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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.

Mishap Tue 16-Jun-15 17:27:19

Well done for going out and facing the world - a good first step on a long road. There are others here who can walk this road with you. Stay strong. x

AlieOxon Tue 16-Jun-15 18:06:01

Yes, I went, and M took me, and most people didn't talk much about it, but the ones that did were helpful.
It was a lecture/performance about the history of popular music, and I was fine and singing along..... until the man got to Vera Lynn and when he played that song I just burst into tears.
On the front row. But M hugged me and produced tissues. I am ok.

It just hooked into other losses, like my parents - I heard that song when the war was still on, I just remember the end in 1945.
A bit too much, and completely took me by surprise.

I was ok by the end. Had tea and chatted.
But glad to be home.

whitewave Tue 16-Jun-15 18:10:29

I expect that you are somewhat knackered. R & R this evening.

AlieOxon Wed 17-Jun-15 10:42:51

Maybe I didn't do too badly yesterday.
Today I have been on the phone to K, baby's dad, as he is ill....and also worrying about everything....hopefully he will get to see a doctor today, think he has a chest infection, temp etc.....will go over there tomorrow I think.

grannyactivist Wed 17-Jun-15 10:46:58

Alie if you're able to get up and dressed in the morning then believe me, you're doing not too badly at all! Thinking of you. flowers

Bellanonna Wed 17-Jun-15 10:52:45

Don't overdo things though Alie. It's good that you and K are supporting each other and good, too, that it gives you the chance to talk about your daughter with him.

AlieOxon Wed 17-Jun-15 11:34:20

Thanks.
Going to Oxford tomorrow just to see how things are by then...K speaking to doctor soon but I think he should be seen!

Solicitor's appt has been put off until Monday (was tomorrow) so I will go again then. It is fairly urgent.

What I am NOT doing, if I can possibly help it, is going to Oxford two days running!

kittylester Wed 17-Jun-15 12:17:22

(((hugs))) Alie. You are doing remarkably well. brew

HildaW Wed 17-Jun-15 13:19:37

Commiserate with you about going into Oxford, you certainly need your wits about you there. We lived in Abingdon for years and began to find Oxford, although stunningly beautiful when quiet, a tough place to be when you are feeling vulnerable.

Look after yourself. X

petallus Wed 17-Jun-15 14:38:50

Parking in Oxford is a nightmare. I always use park and ride.

I'm full of admiration for your courage AllieOxon

AlieOxon Wed 17-Jun-15 15:08:58

I have been given a couple of permits by K so I can get near enough to walk....can't walk very far these days!

I hate going into the centre of Oxford and even getting through there, have to allow an hour from here. I left Oxford for peace and quiet...Didcot has half the crime, though you wouldn't think so recently.....

K seeing doctor on Friday morning. Good.

Mishap Wed 17-Jun-15 16:17:56

The centre of Oxford must be a nightmare - I do admire you for doing it at all. I have only been there a few times - but that was enough!

Well done for keeping going and being there to support everyone else.

NfkDumpling Thu 18-Jun-15 07:29:59

And I was thinking of going to Oxford on holiday! (I haven't been since I was in my teens). Gone off the idea now!

I agree about staying away from throngs of people. It's stressful at the best of times and certainly not what you want now!

Glad your K is seeing the doctor quite soon. Shock will have made him vulnerable to bugs. Dew yew take care on yorsel - as they say in these parts.

AlieOxon Thu 18-Jun-15 09:30:07

I think he's breaking his heart.

I am just doing what I can

Iam64 Thu 18-Jun-15 13:09:37

Catching up with this AlieOxon and sending love and positive thoughts. flowers

AlieOxon Thu 18-Jun-15 18:44:14

I have passed on the info you sent.....see solicitor now on Monday! Thanks.

Iam64 Thu 18-Jun-15 19:15:40

Best of luck, good to hear you are seeing a solicitor x this must fit into the 'exceptional circumstances' thing, though these days, who knows !

AlieOxon Fri 19-Jun-15 13:06:53

K has been to the doctor and got antidepressants - as expected. Hope they help.....

Marelli Fri 19-Jun-15 13:13:55

The tablets will help him through the next wee while, Alie. I hope you're taking good care of yourself, too. flowers

Mishap Fri 19-Jun-15 18:40:54

If he has been given anti-depressants, you need to be aware that they sometimes take a couple of weeks to kick in. I do hope that they will start to help him soon. He must indeed be breaking his heart, as you say. So hard for all of you. flowers

AlieOxon Fri 19-Jun-15 19:11:09

Yes, and I think he is aware too.

He has so many problems loaded on him....seems Jayne kept everything together.... and now there are rifts we did not expect!

loopylou Fri 19-Jun-15 19:17:07

Oh Alie, it's often the case and it blows things out of the water when that strength is no longer there.

How are you? I do hope there is someone keeping an eye on you x

AlieOxon Sat 20-Jun-15 13:50:20

New happening....
K has somehow managed to get in touch with my other daughter S, via her Facebook (which I don't do).
She had been out of touch since about 2007, and I don't know why.....and phoned me out of the blue this morning. We've agreed to meet next Sunday.... no idea how this will go.
A shock!

kittylester Sat 20-Jun-15 14:02:41

A shock indeed, Alie. Could be a really good thing as she chose to ring you. Crumbs! flowers

loopylou Sat 20-Jun-15 14:27:11

Crumbs indeed, I do hope that the meeting goes well ((hugs)) x