CLL Support Association
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Hospital response to lack of monitoring after first FCR

Just had a call back from a (lady) doctor after my call to the (male) consultant and (male) trial nurse to complain about lack of monitoring by the hospital. Take what inference you will from this!

Unreserved apologies. A new team had taken over the discharge papers when I left hospital. I pointed out that my key worker, on checking the system also missed that I hadn’t been monitored and didn’t seem particularly concerned about the racing heart and breathlessness.

This doctor tells me that ANY breathlessness whereby I (or any of you) can't Walk more than a few feet without stopping + racing heart and we need to be checked out immediately. Even if it means going to A&E. So please note that everyone on FCR, if you aren’t already aware of it.

There is nothing I can really do to up my iron. Blood transfusion is only answer if HB drops below 75 again.

As I am sure most of you know, they advise no gardening that may involve contact with soil or breathing in soil particles, when neutrophils are low. (This contradicts key worker, who said I could garden in gloves). Also no fruit that isn’t peeled or canned.

So, hopefully they have upped their game and I now know a lot more about symptoms to be aware of and things to avoid. If the above is of use to anyone else, then doubly good.

I used to think that doctors, nurses and hospitals were all knowing and no need to question, but we need to be so aware of ensuring they do adhere to the correct procedures and also check your meds. While in hospital I had to remind nurses on two occasions when they forgot my injections and meds. I know they are busy, but mistakes can be life threatening, so we have to be on the ball too.

Thanks to everyone for your help, support and good wishes. It’s really helped me through a scary and horrible time.

18 Replies
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Wow! That is upsetting! Hopefully it goes smoothly next time for you!

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So sorry you had this happen to you.

We do tend to take for granted that those who are working in the medical field know what they need to know and act accordingly.

It makes me very angry to hear that misinformation so blatantly false was given so flippantly.

It makes me shudder to think what can happen if patients are unable to speak up.

Nice work on your part Mandy.

And thank you for thinking of others in your time of distress, knowing the situation is likely possible anywhere in any medical system.

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Best to Google “neutropenic diet” as many foods are risky. I was told that I could do nothing to help raise my HB but I included iron rich foods in my diet anyway.

You’ve had a big blip. Hopefully better luck next cycle.

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Thanks, I’ll do that. I’m a great believer in food healing. It can’t hurt.

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Yes, we really do have to be our own very advocates. I do feel for those folks who don’t have the capability to do so for themselves and / or no one to do it for them. It is really scary!

Hope you have better luck next time!

BeckyL USA

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Your comments above are EXACTLY correct..

Well said, and I totally agree

Dick

Andrew Schoor :- ' Knowledge is the best medicine of all '..........

D

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Retuximab can cause heart palpitations.

Quite well known. Sorry tri d to link but unable to on phone.

Check internet, if you haven't been given any paper information.

Wanted you to be aware Mandy.

Happened to me 2 times, ended up

In A n E both times for hours.

Sue

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On no, poor you Sue. Hope your heart is ok and not damaged ? Is your treatment finished now?

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Well done Mandy, it takes some courage to challenge the people looking after us. I'm pleased they offered an unreserved apology instead of making excuses or blaming you.

Onwards and upwards!

Take care

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No I'm ok. Just saying retuximab can cause heart palpitations. Wanted you to be aware.

Please be a strong advocate for yourself. Having to travel home afterwards must be hard.

Take care.

Sue

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HI! I am in a similar status as your self, albeit my Haematology team are excellent and good timely communications. I am allowed gardening but with thick gloves. So I pull a few weeds and care for my toms, while enjoying my wild life garden flourish. Dedicated mowing etc to a willing helper, and keep in doors while that is going on! My wbc's are low and it is scary.

Wishing you well and thanks for all the sharing.

J

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Thanks J. How many FCR have you had now?

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Cycle no. 1! 19 days ago and 86000. 2 days ago 0.9!

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Stay vigilant, stay strong! Prayers for you.

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Good for you, Mandy! And a great example to shy people like me who must learn to speak up without feeling guilty about it. I'm so sorry you had any extra or preventable worries at an already trying time. Thank you for passing on the information about heart palpitations. My doc also strongly suggested I skip the gardening this year (this is a sad one for me, but I know it's temporary). Just finished Round 2 of FCR. Wishing you all the best going forward. Prayers and love from Ohio. xo

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Like you, I am so sad about the gardening - and worried about the state it will be in by the end of the year. Good luck going forward, hope it good as well as possible.

All good wishes to you.

Mandy x

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CLL and being written off for five years taught me to be an aggressive patient. Before taking any meds in the hospital I learned to ask what each one was and the dose.

For gardening you might want to wear an N95 or N99 mask. Check to be sure the ones you use are NIOSH certified. Fungus in the soil can be a major issue.

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Thanks, invaluable advice.

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