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.
Hey everyone. I am really new to this kind of thing. Growing up, I knew I had PKD and was STRONGLY encouraged by my non PKD parent to go to a PKD support group. I didn’t want to do it because of many reasons. The main two were: A) What does a young PKD patient need support with? B) I didn’t want to dwell on what my life may very well turn into. I haven’t seen a doctor since 2015 or so but I have been on top of my diet, bp, and not getting UTIs. I am 27 so it isn’t that bad, yet. But I am getting back on the taking care of myself wagon Monday. I swear! Just need to get through this weekend first.
My family and I just lost my parent, who had PKD, in his early 50s. They had been on dialysis for 12 years this May. I have watched my uncle die in his early 30s and my grandmother die at the age of 56 from complications of this disease. It is so painful to be around the rest of my parent’s siblings (there are 3 of them), who also have PKD and are either not in ESRF or have transplants. I believe I am still thick in the grieving stage of this profound loss but it just feels like a ghost that has haunted me my whole life just got a little bigger. It feels like we have a more aggressive form of PKD and it just feels so unfair. I lost my role model, my rock, and a person who no matter how bad I messed up, they would be right next to me to help pick up the pieces. I was told my whole life that technology is getting better and that my parent will live longer than their mom and that I won’t even go on dialysis the way things are progressing. That just feels like such horse shit. I totally write off anyone who says that to me, especially now! I feel betrayed. I feel lied to. I feel robbed. I feel alone. I have siblings that are in the grief trenches with me (all younger). Thankfully, none of them have PKD; it is just me. Watching my parent die, was kind of just watching myself die in 23 ish years. Things might change but they might not. I am not scared. I think I just have no more hope left in me.
Is there anyone else out there that can relate? What’s your story? I literally cannot be the only person with this kind of story. The odds are just too high. I don’t want to be alone.
I’m so sorry for your loss. Losing a loved one is very difficult for anyone, but perhaps especially so if you share the same medical problem. I understand that you’re feeling despai as well as grief. Those are two powerful emotions. I’ll try to avoid platitudes, as that’s not what you want, but will point out a few things which you might not have considered.
First of all, grief is a well documented process, with a number of definite stages through which most people will pass. It can last for up to two years, so be patient with yourself. It may be helpful to seek some counselling to help you come to terms with what has happened and how this affects your feelings about your future. I think you are grieving for yourself, as well as dealing with the overwhelming loss of your father whom you clearly miss enormously.
I know that you have little time for the idea that things won’t be as bad for you as your older relatives, but try to keep an open mind. Less was known about how to prolong the life of your kidneys when they were your age. You know what to do to help and what to avoid. You may not be following the “rules” but you are in a position to make informed decisions. Have you considered finding out whether the drug Tolvaptan would be appropriate for you? This has been found to slow the progression of the disease significantly. Transplant techniques are improving all the time, so this can avoid the need for dialysis and give you back your life if necessary.
I am not in the same position as you in that I am the first in my family to be affected by this disease. However, I am acutely aware that my sons will be watching my declining health and wondering whether that’s what is in store for them. I have to hope first of all that they won’t be affected (they haven’t been tested but one has convinced himself that he has symptoms). I have to also keep hoping that if they have the disease, things will be better for them. I will encourage them to make healthy choices (unlikely to listen!) and live their lives as fully as possible rather than anticipating the worst. If you’re constantly anticipating the worst, you miss the many years of having good health and opportunities for no good reason as they are ruined by worrying about things that may not even happen. Even if they do, there’s no point pre-living all the bad stuff as it then affects you far more than necessary.
For the time being, focus on dealing with your grief. As you start to come to terms it’s your loss, you will be in a better position to address your other issues. As well as counselling, you might consider a support group for the bereaved. I know some people have found these groups very helpful.
Keep in touch.