Hello Auds, thank you for sharing your daughter’s good news. It’s really good to hear. Given ne a boost too. You’re right, she’s still on , we’re all still on, our long journeys. So good to hear, thank you.
Thanks Michelleanne too!
Do please feel free to post whenever you have a need, however small.
Best wishes
Helen
Hi Audrey, thanks for that update, things do sound like they are becoming more positive. I was put on steroids to treat my GvHD and that is one of the main things that kick started my recovery. The steroids made me feel hungry and helped me get my appetite back, which in turn gave me some strength. I hope the same can be said of your daughter and it sounds like you are already seeing some improvement.
Remember also that a little bit of GvHD can be beneficial as it also works against the disease, so it can be ‘Graft Versus Disease’ too so it’s not necessarily a bads thing as long as it is kept under control, which the steroids will hopefully do.
Great news on the chimerism being 100% too. I remember feeling really positive when I was told that mine was 100% donor and it was a good sign that the transplant had grafted fully. It can sometimes drop a little but don’t get disheartened as not everybody achieves 100% in the first place.
I’m really glad you’re finding the support from the forum useful as that is what it’s all about. I wish it had been around when I went through my treatment and transplant 10 years ago as there were times during my recovery that I felt alone and isolated from people who understood what I was going through. We’re all here for each other, no matter what stage of our transplants we are at.
Please keep the updates coming. I can tell from the activuity on this thread that between youu, you are all helping each other. Lets keep it going.
Regards,
Steve
Hi Steve
it is very helpful , to hear how people are coping and have coped , the specialists are amazing people and we are so lucky to have them
reading what other patients have gone through has helped me so much , in a way that drs can’t , and I’m very grateful for that
please keep in touch everyone together we’ll get there
best wishes
michelleanne
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
Hi Beaglegirl
I’m so sorry that your husband is having to have a second transplant. I can just imagine how worried you are but try to focus on the fact that they wouldn’t be doing a second transplant unless they felt that your husband will benefit from it.
I think everyone is different and my daughter has had a very rough journey. She was very unwell when she had the second transplant. However, we’ve just heard that after 5 months in hospital, she is being discharged tomorrow or Tuesday. She still has a long way to go but I’m hoping that being at home and seeing her wee boys will help her recovery . My daughter is 40.
I really hope that your husband’s recovery goes smoothly. This group really helped me get through some dark moments . Everyone here ( particularly Michelle ) kept telling me how much my daughter’s team would be working in the background to get to the bottom of all the problems that she encountered and they were!
Its a long, hard journey but try to remain positive and please reach out to this group whenever you need some reassurance . There are wonderful people here. They have their own struggles but will always take time to help you.
Best Wishes
Audrey
Hello Beaglegirl,
Auds is right. They wouldn’t suggest a second sct unless it could work. When you’re in it, I can’t imagine how scarey it must be but a close friend had a second one and 2 years on he’s doing really well, back at work, normal for age/fitness assessment, cycling, putting on weight.. he feels a kind pity for me cos I’ve got chronic gvhd although Ionly had one sct… and it’s just not getting better after 8 months lying in hospital and now 18 months later in all.
I wish you both the best and I’m thinking of you and your hubby. (Auds is great. )
Please feel free to post here.
Best wishes
Helen
Hi Auds, great news about your daughter. I’m really relieved. So good for the boys too. Words aren’t enough. I’m thinking of you all.
Best wishes,
Helen
Hi again,
Sorry. I meant Michelle is great…
“particularly Michelle ) kept telling me how much my daughter’s team would be working in the background to get to the bottom of all the problems that she encountered and they were!”
I get confused with the names here, sorry.
Best,
Helen
Hi all
thats wonderful news audrey , about your daughter coming home , so pleased for you all keep up the good work this is the turn around we were talking about ,
her little boys will be so excited , I know how strange it will be,
hi beagle girl
sorry to hear about your husband , it is a very rough time for everyone , I hope all goes well , this forum is amazing and the people on it , we are all so honest how we are and what we have been through
please keep in touch , everyone, here to help if I can
lots of love & best wishes
keep strong
michelleanne
Thank you so much, Helen and Michelle for your good wishes to my daughter and all the support that you’ve given us. My daughter came back to me to convalesce this evening. She is so weak, frail and thin but I’m hoping being here and being able to see the boys will help in her recovery.
Helen, I’m so sorry that you are having such a rough time with the gvhd. It must seem as if you never get a break and I really hope that the day will come when the gvhd backs off.
im sending you all my very good wishes and I will be here if I can ever do or say something to help. This is an amazing forum! ?
Hi auds21
so happy to hear your daughter is home , I’m sure it will , take all the help you can to help her
I lost over 3 stone , now 2 yrs on ihave regained some of my weight ,
take one day at a time
take care keep in touch
michelleanne
Hello Auds,
I’m thinking of you. A very intense time. Sending positive, calm and kind energy.
