Hi Audrey, just some info for your daughter... when I was briefly in rehabilitation, the psychologist gave a seminar and said something which amazed me... probably only from his anecdotal experience but he's worked for years in haematology onkology ... apparently fighters have a better survival rate.
It's good that your daughter is resisting what's going on if it's a show of fighting it , but maybe she could be Kinder to herself and accept it at the same time. Otherwise she's using lots of her energy against herself. Acceptance of how it is helped me relax and stay positive. The nurses seemed to think I was resilient which surprised me.
I hope you have a good therapist. There was one who made visits on the ward in my hospital which was my saving grace. I wouldn't be here now if not for her.
Sorry, I seem to be not very focused in my message, I hope you can work out what i mean. It is meant constructively.
i totally agree that having a positive attitude does help , and having someone to talk to really helps , but it still is very hard
the site really helps me because we have and are going through it
audrey I was exactly the same my pic was changed to a Hickman line , let her cry , has the hospital got someone she can talk to , I still cry and get very frustrated ,
hope she feels brighter today you are always in my thoughts keep strong
I think you are both so strong and positive and you both don’t know how much your supportive texts are helping me during this difficult time . Thank you both so much for taking the time to reassure me when I know that you are both struggling but also that you have such positive and determined attitudes .
I think my daughter was a little brighter today. I will be in visiting her tomorrow and will be passing on your advice. You are right, Michelle, this site is invaluable to patients and loved ones alike. I’m sure that you do get very frustrated at times but then pick yourself up and face a new day.
im sending you both lots of positive thoughts and hugs .
A bit brighter, .. it warms me to here that. A little ray of sunshine through the clouds.
For me too michelleanne, I don't know how the chemistry works but it helps me too. Maybe it's the togetherness and trust. We're right with you and your daughter Audrey.
this site is a good life line to me , talking to other people who have gone through and their loved ones , I’m eternally grateful to Anthony Nolan trust and the nhs for what they have done , for me and others ,
I hope we all get to living a happy and wonderful life , I hope your daughter feels better soon and her tests come back good news
Thank you , Michelle. Ill keep you posted re my daughter and hope that your health keeps improving along with Helen’s and everyone else who is struggling or has a loved one who is battling this cruel illness.
im sorry that I seem to be posting a lot but it’s such a touch time that my daughter is having.
Her mood is very low. She’s missing her little boys so much. She’s hardly seen them in the last 6 months . I don’t know how I can help her to feel mentally a bit stronger.
She’s waiting for a sigmoidoscopy. There doesn’t seem to be a rush for it and that’s getting her down as they don’t want to treat the bowel inflammation until they know what’s causing it.
I hope everyone here is managing to stay as positive as possible and thanks again for all the support .
Listening to your daughter and just acknowledging and accepting her problems and feelings is already a huge gift to her even though it feels like nothing. It's validating and loving.
We can't change things, if we could we wouldn't be here on this blog.
I'm puzzled that they're taking their time because they did with me too. I had gvhd of the bowel and it took them forever to diagnose it. I was in nappies with a catheter for months and also suffered from malnutrition until they realised what I had and started to address it. I still find it strange.
So sorry to hear that about her boys. I have no suggestions there.
We're with you Audrey, don't worry about posting a lot. Maybe I/we can't reply, but if it helps you, do it.
i understand where you are coming from , I never saw my husband and family for 8 months or a visitor because of covid ,
i used FaceTime on my iPad or phone everyday so I could keep in touch , give me something to look forward and to see our grandchildren
the doctors will be discussing her treatment behind the scenes , have faith in them , I know it’s hard , hope she’s letting the staff how she feels , they do listen or you could
if it helps keep messaging I will always answer and help if I can
Another rough day for my daughter. She has been very nauseous for a couple of days, extremely tired and generally unwell. The doctors are taking her off a couple of the meds that might be causing her feeling so nauseous.
Helen, it sounds as if she could be suffering from gvhd of the bowel. Everything is passing through her and she can’t face eating. I’m hoping that it is this , as hopefully they can treat it. As with yourself, it seems to be taking forever for them to decide if this is the cause of her symptoms.
I also agree with you, Michelle, that her team will be and do work very hard to help my daughter .
I find it most hard when she is too unwell to call . Also I’ve picked up a cough / husky throat so can’t risk seeing her until this clears up.
i hope that if anybody needs reassurance and help either for themselves or a loved one that they will use this wonderful site.
