Re Royal Brompton

[kimmy59]

Evening everyone.

I have an appointment tomorrow with the man that does the Lung Coils, I know the trial is over but he still agreed to see me. I'm really nervous, I've got to have CT scan, Lung function then see the man himself.

I know I'm going to come out really depressed, my lung function will have got worse don't know I need someone keep reminding of what's wrong, but if he can help it would be great.

I'm such a misery but I'm quite scared.

Kim xxxxx

[Hidden]

Try not to be scared - how lucky to be able to see such a knowledgable man. It is scary to hear the actual numbers but at least you will know exactly what you are dealing with from one of the best. It is nerve wracking! I will be thinking about you and wishing you all the very best, look after yourself lots of love TAD xxx

[kimmy59 in reply to Hidden]

Thank you I do appreciate it, I just wish it was Wednesday. xx

[itsBAme in reply to kimmy59]

hi Kimmy theres a sayin ,the truth is like medicine bitter at first but in long run better,,good luck kim on Wednesday and just remember its only a number its how we are in ourselves what counts ye.

[kimmy59 in reply to itsBAme]

Thank you well said, sounds like something my dad would have said.

Kim

[Hidden]

Good luck Kim ! I understand 100% where you're coming from and you have my sympathy. LFTs and 6 minute walk tests make me want to run away and hide. Me running ??? Chance would be a fine thing I really hope that you can get the coils, then all the tests will have been worthwhile. Stay brave !

[kimmy59]

Thank you. Apparently the coils wont be available for a couple of years or so the doctor told me. xxx

[Hidden]

Good luck love,don't be to scared,exciting times in front for you,anything to feel better eh?

Hugs, Wen xxx

[kimmy59]

Thank you

I really appreciate everyone's taking time to make me feel better, I have a great family but they don't understand how I feel.

Kim xx

[Suzy6]

I will be thinking of you Kimmy. Try not to be scared, easier said than done. I have had, Xray, CT scan Lung Function, Petscan and Biopsy since end December with a Consultant appointment today. Another Petscan on the horizon and I'm petrified. Hate Petscans.

Try to put on your clothes that make you feel good, head high and go for it. Give yourself plenty of time to arrive. Being late and rushing makes me worse.

I will keep you in my thoughts please come back and report later.

Good luck Kimmy xxx

[kimmy59 in reply to Suzy6]

Thank you very much Suzy, I will report back. And I wish you all the luck in the world I'll keep everything crossed.

Kim xxxx

[Hidden]

Thinking about you this morning, take a deep breath it will all be fine xxxxx

[kimmy59 in reply to Hidden]

Thank you. I feel sick.

Kim xxx

[Hidden]

Just breath slowly and take it one step at a time. We are all with you xxxx

[jimmyw123]

best of luck today kimmy im sure you will be well cared for by the experts, lots of love jimmy xxx

[Puffthemagicdragon]

I wish you all the luck. Try not too be scared as you may qualify for coils.

I will be asking my consultant in June to see if I can get a test done and qualify for them. Reading up on the required criteria I seem to fit the bill but I don't want to get my hopes up,

[lynisa48]

Please do tbe scared,think positive you are going to see someone who is likely to improve your situation either now or in the near future, onwards and upwards Kim, warm hugs Lyn

[mwalker23]

Try to keep calm and try and stay positive. Good luck.xx

[FarmerD]

Hi Kimmy,stop worrying,I,ve been to the BROMPTON a few times now.The team that do the lung function test are really sweet.Dr Shah is just waiting for some ethics committee go-ahead for his next set of trials so should,nt be too long.I always think it,s better to know what level I,m at otherwise we could be worrying for no reason.It might be that things have improved,my Fev actually went UP,although that might be it was a different machine,only 1% up to 20% but at least it did,nt go down.Try to think positively,it,s the best lung hospital in the country so you,re in the best hands.Will be thinking of you Kimmy,best of luck.D.

[casper99]

I hope everything goes well for you today Kimmy. xxx

[helingmic]

Kim, I don't know what a lung coil is. I can vouch for the Brompton, though. I went myself for a CTscan; that is really smooth, doesn't hurt; you just lie on this flat couch which moves slowly while the camera takes small sections of photos of your lungs.

then there are these many function tests. They put you in a chamber filled with helium and oxygen for you to blow in this tube. while you are in there, your voice is funny. But this test doesn't last long and is certainly not painful. You have the other test like spirometry. but they are really very kind to direct you gently to do all this.

Then you may have to wait for all these results to be processed. I waited in the big hall, I drank a tea and had a bite. If you like reading, you'd better take some reading ( and perhaps one that is fun).

Then you are ushered to see your doctor, which is like in any other surgery, smooth and clean.

Take it easy and things will be easy too.

By the way, if they take some blood, the nurses do it amazingly. You nver feel anything when they put the needle in, I've never had it so good, that I still remeber it now.

Be courageous and believe in your strength, because you are OK and will be all along. Mic

[kimmy59]

Evening everyone.

Well I'm back not good news I'm afraid, my lungs are to badly damaged for the coils so it seems my only option if possible is Lung Transplant. The staff were brilliant in every department I cant praise them highly enough and Dr Shah was really sweet, he called me Superwoman because he said with the condition of my lungs I shouldn't be able to move without gasping for breathe. So I will ask my consultant to refer me for Lung Transplant when I see him this month, Dr Shah cant see why I shouldn't qualify. If anyone is thinking of trying for the coils go for it ask your GP to refer you.

Thank you to everyone for your support.

Kim xxxx