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Vicki 11 years, 3 months ago.
My hubby was released after his SCT the day before yesterday. This was unexpectedly early to me (as he was not eating much and had been on a dripper for fluids from the day 1.
Whilst at home he had not eaten (could not eat without throwing up) and drunk about 500g-600g of water per day. Today he managed 100 of meal replacement shake but passed out going to the toilet (which is another thing to worry about considering he has a damaged hip).
I am extremely worried, but he tells me that there is no point calling the hospital as he may be better tomorrow.
I am worried. Have they released him too early? (I think he had been there for just over 2 weeks in all). He still has his hickman line in – is this heard of for a district nurse to come and give him some fluids? He is not going to cope with me driving him to the hospital the way this is going…
Is there a checklist anywhere for what a patient needs to feel like before being released?
Hubby had a high temperature whilst in hospital, his temperature is stable at 37.6C now. He says they said at the hospital this is fine… Is this fine? He has antibiotics but no change in him…
Sorry for the anxiety. I have never seen him just so ill.
Hi there,
I would ring the hospital yourself to check, also do you have a support nurse following sct? I would ring her. I did that a few times when Colin had his. He was released and I had to take him back in the same day…..he threw us and ended up with a temperature and another week in hospital. It's better to be safe than sorry. He may have collapsed due to weakness and lack of food.
Good luck
Vicki and Colin xx
Contact the hospital.
I've been out a week now and they wouldn't release me while my temperature was that high.
I realise your hubby is putting a brave face on it but he still sounds quite weak to me.
Hi Marina
Well I do agree with the others!!
When my husband had his SCT they left the line in as platelets were not picking up very fast,it was in for sometime from what I can remember,and he had to have a lot of platelets over a period of time,so do not worry about the line,the hospital or district nurse will flush the line through once a week,but you need to keep your eye on it,any red around area,straight to a doctor.
The last place your husband wants to be is hospital!!,but this time you know what's best for him,get on the phone and explain to them what has gone on.they usually do not let them go unless they have stopped being sick,eating a little and drinking,my husband was good at lying!!!!.
My husband makes a bad patient as well. Eve
Hi there, that doesn't seem right to me. Your husbands temperature is high.
Contact the hospital.
During the early days after my stem cell transplant I passed out on three different occasions, mybloodpressure was fine lying down but if I stood up quickly, I went out like a light!
I'm sure he would prefer to e at home but better safe than sorry.
Regards
TonyF
Hi Marina
Am same as others above am afraid, Hope hubby is soon sorted
Love Tom Onwards and Upwards x
Hi Marina
My husband was extremely worried when I came out of hospital after my SCT. From day one, I had been on fluids and hadn't eaten for 10 days after my SCT. I was released the day after the fluid line came down and I could only drink/eat a little without vomiting.
I was wheeled out of hospital and went straight to bed at home. I slept for nearly a week with only being awake for a few hours during the daytime. I hardly ate anything, but did manage to drink more than in hospital. My hickman line was left in for nearly a month after being at home. I didn't need any further fluids, but the line remained just in case further medication was required shortly after release from hospital. I was quite wobbly on my feet when I went to the toilet and had to use a walking stick to remain stable. My leg muscles were weak and I couldn't bend down without toppling over! My husband had never seen me so poorly. He had to contact the myeloma nurse several times for reassurance.
We are all so different during and after SCT, but as others have responded, you need to contact the hospital to talk through your concerns with the myeloma nurse. They will provide you with his blood results and the reasons as to why they thought he was well enough to go home. Try getting your husband to take some paracetamol for the temperature and continue to monitor it during the night and tomorrow morning. You can then discuss this with the nurse, or if the temperature goes up any further contact the hospital sooner.
Jan W x
Thank you so much for your answers. They helped a lot to put me in the right frame of mind. I will be calling the hospital nurse today with my questions. (Hubby categorically does not want me to call them as he says he has all the pills he needs and does not wish to go back). A small update on my Hubby. He was drinking yesterday despite being nauseous constantly. He had managed an ice-cream and a milkshake (cold drink is easier for him), so I made him one out of full cream ice cream with added multivitamin complex protein powder.
His temperature is still the same 37.4C. It does not seem to go down to 36.6C (which I see as normal). He does take Paracetamol but only sparingly as he says he can't keep it down. Not had blackouts. Managed to go upstairs to bed. He looks a bit better but just looking at him gives me a feeling that time is standing still… I would so much like to feed him a proper fillet steak with chips… :)!!!
Hi Marina
One of the reasons he was given paracetamol is it will bring down his temperature , crush them up if you have to and put them in milk!
When people first come home from SCT,one they do not want to go back,two they feel in limbo after all the care,and the person who looks after them worries,this is all normal hospital tell you to ring if you are concerned ,so do not worry about it.
I felt the same as you,worried he was ill!!!,after SCT he was admitted twice,and was back and forth to unit twice a week,we were just unfortunate his platelets were not rising fast.
You can forget about a steak or big meal for some time,small and often is the way,find things he will drink,my husband drank milk,and still does,small glasses so they do not look overwhelming ,and the milk will stay fresh as this weather is not good for milk kept out of fridge.
No one can prepare you for them coming out from SCT it's just a big learning curve. Eve
Dear all!
Just a quick update on my post hoping it may help other anxious carers (and ultimately the MM sufferers) post the transplant.
It has been a few days now since my last post. Hubby has been rapidly improving. The solution to the issue of food and fluid intake was in me making a conclusion that he needed to eat and drink to survive. In his state he was too weak to look after himself. However, he was also too week to constantly refuse. So the solution was in offering food and drink (constantly) and nagging (constantly). Perhaps even sneaking… constantly.
Initially Hubby could not manage to keep in anything but a crushed ice milkshake and squash drinks. I added full ream ice cream and the same flavour protein supplements into his milkshake and diluted multivitamins into his squash. When Hubby asked what was the strange taste? Lied it must have been his damaged taste buds :).
From the shakes he progressed to yoghurt and cheese. Then to smoothies (banana, mango, strawberry, etc). Then he could eat kids pods with mushed fruit. Then managed milky coffee. Then a chicken breast curry I made using the "from 6-month old" kids range mild curry paste.
This progressed to him having a full plate of fish and chips and a cake yesterday and a big breakfast today.
He is still weak but is now able to concentrate on TV and IT which I see as him truly returning to his old self.
I know that every person is different and every sufferer's recovery is different. However, I have now read numerous postings about post transplant recovery and they are all the same regarding one thing: it gradually gets better. It does…
Hi Marina
I came out of hospital post SCT on 1st Feb this year
It was some weeks before I could manage solid foods, down to cough & very dry mouth & throat
I thrived on soup , jelly, ice cream , lots of soft cheese,
As long as you get down three litres a day of anything wet !
Now six months on I look & feel fine, time soon passes
As you say we are all different , there is no norm , you know your patient the best
Peter
Hey marina
Well done, it is so hard isn't it but so glad hubby is making a bit of progress…..onwards and upwards as Tom would say 🙂
Vicki and Colin xx
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