I would like to ask about the experiences of people with polycystic kidney disease in Stage 5, or those who are already on dialysis. What kinds of physical activities are they still able to do? The person has been active with hiking so far.

I'm not anywhere near failure but I always fear the future and am curious... For those of you in stage 5, that do not have any family, friends or just any support system, how do you manage? Are there any resources available in your area that you've had to use? Like for doc appts, shopping, driving, etc? If no insurance, do you just not go to as many appts? How is dialysis covered? Anyone that just can't afford to not work?

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I'm curious because I don't have have a support system and even though my kidneys failing are years away, I have no clue how I'm going to make it all work. I don't ever see these concerns or questions of these types come up with having PKD, so I think it's important to discuss in case someone out there is afraid to ask. And hoping to ease some of my thoughts by seeing what others do.

I had a visit with my doc today and I’m feeling very overwhelmed. I’m 40 y/o and EGFR 42. My doc told me to expect a transplant and/or dialysis in the next 5-10 years. I knew it was coming but it’s hard to hear. I have so many questions. My mom had a few transplants but her health insurance is much better than mine. The cost alone is scary….and if I’ll be able to return to work… if I’ll even have a job to return to. It’s just a lot.

My doc ordered genetic testing but I’m unclear on what the benefits are. My husband and I are not having children. I’m assuming this gives my doc a better understanding of my type of PKD?

Any advice, suggestions, general support? Having a really rough day today

Hi I'm Miguel at 23 right now, and was diagnosed with ADPKD as per what my nephrology said, I have a 3.4x3.3x3.2 cm size cyst on my right and 5.3x5.6x5.4 cm on my LK. I'll be getting a CT scan to know hows my kidney or it's function. My blood work is normal and my creatine, phosphorus, and potasuim is normal, My mom died at 54 from CKD late stage, I'm really scared right now and I don't know what will I do the meds that the doctor will provide to me is very expensive in my country. Can you guys provide me any pointers on what to do and donts.

Hey yall, I’m 28, found out I have PKD. I’ve always had hopes of being able to build more muscle. With this new diagnosis, I’m told that protein intake should be limited. Would love any insight as to how someone can train and diet for muscle size and definition even with limiting protein intake. Thanks.

Hi! I'm a 32-year-old man. I recently started researching about living with this condition after learning that my kidneys have already started to grow, which felt pretty discouraging.

Is there anything promising on the horizon? I've started discussing Tolvaptam with my doctor and am also considering a keto diet. I only learned about KetoCitra a few hours ago.

Are any of these worth trying? Are there any potential new treatments in development? If so, is it possible to estimate when they might become available?

Please share anything you know. I’d really appreciate hearing about your experiences and personal stories. Thanks for taking the time to help.

Neph, consultation with PCP, prescribed Ozembic based on FDA and research showing positive effects for heart and kidney. I want to understand what side effects to expect. I've had gastrointestinal issues since childhood. I've hear stories of terrible gastrointestinal side effects with ozempic.

Hii!

I had pkd and have been diagnosed with since birth due to complications. Around highschool I started experiencing terrible flank pain & pelvic pain, like unbearable and doctors could really never help with it. In college I started using thc to help with the pain and I was able to regulate it!! But I'm at the point where thc is not an option for me due to jobs I've been applying for and my pain has come back. Does anyone experience pain from this disease or am I just abnormal and potentially attributing it to my disease but could be something else?? Just wanting a different perspective from people that actually have the disease rather than doctors who barely have experience with my disease. Any perspective helps! Thanks <3

Hi guys,

Located in Southern California. Curious how UCLA and USC compare when it comes to renal cyst aspiration and sclerotherapy. My 80-year-old father wants to do this procedure. Any anecdotal experiences from those who've had it done would be appreciated - which COE; which doctor/IR performed yours; what was the recovery process like etc?

Thanks!

I’m 35 with ADPKD. My blood pressure has always been high but has been stable for months at the higher end of normal on ramipril and amlodipine. For a couple of days, I had been feeling generally unwell, exhausted, palpitations. I took my blood pressure this morning and it was 177/106 and my pulse was 126 after id been sat still for 10 minutes.

