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Auds21
Comments
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Hi Babs. I hope that your daughter is making progress and that the additional donor cells have helped to improve her bladder issues. my daughter is still in hospital( over 4 months now). It’s a very bumpy journey. They are removing the catheter with the flushing system tomorrow. Not sure how that will go. Her chest…
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Hi Babs Thank you so much for replying to my text and I am so sorry that your daughter is going through such a rough time and that you too have so much worry. it’s been about 3 months since my daughter’s SCT and it’s been such a worrying journey. Has your daughter recovered from the BK virus or is she still fighting it? My…
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Best Wishes Audrey ps - I have been telling my daughter about our conversations .
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Hi and thank you both so much for taking the time to reply and share some of the very rough times that you had . It is wonderful to hear how much you have come on from those dark days . my daughter had the first cell infusion ( from the trial ) today. She has been very exhausted and tired all day. I’m hoping that she will…
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Thank you so much for your encouraging words, Michelle and for sharing some if your journey. It really helps me to know that through all the adversary, you are enjoying life, albeit a different life than before. i will let you know how my daughter gets on with the trial. im so glad that you are in the hands of fantastic…
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Hi Michelle just thought I’d give you an update on my daughter’s health. She is still in hospital and has been having a pretty rough time. The chest infection is very slowly showing some improvement. She has a bladder virus - the BK virus which is causing a lot of trouble as she has a catheter which is uncomfortable . She…
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Thank you, Michelle. The doctor did say that maybe the fluid around the lungs is breaking up and that’s causing the coughing and lack of breath. So perhaps it has to get worse before it gets better. we buried her brother today. Such a hard, emotional day for us all especially my poor girl who couldn’t be with us. I really…
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Thank you so much, Michelle. she had a scary night last night. She has fluid in the lungs and she couldn’t breathe. Needed an oxygen nebuliser . She was brighter today but night seems to be the time that everything flares up. She is having a bladder ct tomorrow due to blood in urine. on the positive , doctor seems happy…
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I so appreciate your encouraging, supportive texts, Michelle and Steve. my daughter has been a bit brighter in herself the last couple of days but still very weak. It’s the lung infection which they are really concerned about. Today her infection markers had gone down slightly and I’m grasping at all the positives. you…
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Thank you Michelle for your supportive text. It’s been a very worrying week as my daughter has been so unwell. She has been told that her lungs are damaged and she will be in hospital for some time. She is trying to eat - today she had some watermelon and a little soup. Unfortunately she passed out in the shower room but…
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Hi Michelle and Steve thank you for your detailed posts about eating during your recovery. My daughter has a feeding tube inserted into her picc line. She had a Hickman line but they changed it to a picc line as they thought that there would be less chance of infection. her counts went up to 1.0 today which gave us a…
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Hello again my daughter is still very ill. The good news is that her neutrophils are at 0.5 . Her doctor has told her that if she had not been so Ill before this transplant that she would now be beginning to feel a bit better. My question is that she is now having difficultly keeping anything down, even water. Michelle,…
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Hi Rachel Thank you so much for your detailed positive reply. Because one of the drugs being given is causing quite severe nerve pain, she is being given Valium which will also be making her feel very tired. She can hardly keep her eyes open. Also , her mouth and throat have flared up and so she had laser treatment today.…
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Hello - me again and I’m so sorry if I’m posting too much. my daughter is being put in Valium today to try and help the nerve pain being caused by one of her drugs . I know this will make her even more sleepy. Her mouth / throat is breaking out but she says it’s not as bad as last time. Shes so weak and what I would really…
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Hi Claire Thank you for your post and also for the very helpful email which I have received . My emotions are all over the place and getting some reassurance and advice does help. I’m sure that the numbers you have given me will help a lot. Thank you again. Best Wishes Audrey
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my daughters infection markers have gone down considerably today . One if the drugs that she was on has caused acute pain in her lower back but they’ve put her pethidine which seems to be helping. I think and hope that she’s a little brighter today though still very sleepy.
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Hi Michelle and Steve Thank you for your compassionate and supportive texts. They are really helping me at this difficult time. my daughter had a slightly better night . They are taking her off the oxycodone which hopefully will help. She sounds a little more coherent. your words about the chest infection help, Steve.…
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ps - I’m not sure if she’s on steroids. I don’t think so but will ask her tomorrow. Best Wishes Audrey
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Thank you so much for your reply Michelle. our lives are a nightmare just now. My younger son was knocked down and killed at the weekend. I had to tell my daughter as she struggles with her illness.
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Hi Today we have been told that the chest infection that my daughter had before her transplant ( 6 days ago) is worse. They are going to give her medication to stop it spreading and hope that by day 17 post transplant when her immune system starts to work that it will destroy the infection. They believe that the sore mouth…
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Thank you so much for your detailed and positive replies, Steve and Michelle. i know that everyone is different but you have reassured me that what my daughter is going through might be expected . She is just 5 days post transplant. She is very sleepy but today she did not feel quite so nauseous. I will keep you posted and…
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Hi Rachel. Thanks for your detailed reply. I will contact the patient services team. Best Wishes
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Thank you so much for your kind supportive comment, Steve, Rachel and Michelle. my daughter was doing so well at 100 days post transplant. Then she began to deteriorate . This was after her first covid jab and the specialists think that this could have caused the rejection of the transplant. my younger daughter is a half…
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thank you for this post. My daughter’s graft has failed and we are devastated. She is facing a second transplant and your text has given us hope. It’s such a difficult time and every positive post helps so much .