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”.
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.
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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.
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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”.
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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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