Nick’s Story: Ideopathic Dilated Cardiomyopathy

Many thanks Nick for sharing your story.

Hello my name’s Nick and I’m 52 years young.

In 2006 I came back from holiday unable to stop sweating and feeling like I’d pulled a muscle in my chest. I went to the doctor and was rather surprised to find my resting heart rate was 165 bpm and he wanted me to go straight to hospital.

I was diagnosed with idiopathic ( this means they don’t know the cause ) Dilated Cardiomyopathy and Atrial Flutter.

Cue medication, including Warfarin and Amiodarone,  and a year on the sick. I finally got a doctor to sign me off the sick in the middle of 2007.

In December 2007 I underwent an ablation which fixed the atrial flutter but unfortunately I developed Atrial Fibrillation, initially this was Paroxysmal.

By 2009 the AF had become persistent and I had started to shake as a side-effect of the Amiodarone. This was as well as the sensitivity to sunlight that it had already given me.

I was all set for an AF ablation when they tried me on some new medication ( Adizem XL ) which seemed to do the trick.

All went well for the next five years but in 2014 I was referred back for monitoring as there was concern that my heart had deteriorated and for the first time there was mention of Ventricular Damage and Spironolactone was added to my meds.

Fast forward to 2016 and following my check up I was advised that I should consider an ICD as a preventative measure as I was now at high risk of SCA.

So on July 11th I was fitted with a single lead ICD which I have named BRIAN. I have the home monitoring device so only have to have one check up a year. It’s early days yet but so far so good.

Throughout all of this I have NEVER been able to feel if my heart is racing which has its good and bad sides I suppose.

None of this has stopped me enjoying my hobbies including my allotment and fishing on my sea kayak.

nick

The only downside of the ICD is that I had to stop welding after 25 years.

Luckily I work for a very understanding company and they have found me an alternative role in the company. On the upside, I’m not allowed to use the new induction hob at home oh dear!

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From ICD to CRT-d

Thanks to Mike for sharing his story.

I had been feeling unwell and generally very tired for the past couple of months and decided to have a chat with the Heart Failure Nurse Specialist in Neville Hall.

My medications were reviewed but the new tablets contributed to a horrible dry cough. I was unable to get a good night sleep despite gently increasing my exercises by walking more.

Whilst organising matters related to the GwentDefibbers I happened to mention to Mandie that I just did not ‘feel right’.

Arrangements were made for me to have an echo scan and an ECG and then follow up in clinic for the test results to be reviewed.

The tests identified that my left ventricle was severely damaged and the signals to the other side of my heart was slow. One side was not speaking to the other side and so the heart was not working as efficiently as it should have been.

Mandie informed me that the team now felt it was appropriate to upgrade my device from a single lead ICD to a 3 lead CRT-d (check information at bottom of this page).

I was referred to Dr Zaheer Yousef and he would carry out this procedure.

A venogram was undertaken.

venogram

The big date for my procedure was organised for February 2016.

I attended a pre-op clinic a week prior to the big date and found that despite already having had 3 procedures for ICD’s was still extremely nervous.

The big day – I arrived on the ward by 8am and was seen by the Registrar who, once again, explained the procedure and I was asked to sign the consent form. During this period I was also receiiving intravenous antibiotics in order to prevent infection.

Dr Yousef paid a visit and helped put me at ease. Another visitor was Anna the product specialist manager from St Judes electronics. She would be in theatre and would actually have the job of turning my ICD off in readiness for the procedure.

The theatre seemed very large and there appeared to be lots of staff in the vicinity.

I was covered with a sheet which looked and felt a bit like a tent and had an open area for my face. I was able to see and talk to the nurse the entire time I was awake.

The background music  (Yes sir I can boogie all night long) helped me relax and then I felt a small sting in my chest ( no worse than giving a blood sample). I felt myself drifting and the very next thing I was back in the day unit! It was 12.15pm.

