Preparing for Transplant: Can anyone... - British Liver Trust

British Liver Trust

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Preparing for Transplant

Ewife
Ewife

Can anyone give me advice on how to prepare for transplant. My husband is listed and I feel like for me, organising things and getting ready goes a long way towards feeling emotionally prepared for it. I guess I might be a bit of a control freak, so I hate not knowing when and how everything will happen. I've heard folks say about having a bag ready- but what will he need to pack? Or is there no point taking anything until he is out of intensive care? I'm thinking phone charger, toothbrush etc. The leaflet says not to take anything with you initially as they don't have anywhere to keep your stuff but I can't imagine him being too sick to use his phone- am I wrong?

Also, im thinking of investing in a reclining armchair for when he recovers so that he can rest downstairs and be with the family more. Hope someone thats experienced the surgery can advise me if this will be a waste of money or not?

28 Replies

Hi. I can only tell you about about my own experience but I hope it helps. My partner was transplanted in 2016 & when the call came he was cool as a cucumber but I was a wreck. We had a bag packed for each of us as I was staying over nearby but I guess that doesn't apply at the present. His bag wasn't needed at all for the first couple of days in Intensive care so I wouldn't worry too much about it. As for the chair I can't say as all recoveries are unique. My partner came home after 10 days & was able to sit downstairs on the sofa & only go to bed upstairs if he felt tired. Hope this helps & i wish you the best of luck. xx

Ewife
Ewife in reply to h0b0

Thank you. I suspect it will be the same for us- I know I will be in a flap ( we have childcare to arrange too) so I was thinking to have a list written for each of us of things to take. I'm hoping i will be able to stay with friends nearby until he is out of surgery at least.🤞

I recommend a long, phone charger lead, saves a lot of time trying to get the nurses attention.

Ewife
Ewife in reply to TT-2018

Good point!! This is exactly the kind of thing that's useful to know - all the stuff nurses and drs don't think to tell you!!

Definitely for any hospital stay, the phone is a must, with charger. If you look on the hospital website, there is usually advice about what to pack. Some wipes in case he can't shower, but still wants to freshen up. Cream to keep skin moist& lip balm are essential imho. Deodorant. Pen & paper in case he thinks of things he wants you to bring in. Slippers, pjs, although I used night shirts so there was nothing pressing on the abdomen.

Not comprehensive, but a start. A pillowcase so that he can lay it over the scratchy hospital one.

Hope that helps😊

Ewife
Ewife in reply to CarpeDiem11

Thank you. That helps a lot

CarpeDiem11
CarpeDiem11 in reply to Ewife

Don't know if you use "WhatsApp ", but for me it was a lifeline for messages, video calls & sending the same info to multiple people, so the patient doesn't have to repeat same info to everyone. The days can have multiple interruptions & sleep is nigh on impossible much of the time. This makes it very difficult for patients to find the time/energy to deal with well meaning friends & family. Just a suggestion from " one who knows" 😉

Ewife
Ewife in reply to CarpeDiem11

Yes, especially if he puts his phone on silent - then he can just contact folks when he's ready. He spent some time in hospital in September and I wasn't allowed to visit because of Covid regs - we ended up leaving it for him to ring me when he could. I can't imagine going through this major surgery and not being allowed to be with him. Hopefully it will get easier soon.

CarpeDiem11
CarpeDiem11 in reply to Ewife

Yes, for his & your sake. I think you definitely have a sensible head on when dealing with these things. After a while in hospital, it can send you doolally, so I hope the Covid restrictions get lifted soon too. All the best to you both.🙂 Your husband is lucky to have you looking after him.

TBSW
TBSW in reply to Ewife

Hi me again, on this point, he'll be fine, I was in hospital last year, during covid, 4 weeks pre transplant and 2 weeks post transplant. I didn't see any family for 6 weeks. But to be honest it was easier. It meant I could rest when I needed to, and post op, I wasn't at my best, so it was far better my family didn't see me like it. X

Trust5
Trust5Administrator

Good afternoon. All good advice from your fellow forum users. Hopefully by the time he gets transplanted restrictions will be eased, if not lifted, which will make things a bit easier. Have all your contact details written down clearly for the staff at the hospital and also make sure you have the relevant hospital, transplant coordinator details.

regards and good luck, hope he doesnt have to wait too long.

