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2nd Transplant and my daughter is so ill

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  • Hi Michelle,

    sorry to hear about your covid result. I hope it is not hitting you too badly. Sorry you are also in such a low mood as well. I unfortunately always seem to have a low mood as my gvhd never seems like it is improving. My flair I jabd months ago seems to be taking forever to heal, and my mobility has still not improved yet in over 2 years it seems like I am never going to walk properly again and I am gradually losing hope of being nearly normal again. It often makes me question as to whether I should have had this transplant. I am 11 days into this new drug but so far seeing absolutely no difference as of yet and worrying that I may not get any effect from it. I know they say that people had positive results from it half of them started seeing results between weeks 4 and 8. I know it is soon to cast judgement on this med but I am unfortunately still so low at the moment and stuck in a chair all day as I can only stand up for a maximum of a few minutes. I cannot achieve anything due to my incapacity to stand.

    I am glad Liam was of help to Beaglegirl and by talking to him has haloed a bit even though we know it is such a massive loss and your heart will still hurt for a long time.

    Helen,

    I hope your wounds and mobility is improving and I am envious of you having the ability and strength to do your geriatric gymnastics as you call it.

    Audrey,

    I hope life is getting a bit easier day by day after the loss of your son, and hope your daughter is also still going from strength to strength although progress after a sct always seems very slow.

    Liam_at_AnthonyNolan
  • Oh dear Michelleanne,

    Poor you. Do you have to distance from family? Is someone looking after you? Have you got it bad?

    I've had it twice... every time is different. I hope you have a mild version.

    Thinking of you,

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi all

    ive just had a test this morning ,its awful high temp , bad chest , feeling rough , both myself and husband have it , yeah we’re isolating

    hope fully feel better soon Dave I hope things start to get better keep strong ❤️

  • Hi Dave,

    Really sorry to hear about your situation. I'm afraid I can't inspire, my mobility is regressing because I can't keep using cortisone cream. I was at the eye clinic today, took about 20 minutes to walk from car park to clinic, no distance. I was turned down for the disability parking... I'll have to reapply. The doctor praised me because I could open my eyes, they were open when I talked to her.

    Haven't been to senior gymnastics cos of my bronchitis. I need to drink more, sleep more, but I hatdly move at the moment. I was doing soo well .... :(...

    Chin up Helen, you're doing well, this is hard, etc etc... trying to believe it all... feeling a bit lonely too. More than normal... I'll have to see it as a project ... I just don't have energy for it...

    Feeling like there must be an end to this... it's endless.

    I hope you're feeling loved and peaceful all of you,

    Helen x

    Liam_at_AnthonyNolan
  • Hello everyone . I’m so sad that you are all having such a struggle just now . This time of year doesn’t help as it’s difficult to get any fresh air . No-one would want to sit outside in the wind, rain and cold!

    Dave, I so wish that you had a few friends that could pop in for a chat. I know that when you are so low , that you probably can’t be bothered chatting, but it would do you so much good . Is there anyone who you could reach out to? Someone who would pop in for a coffee and chat? I know that you feel things will never improve , but they will. Give the new drug a chance . It’s early days and if it doesn’t work then something will eventually help.

    Helen, I hate to think of you feeling lonely and low because of everything that you are having to put up with. Not having your mobility would pull anyone’s mood down and I just wish that I could help you in some way. Wouldn’t be lovely if we could all get together and have a lovely chat but alas , we’ll just have to keep chatting here . Things will get better so please hang in there. Keep talking to us and I’m sure that when spring finally appears , we’ll all feel a little brighter .

    Michelle, keep resting. I’m so sorry that you’re having to deal with Covid on top of everything else .

    sending love to my brave, stalwart friends . ❤️

    Liam_at_AnthonyNolan
  • Our dear Audrey,

    Thank you so much. Your kind thoughts really do help. Truly, there is some kind of magic wand going on here, unfortunately without medical power, but lots of loving energy.

    What about you? How are you coping?

    Much love to you, and the gang,

    Helen

    Liam_at_AnthonyNolan
  • Hi Helen

    i feel such a bond with you all and knowing how my daughter suffered and still has the illness hanging over her, if i can help any of you just wee bit, then i feel privileged.

    unfortunately my daughter is back in hospital. She has another virally cough and cold and has spiked a temperature. I’m wondering if any of you have been in and out of hospital with these sort of infections ? It always worries me so much although I know that in the whole , my daughter is doing well and not suffering from gvhd. The latter seems so difficult to live with and control.

    As always, I am thinking about everyone and hope that you all have a better week than last.

    love to everyone xx

  • Hi audrey

    ii have them coughs , regular thankfully not hospitalised , I’ve been told it’s secondary still waiting for results from c t scan , I really hope she gets home soon ❤️

  • I haven't been admitted for my bronchitis... it was initially slight pneumonia but it thankfully went to just bronchitis... but I do carry a thermometer in my handbag and if I ever develop a temperature I have to go straight in.

