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!
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.
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).
I mean not the cyst rupture or bleeding outside, but when the cyst bleeds inside itself. The cyst fills up with blood and expands, causing a good amount of pain and discomfort. The first time this happened last year, and at the hospital they had to drain it. After that it was good for a while. Now this spring it started happening again – 5–6 times already. Every time after some light physical activity. I just power through the pain for 3–4 days and after that it gets normal. Because of that I'm hesitant to do simple house chores. Does this happen to you?
Also, has anyone had experience with renal artery embolization ? Basically blocking the blood vessel that feeds the cyst.
This happens in Guangxi province, China.
Liver and kidneys start to work fine within 24 hours.
I'll keep this updated.
Hi everyone,
I'm writing because I'm concerned that my mother's medical team may not be taking her condition seriously enough.
She has stage 5 kidney disease and an eGFR of 5. Over the past two days, she has experienced some chest pain (she thinks it may be related to a ruptured liver cyst) and has also developed a broken blood vessel in her eye, which appeared spontaneously.
Given how low her kidney function is, I would have expected her to be monitored more closely. She has contacted both her doctor and the nurses' station, but so far she hasn't received much guidance. Her doctor, who used to respond to emails very quickly, seems to have been quite unavailable recently.
She isn't feeling too unwell at the moment, but I'm worried that with an eGFR of 5 she should perhaps already be on dialysis.
Is there anything else we should be doing, or any signs that would warrant more urgent medical attention?
Thank you for any advice.
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?
I had a double nephrectomy and simultaneous kidney transplant coming up on three years ago, due to ADPKD. I always knew I had liver cysts but the extent of them really didn’t became clear to me last year, when one ruptured. I’ve been seeing a PLD specialist and we can see that my liver is growing. At this point it’s about twice the normal size.
I’m really struggling with this right now. I spent a long time watching my kidneys take over my whole abdomen and the stress of it was overwhelming. My family members who also have ADPKD are denial people, and I’m just not. That led to a lot of conflict and I have medical PTSD to this day. I was so relieved when the kidneys were out. Now it looks like I could be heading for a liver transplant too. The Dr said it will ultimately be my call based on how I feel and my nutrition levels. She also said they can’t reliably predict future liver size but that I’ve gone up a full liter of volume in the past decade.
So far I can still eat semi normally but I’m experiencing more weird stabbing pains from the internal pressure. I’ve been getting more reflux. It all feels horribly familiar. Yesterday I had a breakdown about it in therapy and now I’m just feeling so tired. Part of me wants to just get the transplant over with but I know that’s not sensible. I just fucking hate being in limbo. It’s too much.
Anyone else dealt with this?
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.
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
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.
I had a CT scan with contrast on Saturday. The results came back and it’s shown a parapelvic cyst on my left upper pole. I’ve read that these are rare? The report doesn’t state the sizing of it. Just parapelvic cyst left pole.
Does anybody have any advice or reassurance for this specific type of cyst? Could the radiologist gotten it wrong and misdiagnosed me and I’ve got something more sinister.
I’m tracking down the NHS consultant that requesting the scan for more information.
I lost my grandfather and dad to kidney cancer and I’m freaking out.
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.
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?
My 24 year old son was diagnosed with a rapidly progressive disease Vasculitis Anca. Six months ago he was a very healthy normal very strong young man. And suddenly he has no kidney function on dyalisis and needing a kidney transplant (hence to say the medical system failed us. And failed to refer us to a specialist to tell us his kidney was only functioning at 30%.had they had told us his kidney may have been ok…but that’s a whole other story sadly horrific 😤🥲)
It has been a drastic shocking decline watching him suffer in pain. In and out of the emergency too many times to recall. My heart is Brocken watchingmy amazing son go through this.
He is learning to understand his body and the at home peritoneal dyalisis but as you all k ow. It’s a roller coaster of up down and all around.. one day he is great. The next he may not be. What I’m hear to hopefully find some advice and support on is. Me and being his caregiver. He is learning to do mostly everything for himself. Setting up machine and all that stuff. But the diet and what he can eat is all on me. It’s just me and him. We really don’t have anyone else. Before this I was travelling and we were both living our lives. I am afraid to leave him alone at night. And my relationship is falling apart with the man I love. It’s been all great till my son got sick. And he thinks I should be able to just go away here and there even for a couple of nights. But my heart is so confused. 😵💫. My son is my world. I’m so worried if I go away and he needs me. I’m an awful Mother. It’s just been a crazy scary heartbreak. And I am exhausted and so frustrated with nobody understanding how I feel. You just don’t k ow till ya know how heartbreaking it is to see your child (man child ❤️) go through this. Being scared that he may die in his sleep. Any advice. From a confused broken hearted mother 🙏🙏🙏😞🤷♀️
i (23f) am going in for diagnostic lap and excision for endometriosis. my gyno did an MRI to map out where my kidneys sit first, and said she grew a new gray hair after seeing it. she said the ports will have to be made in a slightly different place than usual, and i’m so worried that the surgeon won’t have experience with PKD. anyone else get this surgery and have everything go right??
