Well the phone call came and although it wasn't a no it is still a maybe as they now want to carry out a Right Heart Catheter test. For those that don't know, this involves pushing a flexible wire into your heart from your groin or neck in order to read the pressures inside it. It is not nice and I, with my needle phobia, find them very traumatic. I immediately refused this procedure but agreed to think about it over the weekend. They will phone me back to discuss it further on Tuesday and, if I agree, fix a date. I know it sounds silly but I would have been happier with a straight 'no'. I have a real fear of this test, my last one was a disaster, and nothing on God's green earth will make me take another one. I think this will mean the end of my transplant if I don't but I just can't do it and I've been tearful all day.
So with the knowledge that I will no longer be on the list I had to go and attend my regular appointment at the Brompton. They had obviously been forewarned as my specialist nurse jumped into action straight away and took me into a quiet room to discuss the situation. Having asked if there was anything that could be done to make taking the test easier for me I said I'd do the procedure but only under general anesthetic, I've had it done this way before. This was refused so the stand off is still on going. After an hour of back and fore discussion the subject was finally dropped. There was some good news though, all the results are now in from my tests earlier in the week and it is looking really good. All my other internal organs are working normally and my coronary arteries are clear with no kinks or blockages, the only cloud on the horizon is in the blood gas and lung function tests, both of which are dreadful, but I knew that anyway, why else would I need a transplant!
I don't know if anyone else feels like this but sometimes I feel that my life is just one long medical test. The last three months, when I haven't been ill, I've either been working or in hospital being tested for something and I think it has all become just too much. I really want just to have some time to have fun. I can't remember when I really had fun. I've been out and enjoyed myself but hospital's and tests, tablets and of course this damned machine are all hovering in the back of my mind ready to spoil things at a moments noticed. After this week all I want to do at the moment is curl up under the covers and cry myself dry.
The journey home was quite interesting, the traffic was absolutely terrible. We don't go through the center of London we skirt around it after being caught in a jam on Oxford Street lasting over an hour. After stop-go, stop-go for miles we finally hit the M1 and turned on the radio for local news. We were totally shocked to find that there was a nutter threatening to blow himself up in the middle of Tottenham Court Road and police were diverting traffic. And what was he protesting about? He'd been refused a HGV license. Some people!
It is back to work tomorrow and I'm on lates so I get the best of both worlds, a lie in and my dinner cooked for when I get back. Now I'm off to put my feet up with a nice cuppa and try and lose myself in Neighbours for half an hour.
So with the knowledge that I will no longer be on the list I had to go and attend my regular appointment at the Brompton. They had obviously been forewarned as my specialist nurse jumped into action straight away and took me into a quiet room to discuss the situation. Having asked if there was anything that could be done to make taking the test easier for me I said I'd do the procedure but only under general anesthetic, I've had it done this way before. This was refused so the stand off is still on going. After an hour of back and fore discussion the subject was finally dropped. There was some good news though, all the results are now in from my tests earlier in the week and it is looking really good. All my other internal organs are working normally and my coronary arteries are clear with no kinks or blockages, the only cloud on the horizon is in the blood gas and lung function tests, both of which are dreadful, but I knew that anyway, why else would I need a transplant!
I don't know if anyone else feels like this but sometimes I feel that my life is just one long medical test. The last three months, when I haven't been ill, I've either been working or in hospital being tested for something and I think it has all become just too much. I really want just to have some time to have fun. I can't remember when I really had fun. I've been out and enjoyed myself but hospital's and tests, tablets and of course this damned machine are all hovering in the back of my mind ready to spoil things at a moments noticed. After this week all I want to do at the moment is curl up under the covers and cry myself dry.
The journey home was quite interesting, the traffic was absolutely terrible. We don't go through the center of London we skirt around it after being caught in a jam on Oxford Street lasting over an hour. After stop-go, stop-go for miles we finally hit the M1 and turned on the radio for local news. We were totally shocked to find that there was a nutter threatening to blow himself up in the middle of Tottenham Court Road and police were diverting traffic. And what was he protesting about? He'd been refused a HGV license. Some people!
It is back to work tomorrow and I'm on lates so I get the best of both worlds, a lie in and my dinner cooked for when I get back. Now I'm off to put my feet up with a nice cuppa and try and lose myself in Neighbours for half an hour.
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ReplyDeleteHi Hazel,
ReplyDeleteYou say your last RHC was a disaster. What was the problem?
I hope you find the courage to proceed.
Best wishes
John