I enjoyed some tea and toast. I remained in bed for 4 hours, had another ECG and then Sarah from the physiology department came down to ensure all checks were made on my device. Andy Penny kindly contacted my wife and daughter and before I knew it I was back home.

I’m very pleased to say that I am making a very good recovery.

The CRT-d has improved my quality of life and I have new found energy and interest with life in general.

I’d like to thank the nurses at Neville Hall for the care they’ve shown me and to Mandie (ICD nurse specialist), Sarah & Andy (physiologists), Anna (St Jude) and last but not least Dr Z Yousef and his team for their care and support.

What is a CRT-d ? –  http://www.medtronic.com/us-en/patients/treatments-therapies/heart-failure-device-crt/what-is-it.html

 

 

Sleep apnoea

Many thanks to Mike for sharing his story…

I attended a check up session with the Heart Failure nurse when she asked me if I would complete a questionnaire about my sleeping pattern. She explained that a study was being carried out on people with heart failure to determine how their sleep patterns may be affected by this illness.

A few weeks after this episode I was contacted by a Cardiologist called Dr Shah. He asked if I would like to carry out a sleep apnoea home test as it was thought that approximately 50% of heart failure patients suffered with this problem.

It was explained to me that the test would take place over 2 nights.

I picked up the testing equipment which consisted of 2 bands placed around my chest and belly, an oxygen type tubing placed in my nostrils and a sensor.

Mike

mike (2)

 

I honestly did not think that I would be able to sleep comfortably with these items on my person, however, to my surprise I  did settle.

The equipment was then returned to the technicians at the Sleep Clinic in Nevill hall and here they were able to download and analyse the findings. I was then referred to Dr Jose Thomas. 

Here a brief write up about the sleep clinic, Abergavenny http://www.wales.nhs.uk/sitesplus/866/news/35604

Dr Jose Thomas informed me that I did suffer with mild sleep apnoea and I was very shocked when Gavin Phillips, sleep technician, showed me the graph from my 2 night test.

Each night I had stopped breathing for an average of 254 times!

Gavin explained to me that the treatment for this disorder was what they called Continuous Positive Airway Pressure (CPAP) and it would involve wearing a mask during sleep. Air is then blown under pressure via a small pump through the nasal passages to prevent the throat from collapsing during sleep. The air pressure is adjusted automatically to prevent this collapse.

I wasn’t looking forward to this treatment because it sounded ( and looked) very uncomfortable but felt that I had to give it try. 

The first night I set everything up, put the mask on my face and started the pump. It felt very strange and I didn’t think that I would sleep but after a while the sound was like listening to waves lapping on the sea shore. Next morning when I awoke I felt amazingly refreshed, full of live and found that my concentration was much better. Previous to this I was waking up very tired and not refreshed at all.

I am very pleased with this treatment. It has altered my life and improved the quality of my life. If anyone recognises the way I was feeling and having the same problems that I was I urge you to chat to your GP or heart failure nurse..

It does not work for everyone but is well worth a try

Sarah’s Story

Please find the following story sent to me by Sarah…..

I had a cardiac arrest on 10th February and was successfully resuscitated by my husband (my hero).

I had an echocardiogram and was told that the pumping action of my heart was severely impaired.

I was totally shocked.

I was admitted to Llandough Hospital and was to be transferred to U.H.W as soon as a bed became available. Two weeks later I was transferred there at 2am. Once in The Heath Hospital (U.H.W) I had a barrage of tests to find out what was wrong with me and what needed to be done to correct it. The tests were thorough.

It was the waiting that was hard.

I hadn’t realised how much patience I had until then.

During my time in hospital I was commenced on medication and I was attached to a heart monitor which meant I had very limited movement, basically, I was able to move around my bed and to the toilet but was not allowed to shower.

The worst bit during my stay was the clexane injections into my stomach. I hate needles and so this was a nightmare each evening.

