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Alport Syndrome

Alport Syndrome -after a kidney transplant

People described how they felt after their kidney transplant. Some mentioned feeling sore around their stomachs but also their throats where the oxygen tube had been. Often people spoke about the colour of their skin and how they looked better. Diane said people didn’t recognise her because her “greyness disappeared”. Angela said she looked green before and Alan said his spots cleared up. Steve said his “mind came alive again”. Michael X said that when his wife Sal got her first transplant it was a “dramatic and wonderful breakthrough”. Others said they had more energy very soon after the operation. As Steve said after his transplant; “You don’t realise how sick you are when your kidneys are failing”.
 

Alan said he felt a huge transformation after his transplant.

Alan said he felt a huge transformation after his transplant.

Age at interview: 49
Sex: Male
Age at diagnosis: 19
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Very tired all the time. But having said that, I felt a huge transformation once I'd had that kidney in and I was still in hospital. You know what I mean? I had lots of spots, and my face - my complexion - was just much better. I looked healthier, straight away.

Really? 

Yeah, it was a huge transformation.

That quickly?

Yeah. Yeah, yeah.

And did you feel it in yourself, like much better, or?

Oh, yeah. Yeah. I didn't have the, the nausea associated with, you know, renal patients. It's just like I was cleansing my body, you know? My waterworks were going again. I felt better. I didn't feel - once I came out of hospital, I didn't feel fit, because I was so heavy. I think all the water that I was carrying, carrying around, I just felt sluggish. You know? I mean, I did try. You know, I did engage in physical activity, I started cycling and walking. But I think - I used to have a fast heart rate, and it used to really tire me out. I don't know whether it was the medication, the blood pressure tablets, but made me a bit nervy, you know. And I had to accept it.
 

Richard Y describes how he felt after his transplant operation.

Richard Y describes how he felt after his transplant operation.

Age at interview: 37
Sex: Male
Age at diagnosis: 23
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The next thing I remember was quite embarrassingly lifting up my gown, trying to see - because I'd wanted rid of this PD tube into my stomach - I was warned for the neck might remain, because if the kidney doesn't kick in straight away, might have to do some. So I knew that was there. But I - this tube, that was the thing I wanted rid of. I was lifting that up, not realising obviously I'm butt naked underneath this gown. Trying to look round, and pull this thing off, and - I'd had my tube out, and I'd got a big bandage here, and - yeah, naked.

I'd got two nurses helping me out, trying to cover me back up again, and get me to drink a little bit of fluid. And I'm trying to guzzle fluid, and they're trying to give me it through this tiniest little straw. I remember high-fiving in some weird anaesthetic state, high-fiving anybody who came past. Shaking people's hands. Maybe a bit euphoric, maybe a little bit high on painkillers, and everything like that. So it was quite funny. And then went back to the ward. Went past the day room, saw my family [laughing]. Apparently I tried to get them to phone [my cousin], because he was in a different part, to find out he was. What I didn't realise is that when they removed his kidney they'd pumped him full of air, and he'd had quite nasty surgery, and he was in some discomfort. And he was on a morphine driver, trying to press that button like it's a fruit machine or something. So he really struggled, from my understanding. At that time I was a little bit out of it. And then we're looking at - so that was a Monday. Tuesday. Probably early afternoon. What time would it be? I'd started to sit up, and they'd got me out of bed quite early. It was about seven o'clock I came back from theatre the day before. And it was about eleven o'clock they'd helped get me out of bed. And I was sat there. And I heard a shuffling. And this drip stand came round the corner. And he's hunched over, he'd - they take the kidney out similar to how they put my dialysis access in, so they cut just below the belly button, and then they use keyhole surgery to go in and cut it out, and then this guy puts his little hand in and pulls the kidney out. So he came hunched over, holding his stomach. Probably one of the best things I've ever seen [laughing]. Him in pain is not what I wanted to see, but to see him up on his feet. Because they pumped him full of air, he just kept burping, trapped wind, and complaining about his shoulder. And then the following day - so he had the surgery Monday morning. My partner took him and his partner home. Because he wanted to see the kids. He left on a Wednesday evening at six o'clock. So he'd had surgery Monday morning to take a kidney out. Probably a little bit too early, but he wanted to be at home.
Blood pressure could return to normal after a kidney transplant. Diane said her creatinine levels “went to normal” 12 hours after her transplant. Several people mentioned passing a lot of urine after their operation and both Alison and Richard Y said their bladder had “shrunk” from being on dialysis and having fluid restriction. Several people lost considerable weight because they no longer had fluid retention. Angela said she felt a bit weak after her operation but was not in a lot of pain. She felt her dialysis operations were more painful. Other people did not experience feeling much better, particularly if they were trying to get the medication to the right level, but were relieved they no longer had to have dialysis.

Some people had a very quick recovery like Diane and Richard X who were only in hospital for 5 days after their transplant operation. Robin returned to work after a month and Angela went back to work after 7 weeks as she felt it gave her a purpose. Mariam and Anthony had worse experiences. Both had collapsed lungs during their operation and took much longer to recover. Mariam was in a coma for two weeks and was in hospital for a month and half after her operation.

Transplant patients have regular checks immediately after the operation. People described daily check-ups at first, which were slowly reduced over the following months. People also spoke about the side effects of being put on strong medication. Robin said he felt his recovery from a transplant was a “gentle ascension into good health” while others experienced a range of emotions after the operation. Steve said he felt very anxious about his new kidney and became fixated on how long it would last, particularly as his friend had donated his kidney to him. He found it helpful connecting with others who had been through the same thing. 

