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! 


4 Comments

Wow! Thanks for sharing.

by crustyg - 2021-09-09 09:33:55

It puts flesh on the old Chinese curse 'May you live in interesting times' - but at least you're out the other side for the moment and able to share!

Hopefully the transplant assessment team will understand that this increases the urgency and find a way to overcome the logistical challenges.

Best of luck.

I hope for the very best for you

by Gemita - 2021-09-09 10:23:48

Atiras,

Yes, thank you so much for sharing your news.  

You sound tough mentally and very positive despite what you have been through and despite what you are potentially facing.  I am sure if anyone can get through this, it is you.  

I am glad you are being looked after and that they will not discharge you from hospital until it is safe to do so. While in hospital, take advantage and ask lots of questions without putting yourself under any pressure or fear.  You really are in the best place for the moment.

I wish you well Atiras and remember we are always here if you need to chat.

Gemita

ICD

by Julros - 2021-09-09 23:20:35

I have been out of hospital nursing for a few years, but when we a patient nearing transplant, I seem to remember ICD implantation was standard. 

ICDs

by Selwyn - 2021-09-10 12:48:08

And here you are posting! You are so strong to be able to do this after such a dreadful experience. I am sure that strength will stand you in good shape for having a transplant.  I suspect waiting is the worst bit.

I played table-tennis a couple of evenings ago with my heart transplant friend. Admittedly, he only managed an hour of play, but then he is recovering from a nasty bout of Covid ( which he gave to me!). He told me that having Covid was worse than having a new heart.

We all hope you get your health improvement as soon as possible. We have a lot to be thankful for our NHS. It certainly sounds as if the hospital is keeping you in their care for safety. That is a lot reassuring than most of us get before we have a pacemaker ( or ICD). I spent a few days walking around carrying my own defibrillator and having to instruct those around me how to use it in the event of my collapse! An ICD sounds like a very good idea whilst you are a patient patient. 

You know you're wired when...

You trust technology more than your heart.

Member Quotes

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!