In Safe Hands: Kim's Journey with Leeds Hand Transplant Team

In this episode of 'In Safe Hands,' host Caroline Verdon introduces Kim Smith, a patient on the waiting list for a hand transplant. Kim shares her life story, including losing her limbs to sepsis, and her determination to undergo a hand transplant. The discussion touches on the process, challenges, and emotional rollercoaster of waiting for a suitable donor. Kim's positive outlook and determination to regain independence are highlighted as she anticipates how the transplant will transform her life.

Produced by Under the Mast, this episode provides an insight into the resilience and determination needed on the journey to new limbs. The podcast is presented by Caroline Verdon

You can find out more about hand and upper limb transplants at LEEDS TEACHING HOSPITALS NHS TRUST here

00:00 Introduction to Leeds Hand Transplant Team

00:54 Kim Smith's Journey Before Sepsis

01:39 Life After Sepsis and Adjusting to Changes

03:03 Discovering Hand Transplants

04:11 The Long Process of Getting on the Waiting List

05:57 The Emotional Rollercoaster of Waiting for a Match

11:31 Hopes and Aspirations Post-Transplant

21:10 Preparing for the Transplant

23:38 Conclusion and Upcoming Episode Preview

In Safe Hands, stories from Leeds

pioneering hand transplant team.

Coming up in this episode.

I've lost five stones since I went on the waiting list.

And I want to be the fittest and healthiest that I can be to receive those

hands and to then do those hands justice and prove that family they did the right

thing by, by helping me change my life.

by giving me that

wonderful gift.

Hello and thank you for joining us.

I'm Caroline Verdon and on this week's episode we meet Kim.

Now we've talked a bit previously about the process from considering

the possibility of maybe having a hand transplant to then actually receiving one.

It takes a minimum of a year for tests, for psychological evaluations before you

can actually then be added to the official waiting list and then it really is just A

wait until a suitable donor hand is found.

Now one of the patients on the waiting list hoping for a transplant is Kim Smith.

Oh gosh, my life before sepsis, um, I was a busy working

woman, um, very independent.

Um, I had two businesses.

I worked seven days a week.

I was constantly on the go and just extremely busy.

And then.

I decided that I wanted to kind of take it a little bit easier.

Um, we bought a villa in Spain and we were out there on holiday

when I then developed sepsis.

So I ended up losing the businesses cause I couldn't work.

I mean, I can't cut hair if I haven't got hands and my other wedding

business I gave to my daughter.

But then when I got the sepsis and lost my limbs.

she gave that up and just became my carer.

So it's been a complete change of lifestyle.

Absolutely.

Yeah.

Now I sit on my backside doing nothing all day.

And am I right that it, that it's affected

Hands and legs.

Yes, yeah, I've lost my hands.

The right arm is slightly shorter.

And I've lost my legs quite far up above the knee.

And do you

use

prosthetics?

Um, I've got them, but I don't use them.

My bungalow is so small, it's hard for me to walk around on

them in here, to even practice.

It just became too difficult for me.

And I just thought, what's the point?

Because I'm having to push a walker.

It's not easy.

Um, and as far as prosthetic arms, I had an NHS Myer Electric, but it

was so heavy, the NHS, so I bought a private one that cost 15,000 pounds.

Yeah, and that's just sat in the box because I've got a cup here

and I can't even pick that up.

It called my water and it doesn't even pick that up.

I'm just easier to do it with my stumps.

I just find things easier to do with my stumps.

So.

I just don't wear them.

When did you find out about hand transplants?

You've probably

spoken to a Cor Hutton.

I was friends with her on Facebook and I then saw that she posted she'd had a

double hand transplant and I commented and went, Oh, you're a very brave lady.

I couldn't do that.

There's just no way I could do that.

And then about a year later, my daughter tried to pass me

something, and I went like that.

Put my arm right behind me, and I could touch it with my arm, and I went, well,

if only I had a hand, I could take that.

She said to me, there's your answer, Mum.