Mariam and Steve both got involved in transplant sports. Others said they experienced highs and lows. Several people mentioned adopting a healthier lifestyle such as eating more healthily, exercising and giving up alcohol.
 

Robin says that there are emotional highs and lows after a transplant.

Robin says that there are emotional highs and lows after a transplant.

Age at interview: 62
Sex: Male
Age at diagnosis: 26
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One thing you particularly are aware of it that and the various drugs accentuate this is that your emotions are thrown all over the place when this is all going on. It’s partly a result of the drugs. It’s partly a result of what’s going on. Physically it’s partly, exactly what you’re undergoing anyway but your emotions go up and down, up and down. I mean to extremes because of your body, the whole, everything in your body is changing, all your chemistry levels are changing in your body. You know, your emotions are completely being thrown around because of all of that. And, and the slightest change in your physical condition can cause you to think, “Oh this is rejecting. It’s not working.” And it can, it’s a very, it can take some handling.

So how were your emotions during that time?

Oh I can remember being very high and very, very low, absolutely. You get very, very depressed. You think it’s not working and you get emotionally very, very high, you know, you think well, well what’s he on. You’re actually not really on anything. It’s just completely yeah high. But it, it does produce extremes no questions.

Quite extreme sort of emotions?

Yes absolutely.

The sort of things that you are going through and?

Yes and I don’t think, again maybe now but I do remember that side, especially not being dealt with quite so well medically but if you are having physical symptoms, physical indications but then you got to be very carefully monitored but the emotional aspects of what you are going through were not really being dealt with. And I just rem-. I just have one recollection of one nurse saying to me, “Oh you do know that this drug in particular when you do this will actually make you feel extremely depressed.” I said, “That’s the first time anybody told me that. If somebody had said that was the case I’d know a bit better how to deal with it.” It’s just a medical, sorry, it’s just driven by a chemical reaction that will ease off rather than saying, “Oh my goodness”, you know. “The whole world is tuning black.” In fact when she said that I actually felt better because I know this is something I can deal with. I felt that was something, I felt was a little bit lacking at that time.
Transplanted kidneys could last many years; Alan’s kidney lasted 22 years before he lost it through a motorcycle accident. Cynthia was on her third transplant which had lasted 20 years. Richard X’s second transplant had lasted 11 years so far, while Mariam’s transplant has lasted 9 years. 
Unfortunately some people experienced kidney rejection – for Cynthia, her first and second transplants were rejected after a few months and she was put back on dialysis. Other people talked about “episodes” of kidney rejection after their transplant which were described as “quite common” or “a bout of rejection”. These were often dealt with through increased medication.
 

Angela says that her new kidney took a while to settle in after some rejection.

Angela says that her new kidney took a while to settle in after some rejection.

Age at interview: 40
Sex: Female
Age at diagnosis: 10
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Can you talk me through what happened with the transplant?

So, yeah. So then I had the transplant. And it was broadly, you know, fine. Uncomplicated. Went back to work seven weeks later. I had one episode of rejection. But I think I had in my head at the time that it rejected, was just like 'maybe it hasn't worked', and that was a big awful thing. But actually I think it was quite common, or it was then, to have a bit of rejection. And normally they just - tablets, they can treat it. It's normally about just basically - straight after having a transplant your immune system is lowered a lot more than it is now. So your body obviously gets used to it, and the kidney settles in. So it was just a case of, it was just a case of basically taking more tablets for a while. So it didn't - wasn't really problematic. And then you have to take more tablets afterwards. But then apart from that, I kind of - in my mind - was largely back to normal after that.
Kevin said that his kidney function dropped after his transplant and his doctor discussed the possibility of going back on dialysis which he said was “depressing”. Luckily his kidney function did “eventually pick up”.
 

Robin says that after thirteen years his first transplant failed.

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Robin says that after thirteen years his first transplant failed.

Age at interview: 62
Sex: Male
Age at diagnosis: 26
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Around thirteen years later the transplant eventually failed. And so there were certainly family memories of me getting slower and running to a halt and having been able to do less and less. So I switched to a different kind of dialysis thereafter for some time. There was forms of dialysis where you can do it through the peritoneum and overnight, which meant that I could still continue to travel overseas with my job and family holidays and so forth without being so restricted to machinery at a hospital or at home which was again very, very helpful. That took around five or six years before another transplant became available.
One of the signs of kidney rejection is feeling tired. Steve described it “as a horrible tired, where you’ve got no energy whatever you do”. Paul said his second kidney wasn’t rejected as much as it “ran out of steam”. He describes how transplant isn’t “a cure but a treatment” and it can come with another set of problems.

Robin and Paul who both had several transplants said they found it more difficult as they got older because they knew what was coming. Paul said as much as he was hoping for the call, he dreaded it. At the same time they noticed many medical advances in recovery time and medication after a transplant. Richard X’s mum was able to have keyhole surgery, an option not available for his dad several years earlier. Richard X took longer to recover from the second transplant and he wonders if it was because he was older. His family go out and celebrate the anniversary of this second kidney. Paul said that frequently people name their new kidneys and his is called “Dave”. Alison says hers is called “Big Kid” because it seemed larger than usual when she had her ultrasound. She went out with her friends on her “kidney-versary” and had afternoon tea and prosecco.
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