wife going into rbh today what can we expect

yes well mrs has got to the stage that everones given in and now its her turn for the rbh thing not been in there before what can we expect,know theres loads of you out there that have been in any tips.paul

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I totally identify with the feeling of 'everyone has given up'. When I went to the Brompton for the first time last year, I was convinced that nothing more could be done, and that no-one in the medical field cared because there wasn't much they could do anyway.

All that changed at the Brompton. I haven't been cured, and still spend a lot of time inpatient, but I finally feel that I am a part of a team who will do everything possible for my quality of life. They genuinely seem to care about me as a person (as well as my partner, and the things that are important to us). They have so much experience with difficult asthma, and are much more proactive than any other team of doctors that I've ever met. Rather than dealing with each acute admission as it happens, they are very good at thinking ahead and considering things that might shorten admissions, improve lung function between admissions, increase the time between admissions and optimise therapy.

I'm going in to the Brompton on Wednesday for a couple of weeks, and would be very happy to chat to you and/or your wife, or meet you for a coffee while you're there. If you have any questions at all, please feel free to send me a message.

Most of all, I just want to encourage you that, for me, everything about my attitude changed when I started to receive treatment at the Brompton, and I now feel much more hopeful about the future.

Jo

PS. The food at RBH is pretty good!

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I totally identify with the feeling of 'everyone has given up'. When I went to the Brompton for the first time last year, I was convinced that nothing more could be done, and that no-one in the medical field cared because there wasn't much they could do anyway.

All that changed at the Brompton. I haven't been cured, and still spend a lot of time inpatient, but I finally feel that I am a part of a team who will do everything possible for my quality of life. They genuinely seem to care about me as a person (as well as my partner, and the things that are important to us). They have so much experience with difficult asthma, and are much more proactive than any other team of doctors that I've ever met. Rather than dealing with each acute admission as it happens, they are very good at thinking ahead and considering things that might shorten admissions, improve lung function between admissions, increase the time between admissions and optimise therapy.

I'm going in to the Brompton on Wednesday for a couple of weeks, and would be very happy to chat to you and/or your wife, or meet you for a coffee while you're there. If you have any questions at all, please feel free to send me a message.

Most of all, I just want to encourage you that, for me, everything about my attitude changed when I started to receive treatment at the Brompton, and I now feel much more hopeful about the future.

Jo

PS. The food at RBH is pretty good!

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thank you j0 for that.nice to feel not alone,wasnt a good day on the whole hottest day of year air con train hot humid u guessed it got there having a major prob landed up having 2 nebs back to back in the waiting room and had to wait 4 hrs for bed to become available but nurses seem really good.dont ubderstand why they dont seem interested in her previous historty tests etc never got around to askingas it was hectic when she finally got a bed.paul

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I'm sorry to hear that you had such a horrid experience getting to the Brompton. Are you guys on Lind Ward, or Victoria?

When I was admitted for the difficult asthma protocol last year, one of the doctors came to talk to me once I was all settled, and took an extensive history. Despite the fact that most of us have already had all the tests known to man (and then some!), RBH always do all their own tests, even if this duplicates the tests done elsewhere. Partly this is so that they have all the results available to them in one place, and partly it confirms the findings, so that they can make the right conclusions and come up with the best plan to help. It can be a bit overwhelming to have so many tests, but it's reassuring to know that nothing will be missed!

I ended up staying for 2.5 weeks, instead of the scheduled 4 days because I had a couple of flares, and ended up on infusions, etc. While this was a bit of a nuisance, I was so impressed by the speed and efficiency of the team - it was like some kind of asthma-attack-dream-team! Within about half an hour of the nurse seeing that I was struggling, I had IV access, had been given lots of nebs, IV hydrocortisone, magnesium, and was on an aminophylline infusion. I sometimes wish that I could send the doctors at my local hospital for 'work experience' to the Brompton to just watch that happening. It wasn't just me, but several others on my ward over the course of the admission, and every time things were done quickly and efficiently, and I watched people go from struggling a lot to breathing much better. Amazing!

I hope that your wife had a peaceful night, and that she is feeling positive about the experience, and hopeful that the doctors will be able to do something to help. Is she under Prof. C. or Dr M-G (or another consultant)?

Sending best wishes, Jo

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well not sure of ward name right at lift half way along.under m-g not sure bout how long shes gonna be in form says 4/5 days but u were there for how long 2/3wks,no one said it could be that long,they seem to be cagey about commiting at the mo,bit worring as we are supposed to be on holiday at end of week.think u must have been on a fast track shes only had xray and blood test at mo still waiting for others.thanx for you input.paul

yi

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Hi Paul.

I have had a couple of stays at RBH, one was last year for difficult asthma protocol and then last month, I was in for a couple of weeks on Foulis Ward. They look after you extrememly well there, absolutely nothing to worry about, nice food and they should let you go out and about whilst you'r ethere (obvoisuly not on IV meds!)

They were cagey about how long I was staying there too but it depends on test results etc I suppose.

Hope it all goes well!

Any questions about RBH feel free to message me, am always there for outpatient appts!

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Hope that your wife is finding the DAP alright so far, and that she gets some good answers from the team and a PLAN!

Thinking of you on your final day!

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all that wheezes is not asthma

ok well after 5 days in rbh guess what yep declared not asthma causing the severe symptoms,seems there a prob with vocal chords not opening properly and and going into spasm hence cant breathe,now on one hand thats great cause who wants asthma?on the other however its taken 4 years to get here and other consultants who supposedly are specilaists in respitory stuff, added to that heavy amounts of steroid medication that we are not sure of what its done to body etc but to those who read this who are not getting anywhere with their treatment get ypurself refferd to the rbh ,they seem to do stuff that your local consultant dosent do.sorry its a bit of a rant.paul ps want to thank wishes and sjb fortaking time to replay to my posts.

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Fantastic that you finally have an accurate diagnosis!

I hope that you feel positive for the future, rather than feeling angry at the years of misdiagnosis and inappropriate treatment. I hope that it will be possible to get control of your wife's symptoms, and that her quality of life will improve dramatically as a result of this!

I seem to remember you saying that you were going on holiday, so I hope you both have a wonderful time! Keep us up to date with your progress - partly because we care, and partly because it's bound to be useful to someone else in a similar situation.

WIth best wishes, Jo

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ON HOL

me the mrs on hols on the k&a canal in a narrowboat shes reading the posts ive sent and had back and says thank you all

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SO glad the Royal Brompton found out what the problem was and

hope she feels better and gets any treatment for it xxxx