Message Boards for the CF Trust

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trollydolly

Posts: 38
From: west sussex
Registered: 26-Nov-2006

Pulmonary Embolism
Posted: 04-Dec-2006 23:54

Reply

Hi folks,

You may remember me posting last week about my daughters 2 eventful weeks. The thread was CF and gallstones.Its a long story, but she went into septic shock.

Well shes now been taken into hospital again, this time with a Pulmonary Embolism.

Apparently this can happen after surgery when the patient has been immobilised for a while.

I just wondered if anyone else has had this. Im so worried. She cant even do her physio as it hurts too much, so Im worried about her getting an infection on top of all this.

She is in our local hospital which Im not happy about, spoke to the Brompton, but there are no beds there, so she has to stay put.

Love,
Trollydolly
xxxx

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Pulmonary Embolism
Posted: 05-Dec-2006 00:16

Reply

Oh no, not more! I'm really sorry to hear this, no wonder you are worried!

I've never heard of anybody wcf having an emolism, but they are all too common following surgery and/or prolongued immobilisation.

So long as the local docs are in regular touch with Brompton then your daughter will be getting a good standard of care, and may be better off not being moved - and may miss catching an extra CF-related bug!

If, however, once the embolism has been resolved she has ended up with an infection then you need to chase the Brompton, and this time be sure to talk to one of the consultants. I am always uncertain that duty doctors are doing all they might be able to if they flexed their muscles a bit more.

All the very best, and sending you all my good wishes for your daughter's speedy recovery.

Richard.

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 00:23

Reply

Hi I had a pulminory embolism - not very nice! Don't know what hossie she is in but Worthing looked after me. I don't have Cf though and I was pregnant, so I was on the nice maternity ward. Are they giving her fragmin injections? This will thin the blood. She will probably need to take them for a while after she is better.
I am guessing they think it is an emoblolism because they can not see anything on the xray?That is what I was told anyway - you cant see them, so they go on symptoms and bloods. If she is in Worthing I would recommend she watches the nurses carefully. I was in there with a friend who was being treated the other week and their canula care was awful. Get her to make sure they are doing it in a sterile manner and have washed their hands. Does not matter if she offends anyone.

I have not had any problems since I had the embolism. I hope she is feeling better soon.
Tamariki

trollydolly

Posts: 38
From: west sussex
Registered: 26-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 00:26

Reply

Hi Richard,

Thanks for your reply.

The doctors havent even communicated with the Brompton, thats why Im so angry. I rang them tonight myself.

When she was in ICU a couple of weeks ago, the doctors kept in touch with the Brompton daily, but this lot cant even find her notes.

We have waited since Thursday for a scan, and when we got back to the ward after the scan, we were told the doctors had gone home and there was no-one there to discuss the results with us, til tomorrow.

They are giving her Warfarin(which shes on anyway for the DCM) and Heparin, but tonight she had a nosebleed, so Im wondering if they have thinned her blood too much.

There really is a terrible lack of communication and its really getting to me now.

If they tell us tomorrow she needs to stay there and there are no beds at the Brompton, I am getting her referred to a Private Hospital nearby as she has PPP with work, and although this isnt really related to her CF, Ive just found out that it does actually cover pre-existing conditions.

Im just so worried she will get something else in there, as theyre all coughing and spluttering all around her.

Will keep you posted,

Hope you are well,

Love,
Trollydolly
xxxx

trollydolly

Posts: 38
From: west sussex
Registered: 26-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 00:29

Reply

Hi Tamariki,

She is in East Surrey. Not good.

She had a scan today and they injected dye into her, as like you they did an xray and saw nothing. The results show PE.

Trollydolly
xxxx

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 00:30

Reply

as far as I remember they were always doing blood tests to check levels. My arm was like a pin cushion. Soon got me over my fear of canulars though.
T.

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Pulmonary Embolism
Posted: 05-Dec-2006 01:55

Reply

The Brompton has private rooms on Foulis, maybe that could be arranged? (Assuming they haven't already shoe-horned CF patients in there.)

Richard.

trollydolly

Posts: 38
From: west sussex
Registered: 26-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 11:38

Reply

Hi Richard,

I have spoken to the Brompton this morning, and so have the drs at East Surrey.

He said she cant be moved at the moment as its too dangerous, but they are moving her to a private side room with her own bathroom, which is better.

They said her Wafarin levels need to be between 3 and 4 so they just have to keep doing bloods til they get it right. Which means more needles!

Trollydolly x

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: Pulmonary Embolism
Posted: 05-Dec-2006 17:14

Reply

At least the docs are talking now, that's the main thing! Good to hear she's been moved, that willmake life more bearable. I can cope with other pwcf in the same room but I do very much prefer to keep away from pwocf.

Keepiung fingers crossed for her. Take care, stay strong!

Richard.

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: Pulmonary Embolism
Posted: 05-Dec-2006 17:38

Reply

Hi Trollydolly, just to say I really hope your daughter gets well soon and everything is sorted out. I know how worrying it can be, but keep strong. Sending my love to your daughter. from sunseasand.

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: Pulmonary Embolism
Posted: 06-Dec-2006 12:02

Reply

sending you all our love and best wishes for quick recovery

sal