A-Z

Cynthia

Age at interview: 65
Age at diagnosis: 21
Brief Outline: Cynthia was diagnosed with Alport Syndrome when she was 21 years old. She has had three transplants and has also had breast cancer. She has a hearing dog called Todd. Todd is a registered Hearing Dog for Deaf People.
Background: Cynthia has been married for forty years. Her husband is her main carer. She has had three transplants. White British.

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Cynthia first discovered she had hearing problems in primary school during a routine hearing test. She felt that her education was badly affected by her hearing problems and became an avid reader instead. She remembers being bullied at school about her deafness. It wasn’t until she was 21 that she was given a hearing aid which she says looked like a “box-like affair” with an “ugly cord” and a “big plug in your ear”. Consequently she never wore it and put it away in a drawer. Later on she wore digital hearing aids which she found were much better. 

Cynthia had urine infections quite a lot when she was a young girl. When Cynthia was 17 it was discovered that she had kidney problems as she had protein in her urine. She remembers having a number of hospital tests at that time which continued in the following years, although she feels they “didn’t really tell you a lot”. When she was 21 she was diagnosed with Alport Syndrome. Cynthia was 24 years old when she was diagnosed with renal failure and doctors told her she would have to go on a “kidney machine”. She recalls she had only been married for 6 months at the time. Nevertheless, she only waited a few months before receiving a kidney transplant. Unfortunately the transplant did not work and she was in hospital for three months with continuous terrible infections. Cynthia feels that back then, people were put on very high doses of drugs as they often died from such operations. Her new kidney had failed and it was removed before she went back onto dialysis.  

Cynthia says she really hated dialysis. She felt “very stressed on it” and felt “wrung out” on it. She and her husband lived on a farm with a special portakabin outside where she did haemodialysis three times a week. Her husband was trained as her nurse to help her do the dialysis but was often extremely tired. Cynthia followed a restricted diet and limited fluid intake. She says she lived life “as if everything was normal” and used to keep goats and guinea pigs on the farm. She took her guinea pigs all over the country doing shows and tried to live as normal a life as possible. When she first started haemodialysis, she worked as a secretary at a solicitors firm. Later on, however, Cynthia had to give this up as she became exhausted.
 
At the age of 30 Cynthia received a second transplant. Unfortunately, this kidney was also short-lived and only lasted two months before it was removed. After a total of fifteen years of home dialysis in-between transplants, Cynthia switched to CAPD for the next five years which she “loved” because it meant “no more needles”. She would do bag exchanges four times a day and felt she could fit it around her life including going on holiday with her husband. 

In 1995 however, Cynthia had an accident at her local swimming pool when she slipped on wet tiles and ruptured her spleen. She was later rushed into hospital where she had a cardiac arrest. She was very poorly and stayed in hospital for some time. Her third transplant came the following year in 1996 age 44. Her new kidney was flown down from Scotland. Cynthia feels it was meant for her because it started working well only two days after the operation. She spent ten days in hospital which she feels was a big difference to her previous transplant operations. 

In 2002 Cynthia was diagnosed with breast cancer. Her nipple became inverted and she says at the time, she didn’t realise she had breast cancer as she was “looking for a lump”. She had a mastectomy and radiotherapy treatment. Her cancer has not returned.

In 2007 Cynthia received “life changing” help for her deafness – a hearing dog called Todd. Todd is a registered Hearing Dog for Deaf People and is a Cavalier King Charles spaniel. He detects sounds like the doorbell, phone, smoke alarm, alarm clock and cooker timer and alerts Cynthia to these sounds. She feels that being deaf is very isolating and has often felt excluded in groups. Now she has Todd, she feels he keeps her company and she can talk to him instead. She thinks that people can feel awkward when in the company of a deaf person but thinks that “most people that are deaf tend to lip-read. And so as long as you’ve got the deaf person’s attention, it’s not hard… to have a conversation with them”.   
Cynthia feels the support of her husband whom she has been married to for forty years has been “amazing”. He has been her main carer throughout although now she believes this has “taken its toll” and he now suffers from stress-related illness. She believes that “it’s worse for the person who’s the carer, or the onlooker”. Cynthia now suffers with spinal stenosis and arthritis and struggles to walk very far. She finds this very depressing as she doesn’t want to end up in a wheelchair. Overall she feels that “a lot of good things have happened” in her life but that her ill health has been “constant” with “no let-up”. 

