Hello again, I forgot to say I take multivitamin and minerals too. When I came out of the clinic I was suffering officially from malnutrition.. a lot said for the hospital food.
My mood picked up when I started on the vit+mineral fizzy tablet. Just the normal supermarket no name ones.
Check it with the team first though.
Best
Helen
Me again,
I also forgot to mention I have fresubin. I don’t know if you have it in the uk. It’s like astronaut drink, unfortunately really expensive, but high calorific with necessary supplements. The other supplement Ihave from the clinic, is a powder, which I put in fruit tea with juice , it is called EnergeaP.
The docs saw this as important when I first got back home, max one bottle a day. I am lactose intolerant so take lactase 2x a day for my medication which has plenty of lactose in it.
Hope it’s all helpful Auds. Perhaps Steve, Dave and Michelleanne have other little things they take, I’d be interested.
Best
Helen
Hi Helen
I was given supplement drinks when I first came home special food because I had a feeding pipe in ,
anything is better than nothing I suppose
michelleanne
Hi everyone
I eat the weirdest of food , I’m off instant coffee , meat , alcohol anything fizzy , I enjoy nice soft bread and butter
lovely to hear from you all
michelleanne
Hi Michelleanne
I like squadgy bread with butter too, with plenty to drink to help it down.
I couldn’t eat bread for over a year so somehow I get a kick out of managing to eat it. It’s like ‘normal’.
Helen
Hi everyone . All your “food stories “ have made me smile in a nice way. They’ve reassured me that how my daughter is feeling regarding food is very normal after a transplant, or in her case ( and Michelle’s ) two. She’s eating a very small portion of what we are having for our evening meal and nibbling a little throughout the day.
Im glad that you are all managing to find foods that you can tolerate and think you’re all wonderful to be keeping positive and cheerful. I’m in awe of you all!
Audrey
Hi Audrey,
your daughter is very lucky to be eating a small portion of what you are eating. I can remember when I arrived home After my Bmt I was so fussy after my stomach was damaged so much by the chemo and the mucositus sounds like she is already making good patience. With time things will progress.
Hi audrey
your daughter sounds like she is making good progress , wish I could have managed that , it was very hard for me to eat , as I had a feeding tube in ,
i manage little better now , I’m a weird fussy eater no tastebuds , and a sore throat
I’m worse than the grandchildren , I’m always getting wrong for not cleaning my plate
love to you all
michelleanne
Hi Audrey
I’m impressed too that your daughter can eat a little of what you’re eating. I was , and still am, very fussy.
At first I needed to eat about every two hours or I started noticing lack of energy. That made me very tearful in the beginning cos I wanted to prepare my own food, difficult with no energy.
I’m really pleased to hear how it’s going. I’m also getting alot from this discussion … accepting the situation. Thank you all.
Helen
Hi helen
im the same as you , also get a lot out of this forum , you all understand what I’m talking about , as we’ve all been there , where drs understand but not like all of us
you help me so much and I’m very grateful
love & best wishes
michelleanne
Hey Everyone, just a quick update. My husband is +22 post second transplant and the doctors have seen him this morning and they have said they will be removing his line as it might be causing problems as they can’t find the source of infection. His neutrophils or white blood cells have dropped again so they said they will give him GCSF. I’m petrified that it’s not worked. I cannot remember what happened the first time as it was 2005. Is it normal for GCSF to be given or does it mean graft failure even though his counts were slowly rising.
Hi beagle girl
my lines had to come out because they couldn’t find my infections , they put me on a drip for a few days , with antibiotics as they struggled to get some , that I wasn’t ellergic to
hope all goes ok after getting his lines out
best wishes
michelleanne
Hello Beaglegirl
I don’t have experience of this specifically. Sending you energy and love. It’s terribly hard for you both, big hug.
Helen
Hi Beaglegirl,
As Michelleanne said sometimes they remove your picc line or central line if your blood results show you have infection as sometimes the infection is in the line and it is near on impossible to remove it from the line. I had a few lies replaced for this problem so this is quite common. Also the GCSF injections are quite normal as these are to get your body to produce stem cells a bit quicker in your body in our case when you have had lots of chemo and your body is a bit slow in recovering the nuetrafil count to protect you from infection. Sometimes it can be done for a few days. When you have these injections normally in your belly you often get a strange sensation in your lower back or lumbar region as your pelvis region starts a rumbling sensation as is produces stem cells in quantity it is a bit like a back ache. I have also had this done a few times, it is also very similar to what they give to bone marrow donors these days to produce stem cells. The doctors just want to get rid of where the infection may be and encourage his neutrafils to come up. Ideally they want it to come up to about 7 before they allow him home.
Hi everyone
Firstly, Beaglegirl, I hope that your husband is making a little progress . I have not gone through any of this but like you, have watched my daughter struggle through a second transplant and various infections .
one of the things that has kept me going is that Michelle said that the medical teams are fantastic and will keep working on anything that comes along ( like infections etc. )
My daughter is now home but the roller coaster journey goes on. Last night her stomach pains kept her awake and she’s exhausted and in pain today. She has spoken to her consultant who says that the enzyme part of her liver is causing problems , either due to to one if the drugs or gvhd. I do have faith that the doctors will work out how to help with this.
My daughter also had to have a picc line removed more than once because of infection.
It is a very emotional roller coaster for those going through all the aggressive treatment and their lives ones.
I know that I’ve said it before but this site is like having another family, a family who are so supportive and can hand out reassuring , helpful advice .
I hope everyone is as well as can be expected today. Helen, I think about you often as I think my daughter is going through similar symptoms to you.
.
Hi Auds,
Just hold on, it’s such early days. It sounds you are the best compliment to her sct team. So challenging, no one else can imagine it. You and your daughter are a super team together.
Yes Michelleanne is right, and it also helped me from this app (this chat) to hear that I need to tell them everything too.
Helen
Hi all
I know exactly how you all feel , we face different challenges everyday , I never thought it would be this hard , but at least I’m here , I try and not be so hard on my self , I do agree I find out more from this app , sharing people’s experiences
you are all in my thoughts
remember you never walk alone
michelleanne
Thank you so much for your kind words, Helen and Michelle.
Today has been a very tough day for my daughter. Her stomach pains have not relented and everything ( not much ) is just passing through her. How I hope that it abates a bit tonight.
It is very hard for loved ones having to watch while their daughter, wife , husband etc suffers so much but I know that it is even harder for the person having to go through it. I so admire your strength, bravery and determination. Mostly however, I can’t thank you enough for encouraging myself and others while you have your daily battles .
I think about you all and am sending you all my best wishes and positive thoughts .
Audrey
Hi audrey,
I had days like that , hopefully tomorrow will be a better day , my husband said that , he and family , couldn’t visit me because of covid it was months before I saw them 8 months before I saw our eldest daughter and her children,
if like me , I’m stubborn and it’s not going to beat me , I have a wonderful family to keep going for .
we’ll get through it together , now we have found this forum we will never be alone
best wishes
michelleanne
Hello Audrey,
Please remember what a fantastic job you are doing to help your daughter.
Maybe she’ll do what I’ve done and block a lot of it out of my memory. I was in nappies for months with acute bowel gvhd, kept nothing in, no control. It is a haze now which is a relief.
Big hug to you and your daughter,
Helen