Hi Ewife

I had my transplant six months ago I did have a bag ready to take with me due to living by myself. I took two sets of night wear, bottle of squash and packet of straws, toiletries, £5 in change, puzzle book and pen and phone and charger. I think I was very lucky has I was only in ICU for 24 hrs and home with in eight days. Good luck 🙏🏼🌈

Ewife
Ewife in reply to Catlady1972

Wow! So nice to hear everything went smoothly for you. Hope you continue to do so well. Not thought of straws, thanks

Bastille37
Bastille37 in reply to Ewife

Earplugs, I found earplugs meant I got more sleep than I would have otherwise. And lip balm is essential your lips get so dry.

Hi

A packed case is a must, when the phone call comes in my case it was in the early hours so prepare anyone you need that may happen

Very loose clothes [elastic track suit], I needed a couple as they were all wanted to wear for a while

I felt good within a couple of days and you are encouraged to get out of bed and sit in a chair ASAP so loose clothes become a must

Be prepared yourself, there can be lot of walking and waiting, comfy shoes and reading stuff

I was out of ITU in two days and home in 9, and able to answer the door

We had to sort transport home at short notice as the ambulance does not take you home

Good luck, I hope the call come quickly 👍

He might find a small re-chargeable electric razor useful. It’s amazing what a difference a shave makes if you are in hospital for any length of time.

Ewife
Ewife in reply to Lantana100

Hadn't thought of that one either! Thanks

Hi, I received a transplant in September and despite a few complications, I’m now feeling amazing. It’s the greatest feeling ever to be given a second chance at life. Like you, I am a control freak. I prepared by packing a bag in advance and I too included a phone charger with long wire. If you buy off the internet, these are inexpensive and in fact, I bought and packed 2 just in case one didn’t work! Obviously I had a toiletry bag with all the usual but I bought miniature versions of everything to reduce space and weight including a fold up toothbrush. I also bought some “oral brush up” deep cleaning teeth wipes again off the net as I couldn’t find in the shops. These were great post op when I was unable to get out of bed, but freshened my mouth nicely. Lip balm, orange squash, puzzle books, note pad and pen, magazine, chocolate, biscuits are all a must! Its sometimes difficult to concentrate post op and so I wouldn’t recommend a book. I packed 3 sets of nightwear and underwear along with a dressing gown and slippers. also put some carrier bags in my bag for dirty washing. I set up a WhatsApp group prior to going into hospital so that my daughter could put daily posts which prevented my family from being bombarded with phone calls and texts. I wrote a list of my current meds which also had details of my GP, important phone numbers, next of kin etc. I had a bag packed for husband too as although he was unable to visit, he did stay overnight at a local hotel so that he could be on hand if necessary.

I was in hospital for 4 weeks as I had some complications and had periods of forgetfulness. My husband wrote a timeline of events during my first 2 weeks which he delivered to me and this helped me enormously. In preparation for returning home, i bought a wedge cushion so when I was in bed, I was not lying flat. I also bought a fold up shower chair which is quite small but has been so useful. Other equipment such as raised toilet seats were provided by the OT team. A few years ago, i bought my husband a “stressless” reclining chair and footstool which I have been using along with using the sofa. This has been useful but I wouldn’t consider a “must “ purchase. Finally, I would recommend you get some silicone gel for when your husband comes out of hospital. A dermatologist friend of mine recommended for treatment of scars. I was unable to get on prescription but my local pharmacist ordered for me and it’s been brilliant. I’m sorry for the long post but hope it helps. I do wish your husband and you all the very best and hope that his call comes soon.

This is so useful, thank you for taking the time.

You might consider a favourite pillow, with your own recognizable cotton pillowcase, hospital pillows are not of first class quality, flat and scratchy!

