[lilibParticipant]

Hi,
My husband is currently in hospital and has had his SCT. He opted to go to a hospital which is in a different Health Authority from where we live, and where he had his induction treatment. He has been given a booklet about going home and today he is receiving a platelet infusion, but the doctor said he would need to get in touch with the hospital near home because he will need a weekly platelet transfusion to begin with.

This has come as a complete shock to both of us. We expected to have check-ups on discharge, but we had no idea that there would be more treatment as standard. Is this normal?

I am very concerned because the two hospitals do not seem to be ‘talking to each other’, and I am afraid of having to collect him from the hospital 40 miles away, and then having to find out who is dealing with him once he is home. Why do these issues always crop up at Bank Holidays? I know that there is no point in me trying to contact anyone until Tuesday.

Can anyone tell me a bit about Platelet infusions, please?

Lili B

[mulberryParticipant]

Hi Lilib

Having platelet transfusions is very common during the transplant process. During a local myeloma group outing a few weeks ago, someone mentioned platelet transfusions (as one of our number was having a SCT and had messaged to say he’d have to have one) and I think all but one of us said we’d had at least one during our SCTs.
My experience was that I was told that I needed at least two, but my platelets started to rise after the first one, and I didn’t need more. I hope the same proves to be true for your husband.

I’m sorry that you’ve been left high & dry over the Bank Holiday weekend, always a worry. But I’m glad your husband is almost well enough to come home.

Some hospitals operate a quick access number for cancer patients, if your husband was given a card with a phone number on it during induction, & he is discharged, you could ring the hospital on that number so it’s logged on the system that he’s been discharged. Better still he could ask for confirmation that his ‘home hospital ‘ have agreed to do the platelet transfusions, know he is being discharged & have given him a specific first appointment, during the discharge process.

Best wishes for his recovery at home.

[lilibParticipant]

Thank you for that information, Mulberry. I did try looking at the info booklets, but one of the problems is that some things have changed post-Covid, and I haven’t been able to visit him at all, or speak to any of the staff looking after him. I am basically just a woman collecting the laundry every week, and taking clean clothes in!

We do have emergency numbers that were given to us during the induction treatment, so if I don’t hear anything by Tuesday morning, I will follow your very sensible suggestion, and let them know that he is back home. I suppose I could refuse to collect him from hospital until we have follow-up appointments arranged!

[mulberryParticipant]

Hi Lilib
I hope that your husband’s discharge and hand back to his original hospital went smoothly. I’m sure it is easier for you both with him being at home, even though he will still be extremely fatigued & not yet able to do very much at all.
Jane

[lilibParticipant]

Hi Mulberry,
Thank you for thinking of us! I collected Mr B from the hospital on Wednesday evening. Although he had a supply of various meds, which I have sorted out for him, there has been no word from our ‘home’ hospital about check-ups, apart from one in November.

I have rung them, and left email messages for our so-called Key Worker, but we have heard nothing. It is all rather concerning. I have got an emergency number if all else fails, but I am a bit disappointed with how this seems to be going. Fortunately so far we are ticking along, and, as you said, the patient is resting a lot.

Lili

[kh0305Moderator]

Hi lilib,
Glad to hear Mr B is back home and hopefully starting to feel better. Home surroundings always help!
Sorry to read that you’re having a bit of a nightmare with the hospital. We had similar problems when dad relapsed as he had moved since his initial treatment 7 years prior and although it was the same consultant covering both hospitals the new one is so much worse from an admin/comms perspective. Like you, we have had to phone many times and tell them when he should be coming in and what he needs doing and organise the meds for dad and often chase the pharmacy to get them sent out on time (oh they’ll be there in a few days but it doesn’t matter if he starts them a few days late, does it?? Er, yes it does!!). Unfortunately it seems that sometimes we just have to push a lot more than we would like or feel comfortable doing but I’d definitely use the emergency number if you’ve not had anything back yet from your contact and get him booked in.
Good luck! xx

[lilibParticipant]

Thank you for your reply, kh0305.

An update – we got an appointment for a check-up at the ‘home’ hospital yesterday. Very reassuring and thorough doctor who showed us the various graphs of things that were being monitored. Bloods were taken in the morning, and he phoned Mr B in the afternoon to let him know the results. All in all, it’s only one week since he was discharged from hospital, but he is already getting a little bit less fatigued every day.

[kh0305Moderator]

Hi liliv,
That’s great to hear. It makes such a difference when you have someone that takes the time to review things properly with you. Glad you are feeling reassured. Sounds like Mr B is doing brilliantly given he’s only been home a week as well. Hopefully he will continue to go from strength to strength and it won’t be long until he’s feeling less fatigued.
Take care xx

• This reply was modified 2 years, 2 months ago by  kh0305.

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