Broken Record ! : Well gang here we go... - British Lung Foun...

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Broken Record !

Delamere profile image

Well gang here we go again. Once more into the fray. I was admitted on Monday usual problems with addition of swollen ankles oh the Joy's! Had started coly trial to late as bacteria had been having a party. Consultant on ward as pleased to see me as l was him after our last encounter resulted in him receiving a to the point letter from my very supportive GP. Any way long story short well shorter. A&E Dr wanted ultrasound of my heart taken to make sure they weren't missing anything but it was out of hours so needed to be done next day. Asked my ward Consultant who announced that l was not a priority a heated discussion followed based on the fact that did he think because l had other issues and any heart issues l had could only be eased if anything ! Following day truce called now decided to send me for ultrasound and CT which apparently hasn't been done for 7years. He is now in discussion with my respiratory team about IV antibiotics and benifits they have l am keeping well out of that one ! It is very difficult when you are being treated by teams who have such different ways of dealing with your condition. Positive news is l have finally found name of Bronchiectasis specialist in Edinburgh so have asked GP to refer me. The real message of this ramble is do not give up and have faith in yourself. So on with the BIG GIRL pants going to need another pair soon. Best wishes and thanks for being there to all lung buddies

42 Replies

What a nightmare and amazed how you manage to hang in there, and stand your ground. Well done! We do know our bodies. Glad you have a good GP. Waiting for the next episode with bated breath.

K xx

Delamere profile image
Delamere in reply to Katinka46

Cheers me dears don't hold that breath too longv😀

Oh Delamere, I could hardly believe my eyes when I read this. Another pair of big girl pants winging their way to you along with a packet of love and hugs. So very well done for standing your ground. Shouldn't have to be so. Hope your supportive GP soon gets you under the care of the bronch specialist xx

Delamere profile image
Delamere in reply to CDPO16

Thankyou they will be very well recieved x

CDPO16 profile image
CDPO16 in reply to Delamere

🤗 x

Two wonderful replies so far so I just want to add well done for not giving up and fighting your corner along with your brilliant GP. Thinking of you and sending big girl pants and hugs your way. Xxx💜🥰💜🤗

Delamere profile image
Delamere in reply to sassy59

Thankyou so much for listening and bothering to reply you keep me going.

sassy59 profile image
sassy59 in reply to Delamere

Here for you Delamere xxx💕😘

Delamere profile image
Delamere in reply to sassy59

Thankyou x

Good for you Delamere. Keep being big girl feisty, get to that bronch expert and forge a good relationship between you, your specialist and the GP. Then hopefully you will no longer be subject to the vagaries of A&E and hospital doctors who know NOTHING about bronch. It's a no brainer, instead of squabbling among themselves they should have put you on 2 wks IV ( which they should arrange for you to take home) to knock this exacerbation on the head and investigated your heart whilst you are having the first few days. Sending you buckets of bronch power xxx

Delamere profile image
Delamere in reply to Littlepom

Cheers me dears something tells me l am going to need it. On top today though one lot of pulmonary exercises and chest clearance done by 6am x

Littlepom profile image
Littlepom in reply to Delamere

Hope that works for you. Nothing will shift for me that early. Just a lot of effort for little reward. By lunchtime I can get it all out. Have been fighting with physios over this all of my life.

Delamere profile image
Delamere in reply to Littlepom

We are all so different x

Littlepom profile image
Littlepom in reply to Delamere

Aren’t we just and I so wish that the so called professionals would acknowledge that we know what suits us.

Delamere profile image
Delamere in reply to Littlepom

Hear hear !

Katinka46 profile image
Katinka46 in reply to Littlepom

That reminds me of Professor Rob Wilson at RBH, in a video session with Dr Stephano Aliberti set up by ERS, he was sooo realistic about his patients. He knew he couldn’t get his teenage patients to do anything in the early morning, or get his 80 year-olds to stand on their heads, he accepted them where they were and worked with them. We know our bodies. Kate xxx

Littlepom profile image
Littlepom in reply to Katinka46

That^s really heartening. I have to say that my cons have left me to it.There is no point in wearing oneself out to loosen it from nooks and crannies after a night when it has settled in there, when a couple of hours of natural movement gets it going and then it all comes up much easier. It's the physios with whom I have had lifelong battles and now the bronch nurses. I know who's going to win 😉

Well done you, but you shouldn’t have to fight your corner in the middle of a bout of bronchiectasis, I am a fighter and fought my way back from terminal cancer but I don’t think I could have fought with anyone when I had my last bout, I take my hat off to you and send lots of love for a speedy recovery auntiesue82

Delamere profile image
Delamere in reply to Auntiesue82

Thankyou l get a lot of my strength from you wonderful lung buddies x

Oh Delamere, I’m not sure it’s big girl pants you need… sounds more hip waders! I hope the specialist in Edinburgh puts paid to your troubles and the winding road you’re on.

