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
Hi
audrey
you are very welcome , I’m pleased it helps , I wish I had know about the forum before , it helps a lot talking to people who have gone through it .
so sorry to hear about you’re son , it’s a very hard time for you, hopefully you are turning a corner
best wishes
michelleanne
Hi Audrey
how’s things going , hope all is ok
michelleanne
Hi Michelle
just thought I’d give you an update on my daughter’s health.
She is still in hospital and has been having a pretty rough time. The chest infection is very slowly showing some improvement. She has a bladder virus - the BK virus which is causing a lot of trouble as she has a catheter which is uncomfortable . She is very weak as she has not been on her feet for so long. She’s now been in hospital about 15 weeks . Her mood, which is usually good , is very down. No wonder ! I wish I could say or do something to help. Along with her partner, I’m allowed in whenever I like which is great. She’s starting on a new trial for the BK virus tomorrow and I so hope that she gets the real thing and not the placebo.
Im wondering if you or anyone else was as weak ( no appetite ) for so long and managed to get home and function again?
Thank you for all the support and I hope that you, Michelle , and anyone else reading this is doing well.
Best Wishes
Audrey
Hi audrey
i spent 7 months in hospital during lockdown , I couldn’t have any visitors , things were touch and go a few times
I couldn’t eat I lost so much weight ,was given a feeding Tube had time in intensive care
can’t remember all of it , there were times I didn’t think I would come through it , but here I am 2 years post transplant , it’s very hard , I take each day as it comes & enjoy , I’m no where near the person I was before , I’m a totally new person with a new way of life
I have a wonderful team of doctors and nurses that have looked after me and still do , try and keep strong and have faith
best wishes
michelleanne
Thank you so much for your encouraging words, Michelle and for sharing some if your journey. It really helps me to know that through all the adversary, you are enjoying life, albeit a different life than before.
i will let you know how my daughter gets on with the trial.
im so glad that you are in the hands of fantastic doctors and nurses. My daughter is also very fortunate in this respect.
Best Wishes
Audrey
Hi audrey
hope all goes well with the trail ,
best wishes
michelleanne
Hi Audrey, thanks for the update on your daughter. Your daughter sounds very much like me after my transplant. I had no appetite for a really long time and it made me really weak.. I’d spent so long in bed that I lost the muscle and strength in my legs, and my lack of appetite made things worse as I was not getting enough nourishment. At one point I couldn’t stand up long enough to get weighed each day! The virus she has won’t be helping either.
I hope her blood counts are still climbing though which should give her some encouragement that things are going in the right direction.
Please keep us updated.
Steve
Hi
sounds like we’ve all been through the same , we are in a very special club the survivor’ s
give you’re daughter our best wishes
michelleanne
Hi and thank you both so much for taking the time to reply and share some of the very rough times that you had . It is wonderful to hear how much you have come on from those dark days .
my daughter had the first cell infusion ( from the trial ) today. She has been very exhausted and tired all day. I’m hoping that she will get a reasonable sleep and perhaps be a bit brighter tomorrow.
I am so glad that I can visit her . It’s quite a long drive 3 times a week but very worth it.
Your encouragement is really helping.