I was diagnosed with HC MBL (CLL Phenotype) at the age of 53. In the past three years my lymphocytes count has gone from 5300 to 7100 (fluctuating) and my neutrophils have dropped from 4.3 to 1.8.
I have been completely symptom free for the first two and a half years but seem to get repeated viral infections since neutrophils have dropped below 2 although I understand most problems should start when the neutrophils are below 1.5(or even 1).
I used to work in a primary school for children with severe disabilities. I left the school to protect myself and the children, so that we would not pass viral infections to each other. Miss the feeling of community terribly.
Applied to volunteer for a rescue centre for cats and dogs but HR of that charity thought that the exposure to possible illnesses from the animals was too much of a risk for someone with my condition.
Since I am neither working nor volunteering I feel a lack of purpose in my life and I am only 56 years old.
I have worked with children since I was 18 and don’t have many other skills. I would struggle with office work and it will take a lot of adapting to work on my own rather than part of a team.
Has anyone else experienced isolation from work and/or social activities since your diagnosis? What is the best way to cope when you are still relatively young?
Thank you for your time and best wishes,
CM
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Blueslipper
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Hi, My neuts routinely are between 1.6 and 2 , have been since my my O+I treatment ended ( a stage 4 diagnosis) in Nov 2020. I am been in remission for 2 years , I am on Acalabeutinib plus daily antivirals, I have had no infections in the last 18 months. I have monthly bloods and keep GCSF in my fridge at home to self administer if neuts drop below 1.5, also IgG checked every couple of months and if that drops below normal for 1 month I have ivig infusions. I am 59 , was diagnosed stage 4 at 56. I live a full pre CLL and pre Covid lifestyle and a full time stay at home dad to my 6 and 4 Yr olds.
Similar - life is too short - my Neuts are 1.0-1.5 and were maintained with weekly G-CSF shots. Medication all stopped now so hopefully things will improve. However, I have continued to live life as normal and just being careful - I avoid crowded spaces, sick people, closed rooms - if it comes to it I'll sit by an open window or even wear a mask.
I am glad the medications are working and you have a normal life, although you avoid crowded spaces, sick people and closed rooms.
Being a teacher means being in crowded spaces and closed rooms, with the children often being sick. It was my normal life, I loved it and I miss it. I am not apologising for being sad but I am grateful to all the people on this forum who have helped me keeping things into perspective, given excellent suggestions and helpful information about medications which could help keeping down the constant viral infections I am having.
Not sure whether you have found any solutions yet, Blueslipper. Could you work with children who are also immunocompromised? This would require your and their being well masked, of course. We have a nephew who lost his son to kidney cancer, and there were so many opportunities offered to the children who were in the hospital. Just a thought. I also have an education background, moved into librarianship, and then retired. Best wishes. It is hard for one, especially as you are younger.
Sorry to hear you had a stage 4 diagnosis at 56, it is very encouraging and helpful to see how well you are managing with medications, having a normal life and looking after your children. I hope to have your strength whatever my next blood tests in September will show and feel much reassured of medical help available.
Thank you so much for taking the time to answer my post
I have never been a tech person to the point I don’t even own a computer but simply a phone and a very old ipad.
Nevertheless I will need to make the effort because it certainly is the way forward for me to keep in contact with people and find new interests/jobs. It will open up a lot of new venues and keep my mind busy in a positive direction.
I am having my next blood tests on 18th September and I am dreading them because the past months have been an endless succession of viral infections and severe skin rashes. Anyway, it is the way it is and I need to shake off my sadness and learn to enjoy life even if it is different from the one I thought I would have.
Will definitely look into buying a computer so that I can have proper Zoom meetings/classes (rather than starring into my tiny phone screen-my ipad being too old) and see what I can find to still connect with others and feel useful.
Blueslipper,Your intention to connect with and help others, decision to move forward and enter the tech world and your persistence in the face of adverse physical challenge is remarkable, brave and not least of all kind and gracious.
As you get further into that tech world find someone who can guide you when you get into a "jam". My son has done that for me but I am careful not to steal too much time. And helpful friends have offered encouragement and tips. Have a good time on your adventure but remember how effective and fulfilling old, more personal tech can be.
On that last count, pursue and engage highly regarded physicians and other specialists to help you plan for expected and to avoid unexpected maladies that afflict others like us. In that last regard you are in VERY good company here on this website. Another good move would be to look into and possibly join the CLL Society. cllsociety.org
As others have said, your skills with children can be easily transferred. The huge challenge for us with CLL is that young children, more than others, carry infections that transmit to us.