Cynthia has several “gadgets” to help her with her hearing including an inductive coupler, an amplifier and a T-switch on her hearing aid. These can help with answering the telephone and hearing on her mobile phone. She also has a loop system which she finds useful when she goes to listen to a speaker and she has one for her TV. She also lip reads which she has done from an early age, although she thinks it is more accurate to call this “face reading” as she finds it hard to lip read when people wear dark glasses.
 

Cynthia did home dialysis in a Portakabin at home for fifteen years and then switched to CAPD.

Cynthia did home dialysis in a Portakabin at home for fifteen years and then switched to CAPD.

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Oh. Well, I hated dialysis. I really hated it. I always felt very stressed on it. Couldn't wait to get off, really. And I worried about the cramp we used to get. Yeah. And I had a machine at home that was in a Portakabin outside. 

Oh.

We had a farm on the fen, the fens in [county]. And I had this Portakabin, my kidney machine was in the Portakabin outside the bungalow we had. Yeah. And my husband worked a long day on the farm, and then he used to - he was trained as my nurse.

Yeah.

And helped me. Was quite stressful, really. Yeah. 

Yeah, it was like a little hospital ward. Yeah. Nowadays the kidneys are tiny, they're like little torches. But this was huge. And we used to put membranes in between boards. ‘Kiln kidneys’, they were called, I think. And we had to build them. So it was quite a complicated thing years ago.

Yes, that was home dialysis. And then I went onto CAPD.

Ah.

Which is the bag, bag method. And I loved it. 

Okay.

Yeah, because no more needles. And I would do bag exchanges, four a day. And I would just fit them around my life. I mean, you know, I would - do exchanges in the car park. Put the bag on top of the car, and it would drain out, down on the floor, a clean bag.

You know? And I loved it. And, I was on that for five years. 
 

Cynthia explains how Todd, her hearing dog, has helped her feel less isolated.

Cynthia explains how Todd, her hearing dog, has helped her feel less isolated.

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I've got a hearing dog. Todd. I had him nine years ago. It's a hearing dog, registered Hearing Dog For Deaf People. And he's really changed my life. You know? He, he - well, works to sound in the house, basically. The doorbell, the phone, smoke alarm, alarm clock, cooker timer. He comes and alerts me. He's a little Cavalier. And he's, he's sitting on my feet here. He's probably snoring away actually, but I can't hear him.

And he comes to find me when he hears the doorbell go, for example. And he nudges me with his little stub nose. And I say "What is it, Todd?" And he takes me to the sound. And we also fund-raise with him. Which is lovely. You know, people talk to me, which I like a lot. You know? And also people - you know - ask me questions about him. 

Which is lovely. And he's such fun, you know? So I recommend anybody that's deaf, get a hearing dog.

Yeah. Because being deaf is very isolating. Very isolating. I've never really been able to cope with it. I join groups and I tend to drop out after a while because I can't cope with feeling isolated, because people don't talk to you. You know? Very sensitive maybe, I don't know. But I often go to the loo and I cry. That's pathetic really, but that's how it makes you feel. But with Todd, I can talk to him instead, can't I [laughing].
 

Cynthia says her husband is amazing but that being her carer has taken its toll on his health.

Cynthia says her husband is amazing but that being her carer has taken its toll on his health.

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I mustn't forget my husband. Because we've been married forty years, and he's been amazing. He's always there for me. Yeah. Unfortunately it's taken its toll, and, you know, think he's suffered from stress-related illness. Yeah.

Yeah, do you think it's been difficult for him then?

It is very difficult. It's worse for the person who's the carer, or the onlooker, I think. All the things have happened to me, there has been rather a lot.

And my husband's always been there for me. But you know, it's just been constant. There's no let-up. You know? I know I'm lucky enough - a lot of good things have happened. Like, you know, I'm lucky enough to have a transplant that works. And my cancer hasn't come back. So, that's a good thing. But it's just so wearing. You know? You get very tired. Mmm.
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