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2nd Transplant and my daughter is so ill

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  • Hi beagle girl

    that’s good news apart from the gvhd, that’s something to look forward to enjoy

    keep strong happy improvement ❤️

    Liam_at_AnthonyNolan
  • Pleased to hear he got through the sticky patch Beaglegirl. Thanks for keeping us posted.

    I hope your chest isn't lung gvhd. Dave told me it's the pits. Although till now between skin eye and intestine I find the eye the worst.

    You're all with me, thank you

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi all,

    Really good to hear Beaglegirl your husband is now doing so well. Especially as you are now able to plan days out. I have been waiting over 2 years and still not up to it yet as leg fascia is still too tight. Take it very easy and get your husband to stay masked as any slight cold / infection could see him back in hospital and gvhd flaring.

    I hope the chest issue is not gvhd as Helen pointed out it is one of the worst gvhd so also insure with any chest issues also not to pick up any colds that could make it worse.

    I am also glad Audrey about your daughter and hope she goes from strength to strength.

    Helen I do also hope you are improving, but I know what it is like if you are not as I am still stuck with no change and unfortunately it still gets me down.


    all the best to you all and I hope you all continue to move forward.

    lits of love

    Liam_at_AnthonyNolan
  • Hi all

    we still wear our masks if we go out , still very careful where we go , it doesn’t bother us going out never been in a pub for 3 years not interested , we like to go outside in the fresh air , had my chest X-ray back it’s all clear , another course of antibiotics and more steroids as it’s like having a infection , my gp has said it’s all scar tissue so i might end up on steroids. Hope you all get relief soon stay safe ❤️

    Liam_at_AnthonyNolan
  • Hello all

    I'm here in the clinic, first ecp behind me. It went well. Tomorrow second and then home again.

    Thanks Dave. Like you, I'm not moving on. Skin, also fascien issues, scleroderma, elefant skin, ulcers that don't heal... hope they don't go into the bone. I wish I could bandage it but it makes it all weep. Barefoot indoors, outside with the wheel chair. Last night I was using my walker in the house and it was helpful.

    The fatigue is much better though, although nowhere near normal. Appetite is better too although mouth gvhd has it's limits.

    I'm hoping that whatever it is with yourlungs Michelleanne, that they jump on it before it establishes itself.

    Beaglegirl , Dave has a good point and I should follow it too. Corona numbers are climbing here in Germany. Definitely mask. I want to go to a singalong on 14.9 but it's indoors. I'll probably have to skip it.

    I'll be off here. It's lovely to hear from you again Dave, it's been a while.

    Love to all, we're here, that's good.

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    i agree it is good to hear from Dave it’s being a while, you sound very upbeat ,

    we don’t go anywhere without my mask I hope they can sort my chest out soon my fatigue is bad too and my appetite mouth gvhd doesn’t help keep going at least we’re here

    take care ❤️

    Liam_at_AnthonyNolan
  • Hello everyone

    Gosh you all have so many challenges to face everyday and yet you all sound so upbeat and always here to support the others. I know that although you all come across as so upbeat that life is not easy for any of you.

    beaglegirl, it is so good to hear that your husband is making such good progress. I would agree with everyone else about masking up and trying to avoid indoor crowds in particular. it was my daughter’s first covid vaccine after her first SCT that started the rejection. Because of this , she’s been told not to have the vaccine which of course puts her in more danger of covid . We all test regularly and wear masks if we’re out and about. I’m so nervous about passing anything on to my daughter.

    Helen and Dave - it’s lovely hearing from you but I truly wish that they can get on top of the gvhd and that both of your mobility improves .

    Michelle, I’m hoping so much that the antibiotics and steroids help to improve your chest . My daughter seems to have a permanent cold and her cough is a bit worrying . She says that she doesn’t feel unwell but struggling with fatigue . As a loved one , I permanently worry and I know that Beaglegirl will empathise with this .

    Anyway, as I’ve said before , I think you are all so brave , strong and resilient. Thank you for being here for me and for each other .

    ❤️❤️

  • Hi audrey

    my family are the same with me , we keep out of crowded places unless it’s outside

    i feel like that as if it’s cold , my gp thinks it’s all the treatment

    it doesn’t bother me , not going out pleased your daughter is doing well,you also in my thoughts are so brave you have been through so much

    continue in your strength and friendship

    take care ❤️

    HelenSpeedwell
  • Hi Michelle

    i do think there’s similarities between my daughters symptoms and yours . I just worry all the time but try to appear relaxed in front of her . She doesn’t want a fussing mum, just to be treated normally. She had another biopsy at the beginning of the week so always a bit tense while we wait for results. How long did you have to keep having biopsy’s ( bone marrow ) . My daughter is still on 3 monthly. I think that maybe the immunoglobulin infusions every 4 weeks are also helping .

