She was diagnosed april 22.O feel so lonley and useless as i cannot help her She had a stem cell transplant on new years eve.. She is so ill and doesnt seem to be picking up…I never imagined for a moment she would have to go through all this.It is horrendous. I Cannot visit as she is isolated.Icannot eat or sleep for worrying about what the outcome could be she is only 37 years old.
Hi Adelaie,
Just to introduce myself. I am Liam, the Patients and Families manager at Anthony Nolan. Thank you for joining the forum and reaching out to the community though posting here This is predominantly a peer support platform, but I wanted to share some of the resources we offer; firstly our our telephone emotional support service, available to both patients and family members Which offers up to six telephone sessions with a professional who has an understanding of stem cell transplants. This might feel appropriate to you at the moment?
Find out more about our Telephone Emotional Support Service on our website: Telephone Emotional Support | Anthony Nolan
Alternatively, you can call our helpline on 0303 303 0303 or email us: patientinfo@anthonynolan.org as well, for any information or signposting for other support, we are here to help.
I’m wishing your daughter well, and thinking of you during this difficult situation.
Liam
Hello Adelaie
Check out the thread:
2nd Transplant and my daughter is so ill
We’ve shared on it for a while and you might find comfort there just scrolling through.
We are with you in your terrible time. We can appreciate you and your daughter’s situation too well. Even if we’re not writing, we send our kindest wishes and compassion.
Helen
Hi Adelaie
Has your daughter received any results yet to confirm the stem cell transplant has worked? You mentioned in a post that she’ll find out soon.
I hope so, and then she can focus on coping with her symptoms.
Sending a big hug
Helen
Should find out if it is successful in the next week or so..
Hello Adelaie
i am so sorry that your daughter is so ill and also that you are going through so much worry. I can empathise so much with you as my daughter had a second stem cell transplant at the end of July. She was admitted, very ill with pneumonia and has had a very rough ride. There were times when we really thought we were going to lose her . However, I had every faith in her medical team and knew that they would do everything possible to help my daughter. She turned 40 two days before her transplant so she’s not too much older than your daughter. She was in hospital for 5 months.
I was like you and found eating and sleeping very hard. This group has been my salvation. Everyone is so kind and supportive and will encourage you when you need it the most.
it must be very hard not being able to see your daughter. I was allowed to visit only because my son was killed in a road accident and they let me visit on compassionate grounds . It was very hard trying to be positive and cheerful with my very ill daughter when I was grieving so much for my son. But I did it because she needed a strong mum when she was at her most vulnerable .
Your daughter will know how worried you are and will fight to get through this challenging illness. The treatment is harsh but necessary. The medics know what they are doing and will fight tooth and nail to get your daughter through this.
im here if I can be if any help to you. I’ve certainly had lots of help and support myself from wonderful people on this site.
Best Wishes
Audrey
Thankyou for your kind words.Im so sorry you have had such a tough time…sorry for your loss.I am finding this group comforting .Is your daughter ok now xxx I have every faith in st james Leeds to get my beautiful girl through this.I know it is harsh treatment but has to be done.She has had severe muccalitus and a terrible tear in her throat and obviously various other harsh symptoms. I struggle to understand why this is happening to a perfectly healthy beautiful and happy girl .
Hello Audrey, hello Adelaie,
I’m struggling myself with chronic gvhd over 18 months after sct.
I’m also a mum of two wonderful adult children. I can’t begin to understand what you are going through. I can only send you two my compassion, kind thoughts and love. You are really doing such a good job, I can’t start to imagine.
Deepest sympathy for your devastating loss Audrey. Remember we’re here for you. You are in my heart.
Helen
So sorry to hear this… so glad i joined this group.So many nice people with kind words …
Hi Adelaide,
Having a bone marrow transplant or a stem cell transplant is a very rough time for patient and also family. Unfortunately mucousitus is one of the most awful parts having gone through it myself, it is part of the chemotherapy pre conditioning to kill all the fast mutating cells in your body that could be cancer and to ensure your immune system is killed in your. Ody before giving you a new immune system. Unfortunately it always hits vey hard everything from your mouth to your back end. You usually bring up blood from your mouth and end up with liquid stools. You then don’t want to eat for a while and have absolutely no appetite and many go onto liquid feeding tubes. You at this time lose a lot of weight and I am afraid to say it does take a fairly long time to recover after this process, but you have to be patient and take one day at a time. It will take some time to repair all the damage from the pre conditioning chemo, repair to ehat the mucousitus has caused and the new immune system which will take a very long time to rebuild. It is a long road and I am sure she will get there with her family behind her. You just need to be patient with her recovery, as she will want to get there but will have to do it at her pace and recovery speed of her body. You will probably find when she does start to eat she will be a very fussy eater and hardly eat anything and she will be like this for a long time. It is normal. It is amazing what medicine can do these days and how the body can repair itself over time. Good luck to your daughter and hope she is not in hospital too long, and on the other hand you don’t want her coming out too soon otherwise she could end up back on again with an infection or something. So again patience is the word and baby steps is another reference used by doctors.
