Hi,
I don’t know where to start…
My 28 year old son had a NSTEMI heart attack last October which left him in heart failure. He seemed to cope with the lifestyle change and managed to go back to work in January. In March he went for routine bloods and it was noted that his white blood cell count was high. To cut a long story short he has diagnosed with Chronic lymphocytic leukaemia (CLL) last month officially but has now gone into kidney failure stage 3 to 4. He is having a kidney biopsy at the end of this month which will hopefully give some idea of any treatment he needs. He is deteriorating daily. I feel so helpless as a mom and nurse. Im heartbroken. I just feel like everyone is just watching and waiting but i dont know what for. My son said they might help him when hes on deaths door…
Hi @TINA2
This all sounds really horrible and scary for your son, I am so sorry
I have Chronic lymphocytic leukaemia (CLL) and was diagnosed last year , although I haven’t experienced any of the symptoms your son has and so I can’t offer any real advice. I am on watch and wait and so can understand the frustration and worry this brings especially when he is feeling so unwell
I find writing all my questions and worries down to ask at my appointment so I don’t forget really helpful
Also as @Erica says be pleasantly assertive to ask them to answer questions fully
Hopefully you have specialist nurses to contact and the blood cancer website has loads of useful information
Take care of yourselves and let us know how you get on
Sending love x
Hi @TINA2 I am so glad that you have found us, I really feel for you feeling so helpless as a mum and nurse.
From what you say the next stage is a kidney biopsy and the results of that will determine the way forward.
I do not know if your son has a partner, perhaps if not I wonder if he might like you to go with him to the appointment.
Now is his and perhaps your opportunity to write down all the questions that you would like answers to and to pin the consultants down on the way forward.
Perhaps he might request a multi disciplinary team meeting with him as he is suddenly under so many different medical specialisms.
Perhaps the hospitals PALS (Patient Advice and Liaison Service) might assist
It is a scary situation for you all and your son probably still feels your little boy.
I also have Chronic lymphocytic leukaemia (CLL) and I have had it for 20 yrs, and I am on active monitoring,
I also have chronic kidney disease, a leaking aortic heart valve, damaged lung, scoliosis and osteoporosis.
I am fitter now than I have ever been and I am a walker and a Pilates girl.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourselves, waiting and not having an idea of the way forward is a horrible time.
Please do keep posting and sending you lots of love xxx
Thankyo both DottieB and Erica for your kind words. I really don’t know why i didn’t think of an MDT meeting with my son included… thankyou.
Yes i am a nurse but where my son is concerned i don’t think like a nurse. Im his mum.
I have been to as many appointments as i can with him but we live 300 miles apart. I am going to be with him for the biopsy as he has to stay in hospital overnight due to his anticoagulants.
My son and his partner are separated so he lives alone which makes it more heart wrenching for me. I have asked him to move near me but he doesn’t want to as he has 2 small children. I cant financially afford to move to be near him as i only moved here a few months ago. So i travel the motorways as much as i can.
We have done the questions written down to ask but no one will give an answer they just evade answering. I have asked the oncology consultant to please look at my son as a whole person as i feel the specialists are not really talking to one another.
Anyway thankyou for listening to me. Its very much appreciated.
I wish you both long health and happiness.
I will let you know how the biopsy goes.
Oh @TINA2 it must be even worse for you living so far apart and knowing your son is on his own.
Yes, please do let us know how the biopsy goes.
Please do look after yourself as well as you are trying to look after your son. xxxx
Oh @TINA2
That must be so difficult! , I am a mum and work for the NHS as a mental health worker so should be practical and think in terms of MDT etc but with my children (grown up or not they are still our children aren’t they ) I lose all objectivity and practicality I would use at work , so I understand .
Being so far away is tough , sending you the biggest hug ,
Love and best wishes x
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Thankyou DottieB.
It is so difficult.
I keep saying to him if i could take his place i would! But his answer is he wouldn’t want me to.
Hes been for his pre op today for his kidney biopsy and the amazing thing was that he wasnt even on the appointment system. Luckily his oncologist last week showed him on his computer and told him to take a photo on his phone. Otherwise if he hadn’t had that photo he would not have been seen.
I think the healthcare system is broken 
no one talks to to the patient or to each other! Very sad.
Thankyou for the biggest hug… in need of them at the moment.
Hi CarolCW.
Thankyou for your kind words.
My son is already under a Nephrologist, hence hes having a kidney biopsy on the 31st of this month. The oncologist is thinking that it may be the Chronic lymphocytic leukaemia (CLL) that has infiltrated the kidneys and the Nephrologist is querying Nephrotic syndrome. His eGFR has dropped in April to 79, then in May it dropped to 50. It is still dropping but more slowly. Hes had more bloods taken today so will know if it has dropped again on Friday this week. His skin is now tinged yellow and his haematuria has been constant since April and getting worse. He has not been given any advice from Cardiology, oncology or nephrology on diet and what not to eat and drink, so thankyou for your advice i will pass it on to him. He has been put on a fluid restriction of 1500ml daily which he is finding difficult.
Wishing you all the best on your journey too CarolCW and thanking you for your response. It is much appreciated.
