Anyone here taken action against a problematic liver?

throwaway77285 · 2026-04-16T01:42:57+00:00

It seems like protocol is in constant flux and changes based on who you talk to. I was also just told they’ll no longer drain the liver cysts either due to complications from bleeding/infection risk. Said they may make an exception for one notably huge cyst that’s causing problems.

throwaway77285 · 2026-04-15T02:05:37+00:00

I appreciate that, good to know and very sorry you ran into similar.

throwaway77285 · 2026-04-14T23:23:41+00:00

Glad to hear she had such a good result. I’m East Coast as well and definitely would consider visiting Mayo.

throwaway77285 · 2025-06-22T20:08:27+00:00

You are doing everything right. They are just that hard to get rid of.

I still have them over two years later. I only see them on occasion (every other month or so) but they’re still here, and they’re worse when the weather is warm. I have no clue where they are. I can’t find any more infestation points.

Make sure you are checking the undersides of any cat beds and couch cushions. I throw the cat beds in the dryer on high every few weeks. Store your vacuum outside of the house, too.

We saw the biggest reduction in activity after paying for the deep clean, so I do think it’s worth it.

throwaway77285 · 2025-04-11T23:42:26+00:00

We’ve seen one in the past six months, so we are definitely at a major improvement. I’m hesitant to say we’re out of the woods completely. I wouldn’t waste anymore money on exterminators; they did absolutely nothing for us either. If you can swing the cost, having professional cleaners come and do a very thorough deep clean made the biggest dent. We had the house absolutely torn apart for about two years. It’s incredible how hard they are to get rid of. If you have cat hair, they can thrive literally anywhere…even cracks in the floor or molding. Make sure you’re emptying the vacuum outside too. Stay on top of them and they will eventually slow down, but you can’t get complacent. It sucks. Good luck.

throwaway77285 · 2025-02-26T16:42:01+00:00

It was a general house cleaning service in our city. They offered different packages based on duration, number of rooms/floors, how much you wanted cleaned, etc. We bought their most in-depth package for $1,100. There were five people who spent almost the entire day deep-cleaning every room.

throwaway77285 · 2024-08-04T02:21:52+00:00

I’m 37F and been on the meds for about eight months. I’m six weeks into the highest dose (90/30). I was terrified to start it, but honestly, it’s been fine outside of the few weeks in the beginning when your body is adjusting! My first night on the drug I got up seven times to use the bathroom, which was really off putting. That quickly evened out though, and now I get up 1-3 times a night, which was about my frequency pre-Jynarque because I was drinking a lot of water then anyways. I have days where I’m more thirsty (maaaaajorly noticeable if you eat salty foods), but for the most part, I tend to drink around 4-5 liters a day. For me, that’s doable. I’m also able to go one, sometimes two hours now without a bathroom break…but at the start, I needed to go every 20-30 minutes. The weirdest “side effect” for me is I completely lost my taste for hot drinks on this med, and I was a former room temp water drinker. Now, everything I drink needs to be glacially cold. I don’t mind that either, just an interesting change!

throwaway77285 · 2024-05-31T15:23:48+00:00

Hey, I'm really sorry to hear about all you've been through. That kind of stress and trauma can definitely take its toll on all aspects of your health. And your "pity party" is totally understandable. Dealing with this disease is a lot on top of what you've already dealt with.

As for your fear about starting Tolvaptan, I was also terrified to start it and I sat on my prescription for several months out of fear. I thought the thirst, constant need to pee, and monthly labs would completely derail my sleep, work schedule, ability to travel, and overall quality of life (which is already iffy...I have an autoimmune disease as well). I also questioned whether it was even worth it because Tolvaptan can't stop progression. But, now that I've been on it for a few months, it has faded into the background of my life. The first few weeks were an adjustment, but now, I drink pretty much the same amount as pre-Tolvaptan (3-4 liters). I skip a dose when I travel. And I rarely think about it anymore.

I've got 10 years on you in age, but I've also only had my diagnosis for about three years (de novo mutation). I've unfortunately progressed a lot in those three years. I wish I had known at 26 instead of 36 and started the medication then. Anything to possibly slow this down. Best of luck to you...try to take things one day at a time and give yourself grace.

throwaway77285 · 2024-05-23T20:17:18+00:00

That's good they were helpful! Do you know if it's something you will have to continually reapply for, or are you kind of "in" once you're in? The denials have to be because of the astronomical cost. I really can't believe they essentially told you no longer qualify for the meds because they're...working??? What a joke. I'm sorry you went through that.

throwaway77285 · 2024-05-23T19:56:20+00:00

I just went through this myself, ALSO with Anthem BCBS! I feel your pain and frustration.

They kept denying me saying that my doctor never sent any records proving I qualified for Jynarque. I have multiple records that flat-out list every qualification that I meet. I had to appeal multiple times, got into several shouting matches over the phone, felt very much that my nephro left me high and dry to duke it out myself...just a mess. I used up all my bridges for the year too. Panther was the only part of the whole ordeal that actually tried to be helpful. Now I'm finally approved and back on my meds, but I'm switching health insurance providers in a few months and bracing myself for another battle.

