I'm So Happy, I'm So Happy! whooppee!... - British Lung Foun...

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I'm So Happy, I'm So Happy! whooppee! (re. consultant)

Woofly
Woofly

Wow wow, can't believe Just had my tel. consultation, what a fabulous lady..she said " mmmm you have been having a rough time eh?" she asked me lots of questions and concluded she will arrange a full MOT! CT scan Heart monitor thing, and will do keyhole surgery on my lungs!! the bottom of the lungs are ok, but the top are "fuzzy" hopefully she will be able to open them up.

Well how is that for a turnaround? I get angry when I think of what the head respiratory nurse in the hospital said to me. "No, there is nothing that can be done now, so I will not refer you to a consultant!! playing God or what!

She is also sending me a new pill which hopefully will open up my airways, also another spray for my terrible rhinitis, she said "they are not going to like this as its very expensive, but its the ONLY one that works".

Hopefully I will get the scans done sometime in September. Maybe there is nothing that can be done now, but at least I will know I tried everything possible.

I couldn't wait to let you all know my good news. xx

86 Replies
oldestnewest

Fantastic Woofly! As you say, what a turnaround. Such positive news is brilliant. Wishing you well. Xxx😘💖❤️

Damon1864
Damon1864Volunteer

Wishing you well and it certainly is a turn around. Good luck have a great day and take care 😊 Bernadette xx xx 🌈

Wow that really is great news. Thank you for sharing this with us. How refreshing to find such a good doctor. What happy news indeed 😊 Wishing you all the best for your scans and treatments when they come 🕊️

Don'y you just love it when a consutant listens to you and adopts an action plan on your behalf. :) send her to me and i will shower her with gifts and flowers.congratulations and the best of luck for the future.

Ski's and Scruff's xx

Hacienda
Hacienda in reply to skischool

I'll join you Carino. XXX

Brilliant News for you. Mine said she will arrange a Face to face Consultation 3 months, I have had two consultations by Phone. Last one 4 days ago. Great I thought, Received Letter this Morning another Phone Consultation instead. (sad). I think once your on "Quality" of Life Meds, They give up. .. Stay Positive Woofly, You have a very Good Consultant. xxx C.

So pleased for you. No wonder you are over the moon. We need to be a tad sceptical at times and try to push for referrals. By the way, how did you get this referral if the hospital nurse was against it?

All the best

Kate xxx

Woofly
Woofly in reply to Katinka46

Hi Kate, I went to see a different GP about something else, he was really nice, so I asked him if you would try and get me a consultation, but didn't hold out much hope., but hey presto 6 months later bingo! The Consultant even said !"you should be a bit more forceful next time"!

Thank you for the good wishes.

Katinka46
Katinka46 in reply to Woofly

Thanks for the reply. I looked back at your posts and read what happened. But thanks for repeating the story. It is difficult to insist with doctors. I am stealing myself to ask for a second opinion on two CT scans. I have had at least two CT scans in the past where the initial report failed to pick up abnormalities that were subsequently picked up on a second opinion. And there are two new ones that I think may show things....

k x

Woofly
Woofly in reply to Katinka46

Good luck with that Katinka, it is daunting to question some of these people!

Restores your faith in consultants and nice to have good news.

All the best for scans etc

J

Whoops... apologies... I looked back at your posts and read what happened. Kx

I’m so pleased for you.

I’m thrilled for you ! Intrigued about the news pills!

Woofly
Woofly in reply to Gladwyn

I will let you know when I get them!

Gladwyn
Gladwyn in reply to Woofly

Thanks. 😀🦋

Dids49
Dids49 in reply to Woofly

Would be very intersted to have the name of those tablets please when you get them. My GP holds his hands in the air when I ask if there is aything else that I can try. I am getting beyond desperate. I wish for you to have a great benefit from them. God luck and thank you.

Woofly
Woofly in reply to Dids49

Dids, I know exactly what you mean about the lack of help or empathy re. the GP. All I would say is to keep on fighting! Get an appointment with another GP and DEMAND! that you are seen by a Consultant! (I was told by the consultant that will treat me to be very forceful!!) I do hope you get some help.

I will let you know the name of the pills when I get them, quite a few people are interested, so I will publish it under WOOFLY when I get the pills and the spray!

