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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.

AshTree Fri 10-Jul-15 11:50:46

Alie I haven't posted on this thread for a while but it's not because I've forgotten you. Every time I open the 'active' link I see this and think of you - every day. I have been reading the posts on here regularly and feel so impotent. I felt so sad to read how your daughter would have been loving this weather. She should be sitting out in the sun, with her baby. Life is so unfair. (((((hugs))))) for you, and wishes that at least all the practical issues can be resolved as soon as possible. flowers

annodomini Fri 10-Jul-15 10:55:21

Alie, you need to enjoy the sun for her. I hope you have got over your cold and that you have at last got your new wheels.

posie Fri 10-Jul-15 10:53:12

I'm not good with words but I'm also thinking of you Alie flowers

Alea Fri 10-Jul-15 10:40:56

Every day you are going to be feeling your daughter should be here, enjoying life. That is the heartbreak.
However, you must go on, there are grandchildren who need you,, and also your daughter's partner and you can support each other as only you have the memories of happier times with her. flowers

Luckygirl Fri 10-Jul-15 10:26:41

She ought Alie - you are right. You are bound to feel that. How sad for you all. Stay strong. Thinking of you. flowers

POGS Fri 10-Jul-15 10:18:11

[I understand emoticon]. X

AlieOxon Fri 10-Jul-15 10:06:27

She ought to be here enjoying the sun

NfkDumpling Thu 09-Jul-15 20:10:24

(((Hugs)))

AlieOxon Thu 09-Jul-15 19:54:54

Yes weather is great but a bit hot for me to be out.

I am feeling so sorry that my daughter - who loved the heat and couldn't sit out last year because she was pregnant - is missing this weather, she was looking forward to summer..........

Luckygirl Thu 09-Jul-15 11:56:31

Can you sit and rest in the garden today Alie? - that is if you have the lovely weather we have here.

One day at a time. flowers

petallus Thu 09-Jul-15 08:10:14

I hope you have a reasonable day Allieoxon

NfkDumpling Thu 09-Jul-15 07:43:24

I think your body may be telling you you need to rest up Alie - perhaps the lack of car isn't altogether a bad thing although understandably frustrating. Don't start rushing around again too soon.
Take care. xx

Luckygirl Wed 08-Jul-15 22:11:21

NFK and kitty are right - so many people are thinking of you.

Bellanonna Wed 08-Jul-15 20:30:37

Me too x

loopylou Wed 08-Jul-15 20:21:30

Definitely so kittylester
You're uppermost in my thoughts Alie, just wish I could be of practical help too x

kittylester Wed 08-Jul-15 10:20:11

As NFK says, I'm sure there are lots of us thinking about you but don't know what to say. And, as marelli says, I look for new posts but don't always post as I can't imagine what you are going through and what to say to help things. But please take it as read that lots of us think about you and are sending you healing and strengthening thoughts! (((hugs)))

AlieOxon Wed 08-Jul-15 09:40:24

I was contacted by an IBD nurse Alea, yes.

I sometimes have successful days Nfk....not this one I think, as I still have the sore throat and temp. Not getting up at the moment. A sticky night.

Thinking about family. There are too many rifts here, but not putting that in public. Things were together for the funeral, but not now.
I need to get to see K, but don't see me getting the car today.

Marelli Wed 08-Jul-15 08:02:58

I read your thread whenever there's a new post on it, to see how you're doing, Alie. How is your DD's family coping at the moment? Are you able to have much contact? xx

NfkDumpling Wed 08-Jul-15 07:51:25

In the mornings when I post on Mick's Good Morning thread I used to wish everyone a happy day, but now I think of you and everyone else going through bad times and instead wish a successful day. A day achieved.

I know there are many of us who think of you regularly and try to send strengthening vibes - but don't post either because our feelings have already been said or inability to put things into words. But we are here. flowers

petallus Tue 07-Jul-15 12:30:31

All I can say is keep on posting. I read this thread regularly to see how you are getting on.

Alea Tue 07-Jul-15 12:00:16

My DH rings the IBD nurse at the department who deal with his UC. do you have one of those?

AlieOxon Tue 07-Jul-15 10:33:26

It's a bit more than an ordinary advice line, works with docs and GPs on specialist bowel treatment.

Not having it. But rather hoping I won't be recommended any new meds!

Alea Tue 07-Jul-15 10:20:20

Oh dear, Alie you don't need this right now. I find it hard to believe an advice line could do more than give generalised advice, but give the steroids a day or 2 to work on your UC and I am sure things will improve. However, as stress can be a major factor in flare-ups, you are in a difficult situation.

AlieOxon Tue 07-Jul-15 09:36:05

A fright yesterday shot my stress level skyhigh - I phoned the colitis advice line and wished I hadn't when they left one saying they wanted me to have another sigmoidoscopy!
I left a message saying NO! and Have just received a phone call reassuring me that I don't have to....whew. Simmer down, here.

Very bad previous experience...

kittylester Mon 06-Jul-15 20:25:03

Take care A lie (((hugs))) flowers