I am due to go in for 3 days of tests in Feb. I have pulmonary fibrosis / sarcoidosis. What sort of tests do you think they will want to do. Do they give you the results while you are there. Should you take someone with you. Do they have wifi at the hospital.
Thanks for your help.
Hi sunnyday22, my hubby has sarcoidosis and he used to go to the Brompton for 3 days. He would have chest xrays, lung function test and blood test. I didn't go with him but some people liked to have someone with them. Not sure about WiFi but you could check on their website. It is a good hospital so you should be fine. Xxx
Thanks I checked the website and they did not have any information about wifi. They have said that they are looking at doing a bronchoscopy
Hope it all goes well for you. Xxx
Can't really help but I know what happens at the Pulmonary Vascular Disease Unit in Sheffield, it might follow that same pattern: a barrage of tests, trundled all over the hospital by a porter, often the same one all day. And then the tests are collated and brainstormed by the Multi Disciplinary Team, and then a consultation with a consultant. So, yes, that's the routine at Sheffield. This is because patients are coming from a huge catchment area, and so they do it all at once. You couldn't get people to come in from The Isle of Man half a dozen times for separate tests. And then months later for the consultation.
Good luck. You can always phone the department beforehand and ask them what to expect. They may write and tell you, for instance, you need to practical stuff like comfy shoes for walking tests.
All the best, and let us know how it goes,
K xxx
Hi sunnyday. Firstly, the Brompton is a humdinger of a hospital and you'll get the very best care. I've been going there over 20yrs. I don't have sarcoidosis or PF, but I know they always aim to give you your results and a treatment plan before you leave. Usually the consultant will see you at the end of your stay to go over it all with you. For that reason I would take someone with you, if at all possible, as there may be a LOT to take in. There is limited accommodation available for relatives, at very modest cost - again it's a bit utilitarian but has everything you need for a short stay. I would phone the hospital about this as soon as possible. Alternatively there are a few hotels nearby which aren't too expensive for central London (as well as some which are!).
They do have free wi-fi. It's an old hospital so a bit decrepit in parts, but the staff are wonderful and the care 2nd to none. I know PF is one of the Interstitial Lung Diseases and, in case you didn't realise it, the Brompton has the largest ILD unit in the whole of Europe, so you really are in the very best place! Good luck dear.
Hi Sunnyday22 my husband and I both have sarcoidosis. My husband has now been diagnosed with Pulmonary Hypertension and is going in to the Hammersmith Hospital next week for investigations. I am going to stay with our daughter in Hertfordshire so I can visit him. Will keep you posted of his further treatment plan. We live in Dorset.
I wish you will at the Royal Brompton and I am sure you will get good care.
i have been in the the RBH for 4 days of test they have wifi in the hospital, while i was there, they loaned me a laptop but that may only be on certain wards this was in the old part of the hospital hope this helps
I have Sarc and PF caused by it but am not under Brompton but I have had over a number of different appointments including bronchoscopy, echocardiogram, a camera up my nose to check sinuses, opthamology exam, blooks, and xrays. Sounds like you will be getting yours over at once. All are fine. I only found the echocardiogram a little uncomfortable - they press quite hard on the breast bone as the ultrashound has trouble seeing the heart through our thicker sponger lungs.
Good luck - they are supposed to be the best (although I like my hospital too!).
marie x
Thank you all for comments and I will keep you posted of how I get on.
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