That got the old cogs working in the brain, and I'm like,

yeah, do you know what?

I'm going to speak to Cor.

So I phoned Cor.

I asked her lots of questions.

And I came off the phone and I went, that's it, I'm phoning the doctor.

I want it done.

I want the hand transplant.

I said, after speaking to Cor, I do want it done, but that's got

to be 2020 that I started the

process.

Because the process is, is long, isn't it?

It's not a case of, yeah, I've decided I'd, I'd like a transplant, brilliant,

immediately you're on a waiting list.

My GP had

to write to them and ask them.

Then I have to wait for an appointment to see them.

And then you, you have lots of appointments over a year.

I think it was about 13 or 14 months from start to finish on

the first appointment to being accepted to go on the waiting list.

Lots of tests, lots of consultations, lots of psychiatrist appointments,

um, lots of meetings with the team.

There's a lot involved and it does take time before they can accept me.

They need to make sure, obviously, that I'm mentally stable enough

to be able to accept that.

You need to be mentally strong enough to realise that those hands aren't

going to be yours and they're not going to look like yours and they're

not going to do the same as what yours did, even though they will do more

than what you can do with nothing.

The, it, it took a lot of thinking about, and then again about what color,

um, you have to think, well, could I, could I have a darker person's arms on

a hands on my arms and that, you know, I do go quite dark skinned in the sun.

So I was quite happy to go down fairly dark.

I was quite Happy if they were just white, because I thought, well, if

they're really bottle white, I'll just put some fake tan on them if it

bothers me, do you know what I mean?

It's just try and tone them in a bit.

So yeah, there was a lot involved.

And even now with, I've had 13 calls so far and every time, and

that's 14 actual offers too, like chances, because one call, there

were two in one day, the first one.

Didn't give consent.

The second one wasn't a match, but there was still two on that same day.

So I class that as 14 possibilities.

And every time I get a call, I start getting a bit excited.

And then I'm like, no, calm yourself down.

It's probably a no again, because that very first call, I wasn't expecting it.

It was a Sunday afternoon.

It was about 5 PM.

Roughly.

Hubby had gone out to walk one of the dogs.

And I'm just sat there and the call came in, she said we've got a possible match

and I'm like, Oh, you know, I'm sort of jumping off my feet because I'm like,

Oh my God, I wasn't expecting that.

Hubby comes in and I'm trying to say to him, it's him, like it's Leeds, Hensford.

And he's going, you're joking?

Oh, and.

Each time I've tried to sort of stay grounded and, you know, it

was lovely because after that very first call, the next day,

she phoned me to check I was okay.

Um, are you okay?

Because, you know, it wasn't a match and I'm so sorry.

And I'm like, look, that is fine.

I know that this is going to happen, I'd spoken to Cor, she told me she had 10

calls and then she said, I told them to stop ringing me till they got a match.

She said I didn't want to know.

So I'm fully aware that's going to happen.

So I said, please don't worry, it's fine.

I've had 13 calls now and it still hasn't happened.

And I had two within two days.

And I've had two within a week, or just over a week.

Um, so sometimes they come quite quickly, and you think, Oh, wow!

And then you don't hear anything for quite a few months, and you say, Oh, well, I'll

just go and do this and go and do that.

And then you get a call and you think, Oh, God, am I going

to be able to go and do that?

What I've just booked to go and do now.

Does it make you hesitant to ever turn your phone off?

I don't ever turn it off anyway.

I just put it on silent.

Um, no, it was quite funny because, I was actually in a meeting with my daughter

about my grandson with the school, I think it was back last year, and my phone

kept going, I'm so sorry, I'm so sorry.

Anyway, I didn't recognize the number because it was Prof phoning me, and I just

kept cutting it off and cutting it off.

Anyway, then I got a text, Prof needs to speak to you, and I'm like,

Oh, I'm And then I, I just said to everybody in the meeting, I'm really

sorry, but I need to step outside.