Thanks Dave, your calming sensible words are much appreciated. It puts things in perspective.
My sct was 17 months ago. I’m still on jakavi 10mg 2x a day, and two other immune suppressants as well as lots of other things, but I feel at last, that my body might be getting somewhere. At last , I can eat. It’s really new for me. It’s amazing. I’m very picky but I can eat, really eat. It took all that time and all those treatments. The chronic gvhd has now moved to my eyes, maybe that’ll take a while too, but I’ve got through grade 4 gut and bowel and lungs, so i can get through the eyes. Patience.
Helen
Hi Helen.
so good to hear some progress on the gvhd front it seems rare as we normally have 1 step forward and 4 steps back. I am so happy your gut symptoms have got better. You can eat!! Did it happen suddenly or get better over time? Do you think Ecp helped? I still have appetite issues 19 months out that I still feel a lot of the time I do not want to eat but have to force myself. Quantity is still an issue, but I hope this will improve as time goes on for both of us. My range of food I can tolerate has slowly improved over time. I have just had my 2 days of Ecp and am absolutely shattered even though I have had lots of sleep. However my fatigue levels always seem to be so high. I also feel like my legs are tighter and can hardly walk .I just hope this improves. My body was always very good about sorting health issues in the past but after sct and getting gvhd I seem not to be making any progress. Let us hope your eyes and ankles are next to be rectified.
Hello Dave,
Great that you’ve got ecp. It took a few months for me to feel benefits. At the beginning I felt worse with it. Low mood, extreme fatigue. But I can feel the improvements.
My eyes are getting worse unfortunately. They now have burning sensation, painful.
I think my Appetite improved because of painkiller Pregabalin, and ecp.
Best of luck with ecp. Be kind to yourself.
Helen
Adelaie,
Your feelings are entirely understandable and not being able to visit must make it so much harder.
Obviously everyone’s experiences are different, but I just want to reassure you that it is still very soon after her transplant and the recovery does take time. I had a transplant for ALL in Oct 2015 when I was 39 and there were some real low points in the few months after that but eventually and slowly I recovered. Now I look back and can’t believe it was 7.5 years ago.
I hope your daughter is improving and best wishes for her recovery.
Tony
Hello Helen
I just want to say how pleased I am to hear that the gvhd has began to improve . I know you went through a low time over the Christmas period and so this is very good news .
Adelaide, I would second what Tony has just said. Your daughter is in very early days of recovery and I think it is a hard road for everyone going through this ( and their loved ones ). Your daughter knows that you are there for her and that’s the important thing just now. With your help, I’m sure that she will turn the corner eventually. It’s a very roller coaster journey.
Im sure that all these wonderful people here, who have gone through their own rocky journey, will be if great help and support, just as they have been to me.
Best Wishes
Audrey
Thankyou so much … it really has made me understand more… My girl seems a little better today like you said baby steps and a loving family behind her on her road
Finally after 6 week my daughter is allowed home… They have said that she is doing ok or obviously they wouldnt be allowing her home She still has a tough journey.in front of her and we still have to wait to see if the transplant has been successful..But it is a step in the right direction …
Hi Adelaie,
I am so happy for you and your daughter. She must be doing well. Still early days as you state and her immune system needs to rebuild itself. So best keep away from colds, coughs, pets is always best as well if she can, this will save infections and going back into hospital. Eating for her will also be a challenge. At first it is good for her to get anything down whether healthy or not. I started off with pot noodle and pasties and to this day I still eat them as my gut is still no quite correct yet. Takes a very long time sometimes. Anyway I wish her all the best for as prompt a recovery as possible. Patience is key here as is baby steps.
Thankyou so much ..for your kind words.. i will try get a sleep tonight knowing she is home and in her own bed to re charge x
My daughter has been home since mo day but was admitted again with a water infection then released again.She seems really miserable said it is getting her down… She said today it feels no better but is going into hospital for blood tests today so hopefully she will mention it to the consultant..She is eating a little better though