Good luck and FIGHT

Dids49
Dids49 in reply to Woofly

Thank you Woofly. I did find mention of a tablet on line that is to reduce the inflamation in the lungs. I asked my GP about it and he said it can only be prescribed by a consutant but that doesn't mean it would be suitable for me. He did write to the consultant to ask for permission to try it for me but within 48 hours everything came to a halt for COVID 19. I did ask my GP about it again a month later and he indicated that I was unlikely to hear anything about it because of the backlog of patients and appointments that will have built up at the consultant's clinics. All I can get now is a telephone appointment that will most probably be with a doctor that knows nothing about me. If I can 'discover' any tablet that may help me I will still keep asking them if I can try it. There seems a reluctance to send me to a consultant but being over 70 perhaps I am considered too old. So pleased you at least have the hope of some better treatment with a little light at the end of the tunnel. Very best wishes to you.

Patk1
Patk1 in reply to Dids49

Do u know the name of the lung anti inflammatory pls?

Woofly
Woofly in reply to Patk1

I haven't got them yet, but I will put the name on here when I get them.

Dids49
Dids49 in reply to Patk1

Phosphodiesterase-4(PDE4)

Patk1
Patk1 in reply to Dids49

Thanku x

Woofly
Woofly in reply to Dids49

My heart goes out to you, it's so awful fighting for something that really is your right! I will put the name of the pill on here when I get it. I also was told by the lovely (NOT) respiratory nurse at the hospital when I asked to see a consultant, her words were" you would not be considered for further investigation because of your age" I am shhhhh 79 lol Good luck and keep on fighting

Dids49
Dids49 in reply to Woofly

Thank you Woofly for your kind comment. I sometimes get cross because whatever age we are our tomorrow is still as valuable to us as anyone else's is to them. How dare the nurse say that to you !!!

Cade1
Cade1 in reply to Woofly

It is so frustrating to have to keep fighting all the time, I wish all gps actually listened to us all x

I’msohappy

That’s such good news,

Sometimes we can get so dispondent- banging our heads...........

And then a light (angel) , comes along and lifts our spirits 😊all the very best

Brilliant news for you. Hope all goes well.🤗🤗

Well isn't that just brilliant Woofly. 👏👏👏 I am so happy for you. I am looking forward to reading about the rest of your journey. Keep 😃 smiling!

Cas xx 🙋🐕

Woofly
Woofly in reply to Caspiana

Still can't quite believe it! Thank you Caspiana xx

Great news good luck .

Brilliant news! So pleased for you

Sopsx

Hi there and great news all round - for you and for us to hear something uplifting. Wishing you all the best. 🐿🌈x

Woofly
Woofly in reply to SquirrelsHolt

Thank you squirrel, (love that name!) I will let you all know how I get get on.

SquirrelsHolt
SquirrelsHolt in reply to Woofly

Oh yes, please do let us know......it sounds exciting so all the best. 🐿🌈

Lucky You...That is fantastic news. Love it when good news pops up. I would love to hear about the name of the pill that will open up the airways and the spray for the runny nose. Please Woofly let us know the names of these two items. Could be really useful to all.

I wish you nothing but the best. Keep on staying positive and keep well and of course be really careful. September isn't too far away at all. Cheers

Woofly
Woofly in reply to Juliette011

I promise when I get the pills and spray I will let you all know!

What fantastic news, Woofly. It's so wonderful to be listened to by a consultant who understands where you're coming from. Good luck with the meds and the tests.

That's excellent, always nice to have good news particularly when it concerns your health, and when someone doing their job right is concerned enough about you to take the correct action, irrespective of the cost, I really hope it all goes well for you, take care and good luck 😊

Just to add I would also love to hear about that pill too, anything that opens up the airway's has got to be good.

Brilliant news! Good luck! 💕

What good news Woofly, even if they can't do much, with your new meds, you will be much more comfortable, which is good, I wish I had your consultant. Thank you for sharing your good news with us, good luck for all your scans etc, XXX Trish

Really glad that at last you are being taken seriously. No one wants tests and pills etc unless you are feeling ill. Hope you will feel better soon. When in doubt ask for a second opinion. Best wishes Marl Bee.

