Confused

Hi everyone,

This is my first post here. I survived a two month coma & 3month stay in ICU. Influenza A, Strep A, Double pneumonia, severe ARDS, MOF ( including my heart, kidneys & lungs). I was intubated, on dialysis for 70 days. Remained on assisted breathing and trachy for a further 20 days. My pressing battle was now combating acute muscle waste. I was now 60kg and looked like a 'drought victim' biafranesk.

About 2 weeks after waking up, one of the nurses casually dropped into the conversation " and what are they going to do about his leukaemia?"

The look on my poor wife's face. My family & friends had decided that I had enough on my plate at present, they had carefully expunged any reference to it, from their conversations & patient diary.

Now, 10 months post hospital, I am still fiercely trying to regain the priveledges of 'normal' life. I'm prone to infection and exhausted some of the time. I don't smoke, nor do I happen to drink. I eat well and if not a gym goer, each day, I take the dogs for a good hour hike. I'm 52 with a family that includes some children at school age & grand children.

My question is how best to keep CLL in check.

For instance, work ( which for me is essential) - every time I come to do a job - I come down with an respiratory illness ( literally the day before). Does stress bring on symptoms?

I was lead to believe that CLL was nothing to worry about, an old man's disease. The further time goes on , I realise I have to be proactive with regards to my health.

Any tips would be most welcome.

13 Replies

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  • Hi Sepsur

    Sorry that you have been diagnosed with CLL, but happy that you have found our community.

    You,ve certainly been through the 'wringer' a few times.

    The functional impairment of CLL means that you have a compromised immune system.

    Infections - You may be more likely to develop infections and these may be more severe and last longer. This happens because your body is less able to defend itself against bacteria or viruses. You have to 'manage' that compromised system.

    So, as my Consultant Watches and Waits re: the blood counts ... My GP and I deal with any symptoms of my CLL .. you are right, you have to be proactive with regards to your health.

    Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.

    Some basic tips from me would be ... Avoid public places if your immune system is heavily compromised. .... Avoid being around people who are ill.

    Be aware of hygene, be especially aware of what other people have handled, hand rails, door handles etc etc due to the risks of infection.

    CLL patients who develop a cough, sore throat, or any other sign of infection, should consult their doctor promptly.

    I carry hand gels/wipes when out and about, and wear a personal ioniser ...

    I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... so my CLL experience has been about developing a relationship, with my GP,s in dealing with any symptoms that may arise.

    ygtgo

  • Thank you ygtgo - very good ideas. I'm careful going into hospital vis a vis infections from others & I avoid swimming baths etc. I think I'll start carrying around gel and look into an ioniser( something I've never heard of).

  • Oh and one of the worse things to handle is filthy lucre ...

    So to be on the safe side ... if you have any suspicious notes just send them to me and I'll take care of them for you.

    No coins smaller than half sovereigns please !

    ygtgo

  • 🤣🤣🤣

  • Hello all, I have been in remission for over a year. However, I have a bad cold and cough and feel that if I have any more antibiotics will cause more problems. Yesterday I had a temp of 35.5 I was freezing all day and dressed for Winter, it was warm outside, but I just couldn't get warm. My G.P. wouldn't understand. Seeing other posts about body temp, I found some quite helpful, but these touched on extreme heat problems, I have this also.

  • Oh gracious Sepsur, you've been to Hell and back in a handcart for sure! :-(

    I'm glad to hear you've survived that terrible ordeal and are back to 'normal' life albeit one with a compromised immune system. Ygtgo has given excellent tips but I can't get a sense from your post how advanced or at what stage your CLL is. Has a haematologist given you any advice on your CLL 'profile'? Your serious propensity to severe infection is suggestive of more advanced immunocompromisation but it's not always a given. In your situation I'd want to know how my immmunoglobulins (antibodies) are fairing. It's possible to have infusions of IVIG if they are at seriously low levels. It can only compensate for the IgG but may help if there's a high risk of infection, particularly pneumonia. It can take up to a full year to fully recover from a bad bout of pneumonia yet alone what you went through.

    Are you aware of your Absolute Lymphocyte Counts, neutrophil levels etc? These levels become more important as we try to develop strategies to protect ourselves living everyday life.

    Wishing you well and sincerely hoping you never have to suffer such a dreadful health emergency again.

