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Beaglegirl
Hi Everyone,
Im so sorry to be posting here but I know that you’re all really lovely and supportive! My husband is in hospital again. I had a phone call at 5am this morning to say that security was called as he had become aggressive. He is hallucinating and being really nasty to staff. They have done another lumbar puncture as they have found white cells and protein in it. They are hoping it’s an infection but could be aml relapsed in the central nervous system. Please I need a miracle and some reassurance. I have no one with me and im absolutely heartbroken and sick with worry waiting for the results. He’s currently fast asleep thank goodness x
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He’s not coming home as his Hb is now 69 WBC 1.5 and platelets 28. His potassium is low too. I’m absolutely terrified as to what is happening and cannot get to speak to anyone.
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Hi Rachael, He was admitted again on Thursday as high temp and vomiting. An infection again! Hopefully coming home tomorrow all being well. His Hg after transplant was good then slowly going down I think it hovers around 80-90. They said they don’t want to do a BMB as they don’t know what to do if they find anything in the…
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Hi Helen, Thankyou so much for your reply. that’s exactly what they said to us. They kept saying non covid!? He’s been re admired this morning as his temp went to 39 and kept blacking out. They say it’s esbl. His platelets have gone up 57 but his HG has gone down from 93 to 82. It’s so hard not to worry about what it could…
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Hi Everyone , sorry to jump on this post. Hope you are all doing well. I’ve just seen Auds that your daughter has been up and down after a 2nd SCT. My husband has also had a 2nd sct in No. 22 Would you mind me asking what your daughters levels were? As his has been slowly going down since April although he did get…
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Hi Suedb, Sorry to hear about your dear husband. When you say his transplant has failed do you mean that his chimerism has dropped? I’m wondering if he would be able to have DLI? As I know someone who this happened to and just over a year after received topup cells from the donor. If not I think you should ask his medical…
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I’ve joust spoken to the nurse this evening and she has said his neutrophils have gone from 1.6 to 0.4 and his white count has gone down to 1. I’m absolutely beside myself thinking it’s relapse or am I not thinking straight and it’s due to infection. Please can some help me x
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Hi Everyone, Helen I’m sorry I haven’t replied sooner! He’s doing okay his kidneys are up and down but apart from that hes down to one day a week for clinic. The only worry I have is the doctors have told us that they do not do bone marrow aspirates anymore. However, he is 100% donor and levels are up and down but they…
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Hi Everyone, I hope you all had a wonderful Xmas and new year. My husband was able to come home and spend Xmas with me and the dogs. However, his clinic appt showed his liver levels were high again and was told he might have to be re admitted on Friday. Well the liver went from 200 to 900! So he’s back in and after…
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Thankyou for all the support! The liver biopsy has come back. He has GVHD of the liver and iron overload too (haemachromotosis) he might be able to come home for a few days over Xmas but his consultant said he needs a blood transfusion as he’s a bit anaemic Hgb 74 is this normal after a transplant?
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Hi Dave, Thankyou for your advice. He’s on cyclosporine for anti rejection but have now put him on steroids. He has no problems apart from his skin and eyes are very yellow with jaundice. He manages to eat a kfc bucket for one as the hospital food is vile 🤮 so the doctors said if he’s eating it wouldn’t be gall stones. I…
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Hey Everyone, just a quick update. My husband is +22 post second transplant and the doctors have seen him this morning and they have said they will be removing his line as it might be causing problems as they can’t find the source of infection. His neutrophils or white blood cells have dropped again so they said they will…
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Hi Audrey, I’ve been following your story as my husband has just had his second transplant and so worried about the future. Can I ask how old your daughter is? x
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Morning, I’ve been speaking to Rachel at AN who is amazing but rather than keep pestering her Im wondering if anyone can relate? My husbands do in as are slowly coming up but Monday the day of his bone marrow biopsy his HB dropped normally around but 65/70 but was 56. He has suspected gout so might be that but I’m not too…
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Hi Colin, Thankyou for your reply. He’s still in hospital and currently day 19 after FLAGIDA. He hasn’t lost his hair yet and coming home a few days a week for an hour or to for his own sanity. He feels absolutely fine so believe it’s not working. Could I ask what treatment you had and whether you got remission with your…
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Hi Steve, I’ve already been referred to the support team but I’ll be honest it isn’t helping. Now after this blow I’m feeling very low and I can’t hold on to any hope and just keep thinking the worst. My husband is very much doom and gloom as the nurses are really in supportive although he doesn’t like to speak to anyone…
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Thankyou Rachel I’ve just emailed asking if I could call. It’s proving so difficult to speak with anyone and I can only go in to visit an hour per day. I’m feeling really worried about not knowing what is going on. My husband is being told things but he isn’t taking it all in as he’s so upset and worried.
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Thankyou Steve sorry to post again but I’m desperate for answers so clutching at straws and know really I should t be looking on fb. I’ll try and speak to someone at AN. Thanks
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Hi Rachel, We have spoken with the doctors yesterday and he starts his chemo this morning. It looks like it is not his original bone marrow coming back but his donor cells that have the AML. He will be having Daunorubicin-and-Ara-C-Cytarabin to try and get remission then more before hopefully finding a second donor. He is…
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Hi Sally, Just been reading your blog bout your second transplant.Would love to know how your doing? My husband is waiting for a second transplant also
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Not sure if I can be any help but my husband is also waiting for his second stem cell transplant. He was diagnosed with MDS into AML and struggled to get remission. He went on a clinical tria and he got remission and his stem cell transplant in 2005. We were told he relapsed over two weeks ago now and waiting for him to…