This is a very important call.

I've got to take it.

And then I went outside and he explained they'd got a match.

I think, I think it might've been that it had got tattoos or something.

And that's why he was phoning to check me.

Would I accept them?

And I was like, yeah, yeah, it's fine.

I don't care.

I don't particularly want tattoos, but I want hands.

I don't care if they've got tattoos.

It's no biggie.

I can cover them up with makeup if they bother me.

I just want hands.

And so.

Stepped outside and took the call and it, that's the only time thankfully I've

ever been anywhere where I've had to kind of excuse myself to take the call.

But I did say to him.

It's fine.

I'm in the corridor.

Even if they can hear me talking, they don't know what I'm talking about because

it's coming through in my hearing aids.

So although I'm saying, um, yes, I'll accept tattoos and things like that,

no one knew what I was talking about.

They didn't hear anything,

which

is good.

And

how about things like flights?

Have you been abroad?

I've done one flight, but um, As far as turning my phone off, I

don't, I don't turn it off, I just leave it on, because if a call comes through,

I want to be able to receive that call.

Um, I do put it on silent if I'm in certain situations, but half the

time I'll just quickly, because it's usually down the side of me, silence

it on, yeah, by pressing the button.

Um, depending

where I am.

You do strike me as a very positive person, but

I suppose 24 hours a day, having to keep that positivity is hard.

And you were saying you've been through 14 potentials, Oh, it's, it's happening.

And then it, it, it doesn't happen, must be psychologically

really difficult to, to deal with.

I

don't think it

is for me.

I mean, yes, I get excited because I think it might.

I actually, because I do have to tell my daughter because I have to warn her.

And she said the other day, I don't know how you cope with it, mum.

She said, I find it such a rollercoaster.

She said, you know, I get so excited for you and then it's like a real letdown and

I'm like, don't let it get you down, Gem.

It's fine.

It's going to happen one day.

And, and that's it.

I just, I just know it will happen when the time's right.

If it's meant to be, it will happen, and it's just not quite meant to

be just yet, and it will happen.

I

know it will.

One of the things that Prof was talking about was

how there are conversations about how there's a belief that a heart

transplant is life saving, whereas a hand transplant is life enhancing.

How would you view it?

Oh, it will definitely save my life.

I mean, I don't like going out now.

I don't like people looking at me.

I tend to try not to look at people when I'm out because when I see

them staring at me, I don't like it.

And people do stare because they don't see quad amputees out very often.

So yeah, it's hard, but for me it'll be life changing as well to actually

be able to do things for myself again.

There's nothing like wiping your own backside when you go to the toilet.

I don't have hands, I can't do it.

And so I have to rely on other people doing it.

To get my own dignity back, to be able to do things like

that again, are life changing.

But it will be life changing and life saving to actually be able to

go out in public and think, well, I've got a nice set of hands here,

so they're not staring at those.

It'll just be that my legs are missing.

And I could do something about that if I wanted as well.

Because they can do an artificial leg that's just like a big sock

type thing that's kind of, I believe, like a foam sealed.

Leg that you pull on and make it look like I've got legs

that even have shoes on them.

So I could do that if that bothered me, but I don't, the legs don't bother me.

It's the hands because I see them looking at my hands more than anything.

I just find it hard to cope with when people are staring at me.

Cause some people they'll, they'll really, really stare and they'll follow you.

They'll literally follow you as your chair's moving.

And then they'll come back and take a second look as well.

And I'm like, God, did you not just quickly look and just

get an Eiffel and that's it?

Did you not want to just turn away then?

Yeah, it's really hard.

And I'm quite strong.

I've, I've tried to block it and tried to ignore it.

And I know a lot of people can't, but for me, it will be life changing to

be able to do things for myself again.

Um, it was quite funny because I did ask the question because

I used to be a hairdresser.

I said, I'd love to be able to cut my mum's hair because I don't

like the way she gets it cut now.

And I said to Prof, will I ever be able to cut hair again?

