Saturday, 14 March 2009

long update...

I'm sorry for the lack of bloggage and lack of contact lately, I've had emails, facebook messages, texts and I just haven't replied to any of you, I am so sorry! Things have been a bit rocky. Due to a poor appetite I've not had much energy to do anything. When that happens or I'm feeling worse than usual it affects everything including my mood. I've not had motivation to do anything and have spent alot of time lounging in pyjamas. My lungs have been, I think the best word to describe them is 'ratty'. They just feel angry. I've seen the doctors at the hospice and my nurse practitioner has been out to confirm it isn't infection. My nurse practitioner advised I increased my morphine and diazepam. It is the only thing that can be changed when things aren't going well, it is the only 'fix'. That's resulted in more dovet days than usual in the past week or so. On a transplant front, I know alot of you have been asking about this so here's your up date. In my last blog about it I made it sound very simple, for those of you that know me you'll know I'm not that simple! It's been a case of one step forward and one backwards. The reason or the main reason anyway that I couldn't get onto the UK transplant list was because I was told there was problems with my respiratory muscles, they didn't move in the right direction and so that would make recovery from a transplant too dangerous. Plus I was told that the problems with my respiratory muscles were the biggest issue anyway and new lungs wouldn't fix that. Tests in London, invasive, more accurate tests on my respiratory muscles have come back 100% clear... There is nothing wrong with them. That's the step forward...
The step backwards. London have reason to believe the secondary condition I've got (the condition I've got as a result of having diseased lungs for so long) has got worse. I've got secondary pulmonary hypertension (SPH), a condition that affects the heart and blood vessels and the London team believe the blood vessels around my heart and lungs have become narrower and are going into spontaneous spasm. When this happens my oxygen levels can drop by upto 50% as it literally cuts off the oxygen supply to my body. This is what they believe is happening. There is only two ways to diagnose this, one being a lung biopsy which I am not fit enough for the other being a right heart catheter which doesn't come without its risks. At the moment I am waiting to hear if this can go ahead in the intensive care unit. If it can't be done or if when given the risks I decide against it (and that has crossed my mind because I know what the risks are) I don't know where that is going to leave me. They have said if the SPH is stable I will be able to go onto the transplant list for a single or double lung transplant and I could just be listed for whatever comes available first. If it turns out to be progression in SPH there are treatment options but they don't hold much hope for them at this stage and it will eventually mean I will need a heart and double lung transplant.
So that is where things stand at the moment...
As some of you may know I've just become the Good Will Ambassador for the charity Breathe On UK. I will hopefully be attending my first conference in April to launch a parent support pack at Portucullis House, Westminster, London. I have to say I'm rather excited!

3 comments:

loulou said...

congrats hun on becoming Ambassador!! Yay! Had a quick peek on the charity website last nt and looks great. So a lot rests on whether u can have this biopsy...fingers crossed all goes well hun. A lot of people love and care for you!!! Ur a star xxx

loulou said...

Hope u ok hunnybun??? Not seen a post for a while jus thought I'd send my love to you xx

Marty Zelei said...

Hello Rachael,
Just wanted you to know that you are in our prayers. Hope that things are going well for you and that you are still progressing toward the transplant list.
Monica

 
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