    I know that life is not easy for you, Michelle but your positive outlook and your care and support helps us all so much .

    im thinking about all my friends here and hope that soon Helen and Dave, you will both get a break from the painful, debilitating gvhd.

    love to all xx

  • Hi aids,

    I can tell you of my bone marrow biopsy’s I can say like your daughter I never looked forward to them as they are very painful or should I say uncomfortable but really a must for and blood / bone marrow cancer. If your bloods are for some reason not quite normal are being produced normally or cells are abnormal it is down to the bone marrow not functioning correctly and the only way to see what the issue is is to put the cells under a microscope to look for abnormalities and if there are any abnormalities to replace them with a bone marrow transplant generally. When you have your transplant after a few months they need a fresh sample to see if your donor cells have taken over from your old cells. Sometimes there is a percentage of of old and new and it can take a little time sometimes for the donor cells to take over 100% but that is the ultimate goal. Luckily I reached 100% quite quickly and I had four biopsy’s every quarter to check all was still the same and the density was gradually getting greater. How many biopsy’s she has will depend on her blood counts and how she is making the different blood components and the percentage chimerism she is or 100% donor. I hope that helps as it can vary from person to person and thier condition. I believe if all is well they like at least four good quarterly results but if you have had issues it could be more for the doctors to be satisfied all is ok. They just want to keep on top of any issue that may arise as soon as they can to save any unnecessary issues. Sometimes after a Bmt or sct it takes a while for the bone marrow new to start functioning completely correctly so you can be topped up with transfusions, playlets, plasma , minerals etc. it can be quite normal.

  • Hi auds

    i was like Dave you have a few , now I don’t have any , I had to have a top up at the beginning , now they do everything by my blood

    I hope her results come back ok , then you can make a fuss for one day

    we celebrate every mile stone it’s a new normal

    i hope to that helen & Dave find ease soon

    love to you all ❤️

  • Hello you lovely bunch,

    I'm feeling like I've had enough of this, I can only lie around. But at some point I'll feel like moving.. maybe every few days. My plan today is to fold a bit of clean washing up. It's disappointing for hubby. I can't really do anything and enjoy it. Pain and blood pressure makes it difficult. 92:45.

    I should get more active and call, arrange to see friends. I'm afraid I'm getting really very boring like a broken record. Any ideas?

    Reading through your recent messages... the bone biopsies stress was more in my head I agree. I have never been one for looking at the numbers and values, I think it can be both positive and negative. Maybe writing this is a little wake up call to have look.

    I just wouldn't think about the biopsy beforehand, pretend it's not in my diary. ..and when it came I told the doctor that I would sing through the proceedure under the sheet. Always amazing grace very slowly and as quiet as a hum. They were fine about it. One told me he liked it cos he knew how much pain he was causing.

    Here in Germany in my uniclinic they do the bone marrow biopsy through a special blood test and no more manual biopsy. I was a bit sceptical initially but they're completely confident about it.

    I'll get off here, just binge watched sarah millican. Laughing does me good.

    This is the way my life is, I didn't plan it, I was very very active till it all came crashing down. I don't want pity. Have you got any good ideas how to spend my time or actually have 'fun' with friends or hubby when I can plan nothing, especially now corona numbers are rising again. Life is so monotone.

    Anyway, I'll get off here and stop moaning.

    My next overnight stay in the clinic is next week, when I'll ask them if my feet is maybe necrosis. It's certainly not just skin.

    I'm really pleased you've got your diagnosis Dave. Are you? What are their plans?

    Take care all of you. Thanks for being there.

    Love

    Helen

  • Hi Helen,

    you sound a bit like me. I today went for my bi-weekly Ecp 2st session of the week, 3md tomorrow but I don’t stay there overnight.

    yes I have my mri tesullt that I have Myositis as I thought I may have now I can understand why my mobility is so bad and why I can’t put on muscle mass. Need to find out more from consultant next Wednesday as to prognosis, also if it is a deteriorating condition, what next steps are etc it was all a bit of a shock even though I half expected it. However it has also given me a bit of worry : anxiety as this has given me something else as well as the gvhd to be cured and it makes we wonder if it can be sorted so I now worry more.