What a lovely consultant. So good news. Keyhole surgery on lungs. That's something I have not heard of. I might ask my specialist as I have a blocked left lung.

Woofly
Woofly in reply to skipwork

Go for it! My Consultant even said to me "if they can't help when you speak nicely to them, be forceful, niceness doesn't get you anywhere it seems

Kcn3
Kcn3 in reply to Woofly

Which hospital is the consultant based? The royal brompton?

That's excellent, always nice to have good news, hope all goes well

What a good result from a phone call.

Woofly
Woofly in reply to 2greys

I know! still can't believe it!

Brilliant news hope all goes well .I know it's like banging your head against a brick wall trying to get help and someone to listen .So I,m thrilled for you hope you're feeling much better soon .Love and Hugs x

Glad to hear you're having a good result. I have been in the same position as you and they were all false promises. Hope you have better luck.

Woofly
Woofly in reply to Davyroy

Oh! PLEASE don't let that happen to me, I have read of peoples procedures being cancelled for no good reason! Keep your fingers crossed for me

Dids49
Dids49 in reply to Woofly

We will keep fingers and toes crossed for you but hopefully you will get treated properly very soon.

Isn't it brilliant when you get an empathetic doctor who will order tests and advise better meds for your issues?! Great news for you x Anita

Doesn't it just restore your faith in the system. I am so pleased for you Woofly and hope all goes well for you, keep us updated on your progress x

Woofly
Woofly in reply to Izb1

I most certainly will keep you all updated! step by step lol

I'm so glad your consultant listened to you, siu d like you've got a good one there. Let us know how your meds work x

Wow -that's amazing! Did you go privately, or was this an NHS consultant. Wish they were all like her. Good luck with everything.

Woofly
Woofly in reply to Dedalus

No, It was the NHS Consultant, how lucky am I. Apparently there are 2 consultants my one (smile) and another one who is NOT nice!!

Dedalus
Dedalus in reply to Woofly

LOL - so happy for you that's got the good one. All best wishes going forward.

Dids49
Dids49 in reply to Woofly

Pleased for you to have the right one now and wish you all the very best. Please keep us posted and let us know how you get on.

Just read your exchange above with Kate -so no need to reply re my question about consultant (thanks).

That is brilliant news. Good luck with it all.

Brilliant news. Where’s there’s life there’s hope

Just read your info with interest because I have just had a similar experience. This was with two consultants, one telling me everything had got worse and I needed a bone marrow biopsy and the other one telling me I was doing quite well and could be left until my next three months check up. Also, a bone marrow biopsy wasn't necessary at present. Like you I felt "whoopee"! Anyway, what I would like to know is the name of your recommended rhinitis spray. I don't suppose you will be able to tell me whether you have noticed an improvement yet. My rhinitis is quite bad and produces a lot of mucus which I cannot clear easily. Therefore, lots of clearing my throat noises, sniffing and coughing. A specialist told me once there was nothing I could do about it as was age related. I was given a nasal wash and have tried sprays but nothing has worked. Sending my best wishes to you and hope that all works well from now on.

Woofly
Woofly in reply to Spanielblue

I will let you know as soon as I get it delivered. She said it is the ONLY one that REALLY works, but they don't prescribe it as it is very expensive! I will let you know how I get on with it.

Spanielblue
Spanielblue in reply to Woofly

Yes, please let me know as I am very interested

So lovely to hear your good news! Thank you for sharing - made me happy as well as you!

Helen

Great to here your good news....and yes being forceful can help sometimes. I havent seen my new consultant yet as ive been referred to Bromoton and cannot go there, but have a CNS assigned to me who i have contact through email or phone and she is wonderful. I have also got an exceptional GP who goes the extra mile. When i have to have blood tests she sees me half an hour before surgery starts to do them, rather than the nurse doing them and then we have a chat and catch up. Wonderful service. It makes a huge difference when you know the professionals care about you. Good luck with the scans and treatments

Brilliant news for you Woofly. So pleased for you. Having to fight your corner to get the correct treatment you should have been getting anyway should not happen, but I am afraid it all too often does. Good on ya for sticking at it and good luck with your tests and treatments.

