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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Hi Everyone, Hope everyone is doing okay? Just a quick update on my husband they never found out wheat caused the encephalitis. He was discharged about 2wks ago now. He’s doing okay but now has skin GVHD so is starting ECP treatment next Thursday. His count are all up though so he’s Jung’s are going alright. We’ve booked a…
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I stayed nearly all night last night. Finally the registrar came in to say that it’s not a relapse in the spinal fluid 🙏 he is still really confuse and talking nonsense so more tests next week. Thankyou for all your support x
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Hi everyone, I hope your all well. I’m sorry to keep posting but I know how supportive you all are. Please please can anyone reassure me. My husband was admitted on Wednesday as he’s been confused and hallucinating. It’s been going on for 3wks. They have said it could be encephalitis but now they have done another lumbar…
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Hey Everyone, just following on from my last post. I’m a bit worried about my husband. He told me he fed the dogs but all he did was put the bowls down and then put them in the sink 🙈 he’s very confused about things but can remember things like his mothers maiden name etc. I’ve l just started dinner and asked him to cover…
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Hi Everyone, it’s been a while since I posted. I thought I would let you know that my husbands counts having started to come back up and he is now completely off the immunosuppressant MMF. His Hb has gone down a little but apparently this is just due to rubbish bone marrow because of a second transplant. We are hoping…
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hi Everyone, well another kick in the face today. Martins counts are still a little sluggish and the biopsy sample wasn’t a great sample. It’s. Showing 2% blasts remission but due to the bone marrow being abit empty they have booked another in 4wks. I’m terrified that the leukaemia could be in there but I’m feeling so…
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Thankyou so much for everyone’s support. Audrey I’m so sorry to hear about your son. That must of been the most painful thing to deal with especially when your daughter is so poorly. Thankyou Michelle and Helen too. I’ve enjoyed my Saturday out with my horses and dogs. It was so nice to have a huge weight lifted for a…
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For all those that left kind messages of support about my husband following the recent post. We have the results there is NO Leaukamia in his bone marrow it is NOT a relapse!! Love to you all and keep fighting as there is hope and some one upstairs is looking down on us today ****
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Morning, I’m sorry to keep posting but I’m tearing my hair out with worry. Some might have read my post about my husbands levels dropping after his 2nd transplant. I have been looking online I know you shouldn’t but I have read the mycophenolatemofetil can cause anaemia/dry mouth/cough etc and he has all these symptoms.…
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Thankyou for everyone’s comments. I have spoken to the patient support line today and they were so nice but it’s not helped. I’m just having panic attacks pretty much all day and I cannot stop crying in front of him. I feel awful but I keep telling him I can’t live life without him. I pray to god that the results are that…
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Hi Everyone, hope you are all well. Sorry to keep jumping in on your posts but reading them you have been all through so much and are so supportive. Please I need a lot of support. I’m sorry if this upsets anyone but my word is literally falling apart. My husband has had a second transplant Nov 22 and his levels have never…
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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