Linda - Interview 33
More about me...
Linda had diabetes since the age of 22 and regular kidney function tests. Around 2000, she had been feeling unwell and went into hospital with what she thought was pelvic inflammation, something she’d had before. Tests showed, however, that she’d had kidney failure, and this came as a huge shock.
Over time, Linda became increasingly tired, irritable and unable to sleep. As she became weaker, she was no longer able to work.
For six months, Linda had to have peritoneal dialysis. This involves using the patient’s peritoneum in the stomach as a membrane across which fluids and dissolved substances are exchanged from the blood. Fluid is introduced through a permanent tube in the stomach and flushed out either every night while the patient sleeps or via regular exchanges throughout the day. Its main advantage is that the patient can have treatment without visiting the hospital.
Linda then went onto heamodialysis, a method for removing waste products such as creatinine and urea, as well as free water from the blood when the kidneys are in renal failure. She had to go into hospital three times a week for about two years, and found the process of having needles in her arms very painful.
This was a very difficult time for Linda and her family. Linda had no energy to do normal daily activities. Her husband took over the cooking, household jobs, looking after their daughter and pets, as well as working. Linda said she also missed out on precious time with her teenage daughter.
In January 2004, Linda received a call for her transplant. Her donor was a 22-year-old who’d had a brain haemorrhage.
The surgery went well but, shortly afterwards, Linda had chronic diarrhoea and spent a week in hospital. The diarrhoea lasted for three months and turned out to be oesophageal thrush. Her medications were changed and the diarrhoea stopped. She was well after that but, because of the diabetes and kidney failure, had very poor eyesight and is now registered blind. She also has to take painkillers for diabetic neuropathy to help with the constant pain she experiences. She has chronic fatigue syndrome, too, but said she does not let any of these hold her back.
A year after her transplant, Linda studied for a HND in social science. She also did a lot of voluntary work and, two years after her transplant, became a volunteer for Transplant Support Network. This is a nationwide network that provides telephone support to patients, family and carers of all solid organ transplants (http'//www.transplantsupportnetwork.org.uk/about.htm).
Around 2009, Linda was diagnosed with irritable bowel syndrome. However, when she mentioned her symptoms to the specialist nurse [transplant coordinator], Linda was asked to come in for some tests. These showed that she had blood cancer. Linda had chemotherapy and was very ill during this time with infections.
Over the last few years, Linda said she has looked and felt well. She enjoys spending quality time with her grandchildren, cooking and interior design. She praised the health care she’d received but felt there was a lack of follow-up care and support, such as counselling. Linda now supports other people who are have had transplants.
Linda got her call at midnight. She and her husband rushed to hospital but the organs were...
It was the 25th January 2004. We were in bed. It was a Saturday night and the phone went at half past twelve at night. And my husband answered it, and he said, “Right you have to go, that’s your transplant.”
I got up out of bed and made myself a cup of tea, as you do. And we had to go to my local hospital first to pick up my notes to take with us. So we did all that, and I think we eventually got to the hospital about three in the morning. And as we were aware that most people who’ve had transplants will know there’s a window of time that you have to get your transplant in.
And I was going through a double transplant, which was a kidney and a pancreas, so we rushed. We got to the hospital, we got admitted. We got into the room, and nothing seemed to be happening for a long, long time. And it turned out that British Airways wouldn’t let the organs on the plane because it was locked boxes and, at the time, there was all the parcel bombs. So there was a delay in the organs getting to the hospital. And then when they got there, they had to be all checked again. And eventually they came and said, “Go and have a shower, get prepared. Get the gown on and we’re just waiting on a phone call.” And that phone call came.
Linda felt much better than she had in a long time and other people noticed she looked better....
In the last few weeks, family, friends, people I don’t know terribly well, shop keepers, local people have been meeting me because I’ve managed to get out after all that snow and bad weather, are all telling me that I’m looking really good. And I must admit I feel really healthy for the first in a long, long time.
Which is just as well because I’ve got two wee grandsons and one’s four and the other one’s 19 months. And, without the transplant, I would never have seen them. And they really light up my life so much.
I don’t have the energy sometimes to crawl about the floor, but you do it. You do it because they’re such a joy. And they just lift your spirits and make you feel so glad to be alive that, you know. The work I do supporting other people, my grandchildren, my own family, are just being a tremendous support to me.
Linda was vomiting and had diarrhoea. She had oesophageal thrush and wasnt tolerating her...
I took chronic diarrhoea. However, they sent me down to my local hospital and I was in there for a week. I couldn’t eat at all. I was being sick all the time. I had chronic diarrhoea, and this went on for nearly three months. It turned out I had oesophageal thrush. Which they cured.
