Gransnet forums

Health

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.

Anya Tue 26-May-15 13:44:58

Alie have you heard of The Compassionate Friends ? They are a group of lovely people who are themselves bereaved parents and who offer support to other bereaved parents.

You might find them a valuable support group (((hugs)))

AlieOxon Tue 26-May-15 14:01:00

Yes I have heard of them.....will have a look.
Have to go out soon to see doctor - stress-related stuff. Back later.

AlieOxon Wed 27-May-15 09:27:19

After a painful exam the doctor says my bleeding is nothing serious.

Anya I will look at TCF but today I have to go to Oxford and there are some problems going on and I don't know what, yet!

Stansgran Wed 27-May-15 09:43:21

flowers for you

annodomini Wed 27-May-15 09:48:32

Alie, you don't need any more problems. I do hope these latest ones are easily solved.

harrigran Wed 27-May-15 14:28:40

Alie flowers

FarNorth Wed 27-May-15 18:38:05

So sorry to hear about all these things cropping up. You really don't need them. flowers

AlieOxon Tue 02-Jun-15 11:33:35

One problem now solved - I think - as my 14 year old grandson is in school today, after nearly a month.
Jayne's partner K and I have had difficulties as his older brother(s) told him he didn't have to go yet.......said 14 year old is very bright indeed and I hope this absolute tragedy will not stop him doing well next year.
I guess we will see how it goes.

I alternate between being mostly alone here, not good although my friend M is back, lives locally but is moving house!
- and going to Oxford which is a strain both physically and mentally as too many people and rifts within the family, apart from this school business.

I've lost the person on earth I was closest to.

loopylou Tue 02-Jun-15 11:36:55

Oh how I wish I could say something that would make a difference AllieO, I can only say that you are very much in my thoughts but that seems so inadequate x

AlieOxon Tue 02-Jun-15 11:42:54

Your fast response shows someone cares, thanks.

kittylester Tue 02-Jun-15 11:44:42

I've thought about you every day and hoped things were going well for you Alie. I hope things get easier. flowers

etheltbags1 Tue 02-Jun-15 11:51:52

Ali I have just read this thread for the first time, Iam so sorry for you.
this must be a terrible time for you, Hugs, xxxx flowers

janerowena Tue 02-Jun-15 12:31:33

Would you hate to move to Oxford for a bit, Alie? It's probably going to be a hard time for everyone, I think your GS will have allowances made for him as long as all of his teachers are informed. It might mean sending a letter directly to his year head though, even to individual teachers as sometimes I have heard that the year heads sometimes forget to pass on the message.

AlieOxon Tue 02-Jun-15 13:37:16

Yes I am afraid I would hate it....
.....Jayne's partner K offered for me to stay but it is a two bed-roomed house and cramped too.....I left Oxford to get some peace and do not want to be in the middle of family rifts either. Even if it was financially possible, sorry.....

School has actually not got back to me as I asked this morning when checking he was there!

AlieOxon Tue 02-Jun-15 15:12:57

Have managed to make contact with K and school and one of Jayne's sons... at last. I have been feeling I am being left out of the loop!
Going to Oxford tomorrow.

rosesarered Tue 02-Jun-15 15:33:18

Not being there on the spot as it were, makes it all more difficult, and places in Oxford ( apart from the city centre) are not easy if you haven't got a car( I don't think you drive Alie?)It's good that your grandson is back at school now though as life must start to go on for him and he would be missing his friends, nothing helps like some normality for children.hope that you manage to sing and do a reading at the funeral, your daughter would be proud of you.xx

Anya Tue 02-Jun-15 16:15:46

Many of us here on GN have been thinking of you Alie. You say you've lost the person you were closest to in this earth. That is heartbreaking.

moomin Tue 02-Jun-15 16:59:51

Oh Alie what a dreadfully hard time for you. You have been in my thoughts also

AlieOxon Tue 02-Jun-15 17:17:25

Thank you for your thoughts folks.
Yes I do drive, but Jayne's partner doesn't yet...they were both learning.
What I dread is the parking there in Jericho. I have to park near as I can't walk very far these days, and it always gives me a lot of tension when I get near!
He wants to put some things in the coffin tomorrow. I gave him a little box her sister made, with things from us.
I have seen her and don't want to again. She was so recognisable and yet not there.

Mishap Tue 02-Jun-15 17:21:41

What a dreadful time for you Alie and I am sorry you have lost someone who was so close to you. I am holding you in my thoughts and in my heart.

thatbags Tue 02-Jun-15 17:25:30

Thinking of you, alie. How hard it must be flowers

Marmight Tue 02-Jun-15 17:46:29

Alie - I can say no more than has already been said. My heart breaks for you. flowers

Marelli Tue 02-Jun-15 18:14:45

Alie, you're having to deal with so much. I've been following your thread, and have seen how you've had to almost lay aside your own grief while you're attending to all the things that have to be done for the others who need your help just now. I can also imagine you worrying about how you're going to be able to park closely enough in Jericho....
When we lose our child, it takes a bit of us that nothing, absolutely nothing, can ever fill. flowers x

rubysong Tue 02-Jun-15 18:59:44

What a shame you are having to worry about parking in Oxford, Alie. Could you park on the outskirts and get a taxi to where you need to be? They would drop you right at the door. flowers

Crafting Tue 02-Jun-15 19:35:12

AlieO so sorry things are so hard for you. Hope your DGS is coping ok at school. ((Huggs))