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chelle_16
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Hi Anita My name is Michelle I am a community champion here on the forum, and a stem cell transplant patient. Thank you for sharing your journey with us. Your journey to diagnosis sounds really difficult. Im so sorry you had to endure so much pain prior to getting your diagnosis. Interms of a remission them frame I was not…
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Hello Beaglegirl It sounds like your both facing a challenging time at the moment. It is always a huge knock back to find you or a loved one needs a second stem cell transplant. Especially after 16.5 years in remission. I'm early on in my SCT recovery and disease remission, however there will be others here that can give…
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Hello Audrey I stopped eating a few times and yes it was because my body just couldn't handle it at that point in my journey. I had the support of a dietician who encouraged me trying particular foods or nutritional drinks. I ended up finding my own way to be honest. I had reached a point where I couldn't swallow…
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Hi Audrey You have been and still are going through a very traumatic time. There are no words I can use to ease the pain, fear, anxiety and grief your experiencing right now. The loss of your son whilst also having your daughter receiving Progressive treatment is beyond tough. We send condolences to you and your family. Is…
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Hi Audrey Thank you for your update and sorry to hear that the chest infection has worsened. The hallucinations I suspect I a combination of all the variable you have mentioned. Is she on steroids? I ask this because steroids caused me to have visual and audible hallucinations and is a common side effect if on high…
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Hello Auds21 My name is Michelle I am an online community champion and a stem cell recipient. I resonate with you daughters story. I had my transplant in Jan of 2019 and within the first 10 days I rejected the donor cells. My blood counts where zero and I couldn't hold onto any transfusions. Sleep was an escape much like…
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Hello Popcorn28 My name is Michelle I am an online community champion and a stem cell recipient. I'm here to support patients and families as best as possible before during and after their SCT. I was treated in London so cannot advice directly relating to Manchester hospitals but from my experience when I was in isolation…
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Hello otterfield My name is Michelle I am one of a few Online Community Champions and also a Stem Cell recipient. I was treated for Lymphoma and histiocytosis, so do not have personal experience with Myelofibrosis. However I am aware of a few other patients who use the forum that will be able to share their experiences or…
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Hi Rachel It has been great to read your post and welcome aboard. My name is Michelle I am also one of the online community champions Like you my first SCT failed and I had more than one match. My failure may have been a genetic fault as it failed almost immediately. Pleased to say I'm now mostly donor and I'm now 3 years…
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Hello BL8 My name is Michelle, I am a stem cell recipient and online community champion. My journey was complex post day 0 due to a genetic fault I had meaning my recovery was complicated and required a second transplant. However, when I got the second transplant I started grafting between days 14 and 16. This presented…
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Hi dave My name is Michelle, I am an online community champion and stem cell recipient. I had my SCT in 2019 and 3 years later I still have episodes of extreme fatigue. My SCT was a journey of continuous challenges, Like yourself I was completely wiped off my feet from the transplant more than any other treatment.…
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Moomee, I think it was a genetic fault but I don't know the details. I was mostly unconscious the first 6 weeks. Only remembering minute details like the day I was told it had failed and that treatment would change depending on when and how they would resolve the failure. My original diagnosis had a genetic component so I…
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Hi Moomee Initially I was meant to have my transplant in October of 2018 but I wasn't well enough. My donor cells where frozen ready for when I was able to have the Stem transplant. When I went into graft failure the team reached out to the original donor but they where unable to donate, therefore we spent a large portion…
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Hi Alex I have replied to your other post. Let me know if I can add anything to that post. Best wishes Michelle
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Hi Alex I posted on your previous post a couple of minutes ago. Thanks for creating anew feed. I think there are alot of people who may come up against this question. I certainly did when I started transitioning back into work. im no expert at CVs but can share my experience. When I started looking for work last year after…
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Hi So pleased to read of your success getting onto an IT course. What are your concerns regarding your C.V. ? Best wishes Michelle
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Hi Moomee I'm Michelle one of the Online Community Champions, alongside Steve. Im also a transplant recipient and I have read though the comments and it sounds like you have been going through alot. I have read through the feed and I'm pleased to read your latest post about your husbands MRI results. I wanted to share my…
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Hello Lynne My name is Michelle and I am an online community champion along side Steve and transplant patient. I can empathise with your internal desperation. It sounds as though you are having a very difficult time not just physically but emotionally too. You have taken an amazing step reaching out onto the forum, it's a…
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Hello Alyssary My name is Michelle, I am an online community champion like Steve, and a transplant recipient my self for lymphoma and histiocytosis. I'm sorry to hear of your husbands situation and I can relate to how concerned you must be about the prospect of undergoing such an intense treatment whilst he has active…
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Hello meerkat Thank you so much for sharing your experience, this will provide reassurance to alot of people, myself Included. How are your feeling with the covid symptoms and would you be happy to share your on going experience with the medication? I would be interested to hear how you find it. I am 3 years post SCT and…
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With low Neutrophils comes netutropenic sepsis which is a whole body response to a generalised or specific infection. There is always risk of that being fatal and I can hear that while on GCSF your husband has had higher neutrophil levels but without there is nothing. Which is a huge concern. When my stem cells where…
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Hello Moomee My name is Michelle and I am an online community champion on the forum here to support patients and families through their journeys. I'm so sorry to hear of the difficult time your husband is having and the challenges you facing around it all. Your anxiety is very valid and I wanted to share abit of my story…
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Hi Alex My name is Michelle and I am on of the Online Community Champions, here to support patients and families going through treatment. I am also a patient myself, also diagnosed in 2016. I had poor living circumstances prior to my diagnosis of lymphoma and histiocytosis. Sorry to hear of your hopelessness, I am unsure…
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Hi Steve, You raise a very valid point and it is an underrepresented topic of conversation around men's health too. Thank you for sharing Men most certainly do go through a male menopause, often, referred to as a 'midlife crisis' within society. Hormones drive so many cellular and organ components in our bodies that it is…
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Hi Sarah I haven't heard of this as a major prior requirement or advisory pre Stem cell transplant. Each hospital or team may have different suggestions around optimum health prior to the procedure. The specialist nurses here on the forum may have some information. I didn't have any dental check ups before hand. None of my…
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Hi Laulau Thank you for your post and it is definitely a topic that needs to be discussed. With menopause in general being covered more in the media over the last year there has been small steps towards better understanding. But care still falls short of what it is people require when in menopause for example there is…
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It is amazing you had so many 10/10 matches. There is alot of behind the scenes stuff for Addenbrookes to do including alot of blood work of the donors who have shortlisted. The donors have to have blood tests to ensure that they are virus and infection free, but also to see if they have been exposed to certain infections…
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Hi Sarah It's always ideal to have a back up plan. I can fully appreciate wanting to have a plan that impacts your son in the least possible way, as he is in his vital years of education. There are variables that can change any transplant plans from viruses to changes in circumstances for the donor but your team will keep…
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Hi Sarah Pleased to hear you found some resources that you ordered. They will supply alot of useful information. From what I understand your still in the early stages of your transplant planning. Everyone experiences timing and scheduling slightly different. This is often determined on the severity of illness, in my…