I used to work in Old Age services and there are many elderly people desperately in need of home visiting and on the whole, you will have far less of a chance picking up an infection from an elderly person. While there is much that you can do on-line or on the telephone of course, it sounds like you need contact with other people. You don't say if you live alone or not?
I think that Age Concern might be an agency to ask about volunteering possibilities. Elderly person's homes also often need volunteers, as they rarely can give enough attention to those who are there.
I think that your work with children with disabilities might also tra. nsfer to people with dementia, although perhaps the children with whom you worked only had physical disabilities. I have a friend who volunteers with the Alzheimer's Society to do 'Companion Calls' with those who have dementia. She was given training and also gets supervision. But these are phone call 'visit' only.
I am married and have two children but for the past two years my husband has been often away for work and both children have left home: the eldest is working in another town and the youngest has gone to university, so I guess ‘empty nest syndrome’ is playing a big role on my emotions together with my health deterioration.
I have good friends, who I am also seeing less because of my constant viral/bacterial infections. Only my husband and my closest three friends know about my diagnosis but I never really talk about it, hence the vital importance of such forums where we can open up, share and support one another.
Following the many encouraging and positive replies I have received on this forum, I guess I have to shake myself a bit up and I will follow the suggestions given. I will take up the challenge to develop my tech skills and see what there is online which I would enjoy either as work or leisure, although it is not exactly the ‘companionship environment’ I was used t.
About approaching befriending/visiting Charities, I am likely to wait until my next hospital appointment on 18th September so that I know where I stand immunity wise.
I would be very interested in knowing if someone with MBL/CLL is currently volunteering in a face to face befriending capacity.
Also, it would be interesting to know if other people with MBL/CLL have instead struggled to be accepted as volunteers by charities because of their condition.
Thanks again for the really supportive and helpful reply.
I think you are trapped in your house and lonely. How much have you discussed your infections and blood results with a haematoligist? I think you need advice about your immunity. There may be things to help, Such as antivirals or ivig.There may be a specialist nurse at the hospital. We think if we visit our GP that the hospital will know. We have to be assertive and discuss our health and also the affect it is having.
You shouldnt be scared to go out. Think it through and write down the way you think you will catch a virus. Start by sitting outside where there will be people and fresh air. If you are a distance outside you will avoid germs. Use hand gel and wash your hands.
If you have a coffee shop that is spacious, find a table and take something to read. I always have a mask if I feel I am too close.
Have you a friend close by that you can meet or ask someone who is caring to go for a cuppa. Tell them you need to keep a distance.
Have you had your vaccinations?
Contact Macmillan. They have people you can talk to.
You cant work if you are frightened and you need to leave the house. Its a sad life.
Isolation sucks. Not sure there is a total solution. a few ideas are phone calls, long, with friends, family. outdoor activities, much reduced risks there, especially with distancing.
Thank you Lenny for telling it as it is, isolation does suck.
All the replies and support on this platform mean a lot and have truly helped.
Hope we get the strength to grab the opportunities we have with courage and enthusiasm. It’s going to be a bumpy ride but I’m glad I got my head around to start it rather than remaining isolated and, let’s admit to it, depressed.
My yellow labs force me out daily. I always meet people on our walks. Fresh air, clouds, birds, flowers, etc. Such beauty to start my days. They are my best friends. Do you have a dog?
I volunteer at a thrift store to support a cat rescue. I receive the donations that come to the store. We sort, clean, price and get things ready to go out to the floor to be sold. I also love to research items for pricing. We brainstorm ways to advertise and to promote. Maybe there is a thrift store that needs you?
When my kids were small, I thoroughly enjoyed teaching Sunday school. My favorite was kindergarten. Loved their innocence. They looked forward to coming to class because I made it exciting. Maybe that would be something you would enjoy.
Oh the choices you have. It’s exciting. I can’t wait to hear about the things you are doing. Do you sew? I belong to a small group that makes quilts for families in need. Thanks for sharing. Sally
What a breeze of positivity you are! Thank you so much for all your suggestions aND encouragement.
I don’t have dogs because I am not allowed to keep them in the block of flats where we live. It would be fantastic company if I could have one as I love walking and being outdoors. We were actually talking about it with my husband during the weekend. My husband is actively looking for a new job that would allow us to spend more time together (currently he is often away for work) and it would be very exiting to have a new place where we could have a dog and be together every day.
I am part of my local Ramblers group (UK hiking group) and love to go when I am well. Fully share your love for fresh air and beautiful scenery, not to mention a group of like minded people.
