Trial to paradise undertaken ! - British Lung Foun...

British Lung Foundation

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Trial to paradise undertaken !

Delamere profile image

Well after all the shinakings finally had trial for nebulised colymycin. We did get stopped by clip board police on our way in through fire door but luckily my wonderful nurses secretary had forseen this and sent me a get out of jail letter which thankfully by some miracle l had remembered to take with me. Trial went quite well some concerns as stats dropped but l was able to bring them back up. So home l go clutching 30 bottles of presious goodness and strict instructions to monitor myself closely. As l was going respiratory nurse said she had managed to get a copy of my discharge letter have only been out 3 wks ! She had printed off a copy for me. There was only one problem bronchiectasis was not on my diagnosis just asthma and treatments for that !!!! So she said to leave it to her and my consultant and they would put the record straight told me not to worry about it. The sad thing is that after everything that has happened l am not even surprised that the condition that has been giving the most cause for concern is not even mentioned.

38 Replies

Keeping everything crossed for you now Delamere but find it strange that bronch wasn’t even mentioned. Incredible. Take care xxxx

I am so pleased you finally got the trial you need. That the condition you have most concern about was missed comes as no surprise. My wife went to see her consultant and he said we must MRI your right knee. A letter arrived for an ultra sound for her right hand?

Gladwyn profile image
Gladwyn in reply to Badbessie

That’s scary….

I hope that you benefit from the colomycin. Not a bit surprised at the exclusion of bronch from your letter. ( I reckon they can't spell it). Both the discharge letter from my haemorrhage in nov and ALL of the letters concerning my pacemake disaster talked of me having 'mixed lung disease' which I don't and never mentioned bronch. I know what I have, my consultant knows what I have. So do you and yours. Not worth the waste of energy worrying about the idiots who don't. It hasn't changed in my 68 yrs of bronch and it isn't ever going to. X

Delamere profile image
Delamere in reply to Littlepom

You are so right about wasting energy on things you can't change. Stats dropped last dose of coly but am going to persever as l was able to bring them up within 2min really desperate for it to work as nurse says we are running out of options x

Littlepom profile image
Littlepom in reply to Delamere

I find stats are dropping a bit on the meropenem but up again within a few mins. I don't bother testing it now, just notice if I begin to get a bit generally wheezy and the mucus gets 'stuck' giving me problems at night. I presume that you are nebbing saline (0.09%) after each session. It soothes the lungs. Mero is my last ditch neb option but there is always IV which we can do at home now.

Delamere profile image
Delamere in reply to Littlepom

Did not know about saline thanks l will try that xx

Littlepom profile image
Littlepom in reply to Delamere

There are protocols like nebbing ventolin before and saline afterwards which are sometimes given as something that must be done and then other centres never mention it. Also I always insist on saline to make up the drug, even when it is usually done with water for injection. It makes it less ‘raw’ on the lungs.My 30 years of experience of nebbing abs has taught me that our reactions to different antibiotics vary and of course we ourselves are all different. So it’s a case of trying for yourself.

It’s so good that you have got to this stage. I do hope that it’s trial is helpful and can lead to a general improvement for you. Take care. Grace

Colomycin is brilliant if you can tolerate it. I used to need a couple of puffs of Ventolin beforehand but within about 3wks I was fine & I’ve been on it about 10yrs now. I’m sure it’ll work for you.

My discharge letters are always a work of total fiction. They’ve got stuff in there I’ve never had, and major problems missed out! They’re a joke 🙄 xxx

Gladwyn profile image
Gladwyn in reply to Hanne62

I’m glad I’m not the only one who gets letters full of fiction. I really thought the respiratory nurse who lies her head off every time she writes to my doc and it gets copied to me was a one off. I’ve never challenged them because I don’t expect to be believed. Why do they bother I wonder ? Is it to impress someone?

Hanne62 profile image
Hanne62 in reply to Gladwyn

I actually asked the junior dr to correct one, once (usually written by them.) He did, but the revision just had different mistakes! It can be dangerous eg when they get the dosages wrong in the list of drugs you’ve been prescribed 😬

Delamere profile image
Delamere in reply to Hanne62

One of the positive things l get from this site is the knowledge that it is not just me ,! Sorry to hear others have same issues but must confess to being comforted that l am not loosing what are left of my marbles x

That’s really very worrying! I hope they do rectify it pronto!

M pleased the trial went well,x everything crossed here.

Delamere profile image
Delamere in reply to Oshgosh

Thankyou everything crossed here as well x

I'm glad that the respiratory nurse put your records straight Delamere but given how things went during your recent time in hospital I'm not surprised that bronchiectasis wasn't included in the discharge letter.

