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2nd Transplant and my daughter is so ill

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  • Hi audrey

    of course you can another friend to join us , think of the laughs and hugs we would have

    my friends don’t get me anymore ,we don’t get invited anywhere with me not drinking anymore

    im off to clinic today to see why immune system isn’t getting better

    dave I do hope you are ok

    much love❤️

    Liam_at_AnthonyNolanHelenSpeedwell
  • Hi Everyone,

    I really do hope everyone had a good Xmas. I know I’m always bearing bad news but it just seems to be my life right now. I lost my best friend a few days before Xmas my little jack Russell Maisy Jo. Then the day after Boxing Day my husband collapsed and was rushed to hospital by ambulance and is now in ICU. His neutrophils are 0.2 and white counts and platelets are low. As you know he had a bmb and no leukaemia so we are praying it’s just a nasty infection 🙏 until the consultant who we don’t really find helpful at all! Sees Martin yesterday to tell him we are going to do a trephine next week to see what’s going on. To which he asked is it back and he said it could be hiding deeper in?? Why would he say this when last time he told us it’s just empty and he’s 90% sure it’s not AML??? I’m back home after sleeping in a doctors office and now feeling sick to my stomach again with worry. Please tell me it’s going to be alright. Surely if it’s not found on the bmb it’s not going to be on the trephine?? Forgot to add they increased his steroids and put him back on Myclefwnolate after I told them it makes him anaemic 🙈💔

  • Beaglegirl, I’m so sorry for everything that you are going through just now .

    it’s difficult to know what to say apart from that from my experience with my daughter , things can change very quickly and after hearing bad news one day , I was sometimes told something more positive the next. Your husband’s consultants won’t give up and will keep trying to help him.

    I can remember that feeling of being sick to the stomach with worry. It’s a very natural reaction to what you are going through. Losing your little dog will have just compounded your worry and dispair.

    please keep talking to us, and although no one can tell you anything for certain, we’ll try to reassure you and keep you calm.

    sending love ❤️

    Liam_at_AnthonyNolan
  • Hi Michelle

    i don’t drink any more either so looking forward to that coffee with Helen and you.

    I hope that the clinic has some helpful insight into your immune system .

    Thjnking about you, Helen and Dave . ❤️

    Liam_at_AnthonyNolan
  • Hi Auds,

    Thankyou so much for your support and kind words. Im

    going to see him today. ICU only lets you stay for 2hrs but they are marvellous with him so he’s in the best place. He has shown a little improvement thank goodness! They have found a bug in his bloodstream that was due to his line so that’s been removed for now. He also has RSV but as he’s so low it’s hit him harder. I managed to speak with the ICU consultant who explained everything and had so much time for me which is nothing like the Haematology ones 🙈 my horses and dogs are keeping my mind busy and I hope that I might have some better news soon. Hope your daughter is well?can I just say which I probably have done already the people on this chat are absolute angels. Always there when you need them and can always make you feel that little bit better when life gets tough. You really are the best 💕

    Liam_at_AnthonyNolanHelenSpeedwell
  • Hi all

    beaglegirl , I’m so sorry to hear you are both going through tough times again ,all I can say is that the hospital staff will do every thing they can do for your husband please try and keep strong and have faith

    with this terrible illness there is a lot of ups and downs always here for you ❤️

    Liam_at_AnthonyNolan
  • Hi audrey

    not any answers at the clinic , had all my blood taken for hiv, covid and anything else

    need a ct scan to see what that shows I’ve being told I have secondary immune something else

    so see what all this shows love to you all❤️

    Liam_at_AnthonyNolan
  • Hi Everyone,

    my husband has now got a feeding tube and his heart and kidneys are struggling. High sodium. It is neutropenic sepsis and the doctors can’t really say what way it’s going to go. Although his neutrophils have come up to 0.9. Does this mean he could start improving as they go over 1?? I know I need to ask the doctors these questions but I’m too scared

  • Hi Beaglegirl.

    Im so sorry that your husband is having such a dreadful time.

    my daughter also had a feeding tube when she was extremely ill and although it looks scary and unpleasant , it will help your husband get the nutrients that he needs.

    Everyone is so different in how they respond to the various treatments . I think that you should speak with the doctor about the neutrophils as they will be able to give you more of an idea of what is going on. Please remember that the medical team will do everything in their power to get your husband through this difficult hurdle .

    It’s so hard for you having to watch your husband suffer and not be able to do anything to help. But just being there with / for him is so important and although you are panicking, you are being tremendously strong.