    Newdawn

  • Hi Sepsur,

    So sorry to hear about all the trauma and illness you have had to cope with recently and then on top of that to be diagnosed with CLL. Although you would probably prefer not to be here on this forum may I extend a heartfelt welcome to you. The folk here are very knowledgeable and always willing to contribute to help others with their questions and concerns. You might also be interested in some posts that been written especially for newly diagnosed folk like yourself. The posts consist of lists of things we can do to help ourselves deal with our CLL. The contents of these posts are easy to understand and digest. They can be found by clicking on the following links below:

    Coping Strategies - Part 1 Improving our CLL journey

    healthunlocked.com/cllsuppo...

    Coping Strategies - Part 2 Living with CLL

    healthunlocked.com/cllsuppo...

    Coping Strategies - Part 3 Keeping our spirits up

    healthunlocked.com/cllsuppo...

    Take care and best wishes for the future.

    Kevin - Essex, UK

  • Welcome Sepsur to our band of CLL brothers and sisters, friends and families.

    There are myths that run deep in medicine, like CLL is a 'good cancer' and it is an old man's disease. There are others, but I won't go into them.

    CLL is a rare type of Non-Hodgkin's lymphoma, it isn't a true leukaemia, but because it appears in the blood, it is called a leukemia. It is best termed a blood cancer or if you wish a cancer of the immune system... both are true. SLL is CLL's cousin and it is more a true lymphoma, appearing in the nodes, spleen and bone marrow, but rarely in the blood.

    Coming to this group, is a great first step on your CLL journey, feel free to ask questions, we have all been where you are today.

    Here is a link to an excellent Patient Guide, some of it only applies in the U.S. who tend to have more advanced treatments and testing, which may not apply to you, however the CLL/SLL info is current and accurate.

    nccn.org/patients/guideline...

    Keep in touch...its a long and winding road...

    ~chris

  • Many thanks to all of you for your responses Foggymind ygtgo Newdawn Cllcanada - I will read all those links and digest.

    In fairness, I don't know what point of the spectrum I am at. My platelets and haemoglobin content has increased slightly since my last test but so have the CLL cells too.

    To clarify - what muddies the water - ha ha -,is that in ICU I contracted CMV,MSSA, VRE & glandular fever. All of which take on much more significance when you are as ill as I was. No-one could decide if it were the chicken or the egg. 'They' felt that my CLL was present by coincidence- my feeling is that the CLL is the vehicle through which my immune system has been so compromised. Thank you for the links, as I said - now I feel I came orchestrate my own fight back.

    Best wishes to you all

  • Hi Sepsur

    You are in the right community to get answers to your questions, as you can see, having already received information to help you plough ahead with coping with this disease. I think maybe stress does make one feel worse but the main things you can do to help yourself is avoid infections and Kevin has pointed you to posts that will help with that, and having a specialist in CLL. Mainly our progression is measured by our lymphocyte count (those rogue cells) known here as ALC. absolute lymphocyte count.

    Sure you will get lots of information to help you move ahead. You have had an extremely rough time, hope the future is much brighter for you.

    Best wishes

    Bubnjay1

  • Thanks @Bubnjay1

  • Sepsis. Right up front, let me tell you this , you're an absolute "bad ass...you da man. I totally agree with ya about the "old man"comment. I'm still tired, achey, blah,blah blah all the darn time. Tell me something I don't know.

    A couple of things I do. I'm a Stephen Minister. I don't visit sick people anymore. I avoid hospital visits and people sneezing and coughing.

    1) When feeling sinus pressure and even when I don't. I use a nasal irrigator with saline, one that plugs in the wall. Have not had the flu or sinus infection in a few years. It's grotesque to use, but hey, it works!!!

    2) Everybody gonna give you books to read, I'm no exception. The Cancer Killers, authors are Dr. Charles Majors, Dr. Ben Lerner and Sayer Ji.

    The other is What the Bible says about Healthy Living, author Rex Russell M.D. I down to stage 0 now as a result of following info from above when my first Oncologist wanted to hit me with chemo. Its working for me

    I actually scheduling an appointment for blood work and body scan as I write this. Feeling confident I'm continuing to kick leukemias ass.

    Hope I've been a little bit of help, both thumbs up in your direction. Henry.

  • Thanks mombasa333 - I feel where you're coming from.

    I try to avoid snotty arsed kids & people 🤣🤣

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