🕊🤗,

Anne

Dear Delamere, you're brilliant to hang on in there, it must have been so stressful witnessing that war between Titians. Bravo you 👏 Madness considering you haven't had a CT scan or ultrasound for 7 years! Hope they're happening today and also that referral to a Bronch specialist comes through ASAP. Good luck and very best wishes to you in getting over this. Huge hugs 🤗 and a bit of love wing their way north to you ❤

Delamere profile image
Delamere in reply to peege

Thankyou so much your support means a lot x

Damon1864 profile image
Damon1864Volunteer

What a carry on you have been through, I hope your GP refers you to that new specialist. Good luck and please keep us updated. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Delamere profile image
Delamere in reply to Damon1864

Thankyou x

A wise old surgeon once said if GP’s listened more to their patients and stopped playing God then we would all benefit and diagnosis would be dramatically improved.

Delamere profile image
Delamere in reply to Mrbojangles

Sooooh true !

Totally wrong that people with serious health issues have to fight to get the treatment they know they need ,as if battling the illness isn’t hard enough 😡 Stay strong and good luck with the bronch specialist hopefully things will get easier for you soon 🙏 xx

Thankyou x

💕💕💕

Oh Delamere, another battle, well, I think you will surely win the war!!! You have lots of stamina and at last you will get to see a specialist who will hopefully get you on the right track. Let us know how it turns out. Wishing you loads of luck along the road xxx😊❤️

Delamere profile image
Delamere in reply to HollyBoyd

Thankyou x

Like you, I am fed up of being bounced from pillar to Post, So much so, I now say NICKERS to it all.Hope all goes well for you

😉

It’s so hard to keep fighting when you are feeling unwell - I admire your spirit. 👏😊

You are amazing. You could teach a few of us (deffo me) how to stay strong and fight when you are feeling at your worst. I just want to curl up and give up. You are fab. Xx❤️

Delamere profile image
Delamere in reply to Lynneypin

Good job you can't see me now scrabbling around for my big girl pants x

Oh no not again. You’re in the best place to get the help you need. I so wish specialists dr would collaborate a little more with each other. I understand they have to be at the top of their game in their chosen field but a little professional development yearly update in other areas needs to be mandatory. Even if it’s only reading the new NICE guidelines and the links between one condition or another. Get well soon and hopefully you’ll be feeling like a bee person once they get to the bottom of all this trouble. X

They need to add communication skills to their training manifesto !! x

Good for you Delamere. You sound very assertive! I hope the Edinburgh specialist can harness all teams. Very best wishes.

Hi DelamereI have a continuous lung infection on top of cancer and COPD. .everytime I'm put on antibiotics I get better while I am on them . When not The infection returns. After several doctors play around with different ideas. ..and my lungs are completely blocked I called my G.P. great man, he came to my home and immediately put me on antibiotics prednisone and I am beginning to feel a little better but the reason for this ramble is that he has also booked me into hospital for a culture test to find which antibiotics work for me. I hope your man in Edinburgh will also help you out.

Regards ragrug

Delamere profile image
Delamere in reply to Ragrug

Thankyou keeping my fingers crossed

Well done for standing your ground - not easy when you’re not feeling well. I’m under a bronch specialist and before he put me on colomycin he give me two weeks of iv antibiotics, he said the idea is to knock it dead then the nebulised antibiotics keep it at bay. See if you can do them at home yourself so you can escape the hospital. I hope you get to see someone who can help with heart problems. It sounds like you need to be away from the doc you are under ASAP. Hugs and more knickers to you.

Delamere profile image
Delamere in reply to Mooka

Thanks for the knickers ! Yes that's exactly what my respiratory nurse said which was why she was so cross when trial was originally cancelled she took me in through fire door very SAS but unfortunately it had been 3 wks since last iv and infection had already started again

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