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#1 mdduk27

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Posted 09 February 2014 - 01:38 AM

Hi

 

My wife suffers from Scleroderma, Raynaud's and Polymyositis.

 

She is 24 and was diagnosed 7 years ago, since then we have gone on to have two children now aged 5 and 22 months.  Her symptoms were under control and she only needed to see her Rheumatologist every 6 months but after the birth of our 2nd child things have spiraled out of control.  She now needs a wheel chair because she gets breathless after walking a short distance, her Raynaud's has got much worse to the point that she has constantly blue feet and hands.  She also has suspected heart involvement, she is now having to take Ivabrandine and asprin daily to slow her heart rate down.  So far all her heart tests have come back normal, she has had ECG, Heart echo scan and a MRI of the heart itself, she now has an appointment for a heart stress test in March. 

 

So this brings me to where we are now, on Monday she started having severe sickness, it started suddenly and was accompanied by dizziness and extreme fatigue/tiredness.   We thought it was a bug so I treated her at home, but she got worse to the point where she was having difficulty staying conscious or even keep fluids down.  I phoned an ambulance on Wednesday and she was taken to our local A & E department, now if any of you have ever been to an A & E dept suffering with these illnesses you will know the Dr's don't know much about it and she was left in a side room and put on a drip to re hydrate her then sent home.  The care was poor at best, she returned home but deteriorated further, so yesterday I took matters into my own hands as she was barely conscious, I rushed her by car to the A & E at the hospital where she receives all of her treatment (Salford Royal).

 

She was put on oxygen and as they had all her records her treatment was much better and she was admitted straight away.  My concerns are now that she as been put under the care of the gastro department and as far as I am aware her usual consultant is not even aware that she as been admitted because she is not on her usual ward.  

 

Her sickness continues even though she is now on anti sickness drugs and she has now not eaten or taken on much fluid for 6 days.  She is sleeping for pretty much 23 out of 24 hours and I don't know what to do, should I demand that she gets to see her usual prof in charge of her case?  Should I insist that she is moved to a different ward?

 

I'm worried sick at this point so anyone who has any idea about or had these symptoms would be very helpful?  I am also concerned that she has now been on a ward for over a day and has still not been seen by the ward doctor.

 

Her current treatments are:

 

Asprin, Ivabrandine, Prednisolone and she finished a 6 months intro course of Cyclophosphamide 5 weeks ago.

 

Thanks for any advice you have.

 



#2 Joelf

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Posted 09 February 2014 - 10:28 AM

Hi Mdduk27,

 

Welcome to these forums!

 

I'm sorry to hear that your wife has been so poorly; it must be a tremendous worry for you, especially with a young family to look after.

 

As she was admitted with gastrointestinal problems, I can understand why she would be put on a gastro ward. The recent bout of sickness she's experiencing may not be related to Scleroderma; however, as you rightly surmise, they may not be aware of the full picture and so I would be inclined to suggest that she be dealt with by her Scleroderma specialist (I'm assuming that she is under the care of a Scleroderma expert, under normal circumstances.) I'm afraid that apart from a now out of date first aid certificate (useful should I come across someone with a broken leg etc., but not an awful lot of help otherwise! ;) ) I don't have any actual medical training, so can't really advise you on the treatment she should be receiving, but in view of the fact that she doesn't appear to be improving despite being on anti sickness drugs, I would suggest that you ask to speak to the person in charge of the ward and insist that she be seen by a ward doctor, at the very least.

 

We do have information on Gastrointestinal Involvement on our medical pages, which I hope will give you some more information and I do hope that your wife will receive the treatment that she needs.

 

Please do post again and let us know how your wife is faring.

 

Kind regards,


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#3 judyt

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Posted 09 February 2014 - 01:46 PM

Hi,

 

Personally, having been in that sort of situation a few times I would suggest you seek out her usual Gastro at this hospital and make sure he/she knows the current state of affairs.  You might be right and he doesn't know, or he could be on leave, any one of a million things.  I presume they have her on a drip for hydration and that will keep her going for a few days.   I have been nil by mouth more than once for 5 days or maybe even more.   Yes I came home looking like death warmed up and have trouble remembering everything that went on around me but here I am back to 'normal' and getting on with things again.