    Helen, I doubt you have necrosis as I believe your skin and feet would be starting to turn blackish. Hopefully you teach a point and turn the corner and things will improve. Can you not get a specialist skin nurse to come out and dress it for you? While I was in hospital being reared for cancer I suffered a pressure sore when I was in intensive care through the nurses not turning me as I was so immobile and ended up with a hole behind the size of nearly a tennis ball. Nurses came and dressed it all the time and it gradually went away it took months and months though. Are you actually seeing specialists in dermatology as surely they must be experts. I do know with gvhd that skin related issues either gvhd seem to take a really long time to heal if you have skin gvhd. I have done 15 months Ecp and some of my hard skin seems like it has not even changed. You are lucky you have the option of Jakavi have you asked if you can try rezurock if Jakavi is not making any difference as this also seems to have some success,


    anyway I must go. Speak to you all soon and hope Audrey, Neaglrgirl and Michelleanne are well.

  • Hi Helen & Dave

    I feel like that at the moment don’t have any energy , I can’t be bothered meeting up with people , I have to go back to clinic on Thursday to see if I have gvhd on my lungs or chest and mouth

    I do things but them I’m so tired for days afterwards , I’m so boring too

    i knit or read and spend a lot of time outside Or we just go to a garden centre for coffee

    dave , I hope they can help you keep strong and safe

    ❤️

  • Hi everyone and thank you so much Dave for giving me such a detailed and helpful understanding of the biopsies that my daughter is having every 3 months at the moment. I suppose it’s only natural to be a bit apprehensive when waiting for the results

    It makes me so sad, Helen and Dave that you are having so much trouble with your skin and consequent mobility. Helen, I know what I have is totally different from the dreadful illness and symptoms that you are suffering, but my fibro can be very debilitating especially when it flares up. The pain and fatigue can be quite overwhelming and I so get fed up having to cancel arrangements.

    I try to keep in contact with my friends - on good days meeting for a coffee, on not so good days maybe a face time call. I’m lucky that I can go out in the woods for a wander which clears my head . I also find doing puzzles like sudoku etc quite distracting. I know it must be hard but on better days , try writing down a couple of things that have lifted your spirits and when you are down, read them over and know that you will get back there . I hope that this helps.

    Michelle, I hope that you are keeping as well as possible. I’m in Scotland and it’s certainly getting chilly! Beaglegirl, I hope that your husband is going from strength to strength.

    ❤️❤️

  • Hi michelleanne,

    Good luck for your appointment tomorrow. I guess they will probably book a lung function test for you to check your lung capacity. I have had a couple of these and luckily was ok for me. I hope yours is just as good and is just a simple infection and not gvhd.

    Auds hopefully your daughter will get some good results back snd hopefully she is 100% donor meaning her cells on the bone marrow has been 100% replaced by donor cells. Don’t worry if it is not 100% yet as the old cells may still be in process of being replaced. It will mean if less than 100% your daughter may have to stay on immunosuppressants for a bit longer. If she has gvhd she will tobably already be on immunosuppressants.


    Helen I hope you are ok but I expect you will be feeling a bit low. Just think only one way to go up. I really hope your feet are getting better, have you managed to see a dermatologist for best treatment options and possibly a nurse to dress the wounds for you regularly,

    I am feeling a bit anxious at the moment as Myositis can be quite a deteriorating condition depending on what type you have. I will not here back till next week from consultant after he has solenoid to rheumatologist with gvhd experience. Codsultant also arranging for me to see hospital ophthalmoscope for mynlurty, gritty eye issues as a result of gvhd.


    all look after yourselves and hope you all keep improving.

  • Hi Dave

    thankyou , I’m booked in for a lung function test tomorrow if needed , I’ve had a X-ray that’s come back clear no sign of infection

    see what is said tomorrow , I’m still on my immunosuppressives , I got a top up to give my bone marrow 100%

    hope you all turn a corner no matter how small

    stay strong , keep positive 🫶🏻

  • Hi Michelleanne,

    Such good news your X-ray was clear. I am so happy for you.


  • hello all,

    We are such a good bunch. I just dropped in to see if anyone had written. Oh my, I'm so grateful for this. Facebook is so public, this of course too but it really feels like something special.

    I just stumbled on the video above and on the mention of spiritual care and wellbeing you all came to mind.

    Michelleanne, I hope they can tell you more soon about the lung problem today. Crossing fingers. We're with you. You made me smile about being boring. Join the club! Last night hubby took me out. I had terrible pain but thought it might do me good, a trip to the petrol station to fill up the tank. I stayed sitting in the car and regretted it. Now that's called a fun night out:D

    Last weekend we visited the city cemetery which dates back to 1630. Highlife:). But with a wheelchair i am grateful for small mercies.

    Dave, thankyou for being there. The mobility issue is really rotten. I think you see the consultant today, i hope it goes OK. We're thinking of you.

