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Referral to the Royal Free Hospital


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#1 marlene

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Posted 15 September 2011 - 07:23 PM

Hi,

I had a visit to my rheumatologist the other week with regards to my systemic sclerosis with interstitial lung disease which was diagnosed in Jan 2011.

I am a real problem case for them and even though I live in the Highlands in Scotland, he wants to refer me to be seen at the Royal Free hospital in London. I don't know how long that will take to organise? Probably quite a few months but does anyone go there at present and what can I expect?

Marlene

#2 Joelf

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Posted 16 September 2011 - 01:11 AM

Hi Marlene,

I'm a patient at The Royal Free Hospital and consider myself very fortunate to have been referred there as it is a centre of excellence for Scleroderma. Unlike many patients, I actually did things back to front as I was referred to The Royal Brompton Hospital first by my local consultant, as like you I have interstitial lung disease. Before I could say 'Jack Robinson', The Brompton had me in for innumerable lung and blood tests and started me on my treatment of IV Cyclophosphamide. As thankfully they recognised my lung fibrosis as being caused by Scleroderma, part of their treatment plan was to refer me to The Royal Free for them to confirm the diagnosis and treatment. Therefore by the time I saw the rheumatologist and Prof. Denton, I had already been on the treatment so The Royal Free were just able to do a few more tests like the nailfold capillaroscopy, and give me specific Scleroderma advice about dealing with swollen stiff fingers and Raynaud's (my particular problems at that time). I now go back to them once a year; I go to The Brompton every six months and to my local hospital in between times.

As far as referral times go, in my case a six week wait seemed to be the norm, as this was the time it took between seeing each consultant from when I was referred by first my local hospital to The Brompton and then from The Brompton to The Royal Free.

I do hope that you're able to receive satisfactory treatment as I did; if you've not been on any specific medication I expect The Royal Free with their expert knowledge, will hopefully be able to give you some help. At least you can have the confidence that you're being treated by people who know their job and you should be in safe hands.

Do let us know when you get your referral appointment and how you get on, won't you?

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#3 marlene

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Posted 16 September 2011 - 06:31 AM

Thank you for the info Jo.

I was started on cyclophosphamide and prednisolone in Feb 2011 and about 3 weeks later I was in hospital with severe fevers 4 times daily. I had difficulty swallowing etc. I pretty well got every test I think was available and saw more consultants than I care to remember. No one could come up with anything. Then exactly 28 days from when the fevers started, I had all my skin start to shed in huge amounts. This was agony and lasted 21 days. This they put down to a severe drug reaction which is extremely rare but I also suffer from angioedema which is an allergic reaction to the unknown. I will never be given either of these drugs again as I was lucky to survive the drug reaction and I can now laugh about it but at the time I recall asking for my coffin as I was ready to jump in. :lol: The other drug rituximab which has been mentioned and I have declined as the possible side effects with a severe reaction is death and it is highly probable that I would get a reaction and I am not ready to take a chance on it as I have children.

The crest symptoms are coming in thick and fast now and the lungs are on a downward slope and I no longer see the chest consultant as there is nothing he can do at the moment. The rheumatologist is at a dead end really.... hence my referral. The skin around my eyes are knitting together and the eye specialist has never seen anything like it; he suggests it may be due to the drug reaction as he is not aware of anything being recorded in the disease to suggest that it is down to that.

I must say both consultants have been great and I appreciate that. I got referred to a physiotherapist and I attend her puffin hydrotherapy pool exercise class which is amazing. I can't believe the movement I can do in water that I can't on dry land.

Good news though is that I am being allowed a week in Majorca and go on the 8th Oct ( only after 2 day stay in hospital for dental treatment and 2 days helping out with the doctors exams) so I am really looking forward to that.

I was amazed at how cheap it was for the travel Insurance covering my condition £25 for the week. Thanks to the the info I read here; I would never have thought of them to try.

I am looking forward to going to the Royal Free hospital and I hope it is not too long a wait.

Marlene

#4 Joelf

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Posted 16 September 2011 - 07:13 AM

Hi Marlene,

Dear me, you have had a rough time with your drug treatment; I'm so sorry. Having such a violent allergic reaction to the medication must pretty well rule out that line of treatment; however, as I mentioned in my previous post, The Royal Free are Sclero experts so I think if it's humanely possible to improve your symptoms they will do their best to find a way.

I do hope you have a super holiday and are able to relax and enjoy yourself. How lovely for you; I'm very envious! ;) Hopefully you'll come back feeling refreshed and won't have to wait for too long after that for your appointment at The Royal Free Hospital.

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#5 Amanda Thorpe

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Posted 17 September 2011 - 01:36 PM

Hello Marlene

However far the Royal Free is it's never to far. I have been a patient there since 2007 and would not go anywhere else for my scleroderma care and I live 5 minutes away from my local hospital. You will get expert care by experts.

My dear friend with scleroderma has had rituximab and found it very helpful but it's not for everyone!

I hope you enjoy your holiday and that you Royal Free appointment comes soon and please make sure you let us know how you get on!

Take care.
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#6 marlene

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Posted 24 October 2011 - 03:32 PM

I had a fantastic holiday and fabulous weather in Majorca. It was the first trip out in the wheelchair too. The staff at Manchester airport were great and I felt relaxed. They upgraded us to extra leg room seats and at Palma airport they were just as organised and I must say I was so impressed.

The doctor exams were really good and it opens my eyes really at how few doctors recognise the disease, but I will continue as long as I am able to do so to participate in them. The more doctors that become aware of the disease can only be a good thing in my book.

I got home from holiday to find a letter waiting for me for my referral to the Royal Free hospital in London on 22nd Dec and hope there is no snow then. It will be a 565 mile journey there and another 565 miles back. I am hoping to fly weather permitting.

I look back on the year I have had living with systemic sclerosis with intertitial lung disease and what a year it has been...I look back at what I could do then and what I am physically able to do now and am totally amazed at how fast this disease is attacking my body and leaving its mark. It started with a cough and fatigue...the doctors were so amazed at my lungs being so damaged with so little other symptoms. But when the other symptoms started to come, they have progressed at a very rapid, scary rate. When I had the severe reaction to the drugs they gave me and now can't prescribe anything else, I now hear so often...there is nothing we can do for you...the disease progress at its own rate...what are we going to do with you...I can't explain why that is happening, I haven't seen that before... I feel like a very HOT potato that every doctor is scared to handle and keeps passing me to the next one. Maybe at the Royal Free hospital I may get some answere to the lots of questions I ask ?

From Marlene................................... Roll on December 22nd :) :)

Hope I manage to get some time for holiday shopping :)

#7 Amanda Thorpe

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Posted 24 October 2011 - 03:43 PM

Hello Marlene

Yes you will get answers (may not be the ones you want though) at the Royal Free as well as doctors who know how to treat scleroderma properly! It's a long journey for you but I expect it will be worth it.

Take care.
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