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Frank - Interview 16

Age at interview: 62
Brief Outline: Frank's wife, Jen, sadly died in 2008, aged 62. She had been unwell for about a year and was later diagnosed with motor neurone disease. She was a nurse, and gave the gift of life to two people with kidney failure.
Background: Frank is a weighbridge clerk and has two adult children. Ethnic background / nationality' White British.

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Jen

 

Frank’s wife, Jen, sadly died in 2008, aged 62. She had been unwell for about a year and had found it difficult to walk uphill. She’d also had arthritis and a bad back but they hadn’t been too concerned about any serious health problem. As the year progressed, however, Jen started falling over and this was more worrying. When she was struggling to breathe, Jen’s son took her into hospital, where she stayed for tests.

The following night, Frank received a call from the hospital and was asked to come in. He went immediately with his son and daughter.

Jen was unconscious for a week and then developed pneumonia. Frank was told that she’d had a bad reaction to one of the drugs doctors had given her. She was transferred from the local to a city hospital, where doctors diagnosed her with motor neurone disease. They also told Frank that Jen was unlikely to survive. At this stage, Frank spoke to the specialist nurse [coordinator], knowing that, being a nurse, Jen was in favour of organ donation.

Frank praised the care Jen had received from health professionals and said the transplant coordinator had given him, his children and grandchildren locks of Jen’s hair and her handprints. Frank said Jen had been treated with dignity and respect throughout her experience, and he urged other people not to worry that their loved one would be treated in any other way.

A few weeks after Jen’s death, the specialist nurse contacted Frank to tell him that Jen’s kidneys had been donated to a 61-year-old man and 71-year-old man. Her liver had been used to further medical research.

Both of Jen’s recipients wrote to Frank shortly afterwards. He now receives annual updates about them from the coordinator.

Shortly after Jen’s death, Frank contacted the Donor Family Network (DFN), a charity run by donor families that aims to support donor families and promote organ and tissue donation (http'//www.donorfamilynetwork.co.uk/). He said he and his family received valuable support from the DFN and praised the work they did to help other people in a similar situation. He also advised other people to consider registering for organ donation.   
 

 

Frank and his wife, Jen, had talked about organ donation very casually but she had never...

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We had discussed it in the past because, you know Jen being a nurse, it was something that, because she did work for a while at the [hospital name], at the kidney unit. She did work there for a while. And I think that brought it home to her and we’d discussed it in, as you do, nothing serious. But she always said, “Oh well, that can, whatever of mine they want, they can, they can have in that respect.” So yes it was something we were aware of. And something that Jen definitely would have, was prepared to do. Yeah, there’s no doubt about that. I think working at the [hospital name] for that time, seeing people on dialysis and all the rest of it, I think that brought it home.

The day after they’d removed her organs, my son had actually gone to the hospital to get the paperwork sorted out. And he was approached by a member of the neurological team and they asked if he would be, or we would be prepared to give permission for them to remove Jen’s brain and part of her spinal column for research into Motor Neurone. Well [my son] knew our feelings so, without even having to consult myself, he said, “Yeah go ahead.”

So although her death in some ways was a tragedy, in other ways it was a victory because I lost Jen but she saved two. So we came out on top as it were. The odds were on our side. I know it’s what Jen would have wanted. She’d spent her whole life caring for other people.

But, like so many people, I don’t think she’d ever got round to doing the donor card. I think she’d put it on her driving licence because there was an option on that. But I can’t remember if she ever got round to doing a donor card as such. I’ve done mine on line now because that’s far easier for the hospital to check. All they’ve got to do is just go on line, everything’s there.
 

 

The transplant team gave Frank lots of information. He felt it was his duty, as Jen’s husband, to...

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He [doctor] told me that it definitely was Motor Neurone, of quite an aggressive type. And I said, “Well what’s the prognosis?” And he said, “Well I’m afraid there isn’t one.” He said, “It’s a matter of literally switching off the life support.” I said, “Well if anybody’s going to do that,” I said, “I’ll do it. It’s my duty.”