    I was told I should have called an ambulance when I had a nasty turn after my 2nd covid jab. I didn't take it seriously. The nurse was unsettled by my attitude.

    I really hope your daughter comes home soon. It's so hard for all of you. A roller coaster.... maybe helpful, I found it useful to hear from my therapist about 'prospect theory' to help me with a roller coaster here. I was getting really insecure when the family are here about them leaving and saying goodbye and the time after the visit. He helped me understand through the theory (kahneman- nobel prize for economics) that humans experience loss much more intensely than gain (so obvious ) . My feelings were getting out of hand, I was losing it a bit, and understanding what was happening has helped me enjoy being together more and deal better with the 'loss', the leaving. For me it's also about trust which is a challenge for me from my birth family.

    I really hope your daughter gets back soon. She's young, has good chances. Also they'll take extra measures because she's young with the boys. I have the feeling that finances and budgets are a constricting factor for me because I'm older, adult children and not worked for ages. A cruel thought but tapering the ecp is , I think, a financially driven decision. Maybe it's for the better without my health being a factor. I mean, maybe it's going to be what I need.

    Audrey, are you able to grieve at all? Do you find space.. you must have the boys with you a lot. A wonderful blessing I'm sure, but not only. How are you coping yourself? Can you creep under the duvet? It's such a precious place for us all.

    Michelleanne, what does 'secondary ' mean? Best of luck for your ct results, it's good that they did it.

    So, I hope I haven't gone too far ... as always, ignore what you don't need. Thank you for being with me.

    Much love to you too Dave. The skin problem is cruel... that's pulling me down at the moment too. Do you have any local contacts, a café with regulars? My brother, who's quite isolated, visits a 'mind' café run by volunteers once a week. It's his lifeline. I guess you can't get out there though. .. I'm with you.

    Love to you all,

    Helen

  • I feel uneasy about my last post. I wasn't referring to those we have lost, just the coming and going. Grief is such an intimate private experience. I'm sorry if I was insensitive. Sometimes my wish to 'advise and support' can I'msure, be inappropriate. .

    Much love to you all,

    Helen

    PS. Beaglegirl, we'd love a sign of life if you drop in ... x

    Liam_at_AnthonyNolan
  • Helen , you were not being insensitive and just saying what was on your mind. You have so much going on that no wonder that you have lots of different concepts to explore and ponder over .

    i do have intense grief. I loved my boy so much and every day is hard. Added to this, the worry of my daughter’s health can be quite overpowering . However, I try to get through each day by helping the family and being aware that so many people have so much to contend with.

    I really hope that your epc is not being cut because of costs . Dave and your skin problems and your eye problems are so debilitating and I do hope that they will eventually find something to help you both. My thoughts are always with you. ❤️❤️

    HelenSpeedwell
  • Hello everyone . I hope that today has been one of your better days although I know how much you are all struggling at the moment.

    I just thought that I’d give you a wee update on my daughter . She was told on Sunday that she had tested positive for Covid . Of course that put me into panic mode . Then yesterday she was told that it’s not Covid but coronavirus ! I thought that they were one of the same but evidently the former is what caused the pandemic and the latter is like a flu virus . Anyway, we were visiting her when the doctor came in. Yesterday she was told that there was an abnormality in her lungs . More panic! Now today they are saying that she has pneumonia and have spoken to respiratory who want to give her another ct scan after the virus has passed. They’ll then be able to tell if there’s further damage to her lungs or if it was the virus making them look like this . Sorry if that’s a bit of a long winded tale but it’s good to be able to tell this to friends who will possibly understand more than I do.

    Michelle, I hope that you are over the worst with Covid and beginning to feel a little better .

    Helen and Dave , how I hope there is a glimmer of improvement. Dave , perhaps the new drug is beginning to take effect? Helen, keep strong and think positively that they will find something to help your skin and eyes .

    sending love as always . Xx

  • I had pneumonia diagnosed 2 weeks ago. Today was the first day I felt I am better and have energy.

    Is your daughter's viral or bacterial? Mine was viral so I just had to see it through. It really knocked me out for a while. I had extremely low energy levels. .. but I always feel bad so it was difficult to distinguish. .. but in hindsight I felt really grotty.

    She'll get over this. Has she got a temperature?

    You're being so strong for your whole family Audrey. Remarkable... . and so kind to us all here too. You are a treasure. ..a real treasure.

    I'll say night night here.

