I’ve been reading about Selena Gomez having a kidney transplant over the summer. Apparently the singer was rushed to hospital in May with kidney failure and “aggressively” sought a transplant. Her kidneys failed as a result of lupus, unlike mine which has been all about the kidneys. Transplant is the best treatment for kidney disease, whatever it’s form.
I have written before about the number of people who came forward to be worked up to be a possible donor for me and how amazed I’ve been by the incredible bravery, generosity and compassion I’ve been shown through this process. There’s one person who has been involved in the work up phase since November of last year. We’re 10 months in now and they haven’t finished yet. It’s been frustrating for both of us. My sister has been acting as my advocate through this time primarily because she has worked as a transplant coordinator in the past and has much more insight into how things should be moving along. I have to say I’ve been losing faith in the kidney team here in Halifax. It seems as though if I don’t get really sick they aren’t going to move on this even though everyone agrees it’s far better to undergo surgery when you are strong. We’ve come to find out why they aren’t finishing the work up: they had one doctor retire and another off sick so they are short-staffed. As if that will slowly the progression of the disease, they are putting us off. Ridiculous. Here in Canada we have free health care and that means if you can’t get treatment in your home province you can go elsewhere – as long as the doctor has requested it. So it would seem that either I need to go somewhere else or I need to go into kidney failure like Selena Gomez did. I wonder how things will go.
I’ve lost a lot of confidence in my health care team in the past couple of months as I’ve been mislead and my potential donor has been put off and patronized when asking questions. It’s been frustrating and when I cry out of frustration I’m given a referral to a psychologist rather than straight answers. As if it isn’t normal to cry when you have 9% kidney function and get overwhelmed. I swear if this were the 20’s they would say I had hysteria. How insulting. The implication that crying is somehow not normal is part of the problem in our society. We talk about coping strategies- and these are necessary- but we also need to embrace our feelings and not try to push them down every time they show up. Feeling is normal. As uncomfortable as people become with crying, it is a normal reaction to life sometimes. Being strong does not mean not feeling pain or sadness. It’s feeling it all and taking the next step anyway. It’s disconcerting that a nurse doesn’t seem to understand that.
I hope that Selena Gomez does well with her health from here on. She’s very young and being in the public eye will hopefully show others how important organ donation is. I wish her donor well too. It was incredibly brave to literally give a piece of herself to save another. I hope that she enjoys a long and beautiful life.