been prescribed medication by someone who hasnt seen her ecg results and has not taken into account family history or any of the episodes she described (as evidenced in the letter).
- she has also been prescribed medication which lowers the heart rate - it is already on an average 58 and she is afraid it will be taken lower still.
I just wanted to know what other peoples experience of diagnosis was and whether more comprehensive tests should have been done (e.g stress test etc) before making a decision on treatment?? Should the echo have been done sooner?
Mum also said that these attacks only happen when she is asleep - she wakes up feeling as though she cant breath - gasping for breath - Is this normal for paf?
If you have managed to get this far down without switching off then i thank you. If you could comment on any information related to the correct diagnosis procedure i would be eternally grateful.
This is all so new for us we just dont know where we stand and what our rights are.
Many many many thanks,
one concerned daughter x