    Love to all,

    Helen

  • Hi all

    grief is so different for everyone , like everything in life , we all have to do what is best for ourselves

    I hope helen and Dave I hope you get some ease soon keep strong

    audrey it’s strange I have the same as your daughter , I thought the same as you that they were the same thing

    sending my love ❤️

  • Hi all,

    sorry you are all having such difficult times. I hope those with breathing issues that they go away soon. There seems to be a lot of cough and colds around. Touch wood as they say I have not picked anything up but that is as well because I never leave the house only for my Ecp treatments and my consultant visits. If I do leave the house I always have mask on all the time. Main reason also being I don’t want my body to expend any energy fighting off colds flu or gvhd flare ups that can occur when your body creates an immune response but to use the body energy to fix the gvhd issues I already have. May be a strange way of looking at things but until my skin and fascia issues reduce and start giving me some mobility back then I will continue in same way. Helen you suggested to me in a previous post about maybe going to a local cafe or something for my mental health unfortunately if I leave house I have to wheeled in wheelchair up a ramp into hospital transport as I cannot bend knees very well to get up steps and I don’t think nhs will let thier hospital transport take me to a cage, also as I tire so easily and not really ever in chatty mood I prefer to stay at home even though it is not good for mental health. I suffer greatly with mental health issues and I know it and I know talking about things will never help this issue, I will only be able to resolve this when I get some mobility back.

    Audrey make sure your daughter keeps a close watch over her chest issues as some chest issues can be gvhd and doctors do not always know of gvhd or not from the beginning. Often if gvhd you sometimes get other issues like skin issues, spots on skin, skin rashes, skin tighter, lack of saliva in mouth, sore mouth, difficulty swallowing, high liver enzymes, constipation, diahorrea, no appetite to name a few. If she gets possibly any of these as well get the consultants to consider gvhd.

    Helen, I really hope your feet start to recover soon as has been so long. I know the flare up I had on my legs 3 or so months ago is also taking so long to heal. It takes so long I still have scabs from when the puss came out after the skin started peeling and ripping. It is improving but at a reel snails pace I have never known something take so long.

    Now I am taking rezurock and am on 16 dose, I believe something may very slowly happening but is very very slow if it is. Not counting my chickens to soon as I often think maybe I am improving and then find myself back at square one or even further back than that. Looking at some you tube videos on the success of rezurock trials also helped to lift me a bit and many people who had success with the drug started seeing improvements between one and two months after taking it so keeping fingers crossed and has helped make me a bit more positive.

    Hey Beaglegirl, where are you we miss you being part of the clan. However you fell at the moment we still wish to hear from you and whatever you have to say. However we do understand that if you found Bering part of talking to us didn’t help you and made you feel worse we also understand as everyone has thier own individual way of dealing with things and what can help one person doesn’t help everyone. Sometimes just by venting how you feel can help it is not necessarily the feedback. Everybody does what they need to do in the end to help them through thier individual situations. It is just good to know you have a trusted loyal group you can vent to if you need to.

    I have just come back from my Ecp as I feel so shattered and will need to have a sleep soon.

    Thankyou all for being there for us especially Michelle who also goes through so much but I think manages to cope a bit better than the rest of us, she must have a better formula.


    anyway all bye for now and take care.

  • Hi Dave

    I struggle everyday with mental health issues , and other things that I struggle to cope with (my dad before he died always look on the bright side of life ) I always think there’s people worse than me and a leat I’m still here keep strong xx

  • I think the world after covid has not helped anything. The amount of people with mental health issues after the main pandemic has increased massively. I think many people are also worried about socialising in case they catch one of the strains, more people off work with these issues causing staffing issues everywhere which means many services are failing which have a knock on ettect causing more stress and anxiety, price of goods and services continually going up etc I am surprised there are not more people with issues. Yes there are a lot more people with bigger issues than us and now after I have or am in such a bad place I really feel for them and what they are going through.

  • Hi Everyone,

    I’ve been feeling guilty for not coming on here as to have people actually concerned about me makes me feel okay. My eyesight has got worse so I’ve had to have another appt booked for this Friday as I might need more treatment. I’ve managed a click and collect however, I had a massive panic attack and couldn’t get home quick enough. I never want to go out again. I’m sorry to say I’m still not coping well with losing Martin. His funeral is 16th Reb. I’ve been referred to a mental health counsellor I’ve told them I’m not mental. Although I have thought about taking my own life but thankfully looking at my dogs and hearing Martin say sort yourself out stopped it. Although it kills me coming in here to see the saving the lives of people with blood cancer. I don’t want to let you all down. I’ve managed to do my horses to day as my mum has gone in for her operation to remove her tumour as dad had to take her. I felt better for a second and then bag it hits me like a train. I hope your all doing okay and im

    sorrg to have not jumper on here sooner to let you know how I’m doing. Alison aka BeagleGirl xx

  • Hi Alison aka Beaglegirl,

    teally good to hear from you and know you are here. We have missed you. Don’t worry about the mental health label I think most of us are the same we all have issues in our minds to deal with and sort out and we know you or not mental but I could imagine Martin would joke and say you were. All our mental health issues will all get hopefully fixed by different means as well. Some need talking to others about the issues we have, some will just take time, others having better mobility and a way to clear one’s head and others will put the issues to one side and carry on plodding on.we will do what is best for our own individual needs.