Thank you to everyone who is keeping me calm and hopeful that my daughter’s symptoms are all part of the illness and given time , can be treated .
To treat my gvhd bowel they prescribed jakavi, ruxolitinib is the active ingredient. I'm now, 18 months later , on myfortic and jakavi. I take lactase , the enzyme, twice a day, cos the jakavi is made with lactose and not ideal for lactose intolerance like me.
Thanks for your support too Michelleanne. We're with you and your daughter Audrey.
i just want to give you a happy update about my daughter .
They started her on steroids a couple of days ago and the improvement has been wonderful. She had the sigmoidoscopy yesterday. They think that she has colitis and the steroids are helping as well as if she has some gvhd they will help that too.
she also got the fantastic news that her sister ( who was a half match ) - well her cells are now 100% the new cells . They are going to be playing about/ adjusting her meds for the next few days and if all goes well, there’s talk of her getting home.
I know that this is still a long bumpy journey but this news has given us such a lift.
I want to thank you so much for all the support, encouragement and empathy that you have given me during low times when I thought I was going to lose my daughter.
I am always here to hopefully support others when they need it . This is such a fantastic site for any patient or loved one going through such a severe illness.
I really hope that you both go from strength to strength . I know that it’s not an easy journey but being able to talk and support others really helps . Thank you. Xx
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.
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.
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
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.
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. )
"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!"
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
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! 😊
Comments
Hi Audrey, just some info for your daughter... when I was briefly in rehabilitation, the psychologist gave a seminar and said something which amazed me... probably only from his anecdotal experience but he's worked for years in haematology onkology ... apparently fighters have a better survival rate.
It's good that your daughter is resisting what's going on if it's a show of fighting it , but maybe she could be Kinder to herself and accept it at the same time. Otherwise she's using lots of her energy against herself. Acceptance of how it is helped me relax and stay positive. The nurses seemed to think I was resilient which surprised me.
I hope you have a good therapist. There was one who made visits on the ward in my hospital which was my saving grace. I wouldn't be here now if not for her.
Sorry, I seem to be not very focused in my message, I hope you can work out what i mean. It is meant constructively.
Hi Helen , audrey
i totally agree that having a positive attitude does help , and having someone to talk to really helps , but it still is very hard
the site really helps me because we have and are going through it
audrey I was exactly the same my pic was changed to a Hickman line , let her cry , has the hospital got someone she can talk to , I still cry and get very frustrated ,
hope she feels brighter today you are always in my thoughts keep strong
best wishes
michelleanne
Sorry for my poor communication and thank you Michelleanne for putting things better.
Audrey, I'm with you and your daughter. It's terribly difficult, I appreciate that. I'm sending trust and kindness,
Helen
Dear Michelle and Helen,
I think you are both so strong and positive and you both don’t know how much your supportive texts are helping me during this difficult time . Thank you both so much for taking the time to reassure me when I know that you are both struggling but also that you have such positive and determined attitudes .
I think my daughter was a little brighter today. I will be in visiting her tomorrow and will be passing on your advice. You are right, Michelle, this site is invaluable to patients and loved ones alike. I’m sure that you do get very frustrated at times but then pick yourself up and face a new day.
im sending you both lots of positive thoughts and hugs .
Best Wishes
Audrey
Hi
pleased to hear your daughter is a bit brighter today , pleased all this helps you , it helps be a great deal keep strong
best wishes
michelleanne
Hello Audrey,
A bit brighter, .. it warms me to here that. A little ray of sunshine through the clouds.
For me too michelleanne, I don't know how the chemistry works but it helps me too. Maybe it's the togetherness and trust. We're right with you and your daughter Audrey.
Hi helen
maybe it is , it’s strange that you feel close to strangers , we are right with you everyday,
And I am with you both too, as well as everyone else struggling with this cruel illness.
This site and all the kind, supportive members have been my lifeline on very dark days.
the medics think that my daughter now has colitis. More tests tomorrow.!
I hope that you have some better days soon, Helen and that you, Michelle, have even more positive days to come .
Hi audrey
this site is a good life line to me , talking to other people who have gone through and their loved ones , I’m eternally grateful to Anthony Nolan trust and the nhs for what they have done , for me and others ,
I hope we all get to living a happy and wonderful life , I hope your daughter feels better soon and her tests come back good news
Thank you , Michelle. Ill keep you posted re my daughter and hope that your health keeps improving along with Helen’s and everyone else who is struggling or has a loved one who is battling this cruel illness.