Good luck with the trial xx

Delamere profile image
Delamere in reply to CDPO16

Thankyou.Must admit nothing suprises me now ! x

That's pretty shocking as an 'oversight' Delamere, hooe they manage to sort out a revised discharge letter for you.Yippie! You got in, you've started the trial, brilliant and I do so hope it works well for you. Best wishes, Peege

Delamere profile image
Delamere in reply to peege

Thankyou going to try my best Big Girl pants and stubbornness well on x

I do sometimes wonder if those who write these are so busy trying to include all the minor peripherals that they forget the main event. Hope you trial works, fingers crossed 🤞🏻

🕊

Delamere profile image
Delamere in reply to TomTitTot

Thankyou x

The thing is this is the norm nowadays

Either complain or grin and bear it

Delamere profile image
Delamere in reply to Eastend555

Very true

Glad that you've got your colymicyn at last and hope it works. Bet it will- you're such a determined lady it wouldn't dare not to. As for bronchiectasis, can you reasonably expect health professionals to have heard of such a rare condition, especially one with an unspellable, unpronounceable name. xxxxx

Delamere profile image
Delamere in reply to Alberta56

Thanks for your faith in me if sheer bloody mindisness would fix it l would be quids in

Alberta56 profile image
Alberta56 in reply to Delamere

I will try to follow your good example and be as bloody minded as possible when need requires. Why is it easier to be bloody minded on behalf of spouse/daughter than for myself.

Delamere profile image
Delamere in reply to Alberta56

I wish l knew. When l was a carer l really came out fighting for my clients if l thought they were not being treated properly same for family but for myself seem to suck it up until the dam breaks and then a real hissy fit happens and decks are cleared😆

I'm so glad to hear you've got your trial sorted out at last and hope it works for you!

As for your discharge letter, I was sent one from a registrar of department (not lung related, for a change) and it was incorrect on so many counts that I wrote a very long letter back and copied it to the consultant in charge of my case and my GP. I felt it necessary to refuse discharge on the grounds that what was said was completely wrong and asked for another test to be done.

I received a very prompt letter back (next day!!!) agreeing to the other test and apologising for the inaccuracies. Following the test, the consultant phoned me to discuss and I agreed to be discharged.

My final discharge letter was still not 100% right but at least I felt secure in the knowledge that I had stated my full and accurate account of my condition and situation which would at least be on file for someone else to read. I was concerned that if someone picked my case up again in future, they would only see the hugely inaccurate account written by the registrar, but, hopefully, they will now see my response as well.

I would urge you to write something and send it to the consultant dealing with your case so that it can be kept on file.

Good luck with the colymycin.

xx Moy

Delamere profile image
Delamere in reply to MoyB

My goodness we really have to be on oyt toes well done you

MoyB profile image
MoyB in reply to Delamere

I feel as though I am turning into our medical secretary as every week I am having to follow up something for either myself or my husband.

Last week it was the gastro consultant as I have had no feedback from him on gastrocopies and colonoscopies done months ago. His secretary said I should have heard from him. Next day she phoned me to say he had asked her to make a phone appt. for me. I wonder when I'll get that.

This week I am chasing cardiology for my husband as he is having a pacemaker fitted tomorrow but has been given no information about it! We went to what we thought was a pre-op assessment on Friday but it was only blood test, COVID and MRSA tests. The nurse couldn't answer any questions.

He needs to know if he could, or should, take his meds before going in, given that they are not all for his heart. He was only phoned about the pacemaker op last Tuesday and has received only a very basic appointment letter. We have had to do online research to even find out when he may be able to drive again. Thank goodness for British Heart Foundation.

I am getting rather fed up of having to phone about medical stuff, but if you don't chase it up, things are often wrong.

I am not blaming the hands on staff. Mainly it is about the systems they have to abide by.

Sorry to hijack your post with my groan! I'll shut up now. 😁

Well done. Did you not get a copy of your discharge letter with your drugs last time you were discharged? I usually get a copy and an electronic copy goes to my GP, which I can read on line. Good luck with the trial.

Delamere profile image
Delamere in reply to Digger0

Didn't even get my drugs when they discharged me had to drive myself back to hospital following morning to collect them

So pleased for you Delamere and fingers crossed everything goes well. As for your discharge letter, I find it disgusting that so many mistakes are made and feel that you should do as MoyB suggests and write a letter of complaint cc your consultant in, otherwise things will never change. At work if I made mistakes the boss would pull me in and made no bones this would not be tolerated, it kept us on our toes. Yes everybody makes mistakes but not constantly and more so if it involves your health. Thinking of you x

Finally, you have made it through a difficult time but won in the end. Really hope the colomycin keeps you out of hospital and a free woman😀 Take care xxx

😊

Delamere profile image
Delamere in reply to HollyBoyd

Thankyou for your support Hollywood x

Hi Delamere I’ve sent you a message regarding colymicin.

Gentamycin . Spell check is to blame for lots of errors I am sure . Gentamycin on this computer has just been transposed to Fentanyl !I am glad you got your treatment sorted and hope the trial works out for you. (And assays turned I to massaged )

Please tell me why gentamycin and is that used a lot. ? When I was working we assayed the levels of all patients on gentamycin regularly as it can cause deafness when too high . That was over 20 years ago and my knowledge is very often out of date . How has that been improved?

.

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