My emotions were all over the place whilst I was in hospital. I’m normally very fit and active with a very busy job and I could not really get my head around what had happened to me. I felt a fraud!

My husband assured me that I was not a fraud, and  I’ll never forget the look on his face that night when I came around to know that I’m not a fraud.

One of the tests involved a repeat echocardiogram (4th week) and they found that the pumping action of my heart had improved and was almost back to normal. This was attributed to the rest that I had had and the fact that I was normally fit and did regular running. I was really chuffed about that, however I did have to continue with the medication and the decision was made to fit me with an ICD.

This is my insurance device.

My husband was really thankful for this too.

There was a suggestion that I had cardiomyopathy but this was never confirmed.

Over the following 6 months I slowly ‘paced’ myself back to full fitness by attending cardiac rehab classes which were great because the team encouraged us to work within heart rate zones. I invested in a very posh garmin heart rate monitor which has been very helpful. At first I had the one with the strap around the chest but this interfered with the device much to my concern as I had been told that it was OK to use .

I attended the next stage of exercise referral at the local council run gym and have almost finished the 16 week programme. This has really helped me strengthen my  muscles especially my arms as we are restricted with arm movement for first 6 weeks after the device is fitted.

During the past 7 months I have really been positive and motivated to get some normality back to my life. I couldn’t continue with my previous job and have had to step down in my role to one with less responsibility, and that’s fine, I’m glad to still be here and be able to work! There have been times, however, when I have felt totally wiped out, especially when running or trying to lead the life I used to lead.

There have been times when I have heard about other people who have died of ‘sudden cardiac arrest’. I have listened to the stories from relatives and found this very emotional and hard to listen to.

I guess I may not have really believed there was anything truly wrong with me until I had another ‘funny turn’ 3 weeks ago in the supermarket. I was at the checkout when I felt the same sensation of my heart slowing down as I did on the night of my cardiac arrest. I felt that I was going to black out and had to sit down before I fell down. It really frightened me and I was scared to drive home. I was really concerned because I thought the pacemaker would have started to pace to prevent this happening. I was concerned that the device was not working. When I got home (my husband to the rescue again) contacted the pacemaker clinic, they arranged for me to go in and have the device checked over. They reassured me that the device was working. They told me that my heart had a fast rhythm (VT)  at the time of my ‘funny turn’ and it had corrected itself. The event had lasted less than 10 seconds, if it had lasted longer the device would have started pacing. I was worried that it would happen again especially if I was driving.

I was told that it was better to black out and receive a shock rather than be conscious. This contradiction worried me as people who had received a shock had told me it wasn’t that bad.

The ‘funny turn’ started me thinking again about the journey we had been through. I had my 6 month check the following week. I needed to know if I did have cardiomyopathy, not because of the label but because I needed to understand what it was I’m dealing with and to stop pretending that there was nothing wrong with me.

At my follow up appointment the doctor confirmed that I do have cardiomyopathy. The repeat echo also showed a reduction in pumping rate although nowhere near as bad as when I collapsed.

I wanted to talk to the doctor about my ‘funny turn’ but she wasn’t aware of it but checked my notes and confirmed what I had been told. She also increased my medication after reading a note left by the consultant.

I felt that she really didn’t listen to what I was trying to tell her and I found this very frustrating.

I hope the medication change will prevent another turn.

She advised me to listen to what my body is trying to tell me and this I find hard.

Many thanks  for sharing your story with us.

Sharing your story

As a group we’ve found that it helps to share our trials and tribulations.

The professionals try their best to help support us, but it is group members who can really know how you actually feel.

*Nervousness about tests and how the results affect you and your family.

*Wondering how  the diagnosis affect  everyday living and work experiences.

*Feeling anxious in the middle of the night and finding strength to cope without unduly upsetting your loved ones.

*Feeling that the hospital staff don’t understand enough about  ICD / cardiac arrhythmia.

