Should I be telling the consultant about the one infection after another that I'm getting? How much do I put up with?

Hello, I'm 27 & have been diagnosed with CLL for almost a year now. Since Christmas I have spent more time being unwell with cold symptoms or chest infections than I have been well. I've currently got my third chest infection which is worse than the previous two with flu like symptoms such as shaking and feeling so cold. I know people with CLL are more prone to infection but how much am I meant to put up with? Should I be telling my consultant? I am due back to work in March as a community staff nurse after being off for over a year due to needing major bowel surgery. I just can't see how I can hold down a job when I'm constantly getting ill myself let alone caring for other sick people as a nurse!??

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  • Hi Fishface, sorry to hear you're getting recurring infections particularly after you've coped with more than enough having the bowel surgery.

    I think you know the answer to your question already....yes of course you must tell your Consultant. Recurring infections and an increasing difficulty in fighting them off is an important indicator in our condition as you'll know as a community nurse. Are you due a consult soon? Perhaps you need to bring an appointment forward for advice particularly as you're due back at work. Your Occupational Health Dept. will want assurances that you're fit for work before you return anyway I would imagine.

    I'm due to see the Consultant week after next and I confess there's sometimes a temptation to paint a brighter picture almost in a denial attempt and because I don't want him to even start thinking about treatment for a very long time. Fortunately I'm doing ok at the moment (I've been diagnosed 9 months). But we only fool ourselves with that strategy and make it harder for medics to plot progress and progression.

    I think your greatest concern is continuing to cope in your job and I totally understand that. You need to be discussing this with the medics overseeing you because I'm sure you're aware that sickness monitoring procedures in the health and social care services are pretty vigorous (I used to have to implement them as part of my role unfortunately). Are you afraid that you may be forced to give up your role if you're honest about how you feel? Remember as a person eligible for registration as disabled under the DDAct, you have rights to 'reasonable adjustments' to help you continue (in the UK).

    I understand that you have natural concerns about visiting the sick when you could be a mutal risk to each other.

    Time to have honest conversations I think Fishface about how you're feeling. I wish you well.

    Newdawn x

  • Thank you NewDawn for your reply. I have just spoken to my lymphoma nurse specialist who has arranged for me to be seen in clinic week after next. She too was very supportive and explained that whether there is cause for concern or not the fact that I'm getting anxious about everything is a good enough reason to be seen sooner in clinic and discuss everything and check my bloods just incase. I feel a lot happier now and will use that appointment to also discuss whether returning to my current role is realistic or sensible. Like you said I am scared of having to give up my community nursing role because I worked so hard to get that job but I just don't know if it's fair on my patients or me to continue. I had seen Occupational health before Xmas and was given the all clear to return as I was fit and well at that point but I think I may need to inform my manager who is expecting me back in march that I need to see occupational health again.

    Thanks for your support, your right I think I knew the answers I just needed that bit if encouragement to act upon it.

  • Fishface - Be sure to ask to have your Ig levels (IgA, IgG, and IgM) tested.If your IgG is low it is possible to boost it with IVIG ( gamma globulin). Mine was very low when I was diagnosed, and I had been dealing with constant infections. Once I got my IgG level back into a better range (I still get infusions 10 years later) I was able to return to teaching 8 and 9 year olds, who are very generous with their germs. My only infections over the last 10 years have been allergy related sinus issues, which now resolve quickly, and occasional UTIs.

    I am assuming that you have seen a doctor about the chest infections. If you haven't, that's something you should do now! Let us know how you are doing.

  • Thanks pkenn, I will do. No I havent seen my gp about the chest infections (I know, it's true nurses are the worst for not taking their own advice!) purely because I'm trying to prevent taking antibiotics until I really need to, normally the infections clear up in a week to 10 days so I've just been using home remedies.

    If I could just stop getting these infections life would be so much more manageable, I am due to get married in Mexico in December this year and am so worried that I'm either going to have to have some sort of treatment before, not be well enough to go or even if I am well I'm worried I will pick up germs on the plane and be ill whilst there! So im certainly going to explore my lg levels thank you!

  • Hi pkenn, Just to say I was very interested to read that you've had 'allergy related sinus issues' for many years. I've had - and continue to have - allergic rhinitis for ten years or so. I wonder now if this is related to CLL. I wasn't diagnosed with CLL, Stage A, until August 2012.

    Gartshore

  • OK. From one procrastinator to another - get in to see your doctor ASAP. This is your mother speaking- LOL! It may be that you have a lingering infection that has just never really cleared up. I understand not overdoing antibiotics, but, in this case, it seems like they might be a good idea. It's easy to convince ourselves to put off seeing a doctor because we don't want to hear what they will probably tell us. Usually when I've done that, I end up kicking myself for not going in sooner, because what I was imagining was worse than my reality.

    Congratulations on your upcoming wedding.

  • As one nurse to another - what advise would you give your patient? We all think we are invinsable - knowledge is power. As a nurse to my patient - see your consultant and then make educated decisions. Sounds like you will be back helping others as soon as you get yourself stronger. Nursing is a very physical thing and we all have the fear of loosing our ability to function, however, it is also a profession that offers so many choices depending on our strengths.

    Wish you the best.

  • Hi supposed the worse does happen and you cannot work full time. Life isn't over. Try to claim the right benefits or work part time but look after your health. Best wishes.

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