    Im sending all my positive thoughts that your husband will slowly begin to improve . We’re all here for you as you need lots of support too.

    Sending hugs . xx

    Liam_at_AnthonyNolan
  • Hi Michelle

    Im glad that your team are being thorough and trying to get to the bottom of what’s going on. They’ll keep at it until they find out and sort your immune system out.

    I really wish that you could all get a break.

    Helen and Dave, I’m thinking about you both as always .

    Night night all my friends . Xx

    MichelleanneHelenSpeedwellLiam_at_AnthonyNolan
  • Hi beaglegirl

    i had a feeding tube in for months , they are scary , and to hear all the medical talk and icu , the consultants and staff will do everything in their power to help, I think you really need to speak to them , you are doing well being so strong , I send you both love & strength to get through this hard time

    ❤️

    Liam_at_AnthonyNolan
  • Hi audrey

    yeah the consultant was lovely , he’s being very thorough , I’ve had a bout of sickness for a few days , god knows where that has come from

    how’s things with you ? Hope all is well ❤️

    Liam_at_AnthonyNolan
  • Hi Michelle

    im sorry to hear about your sickness. My daughter had a bout of that and it came out of nowhere . Her consultant said that with her immune system being so low that anything lurking about is so much worse for you guys . Hope you feel better soon.

    my daughter is doing well . There doesn’t seem to be any signs of gvhd. Niggly problems like tummy issues, early menopause , damaged spleen etc . Consultant said that they probably did all that when saving her life . Like yourself and all our friends here, she’s brave and gets on with life the best that she can. I look at her and can’t believe that she’s the same drastically ill person who came home hardly able to walk and certainly couldn’t eat. It’s amazing what time and great medical care can do. I hope Beagle girl will get a boost from this. As you know more than myself, when you ( or a loved one ) is at there lowest it can be difficult to imagine that things will get better . Everyone in this group are warriors and survivors

    Look after yourself and lots of rest until you feel a bit stronger . ❤️

    Liam_at_AnthonyNolan
  • Ps - thanks for cuppa and cookies. I’m having them now. Hope

    Helen can join us .

    Liam_at_AnthonyNolan
  • Hi audrey

    im on having a cuppa now , it’s nice to have a chat with it 😄 it’s so true we all have gone through so much and are still going through

    we just get on with things , things will get better in time ❤️

    Liam_at_AnthonyNolan
  • I'm looking forward to that cuppa, it'll probably be cold by the time I get there.. that's ok.

    Michelleanne I'm glad they're being rigorous looking for the causes of your immune dip. It would be nice for you to have an explanation from them. I've got some values out of sync but they don't know why and say it'sprobably the cgvhd. I accept that if they needed to look into it , they would. It'll be better to know for you, although its a bit scary waiting. We're with you Michelleanne. I hope you can keep a mental distance from the diagnostic visits. Distraction can be so helpful. Your Anthony Nolan friends are always with you.

    I've been in tears a bit over Christmas... only briefly, and they felt very painfully healing tears, but seeing lots of loved good friends and taking in what I've been through, how close I came. Just holding hands with them, huggingthem. I realised i nearly lost... and now I'm here. I could feel how frightened they had been which i had never really taken on board before. Wonderful to be able to feel it. It felt like I can close that chapter mentally.

    The cruel thing now is , the gvhd, 2 steps forwards 2 back, 3 forward, 2 back. Prgress is something else, but I do seem to be moving in the right direction, on a very slow scale, with unfortunately the feeling of more downs than ups, taking my eyes, ****, ankles, lower legs.. problems with me. But I'm alive and over a year, it looks better.

    Dear Beaglegirl, I was on drips and catheters for everything for a very long time indeed. They really thought they might lose me, they couldn't understand what was happening to me. I'm telling you because I want to reassure you that in the horror of your hubby's situation, try to remember he's moving through it. He's moving. His team are clearly working wonders, he's suffering so very terribly. He can recover. Hope is a cruel thing , I had an allergy to it, but maybe take some peace from knowing he can 'make it'. He's clearly very resilient even though it doesn't look like it.

    Dave, if you do call by, it'd be lovely to get a sign of life. I see you're busy on Facebook so I'm not worried. How's the new meds? Have you tried anything different with your skin?

    Michelleanne, do keep us posted if , when you feel like it. I imagine it must be unsettling for you. We're with you sending you love to help you on your way. We're all on this bloomin cruel journey.