The list of issues is endless but all members of the group have ‘been there’.

We would love to share some stories especially with newcomers to the group. The information would be invaluable. The story could be related from a patient point of view or from the perspective of  a loved one.

If you feel you would like to do this then email me at gwentdefibbers AT hotmail DOT co DOT uk

We won’t divulge names and it wouldn’t have to take up reams…… just a few words could hopefully make a big difference.

Remember, you do not have to be a member of this support group to leave a comment or contact us.

ALL blog visitors are more than welcome to leave a comment or contact us…

My story…..

My story – Mr Mike Morgan.

Mike worked for a company doing research of Literacy in Wales. In August 2004 he was working in Caernarfon, North Wales when he began to feel unwell. Mike takes up the story

I had finished work for the day and was preparing for the long drive back to Tredegar.

It was a warm day and I decided to buy a bottle of water ready for the journey home. It was around 4pm when I came out of the shop and started to feel strange. I remember my head being thrown backwards twice.

I was told later when I woke up in Bangor Hospital that a Paramedic was passing the shop saw me collapse and gave me a shock. At the hospital a Doctor had found my ID Chain and my mobile phone and rang my daughter to tell her that her dad was in hospital. Unbelievably,the hospital didn’t do any tests although they stated that they thought my heart had stopped twice.  They told me not to drive myself home!

Tredegar is 300 miles from Bangor.

My son and daughter drove up to Bangor to collect me. On the Monday I visited my local GP.

My GP (who was excellent) told me not to drive until after I had seen a Cardiologist at Neville Hall Hospital. I met Dr Tony Davies at Nevill Hall Hospital who said that he needed to carry out an Echo scan. After the test was complete he gathered my family and told us that I was very likely have another attack which would be prolonged and I would not survive this attack. I was admitted onto the Cardiac Care unit and was told that I would need to go to the Heath Hospital to meet a Mr Peter O’Callaghan urgently.

The following day I was transferred to the Heath where I had an angiogram to check for blockages in/around the heart.

On Wednesday 10th August, Peter O’Callaghan requested that all my family come to the hospital as he needed to speak to them urgently. The news wasn’t very good on a scale from 1 to 10 my condition was a 9 ½. I was told I was ill but felt fine. The information began to get worse in that I was told that if I had another attack the next time I might not be so lucky. It was recommended that I had an ICD fitted. This operation was then delayed due to my having a lump on my back which needed to be removed. The resulting wound would need to heal before I had the ICD fitted.

This meant I could not go home because if I had another attack I would die but couldn’t have the ICD fitted until I had the lump on my back removed. I was then put on a monitor for the next six weeks. I could not get out of bed, no showering or using the toilet. It was decided that on the Saturday 30th August (Bank Holiday) that the lump would be removed, but the doctor could not use anaesthetic because they were unsure how this would affect my condition. I then had to wait for the wound to heal and on the 21st

September 2004 I had my ICD fitted. Mr O’Callaghan wanted to find out why I was having these blackouts, and wanted to run some tests. I underwent a turntable test, Neurological test, diagnosis I had was Epilepsy but then that idea was withdrawn. The final diagnosis was made by Neil Austin (not the Million Dollar Man) that they thought it could be the brain rejecting the ICD. I was taken off the Epilepsy medication.

Many people ask me has my ICD gone off – and the reply is Yes. I experienced one shock after another that the ICD aborted after 5 shocks. I was taken to Prince Charles Hospital where the staff (at the time) did not know anything about ICD’s. So it is important that all family and friends know as much as they can about your ICD, so that if you are not in any fit state to tell the hospital at least they can. I had the box changed in April 2010 and that was a straight forward procedure – I went in at 8am and was back home at 6pm. I felt well enough the following day to go out and about.

Every individuals experience is different. Gwent Defibbers is here to ensure that all their members get as much information about ICD’s to help support them, their family, friends and to educate the public.

