Some of us fly high and some of us fall. This is a falling time.I had never heard of Polycystic Kidney Disease or Pernicious Aneamia, until yesterday. Today I was educated. I really didn't want to know, prefer to bury my head in the sand. It's autosomal dominant.
One phone call said it all. I was shocked, didn't believe what I was hearing, this is not happening, can't be happening.
At this time, she has refused Dialysis, and she is having an allergic reaction to the B12 injections, therefore needs blood transfusions. For the rest of whatever life she has left. There is no quick fix, actually there is no fix at all.
"Hello?" Her: " I want you to do something for me" Me: "Hmmm, does it need to be done today? Oh, you better tell me what it is first." Her: "I want you to organise an Enduring Power of Attorney" Me: "A what?" Her: "An Enduring Power of Attorney" Me: "What is it, and what's it for?"
The explanation was hard, the implications worse, the prognosis shocking. What do you say after hearing that? Of course I'll do it, no problems? She's basically telling me she's dying, and needs someone to take care of all aspects of her life. She doesn't want anyone else to do it. I am really angry with her. Go and get another opinion, do something. I don't want to do this, it's not my job, give it to someone else.
Me: .....................................................................................silence. Her: "Helloooo!! Are you listening?" (Of course I'm bloody listening, I'm dying inside, I don't know what to say) Me: "Um, OK. When do you want me to do it?" Her: "As soon as possible. Don't procrastinate, just organise it". Me: "Of course I'll do it, I'll get to it sometime this week, as soon as I can organise a day off". Her: "Allright, I'll hear from you soon. Bye".
The next day: Me: "Hi Mum" Her: "Hi Angel". Me: "How are you?" Her: "I'm well, and how are you?" (What do you mean, you're well? You're not well, you just told me yesterday that you weren't) Me: "I'm good". Her: "I forgot to tell you yesterday that Dr P said I needed to let you know that the PKD is autosomal dominent, and you need to tell your Doctor as soon as possible". Me: "And that means what, exactly?" Her: "It's hereditary, there is a 50% chance you have it, your Grandmother had them and both your Aunts, as well.". Me: "When did you find out all of this?" Her: "Oh, years ago, but I didn't take much notice, I used to call them 'polkadots on my kidneys, and they have spread to my liver and pancreas as well". Me: "When did you know it was hereditary?" Her: "Yesterday, Dr. P thought I already knew because I've had it for such a long time, before he became my Doctor. Me: OK, thanks. I'll make an appointment to see Dr. C .
I'll be in touch as soon as I've sorted somethign out".
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