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•17 Replies

Well seen my lung doctor 👩‍⚕️ and the decided the going to stop ✋ my maintenance antibiotic’s as they don’t believe you can suffer as many infections as I have.

I.e new infection every 3 to 4 weeks.

Well I told them septic events can happen quicker than I can make appointments to see them.

But what I said fell on def earsđź‘‚

So told them straight the going to end up killing me trashing my lungs further.

She tried to say I had touch of emphysema in upper right lung.

Clearly she must forgot I get all X-ray results ct scan results AND I wish I did have touch of emphysema.

Lots was said AND the long and short is the stoping them to see what am culturing AS when taking antibiotics’s the don’t know why am getting so many infections.

As to lungs bronchitiasis and emphysema is not touch of emphysema AlSO calcerfifed granuloma is not touch of emphysema.

Guess she got my notes đź“ť mixed up with someone healthy.

Then we talked about my antibodes MAINLY IGM antibodies being low.

I said I was reading articles on IGM antibodies and 10 is usaly base line for treating IGM defecancy.

But doctors can’t agree SO I said my IGM antibodies are at 7 out of 22 NOW my lung clinic starts antibody treatment injections AT 6.

So I said if am 1 point away from injections WHY would you think am ok AS that tells me am ill and 1 point away from treatment.

Like really what is this doctor thinking ANYWAY they said they was going to get my GP to manage my condition proper.

Guess will be a first

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17 Replies
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casper99 profile image
casper99

Nothing goes right for you Daz. Can't you try and see a different doctor? Young ones are always more enthusiastic about actually helping patients. xx

in reply to casper99

Hi Casper Defo something going on AND am not happy.

Can’t afford to be ill at this time as my dad needs me more now than ever.

Even stoped dad’s antibiotics AM not happy about.

Just thought they might be trying to take fight out of me.

Have seen few doctors and the seem to be singing from same sheet.

I surspect the after discharging me into gp’s care.

Like few of the horror stories we read about on here.

sassy59 profile image
sassy59

I always hope you will get the help and treatment you need but it’s a real struggle JAS. Good luck to you and good wishes to your dad. Xxxx

in reply to sassy59

Hi sassy cheers thanks

Caspiana profile image
Caspiana

I'm sorry it's so difficult Hidden . And such a worrying time too. I hope your dad is comfortable. Sending warm wishes to you both.

Cas xx 🌷

in reply to Caspiana

Hi Cass defo agree is worrying times.

Dad’s ok really eating day n night guess that’s why blood sugers up the wall.

Caspiana profile image
Caspiana in reply to

Is he diabetic?

in reply to Caspiana

Yer is due to go on insulin SO can have pet scan

Foxy79 profile image
Foxy79

Hello one I'm foxy79

I hope you best of luck with upcoming events and hope everything goes well with you as mainly you need your family and you can do fight against anything and anyone take care 🙏

in reply to Foxy79

Hi Foxy cheers n thanks

katieoxo60 profile image
katieoxo60

Morning Jeff, understand your frustration makes you want to swear. Never ceases to amaze me the expressions some doctors use. How can you have a touch of Emphysema???? My mum I recall had a bit of breast cancer on one doctors visit, I just thought she heard him wrong, when I spoke to him he told me on the phone that it was all down to old age, no serious illness. You have a lot of ailments Jeff not least the caring for your father who is ill, this could lower your immune system anyway and make you prone to more infection and illness. Take care of yourself and maybe you need steriods not antibiotics or are you taking them as well. Sometimes the symptoms of infection can be allergy reaction which won't improve with antibiotics, even some drugs can cause infection and inflammation. At the end of the day we are at the doctors & NHS mercy and there is only so much they can do in the current economic crises, those with chronic ongoing illness tend to miss out on possible help due to low resources. Take care, hope you feel a little better for stating your latest feelings about your care.

in reply to katieoxo60

Hi Katie never as a true word been spoken.

Like I said before am lucky really as forget really THINK it’s good job really.

Well till something new pops up.

Maximonkey profile image
Maximonkey

Hi Jeff, are you seeing the main lung consultant at the hospital? The reason I ask is when I was going through a similar experience to the one you describe I went to clinic and saw a very young doctor who more or less told me they could do nothing more for me as all the tests were negative (I was experiencing pneumonia every two weeks at the time). He then said go home and take care of yourself. I was shocked and very scared that I was just going to carry on being so ill and that I would die soon (I was not being hysterical, I really was very ill). I saw my GP who was very angry and he told me to go home and phone my consultant's secretary and ask to see the senior consultant again. I did this and within 6 weeks I was back at the senior consultant's clinic and he agreed we needed to run all the tests again. 1 month later I had the diagnosis, Bronch and asthma,I have not looked back since. Don't leave it Jeff, ring the consultant's secretary and ask to be referred back to the senior consultant. Keep a daily diary of how you feel and what treatment you are receiving take it to the hospital and ask him/her to help you. The other thing I am wondering about, is your consultant a Bronch, COPD etc specialist many are not. If he is not specialising in your condition ask your GP to help you find one in your area who is a specialist. The right doctor is crucial. Good luck and take care of yourself. Maximonkey

in reply to Maximonkey

Hi Thanks for reply sharing experience YES I have to seen want to be consultants.

And are just as you describe THINK events are going to put pay to there idea tricks.

Maximonkey profile image
Maximonkey in reply to

Hi Jeff, glad to help. Hope you get this sorted out asap. Take care. Maximonkey

SquirrelsHolt profile image
SquirrelsHolt

Oh dear Hidden it is never ending isn't it. As if you've not got enough to deal and worry about. I'm hoping that your perseverance will eventually give you some "solid" answers,but the cynic in me thinks that sometimes we get pushed from pillar to post. Its just lucky that you are still strong enough to fight your corner, thank goodness! Again,much respect for all you do for your Dad- you are a real trooper!!

in reply to SquirrelsHolt

Hi cheers thanks for bost BUT think my lung dieases or touch of emphysema is catching up with me.

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