 

Hospital is the best place to be and I am fairly confident that something definite will happen eventually but being her advocate is the best thing you can do.   Maybe you will feel that you shouldn't interfere, but in fact you should be kept up with everything that is being considered.   You have a right to know and you must make sure that you do.

 

I am sending you my best wishes,please keep your head and be pro-active on her behalf.

Judyt



#4 mdduk27

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Posted 09 February 2014 - 03:04 PM

Hi,

This is just a very quick update,  I'll give you details at a later time when things have settled.

 

 My wife lost consciousness and was found to be suffering from liver failure.  I'll update at a later point, she has been transferred to a specialist liver unit and is so far responding well.

 

Thanks for your replies.



#5 judyt

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Posted 09 February 2014 - 04:53 PM

Hello mdduk27,

 

A relief to know what is going on I am sure, our thoughts are with you both and trust that her treatment will progress well.

 

I, amongst others, have liver disease along with Scleroderma and there are others of us here who have suffered sudden organ failure and are doing well after treatment.

 

Look after yourself and the children, this is a very trying time for all of you as we well know.

 

Judyt



#6 Joelf

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Posted 09 February 2014 - 10:20 PM

Hi Mdduk27,

 

Thanks for posting your update and I'm very sorry that your wife is now suffering with liver failure.

 

At least it does now sound as if she is getting the treatment she needs and I do hope that she'll soon improve.

 

Kind regards,


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#7 mdduk27

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Posted 13 February 2014 - 12:22 AM

Hi

My wife now has a definitive diagnosis of pulmonary hypertension, the enlargement of her heart caused her liver to fail. The treatment so far has got her liver making a recovery and she is on drugs to decrease the pressure in her lungs.

She is in a specialist liver unit and today she is being transferred to one of the 3 specialist heart units in the UK, the Dr's there have very specialised skills and know a lot about treating scleroderma patients.

Obviously when my wife was first diagnosed we read a lot about the illness and this was the one complication we hoped would never happen. We always thought that she had Systemic rather than Diffuse (I think that's the right way round) but we must have been wrong on that score.

Anyone here suffer from or know of people who suffered these complications?



#8 Dee L

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Posted 13 February 2014 - 11:52 PM

Hi Mdduk27

 

I can't help you by saying I suffered the same complications as your wife but I can relate to her in that my heart and lungs went into failure in 2011 leaving me very poorly.  I was sent to a 'Scleroderma' specialist hospital for my treatment and future referrals and they knew exactly how to deal with my problems.  I am now happy to say I am very much improved and still receive regular and ongoing treatment and check ups with the London hospital.  I am back to work and leading a happy 'Scleroderma' life :)

 

You and your family are not alone, sometimes it is harder for the relatives than it is for the patient but consider this forum your friends, it has helped me immensely.

 

Best wishes to you and your wife - it must be really tough with such a young family.  My thoughts are with you.

 

Dee



#9 Joelf

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Posted 14 February 2014 - 02:10 AM

Hi Mdduk27,

 

I'm very sorry to hear that your wife has developed Pulmonary Hypertension; unfortunately sometimes this can be a complication of liver and lung problems. Just to clarify for you: Systemic Scleroderma can be Limited or Diffuse. Limited tends to be slower in onset and progression, with less skin involvement and although it can also affect internal organs, the outlook in general is very good. Diffuse causes variety of complications that can affect the skin, mouth, eyes and internal organs such as the lungs, heart, kidneys, and the entire gastrointestinal tract and tends to progress more quickly with more skin involvement. Sine Scleroderma is Diffuse Scleroderma without skin involvement.

 

The good thing is that your wife is now receiving the appropriate treatment by an experienced Scleroderma team and I do hope that she will improve very soon.

 

Kind regards,


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#10 Amanda Thorpe

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Posted 14 February 2014 - 09:12 AM

Hello Mdduk

 

Sorry this has happened, maybe sometime address with A&E how they appear to have missed liver failure and PH!