So arrangements were made for the following day. I then asked him if he could get in touch with the transplant team to come and see me. And a lovely young lady came along and I explained her the situation. And the transplant team were fantastic. They explained everything in the greatest detail of what would happen. They took us through all the paperwork because, unfortunately, there’s a little bit of paperwork involved but nothing too frightening. Nothing too intrusive. And it was all arranged.

They told us that, when we saw Jen the next day, she’d be dressed in a theatre gown. And that once everything had been switched off, instead of the long goodbye’s at the bedside, you had sort of five minutes because obviously it was important to get the organs while they’re fresh as it were.

So at ten o’clock we switched off, or rather I switched off, and within twenty minutes Jen had passed away very peacefully. And we had a chance to say our goodbyes. And they took her away.
 

 

The care Frank’s wife Jen received was fantastic in the local and city hospital. There was always...

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The [local hospital], where she [wife] was first, they were unbelievable. They bent over backwards. I was quite surprised in fact that the nursing team there, literally if the nurse who was scheduled to look after Jen, if she wanted to go and go to the loo, or have a cup of tea or whatever, she couldn’t go until there was another nurse available to take over. So at all times there was a nurse by her bedside.

And, again, the same when we reached the [city hospital]. It was a lot more high tech there than the equipment they had at the [local hospital]. And again the staff there were just absolutely brilliant. The doctors and the nursing staff, any questions we had they went to great pains to explain, because there’s all this massive machinery around and they went to great pains to explain, “Right, that’s her blood pressure, that’s this, that’s that.” So we could, if we went away from the bedside and came back, the first thing we’d do is look at the screen and we’d know exactly how she was getting on. Because they had taken the trouble and they didn’t make a mystery of anything.

But no, as I said, they made sure that, on every occasion, we knew what was going on. If they had to ask us to leave for any reason, when we came back in they’d say, “Right, we asked you to go because we had to do a, b, c,” whatever. And obviously it’s not nice for outsiders to be there watching while they’re doing their tasks. But you certainly couldn’t fault the care on either side. They were both absolutely fantastic.
 

 

Frank was given locks of his wife’s hair and her handprints. The nurse wrote to tell him which...

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They asked would I like a lock of her [wife] hair? I said, “Oh yeah, brilliant.” They said, “Well would you like us to take a hand print?” And again I said, “Oh fantastic.” So this they did. They took a lock of her hair for myself, my daughter and my son. And we all got hand prints. And they said, “Within a few weeks we’ll be in touch and let you know what’s happened.”

And sure enough they wrote to me within a few weeks to let me know that they hadn’t been able to use Jen’s liver for some reason. It wasn’t suitable for transplant. But that it had gone to a university and would be used to test anti-reaction drugs which I thought, “Brilliant,” so that’s not a waste.

And the kidneys they’d gone to two blokes. [Recipient 1], he was aged 61 and [Recipient 2], he was aged 71. And the operations had been successful. In fact they were both at home doing very well. I was very lucky because, within a month after that, both [Recipient 1] and [Recipient 2] wrote to me which, that was really appreciated, the fact that with all their troubles that they’d taken the time to write. I really appreciated that. In fact [Recipient 1] has written a couple of times to me in fact.

And the transplant people keep in touch. Every, well it should be, I should be getting another one soon. But each year they drop me a line and let me know how they’re progressing and apparently they’re both doing well.

It’s not as if they take the organ and run as it were. You’re kept informed, you can have as much or as little information as you want. If you don’t want any contact with the recipients, fine. Your wish is respected. But if you would like to have contact, then they will, using them as a medium, you can.
 

 

Frank’s wife, Jen, hadn’t been given a diagnosis but had back pain and arthritis for a year when...