Cx

That sounds great Woofly I hope you get on well with the pill and spray and be interesting to know how you get on. look forward to hearing about it. It is so frustrating that you have to be forceful and it is 'he who shouts loudest' seems to get noticed. Since lock down i think many people have been side tracked or forgotten and who knows when we will get appointments with consultants? I tend to lose faith in the system, but then I hear your story and it gives a bit more hope.

So happy for you. I bet the new drug is a pde4 inhibitor called Roflumilast. Ive been researching alot recently on drugs to help with severe breathing problems. It basically works by suppressing inflammation in lungs . It relaxes and smooths muscles by inhibiting inflammation. Taken along with inhalers is ment to give brilliant results. Usually only given to people with severe copd etc. There's another pde4 inhibitor called apremilast that works for psoriatic arthritis, as it calms inflammation caused by arthritis. This is how i originally camr across the one for lungs also. Really hope it works for you and i bet your glad now u pushed for another opinion. Judt goes to show we have to be our own advocates at times or things dont get done!! X

Woofly
Woofly in reply to Mickymoo

That was really interesting, I will let you know the name of the drug when I get it! I am crossing everything I have in the hope it will make life just a little bit easier!

Mickymoo
Mickymoo in reply to Woofly

You really need a ct scan. Or else how do they know whats going on. I recently started having breathing problems (im 42) and the gps wouldnt take me seriously, even though my feet and ankles were filling with fluid. One particular gp showed an interest and sent me for a blood test (bnp test) to check if my heart was under pressure. Low and behold i have heart failure. Saw a cardiologist within 3 weeks who is quite stumped and spoke to the respiratory consultant at the hospital who suggested a ct scan. Turns out i have emphysema also! Spirometry test also shows moderate copd. I also have psoriatic arthritis. My 1st appointment with respiratory was to be in march which was cancelled due to covid. I rand respiratory secretary and she said itll be at least another 6 months til i see the respiratory consultant. I rang the nice gp and he said thats not good enough. He has written to respiratory demanding i be seen alot sooner. So it shows what a "good" gp can do for you. Good luck and keep us informed x

Woofly
Woofly in reply to Mickymoo

I most certainly will keep everyone concerned about how things are going. I also hope that you receive the treatment you deserve very soon. As you say, a good GP can work wonders!

Mickymoo
Mickymoo in reply to Woofly

My gp started me on an inhaler called incruse ellipta and to be honest it made my breathing worse. Also felt really tight chested. Following a call from him last week he has changed it to anora ellipta . I stopped the 1st inhaler and within 2 days my chest felt a lttle better . Bit scared to try the new one now ! its very frustrating not being able to see amy specialist at present (as your well aware). Cant get the proper treatment without proper diagnosis. I dont even know how bad the emphysema is, only know i have it. So i understand your frustration xx

Well there you go! I always say never give up asking questions and taking things further . One life ..... and it’s yours. Well done👏

T\rue what you say, but for those alone my heart goes out to them. Its a tough fight alone

Great news x

I'm so pleased you followed your instincts and pursued other avenues. I'm in a similar position, I've been fobbed-off all year and my gp refused to refer me anywhere else last week... I got that remedied when a kind receptionist got a senior gp to ring me!! I'm still waiting for a doctor to take genuine interest in getting me diagnosed and well.

Hi Woofly...that is great news...what exactly is your condition please?

B x

Hi jamesmum! As far as I know I have COPD, BUT I believe there are various other things that comes under the umbrella of COPD. After I have seen the Consultant hopefully I will know more.

Hello Everyone, As promised I can now give you the names of the drugs I have been given! Only got them today, so cannot report any results, but would love to hear from anyone that has been on the tablets. The name of the pills are: UNIPHYLLIN 200 mg and the spray for my rhinitis is called: Avamys. Please keep your fingers crossed that they work for me.xx

Hacienda
Hacienda in reply to Woofly

Fingers Doubly Crossed. Keep us updated Hun. XXX C.

After telling everyone how happy I was to get some new pills, in fact over the moon, I started taking them a few days ago, I am in bits..... they make me feel so sick, all day, also a splitting headache and feel "wobbly" I am devastated to say the least.

How disappointing for you ☹️ I'm really sorry to hear that. Is there any chance that the side effects will ease after a few days once your body has got used to them?

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