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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
Comments
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It’s good that you have family that can help. I have my mum,dad and brother. Martins family are any help.His mum hasn’t seen him since he was a child and is always interested in herself and his brother and sister in law never came to visit him once since his last transplant. Families eh? They say you can’t choose them 🙈 I…
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Im so sorry Dave it’s sounds like your having a really tough time. Martin stared ECP treatment that’s why he had the line put back in. This is another thing I think about as they grew 2 bugs off the line that day too. Can I ask how old you are? Do you have any other family to support you at all? Let’s hope you can get the…
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Hi Michelle and Dave, Thankyou for your support. Im just so lonely and scared. Im still not out of bed and all I do is keep checking messages and emails for anyone who will talk to me. I feel that I’m not alone when I see that someone has replied on here. His that sounds sad as **** as I know Martin would call me a weirdo.…
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Hi Everyone, it’s proving very difficult to keep going. I’m still struggling to accept that if the doctors said give him daily GcSf this wouldn’t have happened. He never had many and they worked. It’s going around in my head 24/7. The pain is getting worse as I will never be able to hug him or kiss him ever again. That’s…
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Hi Helen, Thankyou for your support. I m finding I’m getting angry at those who are surviving and keep asking why Martin. It seems to be getting worse. The pain is unbearable and I feel so so alone. My friends message me sometimes on Facebook but they have their lives and are too busy to speak to me. I feel so needy and…
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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…
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Hi Pauline, im in the same position. I lost my husband last week. I’m not dealing with it very well and find it hard for others to understand. I’m here if you ever want a chat. Not sure if I’d be any use but I’m here x
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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…
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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…
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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…
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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…
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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.…
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Hi Helen, Michelle and everyone else, we got our Xmas present yesterday early. The results came back as the consultant rushed them through and bless her rang on the way home from hospital. He is leukaemia free!!!! We cannot believe it but can now have the best Xmas ever. I even was treated to a raki treatment as his CNS…
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Hi Everyone, I’m coming on here for some support as I’m really struggling today. Please please help me. My husbands neutrophils have gone from 0.6 to 0.2 and white cells from1.2 to 0.9. He is just over 12mths post transplant and has had a bone marrow aspirate this afternoon. I’m really losing all positivity as he says his…
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Hi Everyone, I hope everyone is doing well? I’ve been thinking of you all. Sorry I haven’t been on for a while as we have had an awful lot going on. My husbands skin GVHD has flared up and he has been having ECP treatment. Due to issues with the nurse they have been struck off due to some alarming issues he has not…
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Hey Everyone, I’m sorry for not replying as I haven’t been able to do much. Martin has been re admitted due to the same kind of problems as last time. He was doing really well his counts were going up, he started his ECP. However, he started getting confused and falling over quite a lot. He’s been in since last Wednesday…
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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…