Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My husband had donor SCT 13 days ago, and Doctors are saying he could possibly be discharged within 4 days. He has been having TPN for last 7 days, he has syringe driver with morphine and also needs oral morphine every 2-3 hours. He is telling nurses that he is tolerating diet and fluids, but I know he is flushing them down the toilet. I have been there when he has tried to eat and drink and he cant put anything at all in his mouth due to the pain in his mouth . He is also needing IV antibiotics. I want my husband home as much as he wants to come home, but if he does come home with a pump etc for his TPN, he will be telling medical staff that I will be able to cope, when I know I will not be able to. We live over an hour away from the hospital and it's not as if I can get him there quickly in a emergency. Will I be able to tell doctors that if he is discharged without taking proper diet and fluids then I'm not prepared to be his primary carer ?
I don't want him to come home before he is medically fit , then have to go back into hospital as an emergency
Please help if anyone else has had these concerns.
I am really sorry to read what you are going through at the moment.
In my opinion, you have got to tell your husband’s medical team that your husband is flushing food and liquids down the toilet. I was on TPN for about a month, and I know they had strict control over that time on how much I was taking naturally as that was really important to understand how much I needed through TPN. It is definitely in your husband’s best interests to remain honest with the medical team, no matter how tough it is.
Is your husband struggling psychologically? I know I found it horrendously tough to be in hospital for a long period, but based on what you’ve written, it’s definitely the best place for him right now. Is there any psychological support at the hospital that might help him get through this period?
Really wishing things improve for you soon.
All the best
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Hi Shopkin, I totally agree with Greg, you do need to talk openly with his team and make them aware of the issue. This time is very important as once he is home he is away from the oversight and support of his medical team and as you say you don’t want to be coming straight back in.
His mind is not focused on the greater good in this process, but only on the overwhelming drive to get out!!!......I remember those thoughts well.
During my two Allo SCTs I was very fortunate not to have a TPN, but I was totally determined not to have one..... so both my team and my wife sat with me every day until I had taken every little drop of mush (food).
See this as tough love, it is hard seeing him go through this but it is very important he is in a good place before he gets out. For some the post SCT journey can be as hard as all the rest of the journey and he needs as much mental and physical strength as he can to get through this part.
I just asked my wife Fiona what she would say to you and her words are “you are living this battle every minute of the day, your husband actually is not that aware of all that is going on and the importance of being in a good place for the next part of the battle - time for some tough love I think” and she is sending you a big ((hug))
Keep posting as we totally understand this journey and one of us will have come up agains some of the challenges.
We have a thread that has collected the post SCT wisdom from the folks looking ay the first year challenges and how they got through them - have a cup of tea and have a look.
Life after a SCT - A Survivor's Guide
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thank you (and your lovely wife) for the advice and reassurance. I do plan on visiting him all day tomorrow to monitor myself on what he is actually eating and drinking, so I can then inform his team that he is not actually taking in what he is telling them ..I will also be speaking to his doctor to explain that although my husband is probably telling them that I've been a nurse and a unit manager in the past, and I'll be able to care for him, I'm not prepared for him to come home until he is at a point where I feel he will also be able to manage being at home ..Or is that too much tough love?? He is also having his syringe driver with morphine taken out today , so tomorrow will be a completely different day for him . I'll let you know what happens tomorrow and thank you (both ) so much again
I don't think he has much support as the nurses only seem to go into him when he uses his buzzer to ask for things . I will be going in tomorrow all day to monitor myself what he is actually taking then I can report to the team that he is not eating and drinking as he says he is . He is having the syringe driver taken out today so tomorrow will be a completely different day for him .I will be raising my concerns that I'm not prepared to be his primary carer unless I feel that I can deal with the problems that may arise if he is discharged to soon . Thank you for your advice and reassurance, it means alot
my heartfelt thoughts are with you! It is indeed time for tough love, he needs to be off that driver and taking medication and nutrition by mouth before going home. You will need to let his team know what he’s cheating with, I understand his need to get home but he’s trying to run before he can walk!
Daughter had to prove she could take all her medication by mouth in front of her nursing staff before being allowed home.
Big hugs, lovey xxx
Hugs and support from me, too. Wise words from the others and I agree that you should tell your husband's medical team. His head will be all over the place and you need to make sure they are assessing his progress on the basis of accurate information.
17 days is really early to be thinking of discharge after an allo. It's tough enough when you first get home as it is, without leaving with ongoing issues. The team in my unit expected that nutritional intake was stable and you were thriving before discharge.
Much love xxx
Just for some context Shopkin I was sent home on day 20 post SCT.
My Neuts were actually at only 0.9 but there were some bugs doing the rounds so they said I would be safer at home than in the unit.
I was on a soft high protein diet high so grazing on good home made soups with lots of cream, scrambled eggs, porridge, mashed potatoes with cream and cheese....... but could not stand protein drinks.
Thank you all again for reassurance and advice . My husband IS being discharged tomorrow.
I spoke to his Doctor yesterday and told them all my concerns about not eating and drinking etc . I was prepared to actually say I would not let him come home, but the food where he is I wouldn't even give to my dog's. Yesterday for example, they know he has a sore mouth and no appetite and when they asked what he would like for lunch, he replied " just something small and light ", so he was given pork pie and salad !!!! I had to chuckle to myself, and he was also laughing and it was at that point I knew he would be better off at home. Luckily I had taken him a frozen ready meal and gravy which he managed to eat a small amount. He will also be going back to clinic on Tuesday for bloods and checks etc, so at least if he is really struggling to eat and drink at home and losing alot if weight and also if I'm not coping, it will only be 3 days before he will be reviewed again. Also, his TPN was only stopped yesterday so I was told this could also be making him feel that he doesn't need to eat.
I don't actually think that he is mentally prepared to come home. I don't think he realise's how unfit he is, as he hasn't exercised at all only walking round his room in the last 2 1/2 weeks, and that by even going upstairs will be a struggle for him . But I've got to let him see that for himself. I've also explained to him that I have joined this group and told him all the stories and advice you lovely people have posted on here, and he said he may actually join himself when he feels up to it, or I will post on his behalf.
So, I will post again once he's home and I'm sure I'll be seeking more advice and help from you all, and I'm so grateful for the support you all give. And I hope that one day, I'll be able to support and help someone on here that is going through the same journey as me .
Thank you all again
Forgot to mention ..his neuts are above 1, as they are pleased that they have come up so quickly, hence why the early discharge
.....stand your ground Sash....... as you have to carry the load when he is home xx
with stairs to do too, for the first few days expect to have to wake him for meds, food and drink and don’t expect much else, just the act of getting and being at home is exhausting!
Hope all goes well, we will be thinking of you both!
Definitely take it easy the first few days. I was a relatively fit 36 year old before transplant and I really struggled with stairs the first few days at home. It’s good that he’s off TPN, and like you say, it will probably do him good to be home. The hospital is never far away so definitely wheel him in if he needs it. I ended up spending 70 of the first 100 days in hospital and it’s often common to need to go back in, so definitely use it if you need it.
I will Mike ..trust me !!! I've been down this road before with my Dad when he was discharged from hospital too soon, and I had no support whatsoever from any type of medical team, district nurses, etc and my Dad ended up with Septicaemia, which is unfortunately what he died fro so I'm certainly not going through that again . But I've got to give him this chance just to prove to him that life ain't gonna just go back to normal now he's out of hospital.
Thanks mommy. I know he is going to be exhausted, unfortunately I don't think he realises how much this taken its toll on his system and body. But I've got to let him see that and I'll be there to pick up the pieces
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