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Rachelj01
Comments
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Hi Chris I'm 4 years post, I have asked before how long I will be on penicillin and to date the answer has been 'for life'. I recently had a consultation and there was no mention of coming off now for in the future. Most likely it is dependent on personal medical history and progress. I've advise waiting to see your…
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Hello Mel Welcome to the forum. It sounds as if you and your husband have had a very difficult time over a number of years. How are you feeling about the forthcoming SCT? Thinking of the two of you at this challenging time. Rachel
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Hello Steve I’m pleased to report that in general I’m coping well, in fact, the greatest challenges I face during lockdown are not linked to my health. Like you I am fortunate to have undergone my transplant a number of years ago (4) and therefore the risk to me is lower. I have also been a vigilant person regards my…
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Morning Jen What a lovely idea. I spent many hours whilst i was being treated watching DVDs, so any form of media i.e. Netflix, Amazon might be a help to pass time. I struggled to read, however the books i did manage to read where generally pretty light easy reads, board games to play particularly the electronic ones which…
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Hi Danni That is very disappointing news, i'm sure there is a very valid reason maybe medical reasons however on the brighter note you are able to donate. I received treatment at the same time as another patient who had a Haplo from her daughter, 3 years on she recently celebrated a significant milestone birthday and is…
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Excellent! Pleased to hear this.
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Good Morning AlfieB I'm extremely sorry to hear that your husband is having a bumpy ride. I am a community champion, i was diagnosed with AML in 2015, in august 2015 i underwent a SCT and like your husband it failed to graft, in Feb 2016 i had a second 2016 which did and since then I've generally been extremely well…
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Hi Gem Good luck with the transplant. It's positive that you feel well, the transplant pre-regime can be harsh so a strong starting position will hopefully mean that you cope well and by our very nature we tend to be more positive when we feel well. I had a SCT 2+ years ago. 116 years post transplant, i trekked the…
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Hello Dannii I didn't have a Haplo however when i was undergoing treatment, a fellow patient did receive a Haplo and i'm very pleased to say that 2+ years on she is doing well and not had any more post transplant complications than I have and i had an unrelated 10/10 match. Another thing to consider is that there are…
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Morning Natalie How wonderful, a trip to Florida. I don't know of any Anthony Nolan guidance. Macmillan have information on their website and a blog with regards travel insurance. Alternatively call the British Insurance Broker’s Association (BIBA) – you can find a qualified and regulated insurance broker through BIBA.…
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Lindsaylou Post my transplant i was quite unwell my symptoms were a very painful stomach which resulted in vomiting, my mouth had an infection which made it very hard to eat and swallow and general feeling of being. I felt very physically weak and knocked about for approximately a week. The hospital will keep an extremely…
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Hello Claire It's been a while since i was post transplant. if memory services me well below are a few every day goals which I recall 1) getting out of the house 2) walking / exercise (time / distance, to track progress) 3) fatigue (time resting, very important to get it and see that gradually it is easing) 4) food &…
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Hello Jane I'm sorry to hear that you are struggling lately. I completely understand your remark about people assuming you are 'better' etc. I found the post transplant period where you look well and are beginning to pick up the reins of your life the most difficult and like yourself i had periods which were difficult. I…
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Generally, i find riding a great way to block out the world and just be at one with the horse (well my version of at one!) Enjoy the riding.
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Hello I'm very sorry to hear that a fellow patient passed away. Not long ago i received similar news and it was utterly devastating and like yourself it brought emotions to the surface extremely quickly. I was diagnosed with AML back in 2015, i had my SCT in 2016 and i would definitely say i'm a more raw personal…
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Neil Welcome to the forum! It's good to have you contributing to the forum. I am a Community Champion, i was diagnosed with AML in March 2015 and under 2 SCTs, thankfully the second graft took. It's great to have move voices to share experiences and offer support. Best Regards Rachel
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Lindsaylou Wonderful news that your husband has a donor and he is doing well. Conditioning treatment does vary depending on the regime they have chosen. Some patients (younger ones) often have Total Body Radiation. Most patients already have Hickman Line, if he doesn't it is likely they will want to put a Hickman Line in.…
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Hello Gem Welcome to the forum! It's good to hear that you have a donor and are well. I was diagnosed with AML in March 2015 and underwent a transplant. It's a very daunting experience and at times lonely so please don't hesitate to use the forum, we are hear to support you and share your experiences. I'd strongly advise,…
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Annabel I am so sorry to hear that your husband has been informed that he needs a Stem Cell Transplant. In 2015 I was diagnosed with AML and underwent a SCT as part of the process to 'cure' me. I'm pleased to inform you that I am in good health and have no regrets about undergoing the procedure. I completely emphasise with…
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Hello Jane I'm Rachel a community champion on the forum and i was diagnosed with AML in 2015. I have had two transplants, unlike yourself it wasn't a relapse which prompted a second transplant but i have had two. Firstly, i'm very sorry to hear that you have to undergo another transplant, i understand how worrying take is.…
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Hello Krista I trust your partner is doing well. I was sent home about a month post transplant and i didn't have a carer, that said i had a network of friends and employed a cleaner all of which was extremely helpful. Each patients road to recovery is vastly different, one common trait is fatigue and the advice i would…
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Hello Garrie I'm an online community champion, i was diagnosed with AML in 2015 and underwent two transplants (2015 & 2016) I'm sure you have oddles of valuable experience to bring to the forum so don't hesitate to comment and open up chats. Welcome. Best Wishes Rachel
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Julsey i'm very sorry to hear about the weight loss and appetite issues, your mother is experiencing. Steve has some very good advice, i personally didn't experience a loss of weight or appetite. I was very mindful of the doctors continual threats of feeding tubes to patients. As a result i continually munched foods which…
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Hi Katy Like yourself post transplant i found myself distrusting my body, i believe it is perfectly normal to have such thoughts. Has any support been offered to you regards counselling? I would highly recommend counseling and mentioning how you feel to your consultant &/ or CNS, whilst their primary focus is the physical…
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Julemy In my experience fluctuations are normal, if there is an on going downward trend then that would initiate investigation, however ups and downs are normal. I had a dip in my neutrophils to 0.2 after having a healthy neutrophil count only the week before. Due to my medical history and being cautious I had to have a…
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Hello Julemy It's heartbreaking to hear what you and your family has been through, I am not a parent but I was a patient and I have elderly parents who I know found and still find it very hard to cope with my diagnosis of AML and subsequent transplant. I can't begin to imagine how tough it must be to stand by as your child…
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Hello When I had pneumonia, I had physio as part of the recovery process. The physio assigned me breathing exercises, I would suggest looking into the possibility of having physio or physio advice with regards breathing exercises to help build up your lung function capacity. Rachel
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Hello John I completely understand and you are not alone, most patients are given very similar odds and frankly it's frightening and sobering. I had AML and was originally given a 20% chance, then having a transplant 50% but my consultant emphasised to me not to focus on the stats. Number one, the first stat includes all…
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Hello Kitty I had a Hickman and a Picc line and was fortunate not to have any infections in them, however I knew a number of patients who did, it's not usual. I can imagine how concerning this is, the doctors have spotted the problem and all being well a good dose of anti-biotics will sort it out. Don't forget that your…