Thank you for making me concentrate on the positive. I was really low yesterday evening when I have posted on this forum (first time I have ever posted on a forum) and I am amazed by how helpful this has been.
I will look into volunteering ‘behind the scenes’ rather than in contact with people, although I love being with people and ‘little people’ in particular!!
Anyway, I am grateful for all that life has given me so far and I guess I should take this as an opportunity for something new which I might end up loving just as much as my previous work. Feeling much better with this new outlook on my life rather than the commiserating one I have had for a while. Obviously, it will be ups and downs but it is good not to let MBL/CLL completely define our life and who we are.
Give a cuddle to your dogs from me and spare a thought for me next time the scenery takes your breath away.
I was 52 when diagnosed with CLL/SLL. I had always been so active and with a can do mentality. I felt like the rug was pulled out from under me. There are so many choices for treatment in todays world. Chemotherapy was all that was available then. I’m unmutated so not the perfect choice, but it worked long enough for something better to come along. I’m now 71 and on Ibrutinib, my third line of treatment. I make every day count because I was so close to losing my life. Seize the day. Sally
Thank you for sharing your experience. It must have been so difficult when you were first diagnosed and scared of losing your life.
I certainly admire your courage and I am glad you a had a good 19 years and many more to come thanks to the treatments.
It’s true there is a better understanding of the condition now and, for example, chemotherapy is now avoided at initial stages as it did more harm than good by lowering the immunity system even further.
I will keep positive and trust that so many effective treatments are now available to prolong life and maintain good life quality.
I am getting my head around my diagnosis and hope something can be done to reduce the repeated infections I had in the past six/seven months. I will be seen by the haematologist on 18th September and keep my fingers crossed.
As suggested above, there are two main routes to consider. (I'm in my 50s, in treatment, similar isolation issues)
1) Outdoors is your friend. There are very few outdoor situations I feel I need to avoid, mostly concerts where everyone is packed in and singing. So what activities are outdoors where you can find a sense of community? Fitness classes, cycling groups, charities that do outdoor work, some aspects of religious life.
2) Online makes this a lot easier. Online won't replace face to face contact but it can reduce isolation significantly, and learning the tech gives you something to do that is intellectually stimulating. My 80s MIL and 90s Grandma can do it, so can you. It also opens up new roles where you can use tech to help children and your skills can come into play. I'd give it a whirl. Do have a source of help available for getting stuck, as most corporate-provided tech support is not very good.
Another fantastic reply from someone who’s walked the walk (literally)
Thank you for pointing me in the right direction: definitely my love for the outdoors has to become a priority. I am likely to enjoy this more than the tech challenge…but I am open to being surprised !!
Thank you for sharing that solitude can be a problem, it is real and can drag you down which makes it so important to receive advice and encouragement from someone who is going through the same experience.
I am not going to start a tech competition with your 90s grandma but will keep you posted on my progress.
Could you walk shelter dogs? That would be WONDERFUL! Hope that the months since these messages were written have given you some inspiration. Christmas this year was a real downer for me. The years of isolation have taken their toll. Better year ahead, hopefully, for everyone who is in our situation.
I'm sorry to hear that you are feeling so isolated, but having worked with children with severe disabilities, you will have some amazing skills. I also work in a primary school and see how skilled the support staff are, so don't underestimate how helpful you could be to a charity etc.
The National Council for Voluntary Organisations (NCVO) is a great place to start looking for volunteering opportunities:
There are lots of great suggestions here for things you can do to find a new purpose, stave off the isolation & feelings of loneliness it induces. Personally, just the empty nester syndrome & switching to working from home, which was great for the first 3 months, but then hit with such a shock to my system. From being the doer, the organizer, surrounded by people and constant demands on my time to lots of silence. It took time to adjust to my new situation & that was without any CLL complications!
I wondered, have your doctors investigated why your neutrophils are so low? Have they done any blood tests to rule out things like autoimmune issues, vitamin deficiency or low level infections that haven’t been completely cleared.
It’s understandable to believe that CLL is the cause of what is happening to our health, but it also means we miss out by not ruling out other potential causes that can be treated & resolved. My immune system was pulling weird stunts way before I was formally diagnosed. If it is the CLL, then there are treatments that can help support your immune system that help with your infection risk. This can open up a lot of activities, old or new that can still be done safely.
I live alone, widowed, no kids, but have a young Great Pyrenees dog. I joined a weekly walking group and am usually the only one masked. My dog and I do group dog walks 2x month, if I could find more I'd do those more often. I value the exercise which is a plus for CLL, fresh air and information exchanges with others. I stay safe with masks. Something to look into besides volunteering.