 

PH is common in scleroderma but liver failure is not, now you know what's wrong your wife can receive the appropriate treatment.

 

Please let us know how things are going and I hope your wife is soon home with you and your children.

 

Take care.


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#11 mdduk27

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Posted 23 February 2014 - 02:13 PM

Hi

 Just another quick update.  My wife is responding very well to the treatment she is on intravenous iloprost, when discharged from hospital she will need to have this infused 24/7 by means of a small pump that will be permanently connected to a hick line.

 

She has right heart failure caused by the PAH and is very lucky to be alive.  Thanks for all your replies and I will certainly be complaining about the treatment she received in A & E, particularly about the consultant at the Royal Blackburn Hospital who noted she had unusual liver results and still sent her home with a stomach bug!  If he had acted on those results then she would never have suffered complete liver failure and wouldn't have had to suffer so much pain.

 

Things could have been much worse but luckily she got the treatment and care she deserved in the end.  I'll update again soon and thanks for all the replies and good wishes.



#12 Joelf

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Posted 23 February 2014 - 10:13 PM

Hi Mdduk27,

 

Thanks so much for letting us have an update on your wife.

 

I'm very pleased to hear that she has received the correct treatment (at last!) and is responding well to it.

 

I do hope that your complaint will be dealt with quickly and successfully; it's disgraceful that she was treated in such a cavalier fashion at A&E and I hope you will emphasise that in no uncertain terms in your complaint!

 

Kind regards,


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#13 Amanda Thorpe

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Posted 24 February 2014 - 02:30 PM

Hello Mdduk

 

I am so glad your wife is responding well and hope she continues to do so. When you confront A&E remember that YOU hold all the cards and they owe YOU not the other way round.

 

Take care.


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#14 debonair susie

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Posted 11 March 2014 - 10:57 AM

Mdduk,

 

Your wife is SO fortunate to have you as her advocate and we thank you SO much for keeping us updated, despite these (obviously) very stressful times.

 

Though I am VERY relieved to read that your wife is responding well to her present treatment, you have EVERY right to feel as you do about her (lack) of appropriate treatment...prior to this time. :crying:  I hope you are able to sound off (if you should desire) to those responsible; if NOT, we have VERY broad shoulders (on these forums) and GREAT empathy...for you, your wife and family :emoticons-group-hug:

 

We will continue to keep all of you in our thoughts


Special Hugs,

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#15 Shelley Ensz

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Posted 01 April 2014 - 10:46 AM

Hi Mdduk,

 

It's been over a month since we've had your last update on how you and your wife are doing.  How is everything going now that she's back at home?

 

I am thinking about you both and sending good wishes your way.

 

:emoticons-group-hug:


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#16 mdduk27

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Posted 04 April 2014 - 01:19 AM

Hi, thought i'd just give a quick update.

My wife's now home but been back to hospital for a week suffering from pneumonia.

She seems to pick up chest infections quite easily, she's not on any auto immune system treatment yet but she has an appointment soon with her rheumatologist; in the mean time she has been put on 15mg of steroids daily.

We are waiting for an appointment at a transplant centre for her to be assessed for a heart lung transplant because the iloprost will only work for a unknown amount of time.

Hopefully things will settle down soon and we can look forward to spending a nice summer with the kids, thanks for all the posts and I'll continue to update.

Marc



#17 Joelf

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Posted 04 April 2014 - 10:44 AM

Hi Marc,

 

Thanks so much for letting us have an update on your wife.

 

I'm sorry to hear that she's had a bout of pneumonia and I do hope that the medication has helped her to feel much better.

 

We do have a medical page on Lung Transplants, which I hope will give you some more information.

 

Please do to let us know how your wife's rheumatology and transplant appointments go and I do hope that you and your family will be able to enjoy some decent weather in the UK this summer.

 

Kind regards,


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#18 Amanda Thorpe

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Posted 09 April 2014 - 02:02 PM

Hello Marc

 

Thank you for the update and I hope you all have a fab summer (not talking weather) together. Sometimes you just have to roll with it, you are all together and that's the main thing to enjoy.

 

Take care.


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