Hi just pack a bag of clothes pyjamas toothbrush flannel phone charger the stuff you would take to stay away from home also add all the meds he is taking when you leave to go to hospital

What you would normally take to stay away

Take it with you and see if the hospital can keep hold of it but you might have to take it home until a bit later

Would not worry about the chair yet let him have the op get home and see how he then feels and what he then needs

Dave

Phone charger cord and plug for the hospital, a walker for home, a grabber stick to pick stuff off the floor with, a shower bench and a raised toilet seat so he can get up easier. That’s off the top of my head and I’ll post more if I think of anything. Good luck!

I don't wear PJs at home 😲 so relied on hospital ones. They come in various sizes and the nurses were sometimes not very careful in handing me sensibly sized ones so I would say a dressing gown is a must. It also helped to hide the drain (bag on end of a 2 foot long tube) attached to my wound. It may have changed now, but the ward at St James was essentially mixed sex with ladies at one end and men at the other.

Ewife
Ewife in reply to PeterP54

Thats interesting to know, thanks!

One thing that comes up sadly all too frequently is that even if hubby gets the call he may be at hospital for 12+ hours then find out the procedure isn't going to go ahead because the liver isn't perhaps good enough. So think of that when packing, he may need a fresh change of underwear, socks etc. for the next day and definitely a day or more of his own medication plus some nibbles and money. Plus think of a return home plan in these circumstances (hopefully not needed but it does happen). If blue lighted to hospital they don't return you home.

When I packed for my hubby he had a small wheeled case with PJ's, dressing gown, slippers, undies, socks, a clean t-shirt, phone & charger, list of phone numbers & very simple operating instructions for his simple mobile because sadly he can't work it, ear plugs, tissues, wet wipes, wash & shaving kit and small towel, snacks (flap jack), a few pounds, a couple of days worth of his own meds, a puzzle book, note pad and pen.

I wasn't going to be travelling with hubby (100 miles from our house to Edinburgh) - he was to be blue lighted and I would make my own way - we had sited our caravan near Edinburgh so me and our little cat had some where to stay for the duration.

In our case hubby was delisted after 10 months so we've had a practise run at the prep without the end result.

All the best in your case, hope hubby gets his call and all goes swimmingly.

Katie

Hi, I haven't read any of the other replies, so forgive me if I'm repeating stuff. I had my transplant last June, after a 12 month wait. I had two bags ready from day one, as like you, I like to be organised. I had a bag for when I got to the hospital and intensive care, and one for the rest of my stay, Which was a small suitcase size, because of no visitors during covid restrictions. My first bag consisted of a dressing gown, slippers, and a pair of pyjamas, as they'll be a lot of tests prior to surgery, which could take hours, and if he's poorly he may just wish to sleep in bed. Make sure, his bag is labelled, as mine got lost for a day or so when I woke up, and I was upset at not having my glasses, also if he wears glasses, make sure you put them in a case also labelled with his name, as he may want to wear them to surgery. A phone charger is a good idea, because he will be able to ring you from intensive care, when he's woken up, but they also have phones that he will be able to use, but sometimes you don't like to ask all the time. When he's back on the ward, a laptop or tablet is a good idea, as the TV's at QEH didn't work, and it is boring, especially if your in a side room. Headphones are also a good idea. Pack plenty of pairs of pyjamas, or use theirs as my wound kept leaking, so I was getting through about 3 pairs a day. In the end, I used hospital issue. Boiled sweets are a must, as your mouth gets very dry on the wards. You do not need to pack towels as these are provided, but a flannel is handy in the first few days, when a shower is just too difficult. And lastly but not least is a few pens, to fill out menus with, take a few as the nurses will nick a pen, if they see one😁. I hope all goes well, and he doesn't have to wait too long, as the waiting is the worst part.

Thank you so much everyone. I'm getting a much better idea what to expect with all these replies. A lot of your experiences and the little detail of what to take is really interesting and insightful. I'm already feeling so much more ready for this!

Hi there! All sounds very familiar. Had my transplant May 20. My essential list was an extension/long phone charger. I fell over trying to attach the charger to reach my bed. No one found me as they couldn’t see me (I was in a single room after ICU at the QEHB). Managed to finally get up but learnt a big lesson there. Lip balm, eye mask for napping during the day, your own blanket as hospitals can be cold as well as hot, ear plugs and mints and the obvious stuff. Wishing you all the best & good luck!

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