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Worried:(

Jul 22, 2008 - 1 comments
Tags:

fainting

,

dilated

,

cardiomyopathy

,

worry



I have had to fight my case from day one, firstly being told there was nothing wrong with me, then told I was suffering from panic attacks (I don't do panick!)
I had so many trips to the G.P and A&E that I have lost track.  Now things seem to have taken a turn for the worst and i'm getting scared.

My symptoms started one eveing during a keep fit class when I was 28yrs, I suddenly felt very odd and came round on the floor feeling confused and a little embaressed!
I blacked out again at home while sat on the edge of my bed, I was also experiencing a heavyness in my chest.
At this point my husband decided we needed a trip to the hospital.  While there they did a chest xray and numerous bloods, everything came back fine and they sent me home in the early hours of the morning.

From that day the symptoms steadily got worse, chest pain, constant palpatations, weakness, fatigue, tiredness, light headedness, blacking out and fainting.
Each time I went to the G.P or Hospital they did the same bloods, an ecg, chest xray and sent me home saying I was fine.

After 5 months of this I finally saw a different doctor who organised a 24hr holter, a week later I sat in her office being told I had alot of ectopic beats but it was fine, at  this point I broke down in tears and said, "no it's not ok I cant live like this any more", she looked concerned and asked how often I was getting the symptoms, when I replied, every day, all the time! she booked me in for a heart scan.

2 weeks later I sat with my husband waiting for my scan, the whole time thinking I was going to pass out, I felt terrible, but was not prepared for the outcome to come.
The sonographer did the test and asked me to wait for a minute, we were shortly joined by two nurses and a cardiologist who all looked far too serious for my liking.
We were told I was being admitted and they couldn't believe this had not been picked up on earlier.

It turned out my heart had been attacked by a viral infection which had caused Dilated Cardiomyopathy & Myocarditis which they needed to treat asap.
I stayed in for 4 days, they started me on Bisoprolol 2.5mg & Candesartan 8mg.
When I got out of the hospital I felt totally wiped out and slightly confused as they didn't really explain very much.

At first I attended a heart clinic every 6 weeks, then 3 monthly, then on my last visit a few months ago I was told the symptoms were stable so I didn't need to be seen for a year!
I walked out and sobbed! I didn't feel that I was being listened to, yey again.  I had told the cardiologist I had been feeling more worn out and had passed out more again recently but he had said don't worry it's not getting worse, the drugs had dropped my blood pressure which was why I was light headed and passing out.

Two months later I ended up back in A&E with chest pain and a drop in tollerance to the slightest bit of exercise,
I was admitted for another 4 days, they decided to do another scan which showed no change except a slight regurge?
The cardio decided I needed a reveal implant which would tell us if my passing and other symptoms were due to low blood pressure or my heart.
After only 2 weeks of having the monitor I had recorded 7 events, I rang the hospital as I wasn't sure how often they were supposed to read it, they said it only recorded about 3!!!!
I was so cross as I knew that the 6th recording I had made was significant as I had taken a really odd turn and almost blacked out (but didn't).
I went in for a download 2 days later,  luckily the new recordings had over written the first few, after the download I was faced with 'that' look again and asked to wait a moment.  The cardiologist said I was having Ventricular Tachycardia, my heart had been beeting at just shy of 200 bpm.  I had such a mix of feelings, I was relievd that the implant wasn't a waist of time, cross that I had been brushed off again before and very concerned, he doubled my bisoprlol and sent me home.

I was booked in for a stress test the following week, so wasn't too worried about going home as would be seing someone again soon.  I had to stop the bisop 2 days prior to the stress test, so I gave the hospital a quick ring to check this was still ok since the new findings, I was told to carry on as previously told.

After two days off the bisop I felt terrible and only just made the walk from the carpark into the hosp, I had constant palpatations, racing beats at times, very light headed and shortness of breath.  When I got into the room I was asked to sit down and told they could not do the stress test as it could be potentially dangerous! He asked how I felt, to which I told him I had felt awful since stopping the drugs, at this news he spun arround asking why I had stopped them, I explained and he looked furious, after asking if I had brought the drug with me, he asked me to take them asap after he performed yet another heart scan to get some measurements.  He told me I also needed an MRI asap and possibly electrophysiological testing which he breifly explained.  But, before I can have the MRI I have to have the implant out! (this friday)

Once they have the results, they may be able to maintain things with more meds or I may need a special type of pace maker called a defibrillator.
Back at home I sobbed for almost 2 hours, I feel like I suddenly don't know what the future holds, I want to see my boys grow up and grow old with my husband.
What ever the outcome I don't mind what they need to do as long as I can get some sort of normality back in my life and loose the feeling of impending doom.  All I have had for the past 2 years is bad news, I hope i'm due some good news sometime soon!!???


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Avatar_m_tn
by rockcityaudiouk, Jul 31, 2008
Hi,.I'm totally with you on how hospitals totally wind you up.
now here is what I do.Every A&E trip or doctors appointment I take a friend with me.
this friend takes names,notes,details of the smallest things,you will be surprised when you asked a doctors name or to see their actual I.D how they "transform"into more caring doctors only too willing to explain details.(it does help though that my current girlfriend is a medical lawyer.
Only yesterday I was in A&E in UCH in London,I was totally ignored after my now routine ECG(normal)routine check.(must be like 500 by now)it was amazing when I said to some dopey nurse why is it that my observations have not been done properly?please meet my medical lawyer(including card)given to her.
after that the senior registrar came down!and everything was,I mean everything,blood gases,chest x ray,one more ECG,well it was comical but sad that threats of legal stuff had to force them to get their finger out of their A***.
the NHS I'm sorry to say Does not show much compassion.but you have rights and if your unsure just stop them in their tracks by taking all names,everyone's names even the nurses,its good practice,has helped me and makes good legal sense.also if you can keep all copy's of all your diagnostic letters and scans,these can usually be bought on a DVD for a small price,I got all mine for £20 on a DVD.should you decide to go private or fly to USA where to be honest they are much better in this area why not do it.
I like and love this country and the NHS but sometimes the way they work is pure insanity!.
Like apparently I've got a consultant in sept that I may not see!but may see some lackey under study!
I've made it known however that the consultant had better be there!:0(
john.x

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