Another lady on this forum had encouraged me towards companionship with a dog and I have certainly listened to her!!
We are not allowed pets were we currently live but, through a website called ‘Borrow my Dog’, I got in contact with a lady who is no longer able to walk her dog for health reasons and is looking for a second borrower to walk her adorable cocker spaniel. We are meeting on Tuesday and I hope it will all work out.
I have been contacted by several dog owners and it is amazing how many people are looking for help with their pooches as they are back in the office after lockdown or have changes in their life (from poor health to birth of twins). Lots of opportunity to enjoy fresh air and games with a dog while helping out someone, so glad I looked into it.
Like you, I am part of a hiking group (the Ramblers) which meets once a week. Lovely varied group and an absolute life saver when indoors activities are better avoided. Nevertheless, it will be nice to have a dog for my daily walks as most of my friends are still working and not available during weekdays.
I am truly grateful for all the support and suggestions I have received on this forum and it is important for me to let people know that your answers have made a real difference in my attitude and I am far more positive and proactive in coming to terms with my diagnosis and looking at the ‘half full cup’.
Wishing you happy walks with your dog and support from your friends,
Wow! You sure acted fast! Some of my personal dog walks with only the two of us are in heavily forested remote trails. These are places I would never attempt to walk alone. My dog's senses work better than mine so I feel safer with her.
I hope the Borrow My Dog program proves to be as enjoyable as it sounds!
Blueslipper - With your background, you might consider going to school online to get a certification as a Behavorial Therapist (BT). I’m from the US so I don’t know the names that are used in the UK.
BTs can offer support via Zoom sessions or just by phone. My current therapist was my son’s former BT but when we moved far away, she became my therapist who consults with me by phone (we don’t even use Zoom!)
You don’t need much to use Zoom - just your average laptop and an Internet service (preferably a broadband option, not dial-up). Once you have a laptop, you can install Zoom and practice using it with your friends and family.
Good luck with your taking advantage with using online options to socialize.
It is amazing you are giving me support on the direction I was actually taking.
Since my last post, I have contacted SENSE (UK Charity for people with complex disabilities) and I will have a 45min Zoom interview tomorrow afternoon. This would be for a distance volunteering companionship role (either Zoom or phone). There are also Zoom teaching opportunities and I hope to discuss this as well.
Luckily my husband is not working tomorrow and I can borrow his laptop. I had only two Zoom calls before this one (on my phone) and it went reasonably well apart initial trouble with sound which I rapidly fixed. With my husband we have agreed that I should get my own laptop and I am looking into options for buying one.
I have also looked at online or College courses for Counselling. Really liked one at my local college which is reasonably priced and starts beginning of November. There is a Zoom interview to be admitted to the course and I will make contact once I am completely sure that it is what I want to do.
Other positive change I have made was to sign up to ‘Borrow my Dog’ where dog ‘parents’ look for someone to borrow their dog for weekly walks and/or looking after them when they are away on holiday. I can’t keep a dog for holidays as we live in a flat but had several responses for walking dogs during the week. The best match was with a lady who can no longer walk her dog due to health reasons and was looking for a second ‘borrower’ to walk her adorable cocker spaniel, we will meet on Tuesday and hopefully it will work out. I love walking and would like to have the companionship of a dog during my walks. It would make a huge difference to my life as I am missing having a pet since my old cat has passed away and we are not allowed pets where we currently live.
Thank you so much for your reply as it has truly helped me to get out of the doom and gloom attitude brought up by my latest chest infection (almost on the mend by now 🤞) and opened up my mind that there is plenty I can still enjoy and challenge myself.
Hope you are keeping well and enjoying some cycle rides as your name suggests. I will keep you posted about my progress.
That is wonderful! Families with members with disabilities need support and it’s so helpful when people with experience are there to help. I wish you the best going forward!
Hi, I was also diagnosed with HcMbl about 3 years ago. Numbers have been fluctuating. I think previous year lymphocytes were 3.7 . 2019 I started to get white blood cell increases, and lymph at around 5.8, down to 3.9 then up again, 5.2, and then 4.5 last year in March. After 3 months only went up to 5.9...this year started lymph at 5.7 in January now last check were at 6.5, doctor sent me to hematologist again, she's concerned about smudge cells present. Was never told not to work or anything, although I did get covid twice. I do also get sever skin rashes. Saw dermatologist few times as I've been told dermatitis. It gets really bad, they did a skin biopsy, which was negative.. but I am back at work now. ...the more I would cover myself isolate no social life, I still got covid and blue few times
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