Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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PKD and mental health

Hello all.  I'm looking to connect with others for support in helping my husband manage issues around PKD and deteriorating health.  We have been lucky to be rather symptom free, but more recently things have started to decline.  He found that his function is down to 20% and we are looking at likely needing dialysis or transplant in the next year. Since this time he has felt more fatigued and "foggy."  He acknowledges fighting depression due to worry around being able to continue to provide financially while being on dialysis.  There is also issue around losing weight to be an appropriate BMI to do a transplant if possible.  I have encourgaed him to go to counseling but he stated this will cause him greater anxiety.  I feel so helpless in this moment.  I can do my best to adjust my spending to ease money fears or support healthy eating, but I know there has to be so much more grief and worry that goes along with this.  I fear for him and selfishly for myself.  I'm afraid of losing my husband eventually and of losing the version of him that he is now.  I struggle myself with mental stability and fear a life without him.   Any feedback or support is welcomed. TIA



Hi there,
No one will pretend that this is easy, but people get through it. There is no reason why you should lose your husband - PKD patients tend to do very well with transplants and go on to lead full lives. Dialysis can be difficult but many say that they feel better as soon as it starts. I don't know what things are like where you are, but here in the UK counselling is part of the process leading up to being listed for transplant. The renal team consists of specialist nurses, social workers, dietitians, psychologists etc, as well as consultants and all have an important part to play. You may benefit from counselling yourself as this is hard for spouses to go through. Keep friends and family close and make sure you have a social life with activities that don't always involve your husband. I say this as someone who has PKD and a spouse. It's not selfish, it's essential if everyone is to stay healthy, in body and in mind. Try not to worry about everything bad thing that might happen- you'll just worry ten times more than you need to as most of it won't be nearly as bad as you imagine and you will waste an enormous amount of mental energy. Focus on the facts. Take things one step at a time and try to still find things to enjoy, however small they might be.
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