And he said, no, they won't be dexterous enough.

And I thought, I'll give it a damn good go though.

Oh, I will give it a damn good go.

I love that.

I love that.

What things are you really looking forward to being able to do with with your hands?

Obviously, you know, you said, I suppose that there must be an element of things

that You want to do and things that you feel you need to be able to do.

Yeah, I mean, obviously I'd like to be able to go and

shower myself and go to the toilet by myself without having to have

somebody come wipe my backside for me.

Um, I am looking forward to getting back in the kitchen and my husband

especially is looking forward to me getting back in the kitchen

because he hates having to do it.

I, I used to love cooking, baking, having dinner parties, that kind of thing.

So I'd love to get back to being able to cook again.

But even being able to blow dry my hair how I like it.

I mean, I, I can, to a fashion, I can do it.

I like how it is.

I'd like it a bit longer and I can't grow it longer because

I couldn't style it then.

So I have to keep it shorter to be able to manage it.

So it's things like that.

You know, will help me so much more to shower in the, going to the toilet,

the being able to do my hair myself, being able to cook, just being able

to do everything for myself again.

And I think, you know, even going and getting myself a glass of water, I, I have

this drinking cup and I can't take the lid off of it so I can go in the fridge

and I could get the bottle out and I could screw the lid off by using my teeth

and then my arms and I could tip it in.

But I can't get the lid off of that to be able to do that.

I can't get in the freezer because I like ice in it.

I can't get in the freezer to be able to get to the ice, and I wouldn't be able

to get the ice out with my stumps either.

So when I've got a hand, I can just grab it, chuck it in the cup.

You know, things like that just make

things so much easier.

The things that I would really take for granted.

We do, but this is it, we do because we've got them and

till they're taken away you don't realize just how much you use them.

You know, it was learning how to blow dry my hair again was really hard for me as a

hairdresser and my hair was always, always good because I felt my hair needed to

be good with my job and I had to have my face on, you know, I had to wear my makeup

and I still do that because I feel that.

I've done it for so long, I don't like looking at myself

in the mirror without makeup.

When I'm in hospital having the hand transplant, that's fine.

I'm in hospital.

I won't be looking in the mirror then too much and wondering what I look like.

But when I come home and I, and I see myself without

makeup, am I going to like it?

Because for a while I'm not going to be able to use them.

I know that.

And I'm going to struggle, I think, for a little while with

how am I going to do this?

I need to find a new way.

But trust me, I'll find a new way until those hands

are working well enough to be able to do it with one hand.

You are very determined.

That's what you strike me as, a very determined person.

Absolutely.

Yeah.

Everybody says that.

Yeah.

Absolutely.

Very determined.

You know, I found a way to blow dry my own hair.

I found a way to do my own makeup.

Um, I found a way to be able to make a cup of tea.

I went and bought a special cup of tea.

kettle that boils one cup at a time and releases it a bit like a coffee

machine, how the water comes out of that.

It's like that.

So I can get the tea bag out of the caddy.

I can put that in the cup.

I can put my cup underneath.

I can get the milk out of the fridge and I can put the milk in the, in

the cup and I can make a cup of tea.

No problem.

My problem then comes, I can't carry it from the kitchen to the front room.

So then hubby, he has to get up and do it.

So I've made the tea, but you need to bring it in.

So, you know, I try to do things.

I try to be as independent as possible.

It's quite funny because I took a new girl on just over a year ago, new PA.

Gemma and Alison have been with me for a long time, but Julie started.

just over a year ago.

And she'd be keep trying to do things and I'm like it's fine

I can do it myself thank you.

I'll ask if I need help and now she does she stands back and she's like she knows

I'll ask if I need help and I can't do this today can you do it for me you know

or if I drop something I've dropped it can you pick it up because I can't reach

down and get anything from the floor.

But

yeah very determined.