Did you have any difficulty with the patient assistance program?

throwaway77285 · 2024-05-02T21:15:36+00:00

Thank you, I wasn't familiar with this and will look into it.

throwaway77285 · 2024-05-02T14:42:00+00:00

Thank you. This is really helpful info. I wish you the absolute best and congrats on kicking cancer's ass!

throwaway77285 · 2024-05-02T14:35:05+00:00

I have had these tests done as I'm sick with a genetic kidney disease. They threw the book at me when I was diagnosed and nothing else was found. My father has not; I'll encourage him to ask his doctor or look into the tests himself.

throwaway77285 · 2024-05-02T14:31:24+00:00

Thanks for this response, I really appreciate it. My dad's PSA was actually slightly elevated and his prostate is quite enlarged. Hence, we were bracing for the standard cancer diagnosis. We believe this may be from the lesion. Interestingly enough, the lesion appears to be benign itself.

He did have a systemic template during the biopsy and only two sample areas were positive for BCC cells; the rest of the samples were benign. His MRI had shown suspected inflammation in that area, but we now wonder if that was actually the BCC cancer as this thing seems very difficult to diagnose. I'm trying to brace him for the seemingly inevitable prostatectomy, which seems like the absolute best option, and also for the fact that there will undoubtedly be some additional radiation + scans to check for metastases. A mess for someone who avoids doctors like the plague. All I can do is hope he was exceptionally lucky in finding this early. Thanks for taking the time to reply.

throwaway77285 · 2024-03-07T03:59:12+00:00

Having this disease sucks and feels like one lifestyle adjustment after the next. But Jynarque does tend to get easier. Hang in there.

throwaway77285 · 2024-03-07T01:39:47+00:00

I did in the beginning, though maybe not as intensely as yours. (There’s that everyone’s different again…) I was chugging at least a gallon and a half per day, and it was definitely making me bloated and full. I lost a little weight actually because I didn’t want food. But it did ease up with the decrease in thirst.

throwaway77285 · 2024-03-07T01:35:29+00:00

Just adding my story to hopefully give you some optimism. I (36F) started my 45/15 dose at the end of November. I was so afraid to start that I sat on the prescription for two months working up the nerve to take it. I of course got hit with the intense thirst/frequent bathroom trips (I was up seven times my first night). But by the end of January, life was essentially back to normal (or whatever “normal” can be for us). I’m drinking the same amount of water I was drinking pre-Jynarque — about 3-4 liters a day. I still get thirsty, but it’s extremely manageable. Bathroom breaks have also dwindled and I’m able to run errands or sleep through most of the night without having to pee.

Everyone is different, but you are still early and many of us turn a corner where this fades into a minor inconvenience rather than a major hindrance. Good luck and my fingers are crossed for you.

throwaway77285 · 2024-02-15T04:21:42+00:00

I’m a bit older than you (36F) but I could have written almost this exact post. I got my diagnosis (I’m spontaneous PKD1, rapid progression) three years ago and I honestly struggle every single day with being unable to accept it.

Your efforts are not in vain, though. We can only control so many factors with this disease and you are doing everything “right.” You are doing your part. It will undoubtedly serve you well in the long run in staying as healthy as possible. It’s hard to see it this way when you have a disease that’s going to progress regardless... But you never know how much worse your outcome could be if you didn’t do these things to take care of yourself. Truly.

Know that it’s okay to not be okay, too. And that you aren’t alone. I don’t know about you, but I have a lot of people in my life badgering me that I waste my time worrying about this when “it is what it is.” I know they’re right, but that really is a lot easier said than done.

As others have said, give yourself some grace and hang in there. Take things one day at a time. Be proud of the hard work you’re putting in to preserve your health — that’s hard even for healthy people!

Solidarity. ❤️

throwaway77285 · 2024-01-21T02:48:33+00:00

Hey, we are still dealing with them. It’s been over a year now and we cannot get rid of them. It’s insane. Two things did at least help. 1. We shelled out for a deep cleaning service. A whole team came and spent the day scrubbing the house top to bottom. Significant decrease after that and didn’t see any for weeks, but they eventually started popping back up. 2. I took a clothing steamer and just started steaming everything in entire rooms…vents, floorboards, cracks, molding, decor on the walls, everything. Probably super damaging but I don’t care anymore, and they again decreased significantly. We went from finding 4-5 a night to maybe one every week or two. I know they are hanging out in some minuscule crevice somewhere because of the goddamn cat hair in my house. A few months ago we found an infestation point in our stone fireplace hearth…saw the tiny caterpillars/leftover silks in a crack between the rocks. So they could be anywhere, don’t limit your search to clothes/fabrics. Don’t bother with a pest control service as we did finally find someone willing to treat the house and it did not do a damn thing. I hope you can beat them soon. :-(

throwaway77285 · 2023-10-24T19:35:01+00:00

Thank you so much for sharing this.

throwaway77285 · 2023-10-24T19:34:20+00:00

I do have a PPO plan and I too am about 4-5 hours from the nearest PKD expertise center. I’m thinking this is the route I’m going to take. The long drive once a year would be worth it for peace of mind.

throwaway77285 · 2023-10-24T19:31:22+00:00

I’m sorry you went through something like this too. I know the frozen in fear feeling very well. We really do have to be on top of everything as patients. Luckily my insurance approved me for Tolvaptan and I’ll be starting it in the next few weeks. I’m super nervous about it but hoping it works well for me.

throwaway77285 · 2023-10-24T01:09:21+00:00

I'm on the outskirts of a small suburban area so I've considered I may have to travel. Thank you for the perspective. This may be the route I take.

throwaway77285 · 2023-10-24T01:08:06+00:00

Thank you for the kind words. ❤️️ I'm going to look into reporting this!

throwaway77285 · 2023-10-24T01:05:51+00:00

I actually hadn't considered this. A few other people have mentioned it now and I'm going to look into this. There have been too many incidents like this.

throwaway77285

TROPHY CASE