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Guilt During the PKD Journey



When I found out that Valen had PKD, I was devastated. I knew I had polycystic kidney disease since I was 22. And I envisioned being on dialysis at 45. And then to turn around and have both my children, you know, for Valen to be so ill, so young from the disease, was very challenging.


A big hurtful thing for Pam, is she feels guilty that her health is well at this point, when seeing and looking at our surrounding family and what they have gone through, and neither children hold that against her or her mother or their side of the family, but she has a feeling, an uneasy guilt feeling, about passing that on.


I for sure wish I could take on the pain. It hurts even more knowing that she’s suffering because of a disease that came from me, and I didn’t want to give it to her. I know that, I understand that, and she doesn’t blame me for it. But it’s one thing to see your child suffering, let alone something that she inherited from me. It’s just, I’m terrible at being in a mother’s role without feeling guilt.


I respect that, and can understand those feelings to a certain extent, but I’ve never looked at it that way. Like I’ve never been bitter about this journey, or inheriting it, because she inherited it from her mom, and her mom inherited it from somebody else. And it makes me sad to think that she’s lived a life full of worry, because of how well she’s doing today. So, for me, once again, I go back to my grateful spirit, and I’m just so grateful she’s alive and healthy and well.


You have this part of you that you want to take care of, and you want to fix the issues and you want to somehow be in there and be able to take care of it and through large swaths of the journey, you can’t. And as a caregiver, you carry this tremendous amount of guilt as you’re watching the patient in a hospital bed, as you’re watching a patient, your loved one, you know, struggle to get to the next day. You’re – you have this tremendous sense of guilt that you can’t do anything about it. You feel this. You feel so powerless and wracked with guilt that you can’t help.


Noah’s support in my journey is everything. He helps to give me this amazing quality of life and something to look forward to and that’s just been huge. It takes such a selfless person and he’s been extraordinary from the beginning. And then, to see how he’s even grown in that role, and I know sacrifices that he has made and that he’s willing to make.

So, caregivers have such a vital role and even though sometimes they can feel helpless because they think they can’t do what they would like to do or as much as they can do, they’re doing more than they could ever imagine.

Being a younger wife and not being able to go do something or not feeling well enough to do something or you having to live like an immunosuppressed person because I'm immunosuppressed, those are hard emotions to navigate at times and it has to take me being comfortable in who I am and trying to be strong and confident. And sometimes, I wish I could be the healthy woman in my 30s that can have children and give you a life that I think you deserve. And those emotions are sometimes really hard for me to work through. Because as a patient you have guilt surrounding that. I feel like even though I'm not rich in health, I'm rich in love and not everyone can say that. I strive to focus on the gratitude surrounding that.


I think for the patient, I think that guilt is a natural reaction. But I think, you know, from the – from a patient side, you know, that guilt that the patient has, it’s not something that you did. This is something that is a genetic disease that you have no control over, and this is something that, you know, I took the oath of in sickness and in health and I meant every word of it when I took it. And so, being there and helping her when she is down, she would do the same for me and I know it. And so, that’s why it’s always this we. We, it’s, it, we call ourselves Team Awesome at times and we have to try to figure out a way through things. But that’s really what we are. We’re a team. And like Valen said, I could have been – I could have went down the road of marrying somebody that had no health issues, I could have had kids, had a house, done all the normal things and I would have lived in a very narrow spectrum of life. And while that spectrum of life might’ve been very comfortable, it wouldn't have been as – I wouldn’t have experienced nearly as much across the spectrum of life as I have. And so, I'm thankful for her for that. Despite her health issues, we’ve seen I really feel the full spectrum of life.

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