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2nd Transplant and my daughter is so ill
My daughter has AML and had her first transplant in January. Everything was going well for the first 100days but then she rejected the new cells. Her first donor was 100% match but unfortunately couldn’t donate this time. Her sister who is a 50/50 match is her donor this time. We have been told that it’s a completely different process this time.
My daughter was very unwell even before this second transplant. We were warned that she would be very unwell after the transplant but I’m beside myself with worry .She’s sleeping most if the time, is very nauseous and her blood pressure is very low.
If anyone has gone through this and can give me some positive words this would help so much. I’m beside myself with worry. Thank you for reading. .
Comments
Hi Auds21.
I'm not sure I can offer any assurance that will help directly, but what I can say is that when I went into my transplant I didn't feel at all ready. I was so weak and sick I didn't want it to go ahead and almost asked them not to proceed until I felt better. The reality was that I probably wouldn't have got any better and the transplant went ahead as planned.
The final conditioning therapy I had before the transplant made me really unwell for some time after my transplant and I think that is normal. In the time after my transplant I also slept a lot of the time, was sick, could barely eat, and felt extremely low. For me, sleeping was an escape and helped pass the time. I'd spent so long in hospital and was so weary it was easier to sleep than stay awake and dwell on what I was going through. I'm hoping your daughter is the same.
I'm sure others will tell you their experience is similar, whether it is a first or second transplant. Our bodies have taken some extreme punishment through our treatment and unfortunately it makes us very poorly before we can get better. I can imagine how your daughter must be feeling and I can imagine how hard it must be for you to see her going through it all. I hope that the transplant from her sister is successful and that it kick starts her recovery.
It sounds like you might benefit from speaking to the Anthony Nolan team for some support. They can hopefully give you some independent advice on what your daughter is going through. you can call the Anthony Nolan helpline on 0303 303 0303 9am to 5pm, Monday to Friday (excluding bank holidays), or email them at patientinfo@anthonynolan.org. They may also be able to refer you for the Telephone Emotional Support Service who can help you deal with what your daughter is going through.
I hope this helps in some way, but please seek additional help as necessary. Your daughter is being looked after by her medical team and they will look after her interests, but you must also look after yourself as well.
Best wishes,
Steve
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 Steve experienced, but I also slept continuously for weeks because my body didn't have the blood counts to support the energy I needed to be awake.
In cases when transplants fail or partially fail it is very common for patients to sleep alot. Again, as Steve mentions our bodies are going through a massive trauma interms of trying to accept and rebuild new bone marrow. Be assured that the sleeping is normal and hopefully in time as cells regenerate it will give her more energy. It takes time and everyone's time frame is different.
I waited months for my new cells and was out of it, so to speak, for all of that. I faced constant intense nausea and didn't eat for a very long time, again our bodies are going through so much, food and drink is hard to handle. I was introduced to a variety of 'easy' foods like the beige food group (crisps, bread ect) and this is how I began to eat in the end.
All of what is happening sounds expected, mentally/emotionally she may be experiencing low mood which is common when your going through this, directly impacts sleep and appetite.
Be assured the team is highly experienced and specialised in what they are doing and their are many people who experience similar challenges.
If we can support you through this please continue to post and ask questions.
Best wishes
Michelle
Thank you so much for your detailed and positive replies, Steve and Michelle.
i know that everyone is different but you have reassured me that what my daughter is going through might be expected . She is just 5 days post transplant. She is very sleepy but today she did not feel quite so nauseous.
I will keep you posted and thanks again for your support.
Best Wishes
Audrey
Hi
Today we have been told that the chest infection that my daughter had before her transplant ( 6 days ago) is worse. They are going to give her medication to stop it spreading and hope that by day 17 post transplant when her immune system starts to work that it will destroy the infection. They believe that the sore mouth is being caused by the infection control medication and the pain and nausea relief meds . The palliative team are going to look at other meds for the pain and nausea. She is so sleepy and having hallucinations probably due to the meds that she is on
I am beside myself with worry and hope that the medics will get on top of this.
Thanks for reading.
Best Wishes
Audrey
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 dosages.
