Neglected? Then Licearine. Warfarin. Riveroxaban 20mg daily. Apixaban 2.5mg twice daily

[inHospitalnowScared]

Only 20 years of age.

Each new medication separately following on from each other.

20th birthday in hospital semi conscious with the nurses remarking how much he sleeps.

Me telling them that is not natural or normal them saying but he told us he sleeps a lot.

Not a happy mum here.

Will try to be as short as possible.

Son said leg was sore.

He went to GP on Friday (July 2014) GP said come back monday if not better.

We thought he was ok as GP saw nothing wrong.

We left him home alone went on a 100 mile trip overnight.

Son phoned, said Ambulance on way to him as he had passed out.

Ambulance took forever to arrive - nothing urgent about a male teenager, no hurry.

Admitted to local country hospital.

Kept in General medical observation ward with suspected clot in leg.

Admitted 5th July discharged to other hospital 13th July

We could see he was in trouble but staff insisted he was sleeping (sort of lazy teenager - so lazy he got a clot from lack of movement - yes, this was suggested)

Leg scanned but no one in any hurry to do anything.

I think he had injections of warfarin into the stomach at this point.

Eventually told he needed urgently moved to bigger hospital that performs Liceraine.

Not moved due to not enough staff in next hospital as it was Bank holidays 2 days in a row.

Got moved to have treatment 2 days later.

Staff tried to make me feel I should be grovelling as the anaesthetist had to come in on a Bank Holiday.

Everyone ready to go do their bit but doctor comes over after a few hours and apologises.

No one had booked the one to one nurse he needed so everyone going home treatment next day (July 2014)

Liceraine treatment begins, son in agony. No one would talk to me.

Any time I asked questions I was told to ask my son as he had everything explained to him.

Scared 20 year old in agony and on morphine was making no sense about anything.

I told staff that they said he was a very intelligent person.

** After a few days son can no longer take the pain and tells me what he said the doctors had told him.

He tells me he had the treatment stopped for a few hours and would restart it when he was feeling better, he just wanted a break from the pain.

A few hours later we ask to speak to the doctor.

Son says he will restart the treatment.

doctor says that is not possible as once the treatment stops thats it not started again.

Son very confused, I tell the doctor what son had told me, doctor says thats all wrong where did he get those ideas.

I reminded him son was on morphine and in agony and scared and asked why no one would listen to me.

Licerarine stopped son very upset.

Sent home a few days later and onto meds as in title.

Specialist after discharge said clot can only be broken up within 14 days - I am wondering that I confuse that information.

Discharged from all hospitals etc now.

Going to see GP soon as we are completely in the dark, no one checking anything seems wrong.

Last saw specialist in Jan 2015 no other medical people seen.

I dont know anything is this good, fantastic or poor treatment

How would you feel on these meds are they good?

will the clot break up more.

It was from mid thigh to waist.

Genetic tests were done but nothing found.

Recently his 30 year old female cousin has had a clot so genetic testing being asked for her.

** This and the delay in moving hospitals and one more day delay in starting treatment then it ending due to a misunderstanding really annoys me, would the clot be much reduced, any way to tell had licerine started sooner and kept going.

Thank you, sorry I did try to make it short.

[miclyn2014]

Take your story to The Patients Association. They can help you articualte your concerns to the right people. Helpline No 0845 6084455. This oranisation represents patients to governmnet and is making a difference, so by saring your experience with them you are helping everyone. If you wish to wrtie to them it is PO Box 935 Harrow: Middlesex HA1 3YJ. You have reason to be concerned!

[inHospitalnowScared in reply to miclyn2014]

Thank you I will contact them.

[maejane]

I am so sorry for the way your son has been treated, it looks like things just haven't moved on, I was 24 when I had my first clot it began in my leg when I was pregnant no one listened to me either and 7 weeks after his birth I was rushed in with a massive pe in my lung with only hours left to live apparently I was told I should have been taken in a coffin! And that I was obese! But the 2nd pe was just as bad! I was 36 and the ambulance took ages I was in at 4am and wasn't given treatment till 8pm and they were told it could be a potential clot, the nurses where a nightmare they woke you every morning with "we're up so your up, shower then doctors rounds" they were working most of us were really ill and all you want to do is sleep! When you leave hospital all you get is your meds and to go and see your gp, I was on it for 6months the first time and then after my mum had a blood clot and looked at the family history we got genetic testing that came positive for at 3, only now that I am on blood thinners forever I am checked every 6 months.

I can understand where your son is coming from the pain is bad no one understands unless they have been there, some medical staff have no idea.

But I would push to see a consultant for genetic testing, how long is he on the medication for? And if his treatment was so bad complain! Not enough of us do it and that's why things haven't moved on we must highlight the importance of blood clot awareness and there dangers wishing your son a speedy recovery (he's young and although it takes time he will and he might have problems) and all the best to you his family this is an ideal site for help and support

[inHospitalnowScared in reply to maejane]

I have been in hospital several times and mistreated severely. I have also seen relatives mistreated. None clot related.

When my son was in I was extremely polite and extremely insistent but still was not heard. I do think he would not have been moved except I spammed facebook pages of all the local hospitals asking for a bed.

I am not sure how long he is to take the medication, I do think for life which seems silly as medicine moves on and new things come along.

We know too little but he has been signed off the specialist list. The specialist in the third hospital which son was not a patient in other then for follow up was extremely helpful and explained very well but too much information too late then signed off. We will be asking questions - or son will he is not pushy enough so hopefully he will be more persistent. Thank you both for replying.

We do not know what size the clot is now or how much it will dissolve in the future.

[maejane in reply to inHospitalnowScared]

Get your son to the gp and ask to be referred to a consultant haematologist at the hospital and take a list of questions with you, it is your right to know and be explained the facts of his episode and what it entails in the future as he is only 20, good luck