Caporegime
As many of you know, I’ve been battling a congenital heart condition my entire life. Well, things have moved on dramatically, so I thought I’d give you an update.
Last March, I went into a slow form of atrial tachycardia. An echo showed that due to weakening heart function, I had developed a clot in my right atrium, roughly the size of a pea. I was placed on heparin to reduce it. but had to stop taking it after severe nose bleeds. This meant they couldn’t put me back into sinus rhythm as the shock given to my heart could blow the clot out, causing massive stroke or embolism. Over time my condition has deteriorated, and I returned to the hospital yesterday. The clot has grown to the size of a grape and is starting to interfere slightly with blood flow through the heart which is making me feel worse. They are out of options though and cannot get rid of the clot without risking a stroke or embolism, both of which would probably kill me in my current state. The only way out is a transplant, which they have talked about for years, but I’ve never been ill enough to go on the list.
The Freeman hospital in Newcastle are aware of me and have asked for full liver works to be done as my liver is damaged from the years of poor circulation, and they need to make sure it is working well enough to withstand the strain on it after transplant. I will be having CT scans and other investigations soon, both at my regular hospital in London and the Freeman (not looking forward to the journeys coming up!). Hopefully, all will be OK and I will be placed on the list. If not, then my last hope is gone and I go on to palliative care to make me as comfortable as possible for the time I have left.
Also, my ICD, which protects against cardiac arrest is nearly out of battery, so I need another operation to replace that.
It’s a very scary time and I am honestly ******** myself, but I just have to smile and get on with things the best I can. I’m still feeling OK in myself when resting but am struggling to walk more than 20 yards now without breathlessness and a racing heart. The ticker has just done as much as it can, there’s no more left.
I’ll update this thread when there are further developments. It’s good for me to talk to people on here as I don’t get out much in my current state as you can imagine, so opportunities for talk are limited. Thanks for listening
Last March, I went into a slow form of atrial tachycardia. An echo showed that due to weakening heart function, I had developed a clot in my right atrium, roughly the size of a pea. I was placed on heparin to reduce it. but had to stop taking it after severe nose bleeds. This meant they couldn’t put me back into sinus rhythm as the shock given to my heart could blow the clot out, causing massive stroke or embolism. Over time my condition has deteriorated, and I returned to the hospital yesterday. The clot has grown to the size of a grape and is starting to interfere slightly with blood flow through the heart which is making me feel worse. They are out of options though and cannot get rid of the clot without risking a stroke or embolism, both of which would probably kill me in my current state. The only way out is a transplant, which they have talked about for years, but I’ve never been ill enough to go on the list.
The Freeman hospital in Newcastle are aware of me and have asked for full liver works to be done as my liver is damaged from the years of poor circulation, and they need to make sure it is working well enough to withstand the strain on it after transplant. I will be having CT scans and other investigations soon, both at my regular hospital in London and the Freeman (not looking forward to the journeys coming up!). Hopefully, all will be OK and I will be placed on the list. If not, then my last hope is gone and I go on to palliative care to make me as comfortable as possible for the time I have left.
Also, my ICD, which protects against cardiac arrest is nearly out of battery, so I need another operation to replace that.
It’s a very scary time and I am honestly ******** myself, but I just have to smile and get on with things the best I can. I’m still feeling OK in myself when resting but am struggling to walk more than 20 yards now without breathlessness and a racing heart. The ticker has just done as much as it can, there’s no more left.
I’ll update this thread when there are further developments. It’s good for me to talk to people on here as I don’t get out much in my current state as you can imagine, so opportunities for talk are limited. Thanks for listening
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