I had care from the palliative team for pain and nausea and eventual after some trial and error we found a good combination allowing me the opportunity to rest and recover without too much discomfort.
Are you getting support during this time?
If you need additional support you can always reach out to Anthony Nolan emotional support team at;
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
patientinfo@anthonynolan.org
Best wishes
Michelle
Thank you so much for your reply Michelle.
our lives are a nightmare just now. My younger son was knocked down and killed at the weekend. I had to tell my daughter as she struggles with her illness.
ps - I’m not sure if she’s on steroids. I don’t think so but will ask her tomorrow.
Best Wishes
Audrey
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 there anything we, here, at Anthony Nolan can do to support you and your family during this time?
Best wishes
Michelle
Hi Audrey,
I'm so sorry to hear about your son and send my deepest condolences. I'm sure on top of everything you are going through with your daughter that must be devastating. I can't begin to imagine how you feel and hope you have lots of support around you to help you through this difficult time.
Regarding your daughters sore mouth, I had a similar experience probably about 3 weeks after my transplant and just as I was let home for the first time. I had a really sore mouth, and my tongue turned white and had splits in its surface. It was incredibly debilitating and meant I was readmitted to hospital which put me at an all time low. It turned out to be a fungal infection which my body couldn't defend against, but it was treated with a series of antibiotics and multiple mouthwashes several times a day. It did start to clear up within a few days which made me feel better.
The chest infection will probably be similar and in the absence of her own immune system she will need assistance to fight it in the form of the medication she's on. I seem to remember I was on steroids at various times during my treatment and whilst I don't remember hallucinations, they do have some strange effects.
I hope your daughter is OK, particularly after what has happened to her brother, and hope it gives her a greater determination to get better.
Best wishes,
Steve
Hi Michelle and Steve
Thank you for your compassionate and supportive texts. They are really helping me at this difficult time.
my daughter had a slightly better night . They are taking her off the oxycodone which hopefully will help. She sounds a little more coherent.
your words about the chest infection help, Steve. I’lol be so worried until they get it under control.
Best Wishes
Audrey
my daughters infection markers have gone down considerably today . One if the drugs that she was on has caused acute pain in her lower back but they’ve put her pethidine which seems to be helping. I think and hope that she’s a little brighter today though still very sleepy.
Hi @Auds21 - Claire here from the Patient Services team.
I'm very sorry to hear of everything you are going through at the moment, and I wanted to let you know that I have sent you an email, which I hope is helpful at this time.
As Steve says, your daughter's medical team are best placed to advise re her clinical care at this time - but you are very welcome to call and speak with us here at Anthony Nolan. It's great to hear that she is feeling a little brighter today.
You can reach a member of our Patient Services team directly on 0303 303 0303 (Mon-Fri, 9-5 - excluding Bank Hols), and we could arrange for you to speak with our Lead Nurse Rachel if this would be helpful. If you would like to speak with anyone outside of these hours, I also wanted to let you know that Samaritans are available to contact 24/7 on 116 123.
I hope this helps,
Claire
Hi Claire
Thank you for your post and also for the very helpful email which I have received .
My emotions are all over the place and getting some reassurance and advice does help. I’m sure that the numbers you have given me will help a lot.
Thank you again.
Best Wishes
Audrey
Hello - me again and I’m so sorry if I’m posting too much.
my daughter is being put in Valium today to try and help the nerve pain being caused by one of her drugs . I know this will make her even more sleepy. Her mouth / throat is breaking out but she says it’s not as bad as last time.
Shes so weak and what I would really like to know ( hope ) that most if her symptoms are drug/ treatment related .
the chest infection isn’t getting better ( they did say that it would need the new immune system to fight it ) but they are managing to contain it.
Best Wishes
Audrey
Hi Audrey,
I'm Rachel- Lead Nurse here at Anthony Nolan.
The forum is here to support patients and their families at anytime in transplant so I'm really pleased to see you using it and asking questions to help you gain a better understanding of what your daughter is going through. I'm so sorry to read about what a difficult time the last couple of weeks has been for you and your family.