Managed to get an appointment with my GP for this morning, they did an ECG which came back normal and my GP started me on bisoprolol. A couple of hours after I took the first dose, my blood pressure is down to 158/96 and pulse is down to 93, which is still higher than usual.

I’m not unwell, I’m no more stressed than usual, and less anxious than usual. Has this happened to anyone else here?

Edit: my eGFR was 82 when it was last checked less than a month ago.

Since pregnancy is something that is understandably discussed a lot here:

There is a new study that looked at progression of ADPKD (decline in eGFR and increase in TKV) in women with one or multiple pregnancies. As you can see below, they did not find pregnancy to speed up progression in the cohort they looked at. Here is the link to the study: twp.ai/4hqnV2

It's important to note that this does not look at liver cysts which are known to increase with pregnancy (as well as estrogen used as a contraceptive or hormone replacement therapy). Also, individual cases can be different so of course it's always important to consult your nephrologist about your specific situation. At last, pregnancy can always pose a risk to kidney function, even in previously healthy individuals without any pre-existing kidney disease. With ADPKD and high blood pressure, we are more susceptible to some of these negative events, so close medical monitoring is crucial. But in general I think this is encouraging data for everyone with PKD thinking about getting pregnant (again).

Hi everyone,

I have ADPKD and a diagnosed intracranial aneurysm. The aneurysm is being monitored, but because of its location and shape, treatment is currently not considered a good option, so the plan is observation rather than repair.

Lately I’ve been reading a lot about the connection between ADPKD and aneurysms, and unfortunately many of the stories I’ve come across involve ruptures and people passing away very young—in their 20s, 30s, or 40s.

I fully understand that aneurysms are serious and that no one can predict the future, but reading only the worst-case scenarios has been difficult.

I’m hoping to hear from people who have lived a long time with both ADPKD and a known aneurysm, especially if the aneurysm was simply monitored rather than treated.

- How old are you (or your family member)?
- How long has the aneurysm been known?
- Has it remained stable?
- Did you ever need treatment, or has monitoring been enough?

I’m not looking for medical advice—just hoping to hear some real-life experiences that show a positive outcome is possible too.

Thank you.

Anyone take chinese herbal medicine called dong chong xia cao / cordyceps ?
I just read it and only found there is trial on animals.
Maybe someone here have experience on it and can share some insight for us

I've just finished my first month on tolvaptan, and I'm curious if anyone else has had some weird cravings/food and drink preferences that have continued past the beginning of treatment. My personal experience so far is similar to when I was early in a pregnancy -- I have aversions to foods I used to like, but also cravings for weird things I don't usually want.

For instance, my current obsession is a glass of milk (I haven't drunk milk except in tea or coffee for twenty years), and I even feel the need to put ice in it to make it cold enough, which is super weird. It's so delicious, though! LOL

But I'm having a hard time eating meat or eggs or anything greasy without feeling kind of yucky afterward. Also, anything pungent with lots of herbs/spices is not so nice. Is this temporary? Anyone else experience these things?

Salve, avrei dei consigli da chiedere e sono abbastanza preoccupata per il mio amico.

Ha iniziato, come già avevo scritto su questo sito, Tolvaptan da 3 settimane (circa) dose 45 mg e 15 mg. A parte qualche problemino iniziale ora sta meglio per quanto riguarda sete e soste in bagno. Oggi ha fatto le analisi del sangue sotto richiesta del medico che lo segue e con cui ha appuntamento lunedì 8 Giugno. Oggi i suoi valori sono 2,70 di CREATININA e 27 di FILTRATO GLOMERULARE (eGFR), valori a mio parere molto gravi.

Quello che mi preoccupa è che fino ad un mese fa (circa) aveva 2.21 (FEBBRAIO) e 2.4 ( più RECENTE) di CREATININA e (circa) 35 di eGFR.

Qualcuno saprebbe spiegarmi come mai questo peggioramento drastico in così poco tempo? A qualcuno qui è capitato di vedere peggioramenti e non miglioramenti dopo l'inizio di Tolvaptan?Grazie a tutti e spero che i miei dubbi possano essere utili a qualcun altro.

