love life ..

[mrsmaxie]

hi I was diagnosed in 1998 after several bad chest infections.... which have never gone away. it was a shock as I was only 43 but my doctor recommended W and W ..yearly checks and blood counts. I'm now 62 and just stay in touch with my doctor and no longer go to the hospital for bloods. my local doctors clinic (practice nurse)..virtually ignore the facts when I go 3 - 4 times a year still with chest infections and I have to BEG for antibiotics to clear it up. love to travel ...love having great job and amazing family...children grandchildren and hubbie who loves to travel too x I'm blessed and just hope things don't change for the worse...thanks and keep Sharing x. footnote..sorry for typo it was 1998 and not 1988 as someone kindly pointed out 😱😱😱😱 x

[specsx4]

Wow. Just shows that for some people watch and wait is so long. Well done.

[annmcgowan]

Hi you are doing very well and sounds like your consultants feel

You are one of the lucky ones who may never need treatment.

However you should not have to be begging for antibiotics if you need them.

If I were you I would have a word with your consultant at the hospital you attended in the past and get them to write to your GP on your behalf.

It is great that you are now just with your GP but they do need to take the fact you still have CLL into account when you have infection.

I have asthma and have an emergency pack of amoxicillin an antibiotic at hand incase I feel I need it. This is common practice with asthma. Maybe this can be negotiated with you GP for your CLL.

I rarely use my antibiotics as most infections are viral and do not respond but feel safe knowing I can if I need to in an emergency. I put a sample of mucus in for testing then start my antibiotic if needed to prevent the antibiotic contaminating the results. If there is no bacterial infection only viral you can always stop the antibiotic. This way I am covered from the start from any bacterial infection turning nasty.

My GP and practice nurses who deal with my asthma have a limited knowledge of CLL. I tend to educate them myself from what I have learned over the years mainly from this site; they are willing to listen and respond where necessary.

If your consultant has handed you over to them and discharged you then it is only fair that they look into this for you if you are struggling to be heard for psychological reasons as well as for your physical well-being.

The mind and the body are not separate entities and although you are doing exceptionally well medically with your CLL you still know you have it therefore psychologically you are still challenged by this fact.?This is perfectly normal.

I hope you find this post helpful? Let us know how you get on.

Kind regards

Ann

[MsLockYourPosts Passed Volunteer in reply to annmcgowan]

Some patient can go years without treatment specifically for the CLL but require treatment for their compromised immune system (IVIG). Ask to have your IgG level tested. If it is very low you might benefit from IVIG treatments, but you would probably have to go back to your hematologist for this, as I doubt that your GP would be up to date on it.

[Corkyrissa]

God Bless you. So happy to hear you are still in W&W. My oncologist does not like to give me antibiotics if I need them so I end up going to my PCP if I have a cold. I'm asthmatic and so is my PCP so he knows how important it is to treat when needed. Wishing you many more years of no treatment enjoy your life and family.

[Hidden]

MrsMaxie,

Can you please the secret of your aging formula for the rest of us...if you were Dx in 1988 at 45....and now are only 62 years old..somehow you managed to age about 14 years slower than the rest of us....

It is sort of selfish for you to keep this fantastic discovery a secret....does it involve the Fountain Of Youth? Holy Grail? Obscure occult rituals? Or more science based...somehow you increased your personal gravity a trillion times thus slowing the flow of your proper time relative to our proper times....

Either way, it is fascinating and I hope you will share your secret.

Scott

Aging too fast...and breaking down even faster....

[mrsmaxie in reply to Hidden]

thank you for pointing out obviously typo ... I've edited it as it should have been 1998 !!! ..👏👏👏👏

[mrsjsmith in reply to Hidden]

No it’s the painting in the attic like Dorian Grey ?

Colette x

[SeymourB in reply to Hidden]

Scott -

Some of us are old for our age. I think I have advanced, adult-onset aging. I look 50, feel 80, but it's 63 years since first took a breath.

=seymour=

Space-time curves around my B-cells.