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My daughter died ten days ago

(501 Posts)
AlieOxon Fri 15-May-15 15:04:21

Of acute pulmonary oedema, we have just heard.
She hadn't seen her consultant for four years for her kidney condition
She probably wasn't taking her potassium pills.
We didn't know she was risking her life. She probably didn't.
.....and I am really angry.

There is a black hole in the middle of our family.

But what I really want to say is that although the condition she had is very rare (Gitelman's Syndrome, if you want to look it up) that I have found there is a similar risk in people with heart conditions who are taking some diuretics.

We should have known that she was at risk. From what I find, this is only recently realised by the medical profession about GS patients - there may be only 1500 in Britain. I don't know if heart patients are warned.
I feel this should be better known.

AlieOxon Fri 10-Jul-15 14:25:04

I've just emailed Cruse....I had a letter recently, weeks after I rang them, and I've lost it.......

kittylester Fri 10-Jul-15 14:45:06

Alie, if it's not one thing it's a flippin' other. Relax for a while! flowers

AlieOxon Fri 10-Jul-15 15:00:20

Hey, I need some counselling, which is what the letter was about..............and their phone line was shut.....saved me looking for the letter!

Anne58 Fri 10-Jul-15 15:28:46

There is an organisation called FIG (families in grief) you might have a look at that as an alternative to Cruse.

AlieOxon Fri 10-Jul-15 16:08:49

....says it's for North Devon?
i have phoned the Child Death Helpline.
But Cruse is supposed to do counselling face to face

AlieOxon Fri 10-Jul-15 20:54:51

Cruse will phone me Monday

AlieOxon Sat 11-Jul-15 03:56:05

Jayne made one mistake, and lost the rest of her life...

Anya Sat 11-Jul-15 06:30:28

Alie (((hugs)))

soontobe Sat 11-Jul-15 06:49:38

I hope that cruse can help you a lot.

loopylou Sat 11-Jul-15 06:54:04

(((Hugs))) Alie x

NfkDumpling Sat 11-Jul-15 09:02:07

Oh Allie. ((((((((Extra big, all enveloping from a large lady hugs))))))))

harrigran Sat 11-Jul-15 12:36:37

Alie flowers

Lona Sat 11-Jul-15 12:39:29

Alie big hug from me too, we're all with you love. flowers

Tegan Sat 11-Jul-15 12:43:07

I do hope that one day some of us will be able to, perhaps, meet up with Alie and give her a hug in person; not yet obviously, but one day in the future.Till then I hope that our thoughts give her strength.

AlieOxon Sat 11-Jul-15 13:26:35

Thanks....
.....I am really not well today. Colitis worse and a streaming cold and a temperature, couldn't sleep - I'm not getting rid of the cold because I am on the steroids, I think.

And angry with my doctor who suddenly wants me to have another endoscopy, not realising that this has got me scared and defensive as well as everything else!

I have got the car but not been out since Thursday because not well. It's ok.

AlieOxon Sat 11-Jul-15 13:27:06

Talked to M which helped a bit.

Bellanonna Sat 11-Jul-15 13:27:41

Nice post Tegan. And I agree

AlieOxon Sat 11-Jul-15 13:45:50

Thanks.

annodomini Sat 11-Jul-15 14:03:31

I'm so sorry to hear that you're still so unwell, Alie. I wonder if your doctor is proposing an endoscopy because she/he just doesn't know what else to suggest. Thinking of you. flowers

Luckygirl Sat 11-Jul-15 18:10:44

You seem to have so many things piled on your shoulders at the moment Alie. You really are doing so well to just get through each day and I have to commend you. What a dreadful patch for you this truly is. flowers

AlieOxon Sat 11-Jul-15 19:59:10

Dr proposed endoscopy = colitis promptly got worse.....and is now a little better, as I have relaxed a bit and don't have to see her until the 15th.
I have noticed it reacts like this, and as quickly, before!
Cold is still bad though, but I managed to change my bed today.

Had a talk with K too - he really is on a stiff learning curve running the house and kids...some of the council stuff may be getting sorted out.
I may hear from the social worker, in which case I will give him a very good report!

Jomarie Thu 16-Jul-15 21:58:54

How are you Allie? - no posts for a while - just a bit worried - there's been so much for you to cope with and not being well either. Please let us all know you are OK and putting one foot in front of the other still. cupcake

Luckygirl Thu 16-Jul-15 22:04:03

Indeed - how are things Alie - has your cold finished yet?

kittylester Fri 17-Jul-15 06:35:28

Life in the Lester household has been a bit manic Alie so I haven't been on GN much lately but I have been thinking about you and wondering how you , and things, are?

harrigran Fri 17-Jul-15 06:40:41

Hope you are feeling a little better Alie flowers