Harmanjit - Interview 38
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Harmanjit donated a kidney to her father in 2008, when she was 29. He was 68 at the time and faced the prospect of dialysis.
Around 1995, tests showed that Harmanjit’s dad had polycystic kidneys. Polycystic kidney disease is a genetic condition characterised by multiple cysts in both kidneys. Harmanjit’s dad had regular monitoring and, over time, his kidney function was slowly deteriorating.
Doctors talked to Harmanjit’s dad about having dialysis and she and her father went to a unit to see what was involved. Seeing patients on dialysis and knowing what an active, busy man her dad was, Harmanjit said she did not want to see him going on dialysis. She said she was aware that patients who had pre-emptive surgery had a better success rate than those who’d had dialysis before transplant. Harmanjit offered to donate one of her kidneys to her dad, and started having tests to see if she would be a suitable match. If she wasn’t, she had an older sister who also offered to be tested.
For Harmanjit, the MRI scan – one of the tests involved – was the worst part of the experience because she felt claustrophobic. All the test results, though, showed that she was fit, well and a compatible match with her father.
A date for surgery was set but Harmanjit and her dad were unable to go ahead because he developed a chest infection. A second date was set a few months later and, in December 2008, the surgery went ahead.
The operation went well, though Harmanjit had an adverse reaction to the pain relief she’d been given. She had a lot of sickness at first but, once her medication was changed, she started recovering well. After a week in hospital, she was discharged. Back at home, it took her about three months to recover and resume all her normal daily activities.
Harmanjit praised the support she had from her mother, sister and uncle, a retired surgeon who came over from America. She also praised the care and information she and her father received from doctors and the specialist nurse (transplant coordinator). She praised the transplant surgeon ‘for his expertise, guidance and great sense of humour that kept us strong throughout’. Some of the doctors were able to speak Punjabi and Harmanjit said this was especially helpful for her parents.
Harmanjit said her strong religious faith was a valuable source of strength throughout her experience. She now has annual follow up and is keen to raise awareness of living kidney donation in British South Asian communities ‘and help remove the stigma associated with organ donation amongst people of various ethnic groups’.
Harmanjit wanted to donate a kidney to her father. Her older sister also offered to be tested....
We went back to the nephrologist [kidney specialist] and they said, “Well, we’ll have to start doing tests.” And at the same time my sister, who’s about fifteen years older than me, she said, “I’d like to do it.” But, at that time, I’d started having all the function tests, respiratory tests, ECG’s and kidney function and everything. So they said, “Well, we’ll do you first. If you do have some complication and we can’t go ahead with yourself, then we’ll consider your sister.”
First of all they checked that I had two kidneys myself, that they weren’t polycystic. And they scan the kidneys. They check the size of the kidneys, that both of them are functioning appropriately, according to what they should be; that there’s no damage to them or anything. Then they did the, I’ve forgotten the name of the,
Was it a scan, MRI?
MRI scan. They did that and they also injected a dye just to check the main arteries and vessels that are surrounding it, that they’re all functioning. And I remember they said that it’s easier to get to the left than the right because there’s more difficult access, so if the left one’s appropriate then we’ll go for that one. They did that one.
They gave me an ECG to check the function of the heart, that that was working. They just did normal blood pressure. I remember the only one that was a bit scary for me is when you go under the, is it the MRI? Yes, I went through that. That was a bit scary because I remember I had one hole at the other end, it’s just because you listen and you feel a bit claustrophobic with your head. But I laugh sometimes, that’s easy, that for me was the worst part, more than the actual operation, that bit because your arms out the other end.
And they’ve got this dye injected, this blue dye into you. And obviously it’s got a thumping sound in the machine, like it’s vibrating. So for me that was, and I actually laughed to my Dad because he met one of his colleagues, one of his friends in the hospital. So he went off to have a coffee with him and I’m like stuck in this machine. But I mean that was about half an hour or whatever, that was okay.
Then they did just normal scans, ultrasound scans. But they were thorough. And obviously they did the respirometer just to, you breathe in and they check your respiration rate and everything. I’m slightly asthmatic, but obviously that didn’t impact or effect the results at all, the kidney, being asthmatic was under control anyway.
We did that and they obviously did the cross match between myself and my Dad just to check that we didn’t react, or there was no reaction between the two bloods. They cross match antigen, and obviously we matched, our blood group.
There is now a lot of information on living donation. From a Sikh perspective, Harmanjit said it...
I think there is information out there. And it’s just something I think that needs to be recognised in the Asian community a lot more now. I think maybe because it’s like the older generation or maybe they’re not that aware that this, something that can happen. I think I know from our religion, like a Sikh point of view, you’re helping somebody. That’s what they say, that everyone should help someone, but you’re helping somebody in their life. It’s something that you can do, so why not do that? It’s not like you’re doing something at the expense, but at the same time causing problems for yourself because I don’t think that anybody would allow that from an ethical point of view.