I had to go to the hospital every Monday, that I had my transplant in, and every Wednesday, Friday to my local hospital. But, on a trip up to my local, my transplant hospital, the consultant came out, by which time I was in a wheelchair because I couldn’t even stand up. And he said, “Walk into my surgery.” And I said, “Well, I can’t.” I said, “Stop the diarrhoea, and I’ll walk, I’ll dance into your surgery.” And the answer to that problem was, “You’re not tolerating the immuno-suppressant. We’ll change it.” They changed it. The diarrhoea stopped and I can honestly say I’ve been well ever since.
Linda was ill for a while before being diagnosed with blood cancer. The chemo and some infections...
About a year and a half ago, not last summer, the summer before, I took ill again. This time they thought I had irritable bowel syndrome. I was rushed into hospital and that’s what was diagnosed.
However, a few, well it was actually two months later, I was seriously ill. I phoned the transplant co-ordinator [specialist nurse]. I told her that I had been taken in and diagnosed with IBS. I told her my symptoms. She spoke to my consultant surgeon and he told me to go straight up. So I spent about three days in hospital going through a series of all sorts of tests and, as it turns out, I had blood cancer.
Apparently, one in ten transplant recipients will get blood cancer I was told. And it was in the papers recently, it’s a 50'50 survival rate. So I guess I’m pretty lucky. Because I then had to go and go through chemo, which I didn’t take to very well. And I took all sorts of infections, and was really quite seriously ill. I think it was touch and go a few times according to my family and doctors.
However, last July I got the all clear. And I’ve had two check-ups since and they’re all clear. I’m due another one in March, which I’m sure will be all clear because I feel absolutely brilliant right now.
Linda wrote to the donor family but had no reply. She wondered if it was too painful for them. It...
I never got a reply back which is, that’s their decision. It’s got to be their decision. It maybe too painful for them. I wrote and told them that I was doing well, and obviously what age I was and I had gone back to college. And I had one grandchild at the time, and you know, what it’s meant for me.
And that might just be enough for them to know that somebody’s life was brought back. And I’m reckoning if they had a son of 22, they could be anything from 40 plus, so there’s a chance they could be grandparents themselves. You know, just to know that somebody else has had the benefit of that must mean a lot, otherwise they wouldn’t have done it.
The pressure to do everything was always on Linda's husband. The family fell apart for a while....
The stress was always on [my husband], more so than my daughter. I think she just missed out on a lot. And there was frequent arguments because I couldn’t do housework, and [my husband] just didn’t have the time, between trying to work, trying to look after the food, doing the shopping, seeing to the dogs, seeing to [our daughter’s] transport needs, his own things.
So I think realistically, as a family, things fell apart for quite a long time. And then after my transplant I was seriously ill because, I had been seriously ill before my transplant, and then I didn’t pick up, because I took chronic diarrhoea and oesophagus thrush. So for that period of time I don’t think anybody actually knew where they were going and what they were doing. I don’t know how [my husband] held it together at times, I really don’t. So it was a tough time.
And roles did change because, while I was ill before my transplant and probably just after, my daughter, [daughter’s name] and [my husband] worked for the council, both of them, in different areas. And they’d come in from work at night and they’d talk about people, people that I knew because I used to work for the council too. And I’d just lay, because I didn’t have the strength to talk and I used to say, “It’s you two that are like husband and wife, and I’m just lying here in the road, you know.”
And roles did change for a long time because [my husband] would say to [our daughter], “What will we get for the dinner at the weekend? What do you fancy this weekend?” Or, “What do you fancy for your tea tonight?” But I wasn’t eating, so nobody included me and that was hard because, and also in a marriage you lose the relationship of a marriage or if you’re living together, whatever relationship it is because the other person becomes a carer for you.
And that’s really hard, and then you feel useless because you’re relying on this person to do everything for you. Help you in and out of a bath, help you get showered or washed. And I’ll be perfectly honest, there was times where I messed the bed. [My husband] was left responsible for that as well. And you feel you want the whole world to close in on you. You just think, “What kind of life is this?”
But you get over it, you do get over it. And thankfully now the roles have reversed again and I’m back into my cooking and experimenting with cooking because I love cooking. And I love housework, and I love home things as well as other interests. So I can see the pressure coming off [my husband] now. And he works for himself so he’s surely busy so it’s good. He comes in at night and his tea’s ready. And that makes me feel good. And it makes him feel a whole lot better because normally he’d come in and have to start making it. So yes, roles in families do change quite dramatically.