    Audrey, Sorry to hear you've got your challenges too with fatigue and all. It's one thing to have it but then trying to function as a caregiver, grandma must be very hard. Can't imagine.

    The video link above was in Facebook, the gvhd site. I'm enjoying it. Thought you lot might too.

    Big hugs all round

    Helen

  • Me again, I'll make it quick.

    I found this from a particularly articulate sufferer on Facebook, a fellow gvhd sufferer. I sent it to the family whatsapp group, and shared it with my local doctor last night. My family found it useful to help understand. My Dr said it's the general level of understanding of most Dr's. My experience is that there's huge disparity between doctors' knowledge.

    Anyway, better get off.

    X

  • Here is the explanation from Facebook by Janice Chabros. 



    I'm 5yrs post SCT. Battled gvhd for 3.5yrs. Been off all meds and no major gvhd flares in the last 1.5yrs. I do have very mild skin gvhd that appears as eczema-like patches on my face, but those are simply managed by 1% hydrocortisone cream as needed.


    The target for drs is to get the patient to homeostasis. Gvhd is basically our own version of an autoimmune disease that can strike any possible bodily system or organ. Much like autoimmune diseases, we can experience remission (aka a virtual disappearance of symptoms). This occurs when our donor derived immune cells finally start to see our healthy cells as friendly and stop trying to kill them. However this is a fragile scenario. Anything that can exacerbate your immune system has the potential to activate gvhd. So an illness or injury could trigger a new flare. 


    The vast number of patients reach homeostasis within 3-5yrs post SCT. The key to this is immunosuppression. The immune cells need to be sedated while they undergo cellular evolution, otherwise the evolved cells will just continue to identify healthy host cells as foreign.  


    There are some patients who are left with permanent damage caused by gvhd, hence why gvhd needs to be treated aggressively and timely. Some patients still have flares decades later, but most do not. However those people will not comment here because they have no reason for support groups like this.

  • Hi all

    had clinic app today , had lots of blood taken , to check percentage of donor as my immune system is low , so they want to find out why , I’ve been given a mouth rinse for gvhd in my mouth and throat and also a small dose of antibiotics

    so see how we go we have random trips out like that , aren’t we a wonderful group I wonder what it would be like us all together in one place 😂

    stay safe ❤️

  • Hello Michelleanne

    I've thought the same thing. Do you want to get the kettle on? And I'll bring the biscuits. What a lovely thought.

    I'm sure the others will find their way to us. Maybe the tea will be cold by then.

    Helen x

  • Hi Helen

    what a lovely thought , kettle on at 3 think we might need a lot of biscuits 😂❤️

  • Laughing, smiling. You warmed my heart. Thank you Michelleanne.

    Yes, lots of biscuits :)

    Any special requests? Crunchy? Fillings? Chocolate? Wafers?

  • Hi Helen

    we have to laugh , otherwise we would huddle in the corner and cry

    my dad always said always look on the brighter side of life

    ginger biscuits and shortbread cos them you can dunk 😂❤️

  • It's true, either laugh or huddle in a corner crying. Ha ha... you did make me laugh.

    So, ..about the serious stuff... the biscuits...I'm with you on the ginger biscuits and love dunking them. They were something I could eat quite early on .. about 9 months after my sct cos they go to mush, I think I shared it with you Dave early on when I was trying anything, remember?. I have always loved them. I like shortbread too but have never dunked it. Shop bought shortbread is the best but the 321 recipe is good too with the generous pinch of salt.

    I'll say night night now.

    How's the eating going Dave? I still enjoy a pot noodle too.

    Audrey can you make your daughter favourite dishes? How's her appetite?

    And you Michelleanne? A cough usually puts me off eating. How's things? Must be hard. Have they been able to tell you any more since your recent tests?

    Beaglegirl, hope you and hubby are doing ok.

    Love to all, night night,

    Helen

  • Hi all

    I raised my cuppa yesterday at 3 for you all and dunked my biscuit 😂

    how’s things going with your daughter audrey has she got her results back

    I’m still waiting for mine , it’s either a bone marrow top up or something else

    I fed up of not knowing what I want to eat

    beaglegirl how’s your husband?

    stay safe ❤️

  • Hi Michelleanne,

    I hope whatever they decide, top up or something else, is good for you. Patience patience. It's desperation but the only thing we have.

    I'm sitting here doing calligraphy with a biro and drawing greeting cards. Trying to make myself feel human. At least I'm not on the sofa horizontal, will be in a minute though.

    Love to all. I'll toast to us all and think of us at the biscuits in the supermarket if I get there again. Very rare occassion.

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