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Jen’s problems started about a year before she finally passed. She found it difficult to walk up hills, but we all put this down to the fact that she had arthritis and a bad back from being a nurse.

Then, as the year progressed, she started to fall over. And that became a bit more worrying. One particular morning she spent nearly two hours on the bedroom floor before, I’d kept trying to phone her and there was no answer. And unfortunately my daughter had had to go out first thing, but as soon as she came back I phoned her and said, “Look go in.” And she found Jen on the floor.                           

But again the GP just, it’s such a difficult illness to diagnose, Motor Neurone, that it was put down to other things. She had various scans and tests, and they even sent her to see a psychiatrist at one stage. And it came to a head at the end of November 2008, and she’d had minor breathing problems, but nothing much. But this particular Sunday she was really struggling to breathe. And my son had popped in for a visit. And we kept saying to her, “No, there’s nothing wrong with you. It’s all in the mind.” Because that’s what we all thought at that.

Anyway, the situation got that bad that in the end my son said, “Look, I’ll take you to hospital.” And he took her off to A&E [Accident and Emergency] and they checked her out and found that her oxygen stats were quite low. So they kept her in that night just for observation. Did some tests the following day, which were inconclusive. And they recommended that she actually go through with the [city hospital]. But, as so often the case, there was no bed available. So they moved her into CCU [Critical care Unit] just to keep an eye on her at the [local hospital].   
 

 

Frank tried to reassure his wife, Jen, that she would recover. He later received a phone call...

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They moved her [Frank’s wife] into CCU (Critical Care Unit) just to keep an eye on her at the [local hospital]. And the following day I’d been there with my daughter all day visiting. And about five o’clock I says, “It’s time to go home,” when the strangest thing happened. She [wife] turned around and, calm as you like, she said to me, “I’m going to die.”

And I was taken aback and straight away I thought, make a joke Frank, so I said, “Oh we’re all going to die sometime, but not now love. And she said, “No, I’m going to die.” I said, “Well no,” trying to reassure her. I said, “Come on, I’ll see you in the morning.” And my daughter and I, we came back home.

I phoned the hospital about 11 o’clock that night and they said, “Yes, she’s fine. She’s just settling down.” So I went to bed. About half an hour later the phone rang and it was the [local hospital] and all they said was, “Could you come in as soon as possible?”

So I phoned my son and got my daughter up and we all shot up there, and after a bit of trouble getting into the hospital, because of course it’s all locked up at that time of night. Finally got to get into CCU and Jen wasn’t in the side room anymore. She was in the middle of the ward with, I don’t know, a dozen people all leaping and flapping around her.
 

 

After a very bad night, Frank phoned the Donor Family Network. The volunteer was very supportive...

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Out of the paperwork that came from the donor co-ordinator [specialist nurse] was various organisations, and one of them was the Donor Family Network [DFN]. And I’d had a particularly bad night. I think it must have been about five o’clock in the morning, I saw there was a phone number. And I dialled it and I was expecting to get an answer phone to leave a message.

But, bless her heart, a very sleepy [name of DFN volunteer] answered the phone. And I just burst into floods of tears, and she spent, oh crikey, I think it was nearly an hour we were on the phone, reassuring me. Because she’d been there. She’d lost her partner, so she knew exactly what I was going through. And they’ve just been absolutely marvellous. On a couple of occasions I’ve had need to call them. I was worried about how the grandchildren were reacting, and [name of DFN volunteer] said, “Okay, I’ll come down and pay you a visit.”

So she drove down, all the way from Birmingham, had a long chat with the grandchildren and she said, “There’s nothing at all wrong with the grandchildren. They’re behaving quite normally.” She said, “There is somebody here with a problem,” and she turned to my daughter and she said, “You’re the one with the problem at the moment.” So she helped [my daughter] to sort herself out.

But they are a wonderful, wonderful organisation. It’s just run by donor families, for donor families.
 

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