Hi Auds, So pleased your daughter is out of hospital. I am following yours and others stories, as I visit my daughter regularly at her home in recovery. Keep updating on progress. It’s a rollercoaster and life changing. This forum helps so much x
Hi babs
hope your daughter is making steady progress, it is a very rough ride for everyone involved ,
it is a new way of life for me too , wish I’d found this forum early
best wishes
michelleanne
Hi everyone . Thank for your kind messages and I hope that your daughter, Babs, is doing well in her recovery . it certainly is a roller coaster journey!
My daughter is home with me until she is strong enough to cope with her wee boys . She’s delighted to be home but is very weak and underweight. I think that she is disappointed that she can’t do more but I’m trying to reassure her that she’s been in hospital for 5 months , her body has been through the mill and it will take time to recover.
Her digestive / bowel problems ( prob gvhd) is causing a lot of discomfort although she’s very uncomplaining. Eating is a struggle and she is trying and I know this will also take time.
Helen, I have been thinking about you and really hope that the gvhd problems will ease off a bit soon.
I’ve learned so much from this forum and I honestly don’t know how I would have coped with everything without all your encouragement and support . I really hope that life will be kind to you all.
our next step is waiting for the result of the 100 day post transplant biopsy. A tense time but just trying to enjoy having my daughter here and focusing on getting her stronger .
lots of positive wishes to all of you and thanks for being here .
Audrey
Hi Audrey, as time goes by the gvhd symptoms will hopefully gradually lessen. Hopefully bit by bit her diet will improve as the mouth and throat also improve but it will be slow as the body has so much to repair after the chemotherapy and replacing the immune system with a complete new one. I left hospital losing weight and once home I gradually put weight on and if she is on a high dose steroid this will also add weight. When you first start to eat it may not be the most healthy of diets I remember the first things I could eat were pot noodles and pies and pasties. Unfortunately your tastes change after a Bmt and your favourite items before the transplant you may not like after. I am 18 months past Bmt and my appetite and tastes are still repairing very slowly. I used to love to eat food and now I eat because I have to and also smaller portions as I cannot eat a lot, however I feel in the background this is very slowly improving as lately have managed to include more healthy options into my diet. It just takes a lot of time and patience and she will get there.
Hi audrey
so pleased to hear you’re daughter is managing at home , I was exactly the same , take one day at a time , we are all at different stages . Don’t expect too much I found my eating habits have changed so much , I eat what I fancy , I lived on soup , ready brek and milky coffee
I still don’t eat a lot , I don’t eat much meat as it still sticks and hurts my throat , I eat more soft food ,no spicy food, and can’t drink alcohol , my husband says I’m a cheap date ? I hope her 100 days results come back ok .
always in my thoughts all of you
best wishes
michelleanne
Hi Dave
I am still the same with my food now after 2years , but I don’t have good tastebuds , with having radiotherapy after having non Hodgkin lymphoma , 26 years ago , then having a bmt for leukaemia so I eat less than a child and only food I fancy which some days isn’t a lot and it’s forced , I’m more a pudding and custard and soft food diet now
best wishes
michelleanne
Hello you wonderful lot. This string of messages has made me smile to read.
I haven’t been home a year yet. Was 8 months post bmt in ghe clinic. I almost crawled up the stairs in tears when I arrived.
My diet is amazingly exactly the same as yours, really wierd, soup, ready brek, porridge … and I even fantasised about a pot noodle recently. I put weetabix in a bowl with milk, 1 min microwave and then they’re mushy enough, with a good dose of honey and a dash of cream, I can eat that. I don’t have appetite, I just try to eat often cos I rarely manage more than two desert spoonfuls of anything. My aim is not to lose weight. Cheese and fruit has been good, prawns, 4 or 5 with lots to drink.
I hope it’s not too frustrating Auds, I expect you want to prepare things for her and get her well with lots of good healthy food, but her needs will probably be very different.
Give her our warmest wishes and tell her she’s on track from the sounds of things. It’s been helpful for me to share this with you all here.
Very best of luck to you, Steve, Dave, Michelleanne , Auds, you’re great.
Dave, I’m with you on Pot Noodles! They become almost a staple part of my diet during my recovery, along with thick soups, curries with rice, weetabix and porridge, rice pudding and other soft foods. I also got a taste for energy drinks, but thankfully that taste has waned and I don’t drink them any more. Pork scratchings and midget gems were also favourites and still are.
My taste definitely changed as a result of the chemo and transplant, and I even went off chocolate bars which I normally love. Taste does recover though and eventually you should get it back and enjoy all the things you used to before treatment.
It’s a case of finding stuff you like the taste of for the time being and keep going with those until you can tolerate other things. Eat as much as you can and whenever you can, even outside normal meal times. My view was that it wasn’t too critical whether I was eating stuff that was good for me, just the fact that I was eating something to give me some sort of nourishment.
Steve