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Hi @TINA2 and @CaroleCW and everyone else I am just leaping in here to say perhaps do not make any changes to diet or anything else without checking it out with your medical teams first as they know you and your medical histories best and if you are on medication it might sway test results and the way medications might be changed or adjusted.
Sending you and your son loving vibes @TINA2 xx
Ohh my @TINA2
It makes me so annoyed when things like this happen, it’s really good the oncologist had said something or who knows how long things would take
I hope everything goes as well as it can for your son’s biopsy, please let us know how it goes
Sending another big hug ! , take care
Hello @TINA2,
I am so pleased you have found the Forum.
I’m sorry to read about your son, what a really rough time he’s had this year (an understatement I’m sure!) and equally a tough time for you too. It’s so difficult to know how to best advise people now, as we all know that the NHS is totally over-stretched, causing huge delays in getting things like biopsies and results, which in turn causes delays in starting treatments. The treatment is the key to helping him to feel better too.
As the other Forum members have suggested, calling his Haematology team to let them know he is deteriorating and becoming more poorly is a good idea, they ‘may’ be able to expedite his appointment, as they need the results for the Chronic lymphocytic leukaemia (CLL) medication. Let them know about things like his mobility, pain, food/drink intake, mental state etc, describe how this has changed since they last saw him, as it is the best way for them to realise he needs the assessments and treatment as soon as possible.
You could call the hospital switch board and ask if they have a number for the renal nursing team. They may be able to advise your son around diet and fluids, based on his blood counts and medications, and also his other medical history.
If he hasn’t already, is you son able to let both departments know that he is happy for them to speak with you. They can list you as Next of Kin on their system so you can relay information to your son if needed.
@CaroleCW Thank you for sharing your experiences, which may be similar but please could I ask that you don’t advise or recommend changes to things like fluid and diet or medications. In our terms and conditions of forum use it does say " * Please do not post anything that could be interpreted as medical advice, including but not limited to linking to unverified research studies. This forum is not a substitute for the advice of an individual’s healthcare team, and information posted within the forum should not be posed as such". I do appreciate you want to help, and especially when we all know it is difficult to get hold of the medical teams for their advice, however, they have the full medical history and plan of care for individual patients and are best placed to advise.
I do hope that your son has a settled weekend and can get to speak with the specialist teams soon. If he does have either (hopefully both) a haematology specialist nurse or a renal specialist nurse, that they can advocate for him and better support him over the coming weeks.
Please know that you or your son can call our support line if you want to talk any of this through: 0808 2080 888.
Keep us all updated and do remember to take good care of yourself too! Best wishes, Heidi.
Hi all,
Hope everyone is well.
Just an update on my son and his kidney biopsy.
I travelled down to him to take him to the hospital and he had the biopsy on Wednesday. I got to speak to the doctor that performed the biopsy and he told us all that my sons kidney does not look good and is not looking healthy. He advised us that my son will get a phone call to tell him the initial findings in approximately 2 weeks and then a further 4 weeks for further in depth results. He also said that my sons EF has dropped to 33 and his eGFR has dropped to 46. This really upset my son as he knows hes deteriorating. He stayed in hospital overnight and he is slowly recovering at home as the biopsy really made him feel ill. Hes feeling a little better today so all good (as good as it can be 
)
Myself and partner have decided regardless of finances we are moving back down to where he lives as soon as possible. My son needs more support than we can give from 280 miles away. He feels guilty that we are moving again as he feels its his fault. I have tried to reassure him that im not totally moving for him but hes not daft.
Will keep you all updated.
Hi @TINA2 thanks for the update, I am glad that you were able to be with your son, take him to the hospital and also talk to the doctor.
Now is the waiting and not knowing for the preliminary results and then a further wait for the in depth results.
It must have been a difficult, but perhaps easy, decision to decide to move back to near your son.
Yes, please do keep us updated, it must be such a emotional time for all of you and especially you as a mother.
Be very kind to yourselves
Hi @TINA2 ,
Just sending best wishes,
I hope your wait for more information is not too long , this is the worst time I think
Let us know how things are
Hi all,
Quick update.
My son received a telephone call from the Renal Consultant today. She told him that the Chronic lymphocytic leukaemia (CLL) has infiltrated his kidneys. He is to now await a further call from the Heamatology/Oncologist Consultant to decide treatment to be given.
A relief that we now know why his kidneys have deteriorated so quickly. Hopefully SMART medication will at least be able to stabilise his kidneys.
Hi @TINA2
So glad you have some clarity and understanding of what’s happening
Am sure the medication will help
Take care , thinking of you all
Thanks so much for the update @TINA2
Yes, it must be a relief to know why your son’s kidneys deteriorated so quickly.
Please do let us know the next stage.
Look after and be very kind to yourselves.
Hi
I have Chronic lymphocytic leukaemia (CLL) and have been a nurse for 46 years. FirstlyI am so sorry to hear of your son’s diagnosis it must have been a terrible shock. It’s very different as nurses when we are on the other side of things as our emotions are much more heavily involved. I think you have found the right place to get advice and share your thoughts and feelings in a safe way. The NHS has changed so much over the years and grinds along more slowly so I feel as service users we have to be more assertive do our own research and not be afraid to voice our concerns or ask the difficult questions. Your training and experience will help you with this. Take a step at a time. Please keep in touch and hope all goes well x