I have had a letter from my electro physiologist to my cardiologist stating that an ICD would not be appropriate in any situation in somebody who is unable to take any medication and had a sore arm last time she was in hospital via the BP monitor (Day 4 I asked for 1 Paracetamol as I have a very slight frame) What a cop out.
But I do need some sort of diagnosis 16 months later ( very kind of him) for future risk down the line, bearing in mind I never met him the EP I met the registrar who kept nipping to see him at my appointment.
He has suggested a provocation test to be arranged to be tested for Brugada Syndrome which has (Nocturnal SCA as a main symptom).
So I guess that's me Lights Out All Out as I had a Sore Arm last year
Tell me I need a Second Opinion Please. This cannot be happening.
*LBBB/ Moderate LVSD EF 35-40% Moderate HF
Abnormal ECG's due to T wave Pattern etc...
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Brandibell
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Sorry to hear this, after all you've been through. You could write to the chief executive of the hospital, he has a duty of care to all staff and patients. He is hot on keeping the hospitals standards and upholding the hospitals charter.
They have to investigate all complaints, or as Milkfairy advised all hospitals have PALS, though it is not a quick process.
What symptoms do you have to warrant an ICD ?? You have to fit certain criteria set by NICE like having been on Maximum Medication for your condition your EF looks marginal and Moderate EF needs to be below 35%, and the reading needs to be accurate 35 to 40% seems a bit wide.
Due to the fact i cannot tolerate tablets and i have all of the above i was referred to an EP via my cardiologist. It was stated on my letter an ICD is my last option to prevent a SCA. My ECG's are showing Long QT's missing waves and Brugada signs as well as meeting the criteria for an ICD via the NYHA which was agreed on by my cardiologist, this is why he was sending me to his good friend.
It is my EP who is saying no to an ICD due to the fact i cannot take Medication and i had a sore arm( No word of a lie it is written on the letter) not being able to take medication could be part of Brugada there is a massive list of drugs to avoid. So i find this presumptuous before doing the test. he is
My HR since last night has gone from 154-31 and everything in between and i mean it just drops from 140 to 70. I feel it but i think i am becoming immune to it.
The electrics also need to fit a criteria like QRS timing etc I wasn't trying to be smart, just I know there is a criteria to match different types of Pacemakers/ICD like CRT with and without the D.
I fit all the criteria for a CRT, but the Cardiologist is holding off. I saw my Heart Nurse yesterday and she said the conversation takes place quite often "Should they or Shouldn't they" I have maxed out on Bisoprolol and on Entresto so no more Medication changes.
ps I do have LBBB as well as everything else like had, Stents had Bypass Surgery etc Also have 100% blocked RCA Sometimes it's not a simple choice on what to do. Like on a 3 lead Pacemaker seeing so quite a bit of my heart is beyond repair ( Muscle is Dead ) where do the put the leads !!!!
We are all different Prada. Unfortunately i am odder than most. here is an example i had two roots in one tooth when having a root canal at the dentist haha - rare. So not a lot surprises me where my health is concerned i have Meniere's disease rare, no doubt i have Brugada- rare.
I guess i am here to baffle the professionals.. but i will also fight for myself if i feel they are not doing there job properly and most of all right now are hiding behind tablets and COVID which a lot are i will not mess.
All I can say is it's not a simple choice of fit one or not. Your Cardiologist needs to say why ?? I know in my case it has been discussed on placement of leads with my Heart already damaged.
Are you at the Maximum of Medication for your Heart ?? it is a very important part of the Criteria for an ICD, just trying to help
Hi Prada, thank you for your help. I cannot tolerate medication i have a multiple drug intolerance syndrome and my cardiologist and Electra Physiologist know this. I have tried on numerous occasions over these last 16 months even now i am on a quarter of 1.25 mg of Bisoprolol due to i am at risk of SCA until further tests have been done. As i mentioned earlier i am a rare one and i think this also annoys them as it is so easy to put someone on tablets it is a lot harder to get to the source.
I hope you can find a pacemaker or ICD i know there are wireless ones apparently, maybe worth a mention.
It's just a thought but could the reluctance in fitting an ICD be because you are so very meds intolerant.
Having a icd fitted is not without complications, some of them quite severe the device can move, leads break, infections can occur etc. When my husband was given the option to have his fitted we were made fully aware of all that can go wrong but opted to have it fitted because of a previous cardiac arrest.
Could it be a case of concern has to how they would be able to treat you if you do have complications? My husband is also very meds intolerant and that does impact him quite a lot, we've had many a discussion with his GP about being too cautious!
I think I would be asking what the thought process was behind the decision.
i intend to i have already contacted both secretaries to find out what is happening next and can we move it along a bit faster before lock down happens again( written with fingers crossed, not ).
The EP hasn't even spoken to me this was written by him to my cardiologist his secretary sent me a copy. So i am up in the air as to what is coming next.
I understand he may be wary and he has said it is due to my medication intolerance. My argument is say i get diagnosed with Brugada where the risk of SCA is very high and most people end up with an ICD what is mine going to say DNR due to i cannot take medication and i had a sore arm due to a BP monitor. He needs to explain further, maybe to my face, i know you are in pain for a few days i can tolerate paracetamol and lucky for me i have a very high pain threshold and would take the chance like yourselves, rather than risk lights out and be one in ten who doesn't make it back from a SCA.
To be honest i have gone from mild everything to moderate in a year. Now this on top.
I wish none of this on any of us, i really don't want an ICD i wish it would all go away and let me finish my MA instead i am looking at PIP due to my deafness/balance disorder and under cardiac protective approach since August. His Registrar won't say i am fit to go back to uni.
I am stuck again between Two hospitals again in the height of Covid which i wasn't last May when this began, so why wasn't it sorted then, believe me i have asked this via an email.
All i want is to get to the bottom of why my electrics are faulty. Then get on with being a lone parent to my boys it is not good for their MH either, they are frightened to leave me at present.
I totally understand your concerns, my husband also has more than one serious medical condition. The GP doesn't seem to be on board with anything, we're the ones that have chased and got his cardiologist on board though no appt until Nov and then it'll be a phone call. He's having severe side effects to some injections he's being given which really can't be helping his heart condition, I rang his support team a week ago for help to try & alleviate these symptoms, I'm still waiting for a phone call back & he's due another injection on Monday!
I'm usually a very tolerant person & I get that things are difficult but it's very hard to watch what he's going through and not get angry!!
Sorry, rant over. I hope you get some answers soon, please let us know how you get on.
Rant away, i do daily at the minute. It is becoming a never ending battle that is for sure. I do hope hubby gets sorted and you get some stress free days. Keep at them. It is never nice watching people we care about suffer. My mum is terrified of losing me as I am her only child(Big child granted at 46).
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