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The struggle continues for Georgina Beyer

Tue 25 Oct 2016 In: Community View at Wayback View at NDHA

Just when the future began to look promising for Georgina Beyer, as she languished year after year on dialysis hoping for a kidney transplant, her hopes were dashed. Beyer, the transgender showgirl and entertainer who became a local body politician and then the world's first ever transgender MP, representing the Wairarapa, had spent three years in limbo with renal failure when late last year, she received what she calls an “incredibly generous offer.” A close gay friend from the Wairarapa offered her one of his own kidneys in the hope that it would be compatible for transplant. But as the drawn out testing process was being undertaken to ensure the donated kidney would be a close enough match, disaster struck. “I developed heart issues in January,” Beyer says. “It was discovered my heart was only pumping at 32 per cent [of normal capacity]. So they altered my then dialysis regime and added some medications to see if they could get my heart pumping stronger. When they did the follow-up test some months later things had in fact worsened, my heart was only pumping at 22 per cent at that stage. At that time I had oedema, in other words I was retaining fluid. Because of my kidney failure fluid's not being expelled and the peritoneal dialysis,” a process which is less physically invasive that alternatives and can be done several times a day at home, “wasn't doing the job well enough so they transferred me to haemodialysis.” Haemodialysis is a more intensive and invasive procedure, requiring regularly being hooked up to hospital machinery for hours at a time several days a week. “That was to draw off more fluid and ease the burden on the heart and hopefully get some improvement on the heart rate... which I hope improves enough to get me eligible for a transplant again. Otherwise I'm off the transplant list and really face stark choices. Either I do the haemodialysis or I die fairly rapidly. It's as simple as that.” “A good friend of mine from the Wairarapa, who happens to be gay, for a birthday gift last year offered me his kidney which was an incredibly generous thing to do and I'm forever grateful." She says the offer left her in tears. "In November last year he began the process for a live donor which takes quite some time, months, and unfortunately in January those heart issue emerged and his testing for eligibility to be a donor took him to June, July or August before all of those boxes were ticked... and of course my heart issues had overtaken as a major concern and stopped any chance of having a transplant at that time. So now it all waits in abeyance while I hopefully improve my heart condition. Beyer says she is not in pain “but the mental health is a challenge because I'm not used to being confined by health problems like this. They can't explain why I have renal failure and I've said don't bother dwelling on that now, let's just get on with the treatment. But these other complications have developed. And I've never had heart issues before in my life either but now I do.” Despite all the stresses and uncertainty it's remarkable how many times she laughs as we chat. Somehow she's managing to keep her spirits up, in company at least. “I guess its because I've faced other sorts of adversity in my life and I managed to plough through those challenges... I just apply the same sort of grit and determination. But this one is really very difficult because because I'm dealing with something that's beyond my control. And being the little rebel I am... “ She chuckles and the chuckle turns into a laugh. Then she goes rather quieter. “But I have to say that just when I thought 'great, we've got a transplant all set up and I've only had to be enduring this for three years I should consider myself lucky considering the circumstances' but then I've developed these other complications and that's just really rocked the cart.” She says her current strength is “up and down. I can't say from day to day how I'm going to be feeling but since I've been on haemodialysis it's taken a few weeks but I've adjusted to it and some benefits have come from it. I've got a little bit more energy and I'm not suffering oedema but I have lost an awful lot of weight... but that's fine, I just don't need to lose any more. I'm at about 64kg now and when this whole ordeal began a few years ago I was about 87kg. The result is that Beyer looks rather drawn at the moment, how does that feel given that she has always been very careful about her appearance, keeping herself immaculate groomed. “I don't care so much at the moment, laughs, I'm not bothering with makeup at the moment. Call me old or something but I tizzy up a little bit for special occasions but not every day any more. I'm a bit beyond that... I just can't be bothered putting the warpaint on all the time.” The drudgery of the treatment regime, the meds and all that sort of thing day in and day out, it becomes tiresome and it confines you. I can't work or anything like that. Everything revolves around the treatments. My muscles have wasted away and I haven't been in a position to exercise so even walking down the road is exhausting... I've got consistently high blood pressure, so I just can't go out and do much. I try to push things when I'm feeling well but it's not like it used to be and it's very frustrating. Energy, strength and food and drink restrictions have limited her life for years now. “I go out socially very rarely. I might go out for dinner or something like that but I don't drink any more, and I have to watch what I eat... no tomatoes or bananas, no this, no that, because everything you consume has a toxin by-product and that creates issues for the kidneys. The dialysis is helping to remove toxins like urea but potassium causes issues, sodium causes issues, so I have to be very disciplined. But I do do deals with people like the dietitian... I say 'that's not living when you're talking about maintaining quality of life.' “So every now and then I'm going to eat things I shouldn't because I want to. I won't be reckless with that, perhaps once a month, carrots or bananas or something like that but not every day... just so I can satisfy some of the cravings for every day things. And foods change in the cooking process, chemical changes happen and did I ever want to know all of this shit? No, never! But now I have to and that's all part of the discipline, it's easy for anyone to fall off the wagon on what you're eating and the way you can tell that you've over-indulged in anything you shouldn't have is the monthly blood tests and if the doctor sees any changes I get the finger wagged at the next session: “Are you taking those pills, are you cutting down on that, why have you got a spike in your potassium, what have you been eating or drinking. “I've had to be on fluid restrictions too, a maximum of about a litre of fluid a day. And when you think of how much liquid you imbibe which includes not just water or drink but fruit, because fruit's largely water and things like soup. Every friend you visit offers you a cup of tea or coffee... how many times I've had to go 'Oh, no,no, no.' Or perhaps 'Yes,' then only take two or three sips out of it and waste the rest...” But Beyer seems realistic that at this stage there are no guarantees, even with a kidney waiting in the Wairarapa wings, that she will ever be well enough for a transplant. With a heart function so impaired it is doubtful anyone would survive anaesthetic let alone the physical and psychological stresses of a full kidney transplant operation and its aftermath. “There's been help sorting out end of life issues such as wills and all that sort of stuff, although I haven't got all that organised just yet. Some people say: 'Oh, stop being so morbid!” and I say: 'excuse me this is actually real, I'm not just doing this to be a drama queen and you don't even have to be sick to attend to your end of life issues and I should have done it long ago.'” Luckily, throughout all her health problems and reversals she has had support from closer friends and further afield. “The support has been fantastic and when there have been media items about my health people have been very kind and helpful and offering and that's been good. And I've got a good small group of friends to support me on a personal level and that's comforting.     Jay Bennie - 25th October 2016

Credit: Jay Bennie

First published: Tuesday, 25th October 2016 - 11:49am

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