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
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Woofly
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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.
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?
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"!
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....
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.
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!
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.
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
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 !!!
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
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 😊
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.
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
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.
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.
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.
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
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!
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
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!
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
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 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
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?
Hello Pat, No new pills as yet, I am having another telephone consultation after my CT scan on the 4th Sept. (fingers and everything else crossed!) I will post and let you know what is said.
I have just seen this so apologies so late. The head nurse at the hospital should never have said that they are not a consultant. What new pill and new spray did she prescribe sounds an amazing consultant.
Sorry Smoggy I have only just seen your post, one of the medication is: UNIPHYLLIN 200 mg and another one that I can't remember. I really tried to persevere but they made me so sick, so sadly I had to stop them
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send her to me and i will shower her with gifts and flowers.congratulations and the best of luck for the future.
Had my ULTRA SOUND done by UK CARE and was very good 
Consultant appointment 
Pulmonary Fibrosis...........still sucks but what a difference a day makes!!!!!!!!!!!!!!!!!!!
So far nothing has changed
Question re : Azithromycin