    I'd better get off here. Wishing us loving peace for 2024.

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    i think we all have our ups and downs , I just get on with it , I talk about you all and your journeys with my husband it makes me feel better knowing that we are all the same.

    I’m always thinking about you Dave hope you are ok , I wouldn’t no how to find you on facebook

    helen you sound so much brighter so pleased you had a lovely time with your friends , I lost all my so call friends and the others are so busy maybe it’s my fault aswell as I don’t bother ❤️

    Liam_at_AnthonyNolan
  • Hi Michelleanne, hello my dear Anthony Nolan family...

    Please be kind to yourself. It's definitely noone's fault that our social lives have so very radically changed. I've lost people too and they've 'lost' me. It's not a friendship if the will doesn't come from both sides. It wasn'tto be. Thats ok. We're doing very well considering the conditions we're under. I've been in a socially challenging place since 2019 for quite a few different reasons.

    I think if I lived in England again it would be the same. I'm an expat here and the friendships that I was talking about are in the north of Germany. Strong bonds, 3 girlfriends, they're like family because we had no close family nearby when our children were small, only each other. They're 6 hours drive away. Now the children have their own lives as adults. I'm a bit of an auntie to their children and they're very precious to me.. and I realised I'm precious to them too. That made me cry.

    As my dear lad said to me when hubby and I got back home here in the car and I was getting melancholic after the long drive, my son said ... mum, it's just different here, you can't compare friendships. He's right.

    Here at home being so ill it's very challenging to maintain friendships as you say Michelleanne. We here in the Anthony Nolan group share similar challenges. I'm socially isolated here but thankfully being in a small village helps, and having AnthonyNolanhelps a lot too. I would love to work again to feel socially awake, alive. Who knows?... dreams are healthy, not aims or goals, just dreams.

    ... I'm blessed though with the very small village community, the neighbours hold together and the originals are friendly. I have my choir in the village too, and although I can rarely make it, they get in touch with me and ask me to join them. They sent me a video of them singing whist I was in the clinic for 9 months. It made me cry so it was 6 months afterwards that I could first watch it.

    We have gymnastics for seniors in the village too. About 10 of us once a week, average age 80. I don't know them but it's starting to feel nice, been going for over 6 months. I know I would go under if I didn't have choir and gymnastics. Sounds as if I'm really busy... LOL... that's it. At least two appointments that I can cancel. .. because I'm not well enough.

    My therapist has also helped me enormously. I haven't been with him long but he's very good.

    I talk about us here too to hubby. It definitely makes it feel more 'normal' knowing that we're sharing such similar things here in Anthony Nolan. No one else gets it.

    I'll get off here, the telee is calling :)

    I wish we could meet for real. It feels like I'm missing you lot right now ... now that's stupid.. but true.

    Love to you all.

    Helen

    PS. I hope I haven't said too much here... please ask questions, I'll be happy to share with my Anthony Nolan 'family'. Shame it's so public. We need a quiet corner. Sofa, Arm chair.. coffee table, soft lighting.... oooh , I need it... it's even hard writing this. It's making me sad. Missing you all ... even though I can't be.

    Liam_at_AnthonyNolan
  • Hi helen

    i totally know where you are coming from and I totally agree ❤️I’m on Facebook

    Liam_at_AnthonyNolan
  • Hi Everyone,

    It is destroying me to write this but I’ve lost my best friend. I. Annoy cope nor accept that it wasn’t the leukaemia. Multiple infections and in my opinion a lack in care from the doctors. I just don’t know what to do anymore. I can’t eat, sleeping is impossible and dealing with the fact I have to live without him for the rest of my life is unbearable. I pray to god to not let me wake up but I’m still here. I’m so angry with others who I’ve spoken to that have had 2nd BMTs and they are doing okay. It’s not fair he should be here with me. Sorry for the upsetting post but I have no one else to talk to. Samaritans and macmillan. just re me to look after myself. I just want Martin back that’s al I want 💔💔💔

  • Hi beaglegirl

    im so very very sorry and sad to hear your heartbreaking news , at least Martin is in peace and no more pain , I know that doesn’t make things any easier

    i understand about feeling angry , I would say that’s a normal feeling , you will always have him in your heart and your memories

    how old was he ? Please talk to us about him I would love to know what he was like always here for you stay strong you are in my thoughts and prayers ❤️

    Liam_at_AnthonyNolan
  • Hi Beaglegirl,

    I am so sorry to hear of the loss of your husband, your best friend, Martin. All of us here in Patient Services send you our deepest sympathies.