Hi audrey
please do , I hope things start to get better and she turns the corner for your daughter and everyone who is struggling best wishes
Thank you, Michelle.
im sorry that I seem to be posting a lot but it’s such a touch time that my daughter is having.
Her mood is very low. She’s missing her little boys so much. She’s hardly seen them in the last 6 months . I don’t know how I can help her to feel mentally a bit stronger.
She’s waiting for a sigmoidoscopy. There doesn’t seem to be a rush for it and that’s getting her down as they don’t want to treat the bowel inflammation until they know what’s causing it.
I hope everyone here is managing to stay as positive as possible and thanks again for all the support .
Hi Audrey,
Listening to your daughter and just acknowledging and accepting her problems and feelings is already a huge gift to her even though it feels like nothing. It's validating and loving.
We can't change things, if we could we wouldn't be here on this blog.
I'm puzzled that they're taking their time because they did with me too. I had gvhd of the bowel and it took them forever to diagnose it. I was in nappies with a catheter for months and also suffered from malnutrition until they realised what I had and started to address it. I still find it strange.
So sorry to hear that about her boys. I have no suggestions there.
We're with you Audrey, don't worry about posting a lot. Maybe I/we can't reply, but if it helps you, do it.
Helen
Hi , to you both
i understand where you are coming from , I never saw my husband and family for 8 months or a visitor because of covid ,
i used FaceTime on my iPad or phone everyday so I could keep in touch , give me something to look forward and to see our grandchildren
the doctors will be discussing her treatment behind the scenes , have faith in them , I know it’s hard , hope she’s letting the staff how she feels , they do listen or you could
if it helps keep messaging I will always answer and help if I can
Hello Helen and Michelle
Thank you for your kind, helpful messages.
Another rough day for my daughter. She has been very nauseous for a couple of days, extremely tired and generally unwell. The doctors are taking her off a couple of the meds that might be causing her feeling so nauseous.
Helen, it sounds as if she could be suffering from gvhd of the bowel. Everything is passing through her and she can’t face eating. I’m hoping that it is this , as hopefully they can treat it. As with yourself, it seems to be taking forever for them to decide if this is the cause of her symptoms.
I also agree with you, Michelle, that her team will be and do work very hard to help my daughter .
I find it most hard when she is too unwell to call . Also I’ve picked up a cough / husky throat so can’t risk seeing her until this clears up.
i hope that if anybody needs reassurance and help either for themselves or a loved one that they will use this wonderful site.
Thank you to everyone who is keeping me calm and hopeful that my daughter’s symptoms are all part of the illness and given time , can be treated .
Best Wishes
Audrey
Hi audrey
sorry to hear you’re daughter has had another rough day , hopefully they will get things sorted soon
I hope people find this site as helpful as we have
you and yours are always in my thoughts and prayers
keep strong take care
To treat my gvhd bowel they prescribed jakavi, ruxolitinib is the active ingredient. I'm now, 18 months later , on myfortic and jakavi. I take lactase , the enzyme, twice a day, cos the jakavi is made with lactose and not ideal for lactose intolerance like me.
Thanks for your support too Michelleanne. We're with you and your daughter Audrey.
Helen
Hello Michelle and Helen
i just want to give you a happy update about my daughter .
They started her on steroids a couple of days ago and the improvement has been wonderful. She had the sigmoidoscopy yesterday. They think that she has colitis and the steroids are helping as well as if she has some gvhd they will help that too.
she also got the fantastic news that her sister ( who was a half match ) - well her cells are now 100% the new cells . They are going to be playing about/ adjusting her meds for the next few days and if all goes well, there’s talk of her getting home.
I know that this is still a long bumpy journey but this news has given us such a lift.
I want to thank you so much for all the support, encouragement and empathy that you have given me during low times when I thought I was going to lose my daughter.
I am always here to hopefully support others when they need it . This is such a fantastic site for any patient or loved one going through such a severe illness.
I really hope that you both go from strength to strength . I know that it’s not an easy journey but being able to talk and support others really helps . Thank you. Xx
Hi auds
thats wonderful news , so pleased to hear that ,it is very hard time for everyone , and worrying You’re daughter is now going on the uphill turn
I’m always here to help if I can it’s my way of giving something back
good luck and I hope everyone goes from strength to strength
keep in touch xx
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