Harmanjit didnt want her father, an active outgoing man, to go on dialysis, so offered to be a...
They [GP] referred him [father] onto a nephrologist initially. But what happened is, each time he used to go and have his checks – blood tests and 24 hour urine analysis – he used to find his Creatinine and his kidney function level used to be diminished each time. Eventually, it plateaued at just 30%. That was both kidneys together. The combined function was 30%.
Then the nephrologist [kidney specialist] wrote and said, “I think you’d better check some of the options that are available to you, just in case all of a sudden you do go down to 10%. Then it’s dialysis. You need to know what options are available.”
So we got an appointment and we went to see, and he [doctor] mentioned about peritoneal dialysis. And then they did the haemodialysis as well, where they filter the blood. We went for that one.
And I just saw all of those other patients there and the thing is, my Dad is quite a lively person. He gets involved in committees and charities. He’s not one to stay at home. So for three times a week you have to go and you have to sit there for, you know, and I just couldn’t imagine my Dad doing that. And the other one, it was eight hours, nine hours, and you’d have to have peritoneal and they’d put a tube in and filter all the things.
So I just said to him, we came out of the door, and I said to him, “If you need a kidney, you can have mine.” Because I was like, “I can’t, you know it’s better to have the kidney, do the transplant, and then you carry on as normal.”
Had the doctors, had the doctors suggested anything?
No. But they had suggested you could consider being on a transplant list. But then I’d read some data that they’d given me and information and they said an Asian person only has a one in a hundred and twenty five thousand chance of receiving an organ, whereas an English person would have a one in three chance. So I thought well, and the thing is each time his levels, kidney function kept dropping. So I said to him, “Well, if you need a kidney, then I’ll donate.” That’s what happened.
Before any tests, the Asian doctor asked Harmanjit if she was really sure about donating. In a...
They spoke to me first separately on my own and just checked, you know you’re not being forced into it, or all the other implications and things that you can have. Or you’re not being paid for it or whatever. And he did actually say, which was I suppose in a nice, like a fatherly sort of way, said, “Look, you’re not married. You’re Asian. Some people might think, you know, “You’ve only got one kidney.” Some people might see the whole bigger picture that you’re trying to help somebody’s life, and the whole thing.
So I explained to him, I said, “Look, I’m not married now. But I wouldn’t want to be with somebody who would think that there’s something wrong with me because I’ve only got one kidney. You know, I’m trying to…” So I explained that and then he said “Yes.” And then he never mentioned that again. But I think they have to cover everything just in case, that you are adamant and you are sure and you know what it involves. So then I carried on with all the tests and then my Dad went for his.
Harmanjits biggest worry was that the kidney she gave her father would reject. It would mean him...
I think the most scariest point of all is, is it actually going to work? You’ve gone through everything. You’ve gone through the tests, but that’s the anxious moment. I think the night before, his creatinine level was like 740. And then when they came to monitor it again, it had gone down to 400 to show that it is slowly working.
But I think, I don’t know, it would have been like, ‘I’ve done something but it hasn’t worked.’ Not that you’re a failure or anything, but you’re just, I think to myself I would have felt, because obviously then you probably have to do go on dialysis or you have to wait for another one to come forward. And it would have been the whole thing over again.
Harmanjit reacted to the morphine and the pain medication had to be changed. A patient shed met...
I’m sensitive to morphine and I didn’t know that. I haven’t been in a situation where I’ve had any. But obviously my respiration rate fell and because I’m an asthmatic, luckily you know. As you say you know, God’s helping you what have you. There was a lady from the vascular unit, cardiovascular, and she’s probably seen cases that are like this before. And she said to the doctor, “I think this girl’s having some adverse reaction to the morphine.”
And then he, initially it carried on and I was coming in and out of consciousness, falling asleep. And I remember this lady is poking me, and I’m just like, “Leave me alone, I want to sleep.”
But then obviously they took me off the morphine and they put me on Oxycodone and Hydrocodone, which isn’t as rough as a drug and it’s less strong. And then obviously I managed with that and that was fine. But when this was all happening, this lady [another patient] came who’s got her own problems, and she came and she sat by me and she held my hand.
That, for me, was how nice she was, and I thought well I can’t forget that, because okay I’m helping my Dad but yet somebody’s come that I’ve never met before. I’ve only met you the night before for about four hours, and there we were, just had a little chat or whatever.
And this lady has been in and out of hospital. She’s taking lots of medicines. She was in a lot of pain the night before, and I think she had a really rough night, otherwise she was going to go home that Thursday, was it the Thursday? So she was really helpful, just to come and help.