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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.

Bellanonna Mon 06-Jul-15 19:31:53

ALie my thoughts are always with you although I don't often come on here. You have such a lot to contend with. Your immune system is probably compromised by all the stress you have been under. Hopefully you will feel physically better soon. As others have said, do try and rest especially now that you probably have a bug. Can you sit in the garden with a book and just relax, even for a short while? Take care xx

Alea Mon 06-Jul-15 18:47:42

alie you are going through so much it is hardly surprising your physical resistance is low. I hope the steroids do their stuff and that the paracetamol brings your temperature down - don't try to do too much until you are a bit better.

rosesarered Mon 06-Jul-15 16:42:58

Get well soon Alie.There are some nasty virus things going around.flowers

POGS Mon 06-Jul-15 15:53:33

Resting up sounds such a good idea Alie.

flowers

AlieOxon Mon 06-Jul-15 15:29:18

Resting up today. Started on steroid pills for the flareup of colitis.
At the moment feeling shivery and sweaty at the same time.
(Paracetamol is us!)

However the garage just rang and the car is MOT'd, so if I can get to the bank in the morning (crossed fingers) and sort the insurance, I can get it. Then I can get to Oxford - WHEN I reckon I am not infectious.....

harrigran Mon 06-Jul-15 11:24:51

Alie flowers Hope you feel better soon.

Luckygirl Mon 06-Jul-15 09:29:11

Please let us know how it goes with the doctor. I hope there will be some help there.

AlieOxon Mon 06-Jul-15 08:34:40

Doctor this morning, then a visitor - and I have developed a sore throat overnight and feel dreadful!

Anya Sun 05-Jul-15 22:51:24

Life is fragile and bad things do happen to good people sad

AlieOxon Sun 05-Jul-15 20:22:04

There was one here when I came - and we couldn't get into it! I don't think it would solve the problem as I would still have to have the other key to get in......but thanks for the thought.

I've had a long phone chat which helped.

Charleygirl Sun 05-Jul-15 17:09:51

Alie may I suggest that you have a keysafe fitted outside? Admittedly this will only house a yale key but it may be a start. It is a tiny black box fitted discreetly outside your house. When opened you apply a 4 number code which opens it and reveals your key. It was fitted for me free of charge in 2009 after I had my ankle pinned and plated. If you google keysafe you may get an idea of prices but it should not cost too much.

AlieOxon Sun 05-Jul-15 16:21:20

Life is so fragile....and we don't realise that until it happens..

Anne58 Sun 05-Jul-15 16:14:12

Alie my dear,my DS2's death should/need not have happened, but the awful truth is that it has, and we have no choice but to plough on. It is so very hard, but we have to carry on. There is nothing wrong in having times where you want to weep and wail, shout at the moon or curse every person on the planet (including yourself) for not being able to change things, but ultimately you have to accept things as they are. It's not easy, especially in the early stage, so weep and wail, shout at the moon, curse, then take a deep breath and do what you can.

Much love (and some understanding) to you. xx

AlieOxon Sun 05-Jul-15 15:51:41

I will try.

The worst thing is that this need not have happened....

Luckygirl Sun 05-Jul-15 15:48:01

You are right Alie that this will go on for a while. Your pain does not go away, but it really will change in its nature as time goes by and you will be able to remember the good things. I know that that seems impossible now, and for the time being it is, but you are doing so well.

You would not be human if you did not go over and over what has happened. You might feel it helpful to have a plan of action for dealing with this - to let your mind dwell on it all for a certain length of time, and then consciously say - OK time's up, I will concentrate on something else for a while. Going over things is a way of processing what has happened and not a sign of weakness - it is a useful part of the grieving process and not to be shunned. But giving it a time limit sometimes helps to put you more in control. The thoughts will all come back of course, which is as you would expect, and then you can just let them be for a while then concentrate on something else again. I have known people who have found this useful - it may not be for you, but worth a try.

No-one can take away your pain but we can all walk beside you,.

AlieOxon Sun 05-Jul-15 15:21:51

I have just rested for an hour with book and music - got fed up with the book. Maybe some different music, later.

What I have done is take all the old rubbish out of the old car, bring it in to sort out and keep stuff I want in the new car....since the old one is going in P/E anyway I have to do this. Got tired though.
I sound awful restless, and I am.

This crisis will run and run. Doesn't go away.
I go over and over what happened and it's always the same.......

Alea Sun 05-Jul-15 15:00:41

If you know you can't advance things today because it is Sunday, would it be impertinent of me to suggest you try (?) to just relax, have a break from worrying, sit in the garden with a lightweight book, listen to some nice music or watch some rubbish on TV and get some rest? I know keeping busy is meant to be therapeutic at times of crisis, but there is only so much a body can take.

Luckygirl Sun 05-Jul-15 14:43:21

I hope you will b able to get some relaxation time today Allie - if you are tired, please just rest. You probably need it.

AlieOxon Sun 05-Jul-15 13:13:36

Frustrated and tired.
It would be Sunday, can't do anything to get any further!

AlieOxon Sat 04-Jul-15 20:52:44

Changed my trousers = and forgot to change the key over.
Yes, some of the time I am not functioning very well.

Trouble is now, the man got in so easily past the Yale that I realise I will have to find and USE the key for the big lock!!!!
And get another to give someone else too..............

Luckygirl Sat 04-Jul-15 19:46:23

Sorry - I meant cars of course.

Luckygirl Sat 04-Jul-15 19:46:09

I am sure that you are right petallus - so much of one's mind taken up with other thoughts than the day-to-day.

I hope that cards and keys get sorted Allie.

petallus Sat 04-Jul-15 19:39:44

I think grief can have an incapacitating effect making it hard to think straight.

petallus Sat 04-Jul-15 19:37:32

That's all you needed right now. Glad you got it sorted even if it did cost you!

AlieOxon Sat 04-Jul-15 19:25:03

Had to pay a man to get in as well.