If you would like to contact Mike to discuss any issues you may have please do not hesitate to give him a call on 01495 711658.

My Thyroid Scan.

Experience shared by a group member…..

I have been taking the anti-arrhythmic drug Amiodarone for about 2 years.

There are a number of side effects associated with this medicine so in order for medical staff to monitor the effects of the drug I attend the GP surgery for 6 monthly blood tests. These tests can indicate if thyroid, liver and renal function are normal. I also ensure that I have annual eye check up.

It was after one of these tests I was informed that my liver function and thyroid results were abnormal. Consequently I was advised to reduce the dosage of Amiodarone and review in a couple of weeks.

Despite the reduction (again) in the drug dose my bloods indicated that I had an amiodarone induced over active  thyroid.

The thyroid gland

thyroid

This required a referral to an Endocrinologist and a plan of treatment was then  prescribed.

The plan was to commence anti thyroid medication but there was an alternative course of action.  The endocrinologist explained that radioactive iodine therapy was effective for some people.

An appointment was made for me to visit the Nuclear Medicine Department where I was to undertake a Isotope Thyroid Uptake Study….

This is a scan which demonstrates the position and activity of the thyroid gland.

My information letter read,

‘Nuclear medicine examinations involve the administration of a small amount of radioactive material known as an isotope. This allows … demonstrate the function of specific systems in the body. Pictures are acquired using a special piece of equipment known as a Gamma Camera’.

This sounds scary but actually (from my point of view) went very smoothly.  I contacted  the Physiology Department for advice regarding the scan and my ICD and reassurances were given that it would be a safe scan.

Pre test

I was informed not to eat fish, drink large quantities of milk 3 days before the test and was given advice regarding stopping some of my medication.

The day of the test 

I enjoyed a light breakfast but was told not to eat or drink anything for an hour after receiving the iodine.

The test

involved entering a room with a radiographer. She then brought out a universal tube similar to this one

Unbranded-Universal-Sample-centrifuge-container

Inside was a few mls of odourless, clear liquid. I drank this in via a straw and the container was then filled with water 3 times and drunk to ensure that all the iodine had been taken. I then left the department with instructions to return in 4 hours.

Needless to say the waiting time between ingestion and scan seemed to take forever!!!

The Scan

On my return I was taken into the scan room.

Initially I thought that my whole body would have to go through the large scanner, however, much to my relief that was not the case. Instead I lay down very flat on my back and the scan was positioned over my neck / head area.

It  did seem overpowering but the radiography staff were fantastic. Whilst one offered constant reassurances the other used a hand held scan over the gland.

The scan  took 10 minutes. I was asked to wait another 10 minutes whilst they did a comparison scan after which I was free to go and advised to minimise contact with children and pregnant women for the remainder of the day.

Some questions & answers on my preparation leaflet included-

Is there any preparation for the test ?-  Read your individual examination letter.

Are there any side effects?No, there are no known side effects. The purpose is to provide information about the function of specific organs in the body.

Can I take prescribed medication? – Read your individual appointment letter.

Will there be any after effects? – There should be no further effects following your examination.

Remember, this is a personal experience.

If in doubt about any aspect of health/ care speak to your health professionals for advice, they will be only too glad to help.

My ICD battery / box change…

Written by a support group member

A little while back I had to have my ICD battery / box changed and so I thought I might share my experiences…..

First off – I AM NOT A GOOD PATIENT!!

dramaqueen

I never used to be like this, in real life I’m bright and breezy but since my heart rhythm problem manifested itself I’ve found that the slightest change in my health triggers alarm bells and I start to panic….

I find the ICD check up an unpleasant experience.

It only takes a few minutes for the Physiologists to run their checks but it always makes me feel vulnerable.

The ICD checks are important. The team are able to monitor heart health and viability of the device.

It was at one such visit that I was told that the battery was running low and I would require a box change, consequently I could expect to receive a hospital letter within a few weeks to arrange a pre-op check and admission date to the day hospital.

