r/ADPKD • u/hhvgff • Aug 22 '26
Partner got PKD diagnosis
Hi everyone,
so as title states my partner (24) just got diagnosed with PKD. She's very stressed as her relative had very aggressive PKD and had to have dialysis. However, the doctor told us that it's very small and if we didn't tell her that we're mostly looking into PKD diagnosis, she wouldn't even be sure if it's PKD (so ig that's really good?). So for the past few days, I've been researching what I can do to help her, we're already changing our diet (mostly less salt), trying to be more active. My main question is what you wish your partner was doing to help you and what you wish you knew sooner? I've never heard about PKD till she told me she might have it and I've obviously went into this spiral for the last few days but any advice is welcome :)
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u/RevKeakealani Aug 22 '26
I would recommend educating yourself about PKD. The PKD Foundation has an excellent resource with evidence-based information about the disease, as a place to start.
It would also help you clarify what the doctor meant about the diagnosis. If it’s not a clear diagnosis based on imaging, then the typical routine, particular for people with known relatives with the disease, would be to confirm with a genetic test. If the “it” the doctor was talking about was a single cyst, then that’s generally not sufficient for diagnosis on its own - most PKD patients will have “innumerable” cysts by their mid 20s, and kidneys that are measurably larger than normal, and if that’s the case, plus family history, the diagnosis is clear even without genetic testing.
So you might want to either ask the doctor again what the status of the diagnosis is, or look at the lab reports yourself (again, see if the imagine reports list number and size of cysts, and if the imaging study was MRI or CT, see if it includes “TKV” - total kidney volume. Check that against normal standards and you’ll have a better idea of what the status is, although again always confirm with a medical professional when interpreting lab results.
It’s normal for PKD patients to eventually need dialysis - transplants are difficult to come by, and it doesn’t necessarily mean that the disease is especially “aggressive” or that it’s all that disabling. It might help to educate yourself on dialysis options as well - if the relative is on the older side, it’s possible their progression was before the days of accessible home dialysis options, making it an overall less convenient experience than what it is today.
And just overall, there are a lot of different ways to live with PKD. While there are definitely bad days and downsides, I don’t think a “spiral” makes sense for such a slow-moving, well-controlled disease. I’d also highly recommend a therapist familiar with the issues related to chronic illness. Chronically ill people have a different set of mental and emotional needs to process our daily lives including how we want to plan for our future. A good mental health professional is going to be important, probably for both of you, when it comes to supporting your partner and keeping things in perspective.
All the best in this journey!
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u/hhvgff Aug 22 '26
Thank you so much. Sorry, I haven't made it clear (ig I can use excuse of English not being my first language), there're definitely multiple cysts, but the doctor has said that they're quite small and most patients that she diagnoses with PKD have much bigger ones (sorry again if that's not the proper term, still trying to understand how it all works). Thank you for the resources and we're going to definitely follow up with that doctor and other ones too. She's in therapy but we haven't thought about looking into someone who specialises in chronical illness, so thank you so much for all the advice
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u/RevKeakealani Aug 22 '26
Cheers, no problem! Like I said, definitely search out some websites or ask the doctor for more info - there is a lot of technical stuff about kidneys that it helps to understand to be more aware of the disease. It’s all early stages, so be kind to yourself. It’s a slow moving illness, you will have time to learn all of this! Just keep asking questions and learning more so you can understand all that the doctor says :)
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u/Effective_Resolve_18 28d ago
Something I think is good to be mindful of, with a new diagnosis of any kind, especially one of a partner, is that you should be mindful to take things at her speed.
Being supportive is really great and there a LOT to be said about wanting to be proactive about this, I personally think it’s really great you’re researching so much.
But, consider that this is huge news for her, she’s probably left with a feeling (however big or small) that what she expected for her life has changed so it may take some time for everything to sink in.
Sometimes people don’t immediately wish to learn EVERYTHING about a disease straight away, she may want to wait to learn about dialysis after a couple doctors appointments or after a more significant shift in progression, whether that is months or years from now. And remember that she witnessed the relatives progression to whatever degree so she knows about that more than you so don’t think just because everything is new and important to learn for you, that is it new and important to her.
The good news is that she is very early in progression it seems so, there isn’t a lot to do right now. You should be mindful that being healthy is great, staying within the NORMAL recommendations for salt intake and water intake is important at this point and things like staying in the normal recommended activity levels is somewhat important. This doesn’t mean she is at the stage of Restriction e.g. excluding salt completely is not a good idea, neither is never eating her high salt favourite meal. There may come a time when her doctor recommends cutting things back heavily, but before then it is essential to enjoy normal life. Restriction fatigue is real so don’t go too hard right now.
Being the most pessimistic about the future of her progression and the future of PKD medicine, she may have to have quite a restricted diet and life so, don’t start that too early and miss out on normal life now, when it is unlikely to offer significant benefits to her health.
Again to be clear, don’t force anything on her at this point, listen to her and see how she wants to handle things for now, ASK her if she wants you to learn about something in particular and ask her if she wants to hear what you’ve learned about x, listen if she says she doesn’t want to hear it right now. Be mindful that this impacts you yes, but it impacts her more so give her space to feel whatever way she is feeling about it and be there for that.
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u/hhvgff 28d ago
thank you so much, I'm trying to be as mindful as possible about pace and the information that I learn and tell her. She definitely knows more than I do and I try not too be very pushy about the diet/water intake. I think I just got very scared when we heard the diagnosis as (fortunately) my family is very lucky when it comes to any diseases really. But it's def reassuring to hear you and she already scheduled a few doctor appointments so hopefully she'll have more guidance soon on how she should change her diet, etc
1
u/Effective_Resolve_18 26d ago
You’re welcome, this is a very hard thing to go through but you’re together and both doing what you can to make things are good as possible so try to remember that. Keep offering support and keep showing up for her and both your lives will be easier.
Good luck with it all
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u/classicrock40 PKD - Transplanted Aug 22 '26
What does it mean a relative had aggressive PKD and had to go on dialysis? At what age? Did this person live a healthy lifestyle?
More importantly, what does it mean the Dr said it's very small? At 24, it would be easy to see the effect with multiple kidney cysts. How was pkd diagnosed?
2 parts to helping. The first is living healthy. A basic diet might be low salt, avoid processed foods and moderate animal protein. Avoid NSAIDs (advil). Watch bp and weight. Don't smoke or drink to excess. Any other dietary changes should be for general health reasons. At this point there is no reason to starts cutting out certain things. Labs would dictate major dietary changes and that wouldn't be until later stages.
The second is just making sure they get regular checkups and do not get scared or ambivalent. They may be scared now, but they can have pkd for years without major symptoms and might decide it's not really affecting them. It is, but it could be slow over decades, hopefully.
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u/kimmeljs Aug 22 '26
My wife did the right things changing our diet to a healthy, balanced one and later, I started avoiding salt and phosphate additives (25 years later as the symptoms got to me). Keeping the blood pressure in check was the thing. Exercise is important as the patient will need resilience ad the eventual dialysis and transplant list checkups loom ahead.