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wcc3.75 hb 11.43 plt 14

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This might be a bit garbled....Here goes.

Last thusday, I phoned Royal free, because of bruising, they wanted me to go straight away, to see them. I told them, I had a rheumatology appointment, the next day.

 

I saw the rheumatologist, what I thought was telangiectasia, all over. he didn`t seem concernered, just said the desease was progressing. Again, I pointed out, the Royal Free suggested a full blood count, reluctantly, he wrote out a blood form.

 

I was phoned at home, at 7.30pm, to go straight to A&E, my platelets were 12, average is 150!

 

Was hospitalised, and given platelets and sent home the next day, platelets 101 and told to have further test, on the Monday.

 

Phoned on the Wednesday, for the result...platelets down to 58, so that means they must be lower still. Off to A&E again, yes, down to 14, hospital has no platelets, will have to send out for them. Am told that as soon as platelets are depleted, I will start heamoraging from any, or all orafices.

 

It was my nose! luckily, the platelets arrived and as soon as it was completed, the nose bleed stopped.

 

This was yeserday. Sent home today, to attend the day unit, on Tuesday, unless I deteriorate! I will get more platelets then. I must not blow my nose, and take care I don`t harm myself. don`t know if I have written too much, feel free to cut anything out.

I have left a message on Specialised nurse phone, at Royal Free.

Diagnosis ? ITP ? MDS


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hello Lynne

 

It's so good to hear from you again but I am so sorry you have been and still are so unwell. Make sure you get straight down to A&E if you have any bleeding or you feel really poorly. When you go to the hospital for treatment tomorrow will they then set up a treatment plan to tackle the problem long term?

 

The specialist nurses at the Royal Free will ring you back and they can access your records there and also consult with one of the rheumatologists.

 

Please, please keep us informed of how things are going and take care. :flowers:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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Thanks Amanda.

 

Yes Royal Free nurse has phoned back, am to give the fax number for Prof Denton/Dr Ong.

 

Prednisolone might have kicked in, as petechiae and purpura are not as many :-) and I knocked myself and was able to stop bleeding. :jump-for-joy:

 

I will be giving the local Dermatologist a piece of my mind, if I had listened to him, I might not be here! BUT I AM :emoticons-yes:


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hello Lynne

 

By all means go back to the dermatologist and explain the error of their ways that next time they won't miss it!

 

Please let me know what Prof Denton/Dr Ong says and I'm glad you're feeling a bit better.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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What a scary experience. So glad you got treatment when you needed it. Keep us posted.

Sending you all good healing thoughts, Gale

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Thank you Gail, for your good wishes.

 

I was at the day hospital yesterday. The result of the bone marrow biopsy, will not be back, until next week.......The good news is, my platelets seem to be holdig they have only dropped by 2 to 54....normal is 150-300, the prednisolone is holding them. The 2 conditions they think it might be, are ITP (Idiopatic thrombocyytopenic purpura) or MDS (myelodysplastic syndrome). We are hoping it is ITP :-)

Lynne


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Back in hospital, with platelets down to 13 again, more transfusions 3. Was discharged on 27th, fortunately, the sister accompanied me to the taxi but I collapsed by the lift, she called for a wheelchair, saying how sorry she was but as I was discharged, there was nothing that could be done, so I got home and called an ambulance. When I was back at hospital, it was called a failed discharge, so was transferred back to the ward and could not be seen by A&E but had to wait for the night doctor, was seen at 2.30am, platelets down to 12.. Released today, with platelets at 39, so will be back in hospital, tomorrow, or Friday! They still have no idea what is causing it, I have asked them to test for Lupus, because that is a cause. Have spoken to the special nurse at Royal Free and an earlier appointment is being made.

 

Do you think Royal Free would send an ambulance for me, because I feel too fragile to go by public transport.

 

Lynne


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hello Lynne

 

I am so sorry! I cannot believe letting you go home to call an ambulance to take you back to hospital was the right procedure. When you feel able please speak to the Royal Free's patient and liason service (PALS) about how the situation should have been handled. Their details are on the Royal Free website www.royalfree.nhs.uk under patient and liason services.

 

From the Royal Free website is says about transport:

 

Hospital transport

Some people are entitled to hospital transport. If you need hospital transport on medical grounds this is usually organised by your general practitioner. You are collected up to two hours before your appointment time, so please be ready in plenty of time. When you arrive at your clinic, tell the receptionist that you came by hospital transport so that we can arrange your return and future journeys. If you have any problems, call the hospital's transport office on 020 7472 6572.

 

Have a look at the website under "getting here" for more information. You can also speak to PALS about the transport issue if you would like.

 

Please let me know how you get on and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lynne

 

It seems like you are really in the wars.

 

I hope you manage to get sorted out as soon as possible.

 

Best wishes

 

Vanessa

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Thank you all :-)

 

Looks like things are starting to happen. Had further 2 bags of platelets yesterday and another 2 ordered for Friday.

 

I am to see a professor in platelets at St George`s hospital, Tooing. It seems it could be autoimmune related!

 

Am to see Professor Denton, on 15th, an ambulance will take me.

 

I will keep you updated, as and when.

 

Lynne


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Dear heart, Lynne! I hope they get this sorted out soon, you certainly don't want to go on this way. I'm glad you can get hospital transport, I can't imagine dealing with public transport feeling as poorly as you must do. I'd missed your earlier posts and am sorry I didn't send you my very best wishes earlier. I'll keep you in my thoughts and watch out for updates.

 

Warm but very gentle hugs,


Jeannie McClelland

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Hello Lynne

 

I am so glad you're now getting somewhere! Absolutely right they should be sending an ambulance and you know you'll be seen by the best when you get to the Royal Free, I'm up there myself later this month.

 

Please keep us informed and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lynne

 

I am pleased to hear that things are starting to happen!

 

Good luck on the 15th.

 

Vanessa

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An update.

 

Have now developed a heart problem and have to take Glyceeryl trinate and undertake tests. To inject iodine, will be too invasive and could cause more bleeding, so have to be injected with something to make my heart work, as if I were on the treadmill, forgot to write down what the procedure is called :( Also have to undergo chest investigation. Fortunately Mr sclero has taken a back seat, apart from skin hardening, which makes finding soft skin, for the needle to go in, becomes increasingly difficult and soooo painful. Any ideas on making this more comfortable?

 

I still have not found out, what I should have done about the failed discharge, someone was to have called me back, when I feel stronger, I will go to PALS in person and get it sorted.

 

Will keep you updated, as and when.

 

Ispell not detected, can`t go to download page to install :excl: so hope spelling ok :unsure:

 

Lynne


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Hello Lynne

 

I am so glad that you are getting good care now but I am sorry you have new symptoms. Please do follow up with PALS (patient advice liason service) when you feel able because the way you were treated doesn't sound right to me, a non medical person.

 

Take care. :flowers:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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