Just thought I would let people know the latest from my WONDERFUL Consultant, honestly she deserves a medal, no make that 5! As planned she telephoned me re. the CT scan I had, she said I had a lot of congestion at the top of my lungs, the right side being a little better. I explained I could not take the ills she had given me last time as they made me feel very sick. I told her that I was becoming more and more breathless, so she has prescribed some more "stuff" (apparently it costs the NHS 1000's!) makes me feel so guilty.
After reading up on the meds. it frightens me to death! so many possible nasty side effects, hopefully they won't be too bad. She is waiting for the heart scan results. I will actually SEE her face to face next month, and she will decide the next steps. She did say that perhaps she would refer me to the Royal Brompton!!!! the best hospital in the UK for heart & lung problems apparently. So, I feel I have achieved what I wanted for many years! someone to listen to me and offer help. This Consultant has gone overboard for me, and I am so very grateful!
Name of one of the new meds: Roflumilast. The others I will post when I get them
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Woofly
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Thank you for the informative update and so pleased that you can feel you are getting somewhere at last. I have made a note of the mentioned medication and will wait for the next instalment next month. Thank you for sharing this with us it is very much apprecited.
I am due for an annual review next week with the respiratory nurse at my surgery. I get severely out of breath just getting from sitting to standing but they feel it is ok to do my annual reiew over the phone !! The mind boggles.........
Hello Catnip. Thank you for your response. I have asked for some other treatment on numerus occasions but my GP holds his hands in the air and tells me I have tried everything. I am presently taking Braltus, Fostair and Ventolin plus 10mg daily steroids. I am told to increase to 40mg plus an antibiotic when I get a flare up but that makes no difference at all. I feel I may as well be taking Smarties!! Due to a central retinal vein occlusion problem in my eye I haven't been able to use the spirometer test for several years now so there is no up to date reading to hand. Kind regards.
Hi Dids, I know exactly how you feel, I went through being fobbed off for years. One day I saw a different GP and almost begged him to do me a referral to a consultant, he ummed and ahhed then agreed. WOW! I have had 2 consultations with a FANTASTIC consultant, who told me "in future don't be nice about things, it doesn't always work!" long story short, she is throwing the book at me in an effort to help me. YOU must do the same, i know it can be hard, but you DO have a right to the best treatment available. Be brave and GO for it
Thank you for the encouragement Woofly, I will aim to see a different GP and see if I can work the orcle!! Your experience has at least given me the inclination to try my hardest to follow in your footsteps.
Do insist Dids, and I know it is difficult to question these people. Imagine when I was finally sent to the Respiratory Clinic and within 15 mins I was told "here" a piece of paper was put in my hand, and said the oxygen would be delivered! I asked her if I could see a consultant and she said "No, you are considered too old for further treatment"! Totally devastating! and she was the Head nurse.
I just hope I bump into her when I go and see the Consultant!!!
Woofly, I hope you will bump into that nurse and have the opportunity to make an approptiate age related comment to her !!! I will do my best to fight, fight, fight.
Thank you for sharing your good and bad experiences, I feel I have more confidence now as I am over 70 and do feel we are sometimes excluded from the better treatments.
The first time I spoke to my BUPA consultant - moved to him when a lot of treatment was stopped due to the virus - he said 'but you are 70' ....and I replied that in my view, 70 was not particularly old, and that until I was ill, I'd been fit, well, and working 12 hours per day self employed. No way was I ready to give up on what I considered to be a normal life. I also pointed out that on a phone consultation, he had no way of knowing me anyway.
Since then, he seems to have realised that 70 is not that old for a lot of people, and that I'm determined to be as well as I can for as long as I can.
He has given me access to the latest treatment, and even got an appointment at a specialist Leeds unit for a one off gamma knife treatment two weeks ago. It was all arranged within a few days, and I am now due to have CT planning this week for SABR treatment on the rest at my local hospital.
Thankfully, I also have an asthma nurse at my GP's practice who is excellent at what she does, and is keeping me going until treatment starts to work, and side effects of earlier chemotherapy wear off.
Any health professional who will write off a patient due to age needs some education. Age is just a number, and all too often, the number has little bearing on the actual person and their levels of fitness and ability ....not to mention their aspirations!
They need to look at the person, not their birth certificate!
It’s always nice to hear that someone has an excellent consultant and is being well looked after. Hope the new medication is ok. Don’t feel guilty about medication you need it. Good luck with the face to face. 😊
The Royal Brompton is the best hospital to be referred to. I am under them....only downfall is that I haven't had a face to face consultation. Only being referred in lockdown. I have had one telephone conversation with a consultant and all other communication through a CNS by email. I have a video consultation next April. They wont see any outpatients for the foreseeable future. I dont want to travel there, but I do feel I am missing out somewhat. We all need that reassuring face to face.
