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5 day city break at The Royal Free!

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#1 Vanessa


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Posted 20 February 2010 - 12:05 AM

I am going into the Royal Free next month for 5 days Iloprost and some tests.

Can any old hands at this please advise.

Do you take pyjamas for all the time or do you change into clothes during the day? Towels, hairdryer? Are you in a ward with other Sclerodermians or general people? Are the wards mixed? Is there a fridge as I have Chinese herbal teas (yuck!)which I boil up every night but could predo some and put it in a Tupperware?

When they say tests, any idea what kind?

I am actually really looking forward to getting there.


#2 Joelf


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Posted 20 February 2010 - 07:01 AM

Hi Vanessa

This may not be relevant to your circumstances but I went for 5 days of tests at The Royal Brompton Hospital (I've also been to The Royal Free but only as a day patient.) The reason I mention it is because The Royal Brompton and The Royal Free Hospitals are very similar in that they are post graduate teaching hospitals and specialists in their particular fields and I would imagine they have a very similar setup.

At The Royal Brompton it was more like being in a country club; it sounds a bit sad but I actually had quite an enjoyable stay there!! We wore our ordinary clothes throughout the day (I wasn't sure what to wear so basically took enough clothes for a world cruise!!! ;) :lol:) and we were allowed to use our mobile phones and during the times I had no tests I went shopping in the King's Road!! B)

I was in a small room with a couple of lovely people (female); I used to toddle around the whole ward and talk to the other patients as did everyone else although I didn't come across any other Sclerodermians but I didn't know I had Sclero at that point anyway! ;) There were a lot of people with asthma and related conditions as The Brompton specialises in lung and heart conditions. The hospital provided all the towels (I had a clean bath and hand towel every day) and I don't use a hair dryer as my hair is long and curly and dries naturally. My only complaint during the whole stay was that the water pressure in the showers was very weak.........but you can't have everything!!! ;)

The food was a bit iffy but they are on a tight budget and I'm not a fussy eater anyway and they had a fridge which some people would use to put food in that they had bought and we could make as much tea & coffee as we wanted, whenever we wanted.

I don't know what tests you will be having but I have Interstitial Lung Disease so I had lung function tests, an echo cardiogram, a chest x-ray and a CT scan (I'd also had those last two at my local hospital), a bronchoscopy, a bone density scan (because I'm taking steroids), a 6 minute walk test and innumerable blood tests.

As I've said before the treatment I received from The Royal Brompton was exemplary and I do hope that you will receive the same from The Royal Free; from what I've seen from just being a day patient I'm sure you will!! ;) :)
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#3 lizzie


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Posted 20 February 2010 - 07:59 AM

Hi Vanessa, have being having 5 day spa breaks for Iloprost every 3 months for the last 3 years(in again next month too)- but at my local rheumatology unit - not the Royal Free. Am obviously not able to comment on facilities and protocol at the Royal Free, but thought my general experience might be useful to you. Hopefully you will be able to get more specific advice form someone who has been in the Royal Free. I change into clothes during the day because a)It makes me feel better b)It makes me feel more empowered when seeing the doctors C)I like to go for a walk off the ward (with the drip stand) and don't like wandering around the hospital in my PJ's. Getting changed is a bit of a palaver though as I have the iloprost running continously and need to get the nurses to take the syringe from the pump before I can remove/put on my top half. Thats not an issue if you just have the Iloprost over 6 hours each day. However, many patients stay in their PJ's all the time.

The ward I attend is mixed, as I think is generally the case for specialist wards, although the bed bays are single sex and there are also a number of single rooms. On the ward I stay on patients are not allowed anywhere near a kettle or geyser for hot water- due to health and safety issues- I think that will be pretty much the same in all hospitals.

Once the initial novelty of being on the ward has worn off , it can get pretty boring, so take plenty to read/do! Every stay I have had has been different , according to who else has been in at the same time- sometimes has been almost fun , other times pretty dismal. I have only occasionally been in at the same time as other sclerodermians- but imagine that as the Royal Free is such a specialist centre, that you will meet others. Hope it all goes well.


#4 Amanda Thorpe

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Posted 20 February 2010 - 08:20 AM

Hello Vanessa

My one and only stay at the Royal Free was a disaster. I have had Iloprost 6 hours a day for 5 days. I was on the cardiac ward and had my own room until the last day when I was moved onto PITU the ward that specialises in Iloprost treatments. If you're on PITU (think the name may have changed?) you will see other sclerodermians.

You will have a cannula in your arm so you will want short sleeves and whether you dress or not is up to you. I had Iloprost over 6 hours and was so ill I did nothing and went nowhere and what I was wearing was of no concern whatsoever. I don't know about showering/hair washing facilities as I was too unwell to do either my whole stay.

The food is dire and I lived off food brought in by my husband and sister from a nearby popular food store. I think having access to hot water for drinks is unlikely.

The tests you will most likely have are a chest CT, ECHO, chest x ray and lung function test and probably a blood test here and there.

The thing to bear in mind is that you will be under the care of specialists and that you're getting treatment really soon after diagnosis and this is always best.

I hope your stay goes well!

Take care.
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#5 Buttons


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Posted 20 February 2010 - 08:45 AM

Hi Vanessa
I haven't been to The Royal Free but have had an Iloprost infusion and tests done while staying in hospital. I only stayed in for three days because they did the infusion for 10 hours each day, the nurses came every 15mins to do blood pressure & pulse. Like Amanda I was not well, severe headaches and very sick so didn't feel like doing anything but I did get dressed each day which is not easy with a cannula in your arm.
I had lung Function tests done, echocardiogram, x-rays, nailfold capillaroscopy and lots of blood tests. It was during that first stay in hospital that I was officially diagnosed by the consultant. Unfortunately for me the Iloprost does work very well and only helped a little for about 10 days so I've not had one done since.
The food was dreadful but because I was so sick I didn't eat much at all so I actually lost 1/2 stone over the 3 days!


#6 Lillskuzi


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Posted 21 February 2010 - 03:42 AM

HI Vanessa

I had a 7 day stay at my local hospital, so not the Royal Free, and had Iloprost and IV antibiotics for 5 days. 6 hours a day for the Iloprost, during the night - very bad idea as you can't sleep, well, I couldn't - had such bad headaches and the nurses were taking my BP every hour during the infusion, so sleeping was out of the question. I am hedging a bet that I was the first person there to have had Iloprost so no-one had thought what would be a good time to give it or not. I don't know what is standard practice, but to me, it would seem better to have it during the day.

I got dressed (tricky with multiple cannulas) every day for the same reasons that Lizzie stated - it made me feel better and meant I could wander, and made me feel a bit more dignified when the dr's came round than if I had been sitting in my PJs.

I had all the usual tests, echo, lung function, chest xray, bloods and it was a single-sex ward, but just a general medicine ward, not a rheumatology ward wih sclerodermians, but I guess that is not going to happen in a local general hospital, I guess the RF could be v different.

Food was ok, better than I can cook (not saying much, though), and a good selection. There was nowhere to make tea for yourself, so I frequented the League of Friends tea shop quite a lot - mostly for something to do as yep, once the novelty wore off, it was boring. I was lucky, my bed was at the entrance to the ward and outside the door, there was a desk where doctors and nurses worked, so it was great people watching! I can imagine life being a bit more boring if you are stuck in the corner of a ward with not much to look at.

Hope all goes well for your stay ;-)