And obviously as you said at the point that you have the

hand transplant, it's well documented that People often find it very difficult

initially because it feels like a backward step because you can't use your arms

in the way that you have learned to, to do things and your hands aren't working

well enough to be able to use your arms.

Your hands and that can be a really difficult point.

How, how do you feel about that?

I, I already knew that was going to be a really tough time and I,

and I've said to my daughter, God, I'm going to probably be saying to you like I

did in the early days of losing my hands.

You know, why on earth did I do this?

Like I was saying in the early days of losing my hands, why

on earth did you let me live?

But, you know, because I know it's going to be hard, how I'll cope,

I don't know, I'll, I'll find a way to occupy myself with things.

I've already decided that if I can, I'm going to buy some little squidgey balls

and sit squeezing them or something to keep practicing them, the hands moving.

I'll do whatever it takes to get those hands moving and doing what I can as

long as I'm allowed to do that because I don't want to do anything that

would cause damage to them, obviously.

Um,

as for my hair and makeup, I'm just going to have to go without it and my hair's

going to have to look a bit naff for a while and I'm just going to have to look

a bit ugly without makeup and hair done and, and, and just not think about it.

I'll have to black out all the mirrors in the afternoon so that I

don't look in them and get depressed.

If I can't see it, I won't know.

So yeah, that's, that's probably.

What would be the hardest?

Um, I don't know.

I think I'll be okay.

I don't think I'll worry too much.

I mean, when I go shopping.

At least I'll have hands and I'll be wanting to show them off.

You'll be a basket all the way, no trolley for you.

You'll be there with like three baskets.

Do you have um, like a hospital bag packed and ready to go?

Yeah, it's all ready.

So at any moment you, you are ready to just head out?

Yeah.

It's just the last minute things like charges and things to go in the case.

Yeah.

Everything's in there.

And it's quite funny because I've lost five stones since

I went on the waiting list.

Yeah.

I packed it with brand new knickers and 90s and everything that were size 24

I think I was, and then they went down to a 22, then they went down to a 20.

So I keep buying all these brand new ones of different sizes and keep

giving them to nursing home and going.

They're brand new, they've been washed and put in a suitcase, they've

never been worn, would you like them?

And they've gone, yes please!

Giving them away, so I'm down to a size 14 now in my tops, but a size 10 knickers,

and I actually think they're a little bit big and I probably could do with them,

but my suitcase, I've still got size 12s and I thought, Bugger it, I'm sitting

down in the wheelchair, if they're a bit big for a few weeks in hospital it really

doesn't matter, I'm not buying any more.

There's only so much you can spend on

underwear, right?

Yeah,

I've spent a

fortune on all these clothes going down the sizes.

But that was when I first came out of hospital, the

depression, I gained that weight.

And then I just looked in the mirror one day and I went, Oh

my God, look at the size of you.

And then it bothered me and I think it bothered me more.

I think it was because I'd been accepted for the hand transplant.

And I want to be the fittest and healthiest that I can

be to receive those hands.

And to then do those hands justice and prove that family, they did

the right thing by, by helping me change my life, by, by giving me

that wonderful gift, because it, to me, that is the most wonderful gift

anyone could ever give me in my life, even better than having my children.

And I hope they don't hear me say that, but, but do you know what I mean?

It's just such, that is just a true gift to give someone, to give them

your, your dying loved one's hands.

So that their life can be changed and continue and it will make my life

better I know it will make my life better and I can't wait for that day

I really can't

coming up on our next episode.

We meet consultant renal physician and hand transplant physician, Richard Baker

I suppose sometimes I think of myself as the doom monger in a way

because I have to talk about complications caused by the drugs, but I think it's

important to get them in perspective.

It's very important that everyone goes in with their eyes open and

knows exactly what could happen.

And I have to say that I think I've met some of the most impressive individuals

that I've ever met in my medical career in the recipients of these transplants.

Because the amount of adversity and the journey that they've had to

go on is really quite remarkable.

And they are quite remarkable characters, very resilient people.

This podcast is an under the mast studio production.