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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.

Luckygirl Sun 02-Aug-15 20:36:37

It is good that he has people around him; but a shame that your plans did not work out. Can the meat go in the freezer and make your planned meal another day?

Sorry about the colitis - it is so painful and a bit of a social problem - I know, having had IBS for decades - it goes cramp your style a bit.

Take care. x

annsixty Sun 02-Aug-15 20:17:22

Oh what a disappointment Alie we start out with good intentions!! Perhaps you can take comfort that so many people have his interests at heart.

AlieOxon Sun 02-Aug-15 20:08:36

Yes, well, it didn't work out well. I went with good intentions, to make K and the kids a good meal and see and talk with him....and so many other people turned up that it wasn't possible, and we ended up at a pub for food, where he got really depressed because he had last been there with Jayne.....altogether not a good day!!!!

I am tired and upset, and my colitis is immediately acting up again.

AlieOxon Sun 02-Aug-15 08:24:26

Yesterday was a REST day, as I slept very little the night before. Boring though. Last night was better and I am heading for Oxford again...maybe Sunday would be the best day to go. The parking is easier too!

Yes lucky I have my downtimes, and did yesterday evening....but sleep heals.

Must pick mint to go with the lamb I am taking.

baubles Fri 31-Jul-15 19:59:34

It's hardly any wonder you're tired Alie, you must be so weary. You're often in my thoughts.

AlieOxon Fri 31-Jul-15 19:49:51

'...it's the last thing you want just now!' - so I have told the doctor at the JR today. I said, NO. But even doing that is stressful!

Yes I have seen K and the two boys and had a meal, and going back Sunday. It is easier with the new car. But I am tired.

Luckygirl Fri 31-Jul-15 11:25:44

I do think that those of you who have lost children are brave in the sense that Nfk describes. But I am sure that now and again that is not possible and it is fine to let go, before re-charging your batteries and facing the world again. I have you in my thoughts. flowers

dustyangel Fri 31-Jul-15 11:19:28

Nfk your post 8:15:16 Well said flowers

NfkDumpling Fri 31-Jul-15 08:17:12

(I had an endoscopy last week Allie. Definitely agree - it's the last thing you want just now!)

Hope you manage to see K.

NfkDumpling Fri 31-Jul-15 08:15:16

Brave I suppose as in not turning into a heap of self pitying, blubbering jelly, curling up in a corner hiding in a darkened room - as I fear I would. But instead getting out there, helping others, keeping life going, seeing the beauty not just the pain..... Ready to face and endure? Yes! You're all brave!

absent Fri 31-Jul-15 08:07:49

Just thinking of you many times during each day.

AlieOxon Fri 31-Jul-15 07:56:23

Going for an appt at the JR in Oxford today re my colitis, which is just about under control. Hoping they won't want an endoscopy!
Trying also to arrange to see K, so will text him when I get out and hope it is ok.....

AlieOxon Thu 30-Jul-15 13:27:11

From definition........ 'ready to face and endure'

yes phoenix there is no option.....

Luckygirl Thu 30-Jul-15 09:40:23

You are right phoenix and as I posted it, I wondered if it was the wrong word. Sometimes it is hard to find the right words - but the motive is to express some fellow-feeling, so I hope it is read in that spirit. x

Anne58 Thu 30-Jul-15 09:31:52

It's not brave, Luckygirl there is no option.

Luckygirl Thu 30-Jul-15 09:29:34

flowers - you are all so brave; and in my thoughts.

Anne58 Thu 30-Jul-15 09:23:08

Alie I understand about the street thing. It was the "never" that hurt, at times it was (and still is) an actual, physical feeling.

The fact that I would never see him running across the square towards me, with that grin. I would never answer my phone to find it was him on the other end. I would never open the door to find him standing on the step.

baubles Thu 30-Jul-15 09:06:49

Allie flowers

annsixty Thu 30-Jul-15 08:00:36

That is lovely Anya I could do with a drawer full of those cards. I seem to know so many people going through a bad time.

Anya Thu 30-Jul-15 07:10:39

X

loopylou Wed 29-Jul-15 19:26:51

((Hugs)) Alie
You're in my thoughts so often, and to me words are woefully inadequate. Like annsixty I guess the only option is a day at a time and keep trying to cope sad x

annsixty Wed 29-Jul-15 10:00:10

Most of us, sadly there are a few, will never be able to imagine the pain you are going through. I suppose the only thing is to live each day as well as you can because there is no other way to get through it.flowers

AlieOxon Wed 29-Jul-15 09:35:35

Isn't supposed to be this way round, is it?

And...'lost' is somehow the right word - she's in the next room, just out of reach, still there somewhere...
I have started to see her in the street, only it never is her

I touch her picture and say Goodbye

Love to you too - Alie

Marseea Tue 28-Jul-15 23:05:15

Alie....I also have lost an adult daughter....All anyone can say is "Hang in There" because that's all you CAN do. Sending love over the air .....Marseea

NfkDumpling Tue 28-Jul-15 21:23:46

flowers