    I am so sorry to hear about your mum. It must be so hard for your family and for you going through this time with your mother having a tumour removed, you have all been through so much lately you don’t deserve more worry.

    Don’t feel guilty about not being on here and talking to us. We do care about you and we are here if you want to chat to us or let of steam or whatever.

    mot is good you spending some time with the horses today, one of the passions in your life as I bet they missed seeing you as I know from being around horses as you know they have amazing characters and also feel what you feel and I know moving on they will help you a lot as will the puppies as I guess you refer to your dogs as your puppies.

    i know you are lot looking forward to the funeral as it will heartbreaking but is where you can say your last goodbyes to the live of your life, and you will still hurt for a long long time. When you live someone so much the hurt is always so much greater and lasts a lot longer.

    Don’t also worry about shutting yourself off from the world if that’s what you need to do for now. You just do it for as long as you need. You need time to remember, ponder, adjust, weep, let the anger out or whatever you need to do.

    I am just glad you are here for now.

    we are proud of you and you are doing the best you can.

  • Just a quicky, I just read through the last messages and feel so very grateful for the understanding and compassion that we share here. Thank you so much. It feels very good and safe.

    I agree with everything said... Alison, I hope you can read a few of the old posts ... what Dave says is so right, we're here for you, you certainly don't need to apologise or worry about anything, we're just glad you're with us. We all have our challenges, mentally, physically, emotionally, it belongs to a very real 'normal'.

    Wishing you all a peaceful evening,

    Love

    Helen

  • Just wanted to share with you Dave, I've been watching you tube videos too and have also found it a positive experience.

    One I quite like was... "chronic Graft vs host disease (GVHD) of skin and connective tissues 2018.

    I'd love a recommendation if you've got one. There's a very wide variety... of content and quality too.

    I'm having a better day. Love to all.

    Helen

    Auds21
  • Hi Helen,

    whenever I look at the you tube videos it gives me a bit more hope and picks me up and I have a slightly better day. I don’t know if you are taking rezurock but if you look at a video of you search for iach rezurock which are regard to its initial trials and success and how it helps. Definately I think one worth watching. I think I have seen the connective tissue one you refer to.

    Good luck Alison for your eye re-examination hope all goes well tomorrow.


    michelle and Audrey I hope you are having better days at the moment.

    I feel slightly better today as managed to sleep 5 hours without waking. A miracle for me

  • You sound a bit perkier too Dave. I'm pleased for you... its nice for me to know you're in a better space too. .. maybe it'll hold for a few hours... or more. That's my timescale at the moment.

    We really do feel for each other here.

    I'll check out the rezurock video, who knows maybe it's cheaper and they'll prefer it in the clinic ... in the long run. I was dubious about it when I last looked.

    I hope you're all getting through somehow.

    Love

    Helen

  • Hi Dave, I just read this in fb. What do you think she means? Did you see it?

    It's in response to someone asking about jakavi costs/payments.

    "My daughter is on it for the same reason and our insurance didn’t cover it at all. Her team helped us and we went through Jakafi and it is free. We had to fill out a bunch of paper work and it took awhile but we dint have to pay anything out of pocket." (Christy Birk Muertz)

    Maybe helpful. I guess there's no way out otherwise everyone would be doing it. :(

    Love to all,

    Helen

  • Hi Helen,

    In the US there appears to be certain funding schemes from organisations or drug companies themselves if you can’t afford the drug or your insurance company will not pay for it. Not sure how they can afford to do this though unless they are like charities with funding from the public.

  • Interesting... strange, it doesn't sound very profitable.

    Night night, sleep well:)

  • Hi Everyone

    Helen and Dave , it’s so good to read that you are both being able to support each other with your symptoms and you both seem in a slightly better place. I just want you to know that I constantly think about everyone in this wee group . I think that our chats really help everyone .

    Beaglegirl, I know that you are going through the most difficult time in your life. No words can help but ans everyone has said, we are here for you.

    Michelle, I really hope that the worst of your Covid symptoms have passed. Covid will have completely exhausted you so please rest as much as you can . Spring will eventually come and the days will get easier.

    Love to everyone . ❤️

  • Hi audrey

    im having a really tough weekend 10 days positive tests ,struggling mentally and physically hope you are all ok ❤️

  • Oh Michelle, I’m so sorry that you’re having to go through this .

    I know that when you’re in the midst of a Covid attack or any other illness , it seems relentless but it will pass. Please remember how strong you are and how you have got through so much and always have time for others . We’re all here for you . Sending love . ❤️

  • hi everyone, is there anyone online I’m struggling. I’m not doing very well

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