The positives I'm seeing from what you've posted is that her chest infection isn't worsening, as you've been told, the best thing to get it under control is her own immune system and unfortunately that takes time to mature enough to be useful but the antibiotics and other treatments she's receiving sound to be holding her.
Hopefully over the coming week you'll start to see glimmers of her counts coming up, an overall upward trend is what they'll be looking for so don't be too worried if on the odd day, the numbers don't look quite as good as the day before.
Thinking of you and your family.
Best wishes
Rachel
Hi Rachel
Thank you so much for your detailed positive reply.
Because one of the drugs being given is causing quite severe nerve pain, she is being given Valium which will also be making her feel very tired. She can hardly keep her eyes open. Also , her mouth and throat have flared up and so she had laser treatment today. I think she had this after her last transplant.
I hope that I will soon be able to report that she is doing a bit better.
Thank you so much for your reply. It really has helped.
Best Wishes
Audrey
Hello again
my daughter is still very ill. The good news is that her neutrophils are at 0.5 . Her doctor has told her that if she had not been so Ill before this transplant that she would now be beginning to feel a bit better.
My question is that she is now having difficultly keeping anything down, even water. Michelle, you said that you didn’t eat for a long time. Was it because your body was rejecting the food?
Thank you for reading my concerns .
Best Wishes
Audrey
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 medication because I felt so nausea. Often it coming back up straight away. I had the choice of IV meds for a while which made a difference.
The stress of the whole thing added to the nausea and vomiting. When I decreased the amount I had to consume it gave my body time to calm down. When I was ready I would take a small bite of something plain like a biscuit.
The difficulty with food is that when your neutrophil you have to follow a specific diet and that food isn't that appealing when acutely nausea.
Patience with eating helps. It can be hard as an outsider to see someone not eating at all for weeks or months, trying to be gentle about encouraging food is key.
Leave something on the table I.e. a bag of plain crisps (unopened) rather than offering it, helped me.
I would recommend getting some advise from the team regarding a dietician if your daughter doesn't have one.
Maybe nutritional drinks or alternative might be an option.
Best wishes
Michelle
Hi Audrey, thanks for the update.
That's good news that her Neutrophils are starting to climb and hopefully that means her body can start to fight back on its own though it will need some help from medication for a while.
I can relate to the problems eating and keeping anything down. It's something I went through too and really struggled to eat meaningfully and retain anything useful. I was threatened several times by my consultant with a feeding tube but managed to resist it. I ended up losing a lot of weight and became really weak as a result.
Like Michelle says, I was also referred to a dietician and they put me me on nutritional milkshakes and soups which were easier to tolerate than solid foods.
Anything your daughter can take in, even if she only keeps it down for a while will help and it may be a case of experimenting to find something she can tolerate and operhaps find something that she can nibble on or take in small amounts throughout the day. The soups and shakes did help me and I managed to stave off the NG feeding tube. A feeding tube may be the back up plan but for me I didn't like the thought of having a tube up my nose and into my stomach feeding me. I'm sure others can comment on how that actually is in practice.
Evene when I went home to recover I continued to struggle to eat and keep things down and my wife used to become quite irate with me, but it was really hard to eat when you knew it was more than likely going to come back up. I continued on shakes and soups and things like weetabix, pot noodles or other soft foods. It took a long time for my appetite to recover and it was eventually being put on steroids to treat GvHD that really gave me a kick start.
I hope seeing her counts start to climb is encuraging for her and you, and that the trend continues upwards. As Rachel has said previoulsy there may be blips from day to day but fingers crossed her counts continue to generally climb.
Best wishes,
Steve.
Hi Michelle and Steve
thank you for your detailed posts about eating during your recovery.
My daughter has a feeding tube inserted into her picc line. She had a Hickman line but they changed it to a picc line as they thought that there would be less chance of infection.
her counts went up to 1.0 today which gave us a boost. However, she is so ill. They are going to x ray her lungs tonight as the infection isn’t clearing. Her little boy starts school tomorrow and it is so hard for her to be so ill, miss the wee boy’s first day at school and also mourn the death of her brother. No wonder her mood is very low!