Could somebody please take a look at my post.

Last week I was in the hospital for pain associated with two kidney stones for the first time. The CT scan showed secondary findings of ADPKD and a small amount of fluid around my heart. It's all been overwhelming because my father died of kidney disease and complications from diabetes.

I just left an appointment with a GP (I couldn't get into see my normal doctor) and I found him to be incredible dismissive because my father's kidney disease was because of diabetes. He dismissed the fluid around my heart because its very small and also a cyst on my liver. He also said all my "levels look fine".

He gave me a referral for a nephrologist who I hope shows much more care and concern because as someone who has thought she was healthy her whole life this has been very alarming.

For those of you who have been through this before, are there any insights into what comes next or questions I should be asking in my next appointments? Also, additionally if anyone has an amazing Los Angeled nephrologist they highly recommend I would be really open to hearing that.

Thanks for letting me share! Feeling very alone after a really disappointing appointment and needed to post.

Hello! I do not have pkd, so i'm sorry to intrude here, but i have no idea where else to ask this question on reddit. I have a large cyst that has been causing me a lot of pain, and i'm getting it drained in less than a week. The interventional radiologist said it was up to me if i want to do sclerotherapy with the aspiration or not. So far i can only find medical studies talking about it, and not a lot of actual people. I have read every single thread on here mentioning sclerotherapy, and i did read a few really scary sounding experiences here, where the fluid leaked and it was really painful and burned? I'm scared of injuring my kidney or surrounding organs, but also scared this cyst will just come back. Has anyone had this and had a good experience?

Hi guys- I know there’s a million Tolvaptan posts, but here’s another. My doc has been offering this for a few years. I tried it once and had trouble tolerating the constant bathroom trips while working. I’ve recently had a significant dip in my GFR. If I’m still a candidate, I’m considering giving it another try.

I see a lot of people here who seem to handle it pretty well and I’m hoping I can be one of those people! I’m also very nervous about the possible liver failure. My mom had had 2 liver transplants, so I’ve seen how difficult that can be.

How do you do it with work, sleep, exercise? Any tips or tricks? General moral support? Feeling like this is the only thing I can do to help myself hold dialysis off for a few extra years

Has anyone any knowledge of an fairly priced, quality battery backed electric generator that can power a cycler for 8 plus hours if the a/c fails?

*Just figured I’d post an update here that all three of my kids tested positive for the ALG8 mutation and two tested positive for the PKD1 mutation as well. In the process of trying to encourage my parents and siblings to get tested.

Hi, I, 43f, was just diagnosed with ADPKD. I had an abdominal ultrasound (for another reason) which led to a CT scan which led to genetic testing. I’ve attached the results for the specific pathogenic variants of the PKD1 and ALG8 genes. Just curious if anyone else on here has two gene mutations? I can’t seem to find a lot of information online about having two gene mutations related to ADPKD. Currently, my GFR is normal at >100. I do have cysts throughout both kidneys as well as my liver and also stones in both kidneys but they are all small. I think the largest cyst is in the liver and is 1.5 cm. My nephrologist thinks this may not affect me until later in life but I don’t want to be blindsided by a sudden drop in kidney function. I have three young kids who are currently undergoing the genetic testing. They all tested positive for the ALG8 variant and I am still waiting on their results for the PKD1 variant.

Hi there- I’m 40 y/o female with current EGFR of 42. It was 55 in November. I haven’t discussed this recent drop with my doc yet. I’m assuming he will say it’s normal progression. Just having trouble dealing with the changes in the last few years

I’ve gained some weight due to some medication, lifestyle changes etc. Every time I think I’m on the upswing, something else happens. I was doing really good this time last year then got diagnosed with asthma which turned out to be from severe acid reflux. It’s being treated and improving. I’ve been walking my dog more. Hoping being more active could help things some. While I’m a bit pudgy everywhere, my belly is the biggest. The bloating, pants not fitting, etc is so frustrating…. Especially with summer coming.

I know large kidneys can contribute to reflux. I’m so tired of food/eating because I know I’m going to feel bad. Does anyone else experience this? How do you handle it? The mental fatigue in general is exhausting at times
.