Its brilliant to hear the your consultant is giving you the best help and treatment possible, I hope you get on well with new meds and side effects are minimal.
Goodness gracious Suzie, next APRIL!!!!! so even if my Consultant agrees to a referral, it won't be until the year 2030 probably! by then I will be 6ft under.
My referral was made through chest consultant in April and I had phone call from one of the Brompton team early July who took all my history and then I was sent booklets of both medication that I could choose from. I chose Ofev as you only take it twice a day. Then I had a phone call from clinical nurse specialist who said I would be going on medication and a pharmacist would call. That happened a week later and then the drug was couriered over to me. They send it to me every 4 weeks. Sorry for going on, but I feel like I'm getting the best help they can give me during these covid times. I'm sure you will get a phone consultation in a few months time. Dont forget mine next April is a follow up. Take care
Well I've had side effects and liver blood test was high so they took me off it for 2 weeks, then blood test, liver went back to normal, so now I'm on a lower dose, just under a week in. Have to have liver checked in 3 weeks, if ok I will keep on lower dose for a couple of months, then they will increase it again to get maximum benefit. Fingers crossed. Hope this helps
Great news! It's so good to hear that your consultant has gone above and beyond for you. I feel very lucky with my consultant too and I know what a difference it makes to feel listened to.
Thanks for the update and good luck with the new meds xx
Really good that you’re finally getting decent care, and it does make a huge difference to have confidence in the person leading your treatment. With regards to the Brompton, I purposefully moved us 250 miles just to get the child under them in an effort to get her sorted out after some pretty rubbish care elsewhere. They are world leaders in both paed and adult heart and lung, at the forefront of cutting edge treatment and research, and you wouldn’t get me to change hospitals now if you paid me a 7 figure sum, so if she suggests referring you, my advice would be to do it.
I am just hoping that she deems me suitable for a referral, it could well be the case it is too late. I am hoping with everything crossed something can be done.
Hi. Any referal to the Royal Brompton Hospital can mean you'll be tested for absolutely anything and everything to do with lungs and heart. They have a worldwide reputation for excellence so good luck to you Woofly. Parking if u have a blue badge needs to be booked in advance(I'm basing this on a few years ago, when I was an out patient with Professor Wells, so it maybe easier now). They do have student like overnight accommodation if you are travelling far but one of our very respected member's account of her o/night experience was sort of on the lines of "do it once" and that's enough. Nurses and Doctors are blooming fantastic so dont be nervous when you get your appointment date. You are able to take a companion I'm told too which may be helpful to some folk.
Will you report on how things went etc. Well done for getting your referral as so many Consultants don't bother, so like you stated, you have a good one there! Best of luck and enjoy the rest of your weekend. 🐿🌈
Thank you so much for all that information Squirrel, its was very helpful. I think IF I am referred it will be quite a long wait, just hope it won't be toooooo long.
Im using my mobile phone and on keypad next to space bar is a tiny emoji smiley face like this 😀. Press it and a whole world of emoji's you will find 😂. 🐿🌈
Ahhhhhhh so that's how you do it! unfortunately I always use my laptop, I have a mobile somewhere! but its only for dire emergency, ha ha ha (that's if I can find it), so I will just have to me emoticonless lol.
Thank you though
Just a note. The Brompton has a reputation for being the best but actually there are other centres around the uk which are just as good. They just don't blow their own trumpet. Like mine at the QE in Bham. Because of its reputation the Brompton has very long waiting lists. I suggest that you spend some time looking for the teaching hospitals who have specialists in your condition. Then you can have more options.
Thank you for that Littlepom, I am sure you are right, especially after someone on this thread mentions they had a TEL consultation NEXT APRIL!! alarm bells started to ring lol. I will see what the consultant says to me when I see her next month, of course it maybe I AM too old, I do hope not.
You should never be too old for the right treatment. Don’t accept it. People who know that they are failing you will find any excuse for their lack of expertise.
I am in a bit of a quandary, the consultant gave me new medication which I started 2 weeks ago exactly. AZITHRONYCIN 250g, ROFLUMILAST 250mg and water tablets.
Well, I have been feeling REALLY awful for the past 3 days, I have been desperate to finish the course (another 2 weeks) but not sure if I should.
Have any of you taken this medication and if so did you have horrible side effects? I would really love to hear from anyone that has.
I think I will try to contact the consultant tomorrow. I am SOOOOOOOO disappointed.
P.S. I certainly don't feel any better apart from the water tablets helping my swollen ankles!
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Update on my wife. 