She is retaining fluid and is quite puffy.
Your replies and all the support from this group really helps so thank you.
Best Wishes
Audrey
Hi , Audrey
I went through the same during and after my transplant , I had a tube in my nose down into my stomach , I slept a lot and a very high temperature ,once they got my meds right .everything changed and turned a corner , I enjoyed drinking ready made creamy iced coffee , and my husband would bring in what I fancied ,I still eat little and often it was like been pregnant again , I hope this helps best wishes to you and you’re family take care
michelleanne
Thank you Michelle for your supportive text. It’s been a very worrying week as my daughter has been so unwell. She has been told that her lungs are damaged and she will be in hospital for some time. She is trying to eat - today she had some watermelon and a little soup. Unfortunately she passed out in the shower room but by the time I arrived to see her she was quite chirpy. It’s such a roller coaster ride at the moment. My stomach is permanently in knots . Your encouraging texts do help so thank you.
Best Wishes
Audrey
Hi audrey
hope things are a little better this week , that was a regular thing for me , I had to have nurses take me for a short while , I would have Starbucks drinks of cold ready made coffee , milkshakes and icecream , then I lived on cream crackers .
it is a very hard time a lot of ups and downs , I still take everyday as it comes .
take care best wishes
michelleanne
Hi Audrey,
If it's any comfort I went through a phase of passing out and real weakness. I couldn't even stand long enough to get weighed without collapsing and I passed out on two occasions whilst I was having chest x-rays, even whilst I was sat in a chair one time. I had various tests including MRI's EGC's and numerous blood tests but no particular reason was established. The consclusion was that I was just so weak because my body completely lacked energy due to poor nutrition.
Things did pick up when I was able to start eating more, so it's good that she is eating a little. Small amounts of anything she can tolerate regularly will help. Literally anything she can eat will help and liquids such as milkshakes and soups may be easier to take.
It certainly is a roller coaster, particularly in the early days, but I'm hoping she soon starts to turn the corner and things will pickup.
Hang in there.
Steve
Hi
I was exactly the same , I had my ecg in bed because I was so weak , my temperature was very high 40 plus spent time in intensive care & 7 months in hospital without seeing my family because of covid .
but I have a wonderful team at freeman’s hospital that pulled my through and still keep me going , they tell you how hard it’s going to be but you can’t imagine it
my thoughts and prayers are with you , and I hope your daughter turns the corner soon we’ll fight together
michelleanne
I so appreciate your encouraging, supportive texts, Michelle and Steve.
my daughter has been a bit brighter in herself the last couple of days but still very weak. It’s the lung infection which they are really concerned about. Today her infection markers had gone down slightly and I’m grasping at all the positives.
you have both been through the mill and thank you so much for taking the time to share your experiences with me. It really helps to hear that you’ve gone through similar experiences and come out the other end.
I’ll keep you posted.
Best Wishes
Audrey
Hi audrey
great to hear you’re daughter is a little brighter and her markers are coming down , keep strong
michelleanne
Thank you so much, Michelle.
she had a scary night last night. She has fluid in the lungs and she couldn’t breathe. Needed an oxygen nebuliser . She was brighter today but night seems to be the time that everything flares up. She is having a bladder ct tomorrow due to blood in urine.
on the positive , doctor seems happy with her neutrophils ( well over 1 ) .
they’re still working in getting rid of the fluid but I am very worried about her breathing. It just seems to be one thing after the other.
thank you so much for your support. I really appreciate it and hope that you are keeping as well as possible.
Best Wishes
Audrey
Hi
Audrey I went through exactly the same , it is a awful time , my husband says he feels so helpless , I hope the ct scan comes back ok .
hopefully this is the turning point for the infection keep strong
best wishes
michelleanne
Thank you, Michelle. The doctor did say that maybe the fluid around the lungs is breaking up and that’s causing the coughing and lack of breath. So perhaps it has to get worse before it gets better.
we buried her brother today. Such a hard, emotional day for us all especially my poor girl who couldn’t be with us.
I really appreciate the support that you are giving me .
Best Wishes
Audrey