Ridiculous but I had a horrible thought that the battery would go flat before any appointment had been made!

A week or two later my letter arrived and I made my way to the day unit.

The nurse that I had contact with was lovely. He talked me through what might be expected on the day. My temperature, blood pressure, pulse and  bloods were also obtained. They were aware of my medications and I was advised about whether or not I could take them on the day.

All I could think of after that appointment was that I wanted to get the procedure over and done with as quickly as possible.

The big day arrived and after a light breakfast I travelled to the day clinic. The department was very busy and bed shortages meant that some patients had to return home, luckily I was allocated a bed, introduced to the nurse who would be taking care of me and then had a visit from the doctor who explained the pro’s and con’s of a device change after which I signed the consent form.

Before my visit to theatre I received an intravenous antibiotic infusion and this was administered to minimise the potential risk of infection….

My feet are always cold!!

I recalled that before I underwent an angiogram a few years previously I was warned me that the theatre would feel cold and if it made me more comfortable I could wear my bed socks!!!

Such a little thing – but what a difference!

I’m glad to say that I remembered that bit of advice and I’m really glad that I did. The theatre did feel very cold and the bed socks were very welcome.

The staff, as always, were fantastic. The worst bit for me was having to lie flat on the trolley. The fact is though that there was so much activity going on around me I didn’t really have time to fret.

Those meds are just sooo relaxing……

image copied from puffun.com

relaxed

Next thing I recall is arriving back on the unit and enjoying a well sweetened cup of tea without a care in the world.

A short while later the Physiologist came down with the little machine to check that everything was OK and I was allowed home.

Apart from feeling that I had a small egg stuck in my chest I felt great and within 2- 3 days was definitely back to my normal self. My wound which was an extension of my original wound healed very quickly……

I’m sure that I will experience the same anxiety next time…..but it does good to share and if anyone out there has similar experiences please let us know.

REMEMBER…There are a number of signs and symptoms associated with anxiety and the British Heart Foundation (BHF) can offer advice via leaflet to help you cope with these feelings as can your GP and / or ICD nurse specialist.

What a difference a day makes.

One minute you seem fit and well, the next minute your life changes.

On Wednesday 15th July 2009 my husband Jeff Davies felt unwell. Being a keen marathon runner he had just taken part in the Cosmeston Lakes Relay just outside Penarth, Nr Cardiff.

He had run this race many times.

On the way back to the car he felt his heart racing and it would not slow down.

On the way home he blacked out and so I drove him to the University Hospital of Wales (UHW) where his heart rate reached 210 beats per minute.

He was diagnosed with ARVC   http://www.bhf.org.uk/heart-health/conditions/cardiomyopathy/arrhythmogenic-cardiomyopathy.aspx  and now has an I.C.D  ( or CID his 24 hour paramedic as it is known to us).

During 2009 Jeff had signed up to do a HNC course  (University of Glamorgan) in building maintenance at Bridgend College.

Having experienced a blackout he had submitted his driving licence voluntarily back to the D.V.L.A. which meant that he had to use public transport to travel from Caerphilly to Bridgend to attend his course. His return home was lucky because fellow students gave him lifts and a BIG THANK YOU to them for helping him during this time.

On Friday 25th July 2011 (2 years after having an ICD fitted) he was awarded his HNC qualification and a student of the year award at an award ceremony at University of Glamorgan.

What a very proud day with lots of memories and photographs.

In 2010 Jeff, myself and our son Jonathon took part in the BHF Gower Bike Ride completing the shortest distance and raised funds for the B.H.F. Jeff and I took part in the  Gower Bike Ride  again this year and completed the 209 mile route this time.

We have supported a request from Mandie Welch (Arrhythmia Nurse Specialist at UHW) to talk to people who have a defibrillator to discuss their anxieties.

Sandra Davies (Gwentdefibbers Secretary)