Wednesday, 19 August 2009


So there's news. It was what I expected I guess, Pre Transplant clinic 22nd September. It just puzzles me where 'urgent' comes into that. I understand its holidays, everybody is away and it's a multidisciplinary meeting, involving co-ordinators, dieticians, social worker, physiotherapy, my consultant, so everyone has to be gathered together. Alot of people will say "wow 4wks to wait for an appointment is nothing". But it will be a year since I was in the hospice where I was given just days to live. I don't have the luxury of being able to wait around for 4, 5, 6wk appointments anymore. I've waited upto 8mths before for appointments and there was no way around that and I just had to wait and that was that and it looks like this is the same. I have done my fair share of waiting and I understand why you have to and I'm not an impatient about it, I just know that time isn't on my side anymore and should I get listed I could be in for a anything upto 4yrs wait for a donor so I'm conscious of that also. 4wks is the best, the earliest they can do, I accept that and I will wait, you know what they say about good things?...
I think my mum was more upset about it than I was. We had expected earlier but I had been told it would be weeks before we hear anything so I had braced myself for around the 8wk mark. I think more than anything I'm just grateful I know when it's going to be and knowing that things are happening without me having to poke the stick. Something I've always done and something I believe in the NHS that at times saves you from being just another file they brush to one side. Also the plan had been to see the surgeons after the review in clinic so I may not actually go active (provided there's no medical reason I shouldn't) until after I've seen them. If it's a yes I can go on the list that is, we don't know for sure because the results are still being collected from the assessment. And then I will have to wait for another 6wks+ to see the surgeons, to do chest measurements and final paperwork etc.
So there you have it. I could be looking at another 12 or so weeks for everything to actually be tied up and done with.


Tori said...

That's madness why does it take so long? Lung measurements? Sent me a message on facebook and we can discuss it :) I'm so nosey xx

Shannon said...

My husband waited 3.5 years on the transplant list and received his miracle 4.5 years ago after 5 dry runs. During his wait, he was on a ventilator for 9 weeks and the doctors said he had only days. Never listen to doctors!

He was on the breathing machine for 9 months and we (him and I) worked hard to get him to breathe on his own... which he did. The machine was gone and he continued to breathe on his own for another 2 years before receiving his transplant. So much for doctor's knowing everything!

Don't give up and remain strong in family, hope and love. You are a strong woman and will get through this...

If you want to, please feel free to check out my blog at: Angel Cove Transplant Blog or my organ donation awareness website. Best of luck and many blessings!

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