Possibly joining the ICD club
Well, this has been an exciting week.
Last Thursday the heart transplant team at Birmingham rang with the news that they were restarting detailed assessments, but as two long outpatient days rather than three inpatient days. They hope to assess me next week subject to a review of a recent lung function test which showed my lungs operating at 75% of normal - not great when you add it to their July assessment of my kidneys at 33% of normal, so I already wouldn't be surprised if they decided not to waste their time.
Then on Friday I noticed my right calf was sore. I thought I'd just knocked it: I'm on rivoroxaban so unlikely to be a dvt. By Sunday it was very painful and I went to an emergency treatment centre, who did a blood test and said it looks like a dvt. We can't increase your blood thinners. Come back on Monday for a doppler scan or come back beforehand if things get worse.
Overnight Sunday to Monday I started having difficulty breathing so rang an ambulance and got a blue light trip to hospital. At that point they were thinking dvt/pe but the doppler scan and a chest ct scan both said no.
On Tuesday they were still unsure what was going on but knew I was carrying excess water so had sarted iv diuretics and also iv antibiotics on the theory I had an infection.
There was some debate about whether I should move from the ED ward to a general medical ward or to a cardiac ward. I was therefore talking to a senior cardiac nurse when I went into VT. Passed out, recovered, apologised and then lost five hours. Woke up in the Acute Cardiac Ward in a different gown with a different set of cannulae and no reliable memory of the intervening period (although I had clearly been somewhat aware as I had a vivid dream about arguing with the doctors who refused to take the time to tell me what they were doing). Was told drug cardioversion hadn't worked so they shocked me back into rhythm.
I'm glad I was in hospital at the time rather than alone at home. Especially when a procession of nurses popped in to tell me how glad they were I'd survived!
So now I'm sitting in hospital, waiting for the doctors to decide what next. The heart transplant team don't know any of this yet but the two sets of doctors will be in contact later today or tomorrow. I doubt the assessment will go ahead as it would have involved me driving an hour and a half each way for two days and that isn't going to happen. I've been told I'm not going home before next week.and that I'll probably be getting an ICD. I'm probably going to have to pull out of a house move planned for October as I can't face all the upheaval and stress on top of the medical stuff.
As I said, an exciting week!
You know you're wired when...
You trust technology more than your heart.
At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!