    It sounds like you are understandably struggling at the moment. We want to check in with you — do you have support around you right now? Do you feel like you have someone to talk to about how you are feeling?

    Michelleanne’s suggestion of sharing more about Martin sounds like a lovely offer of support from this group. Please take it up if it brings you any comfort.

    You mention you have been in touch with Macmillan and the Samaritans. Please do reach out to them again (Macmillan’s number being 0808 808 00 00 open 7 days a week 8am to 8pm and Samaritans is 116 123, open 24 hours a day), if you feel the feelings are too difficult to cope with, or you need someone to speak to outside of our opening times. As always, we are here on the helpline if you need us 9am to 5pm Monday to Friday.

    All the best,
    Liam

    Dieseldrinker62
  • Hi Everyone,

    the pain is unbearable and I don’t think I can live any longer without him. Martin was 53 in December. I’m 44 and he was my first boyfriend. I’ve been with him since I was 17. I was very lucky to have him he did everything for me. He never missed a days work and whatever I wanted he would get even if he went without himself. He loved his motorbikes and dogs. We have horses too which he looked after for me. They broke the mould when they made him. I cannot accept it was an infection that could have been avoided which is making me ill. I’ve tried Cruse and Samaritans but it doesn’t help. I really don’t know how to carry on. I’m so sorry if I’ve upset anyone with what I’m writing it’s just I don’t know where else to turn.

  • Hi beaglegirl

    wow you were very lucky to have found a soul mate , that’s a love that will last forever , you sound as if you had a wonderful life together

    please keep talking I’m always here , hopefully once the shock of all this has worn off a bit ,you will see things more clearly , you are not upsetting anyone it’s your grief ,what would martin have said if he heard you talking like this , please try and stay strong and take one day at a time

    what sort of dogs do you have ? It sounds lovely to have horses aswell our grandchildren would love that

    I suppose sometimes this can happen even with the greatest of care , what do you think would help ? I know one thing would be to have not lost martin , have you any family or good friends you can talk through things with , please stay in touch ❤️

    Liam_at_AnthonyNolan
  • Hi MichelleAnne,

    We have 2 Beagles Dexter and Gracie May, 2 Jack Russell’s Ringo and Ruby and a Romanian rescue which he looks like a Black and Tan corgi called Mr Tetley. I just wish I could go back a few weeks and Martin was just left on the myclofenelate that way the GVHD wouldn’t flare up he wouldn’t of been put on steroids and no line would of gone back in. If he had gcsf injections to keep his neutrophils up he would still be here. It’s all I think about! That and just wishing he is here. He was my world and I can’t see any life without him as it’s so unbearable let I feel so alone x

  • Hi beaglegirl

    your dogs sound lovely we have a Scottie called Jacques . Please don’t beat yourselve up about his treatment you’ve done everything for Martin , I can understand how you feel , please give yourselve sometime ❤️

    Liam_at_AnthonyNolan
  • Hello Beaglegirl,

    I'm very sad to hear your news. You're right, it's not fair... I'm afraid I have no words. Your pain, I can't imagine. I hope you have space and time to let your feelings go.

    A friend works in palliative care and when I had an unfair bereavement years ago that really shouldn't have been, for medical reasons, he reassured me that it often isn't fair and it doesn't come when it should.

    That acceptance helped me to grieve, instead of getting angry.

    Grief is so important now, please try to let the anger go so that you can let your very special grief take first place, not the anger. Grief is so painful because it's your love. Tortuously painful. Just try to get through each hour.

    If your Grief gets physical, uncontrolled, make sure you can withdraw and do not be embarrassed... find time to really let rip in a safe space.

    I'm sorry if my words are inappropriate... my Grief for the most special person in my life actually extended our relationship... Martin is with you in spirit... talk to him, shout at him... indulge yourself if it helps. Do whatever feels right and healthy. You're at the beginning of a long journey, be very very kind and patient with yourself.

    Much love to you Beaglegirl, and to our wonderful group.

    Helen

    Night night.

    I'm a bit worried my words are too much. I'll just hit send.

    Liam_at_AnthonyNolan
  • Hi all

    please don’t very forget we’re always here for each other ❤️

    helen send me your details and I’ll see if I can find you on Fb 😊 ❤️

    Liam_at_AnthonyNolan
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