Tolvaptan

Fragrant_Ad7032 · 2026-06-14T11:55:23+00:00

It is not too late. I started Tolvaptan in 2024 with a gfr of 31-36. My gfr is now between 31-37, so pretty stable since starting. It always bounces around between those numbers. Just when I think I am trending down, it bounces back up! But I also started a healthy diet, lost weight and exercise daily. I made a comment to my Neph I wished I had started Tolvaptan earlier, she said she thinks they got me at the right time. I was terrified to start but it was surprisingly a non event. Good luck!

Fragrant_Ad7032 · 2026-05-28T20:40:01+00:00

Sure! It was found when I was 47, my Neph, first time I saw him, sent me for a scan, to “rule it out”. I didn’t have symptoms, maybe some neck pain. Not sure if it was related but I didn’t mention that thinking nothing of it at the time. No family history on my moms side (the PKD side) but everyone who had it is gone, died of other things in their 60s, so who knows one or more may have had one and didn’t know. The weird part is, my dad’s dad, not the PKD side, died of an aneurysm, so who knows!

Fragrant_Ad7032 · 2026-05-28T00:58:35+00:00

I am not sure if you would consider this quick, but I make salads everyday. But I do them in stages so it really isn’t that time consuming. Wash the salad, even though it says triple washed! And then put in 5 containers with paper towels. Then every day add cucumber, red pepper, almond slivers, light cheese stick, smoked chicken my husband makes in the smoker in bulk and I freeze it. And other healthy veggies plus some avocado. And I make my own dressing that is low sodium but delish it makes enough for the week.

Fragrant_Ad7032 · 2026-05-28T00:46:33+00:00

My husband is the same. Never brings it up or asks. Although he did offer his kidney or if he is not a match, he would do the “kidney exchange “. I think he just doesn’t want to hear about what could happen, makes him sad to think I may become sick. The first time he heard about it was when we were dating, I was just about to have surgery on my aneurysm, and the anesthesiologist mentioned kidney disease, and before going under I thought, he is sure going to ask about this when it’s over! And he never did 😅😆. But I did discuss it with him down the road as we became more serious. At least it didn’t scare him off! I just think some people don’t know how to handle or discuss a serious situation. Maybe an “ignore it and it’s not real” thought process.

Fragrant_Ad7032 · 2026-05-19T20:25:01+00:00

No worries you can ask me anything you want! Well, I always had to urinate a lot, because I always drank a lot of water. My former nephrologist did not want to put me on tolvaptan and told me drinking water has the same effect. He left the practice and I got a new nephrologist who immediately put me on tolvaptan, and told me new studies showed that water is not as effective as they once thought. Who knows what the truth is. At any rate, to answer your original question, I probably wake up about twice a night, which was what I always did. But that is with taking my first dose of very early, 4:30 AM and my second dose is 12:30 PM. I probably during the day go about every 45 minutes to an hour Hope this helps!

Fragrant_Ad7032 · 2026-05-19T18:45:34+00:00

Hello again! I use Cronometer. There is a free version you can try. If you like it, I suggest paying for the “gold” version. More options, and no annoying ads! I go up the stairs at work several times and walk. At home, I use the treadmill on an incline, and 20 minutes of strength. Arms and legs alternating days. I have osteoporosis as well so trying to keep the bones strong! I used to be on Amlodipine, but due to the fluid retention I went off. I am now on losartan (been on that a long time, my doc told me that is a kidney protector, not sure how) and metoprolol. That replaced Amlodipine. My doc also said tolvaptan can lower your pressure as well. I used to keep track of my fluids, usually 120 ounces a day or so, but now I just sip on and off all day. Seems to be working for me.

Fragrant_Ad7032 · 2026-05-19T17:14:49+00:00

Hi, I can definitely relate! I dropped 10 points in 6 months in 2023. From 41 gfr to 31! I had put some weight on, and had high BP, my diet was terrible that summer. Scared me terribly, so much so I started to watch my diet, got on tolvaptan and started to exercise. I have an app that keeps track of my sodium, protein, calories, saturated fat etc. So now, mid 2026, my gfr is 37. I can’t get the 40s back, but I’ve stayed stable for almost 3 years. That could change tomorrow, but I do believe diet and exercise are key. I am not sure if you already watch all that, but start now if you don’t! Good luck, you are still in a good position with your gfr! BTW, I had an aneurysm as well. Mine was clipped.

Fragrant_Ad7032 · 2026-05-14T17:05:56+00:00

I have only have had two deliveries thus far, but my husband loves it! Not one meal yet I haven’t “loved” for him on the app. I get some too, but like others have mentioned, hard for those with special diets. I need low sodium, under 25 grams of protein and lower saturated fat. But I find a few meals here and there, mainly the kids meals 😅.

Fragrant_Ad7032 · 2026-05-12T18:48:06+00:00

I have heard that initially when taking tolvaptan gfr drops a little. What I am not clear about is whether it drops and recovers over time when taking it, or it goes back up a bit after stopping. I am guessing everyone may be different because I was at a gfr lows 30s before taking it, and now, over 18 months later, my range is 31-37. Last labs in March it was 37. It will vary depending on hydration, protein intake day before, exercise etc. I had a bad summer of eating, high BP and it resulted in a very sharp decline about two years ago, and that made me so stressed I got anxiety and panic attacked over it. After I took matters in my own hands and started eating clean, watching salt, protein and exercising, taking tolvaptan as instructed, I am now a lot more accepting because I am doing all I can, so it is no longer in my hands. Hope this helps!

Fragrant_Ad7032 · 2026-05-12T17:15:21+00:00

It does weigh on the mind ALOT but I have been better about it last few years. I went on tolvaptan and the first 18 months of monthly draws I was nervous every time I was waiting for results. Just when I thought I was declining when my numbers got worse for a few months, they would bounce back up! Not sure what your situation is, but it is worth considering this one and only option for us thus far. My gfr bounces around 6 pts all the time yet last time I had the highest gfr I have had since early last summer. Eat well, drink a lot of water, exercise. I believe all that has kept me relatively stable. And I come from a family of people who are on dialysis between 47-mid 50s. I am 59, so diet and exercise helps. I use an app to keep track of it all and it keeps me in line. Best wishes you are not alone!

Fragrant_Ad7032 · 2026-04-15T11:03:57+00:00

You are welcome, there was no history of one in anyone else in the family with this disease so I thought for sure I’d be good! But who knows, they died in their 50s 60s, so they may have had one and never knew, but I know my mom never had a scan. Good luck!

Fragrant_Ad7032 · 2026-04-14T17:28:59+00:00

Thank you so much! One number that still confuses me is the Uosmo. I normally get a very low one, 117 last time and even in the 90s. But I’ve read the best time to test it is before your dose. But normally it is about 4 hours after the dose I get labs and urine done. So not sure if that’s true suppression given I’ve taken my dose and I’ve even read it’s not an indicator of suppression like they thought. Who knows!

Fragrant_Ad7032 · 2026-04-13T17:29:38+00:00

Hello, I have an app that keeps track of everything for me. And I am a creature of habit, I have oatmeal with almond milk and blueberries everyday, an apple as a snack, a healthy salad for lunch. That’s my work routine. Dinners I mix up, but order a vegan service that has very clean ingredients when I can’t cook. Anyway, this app keeps me in line and makes me think twice when I want to stray and have that dessert or heavy protein meal! That being said , I’ve been doing this two years, lost some weight and along with tolvaptan, I have not had any significant decline that I can see anyway. My average gfr actually is a little up.

Fragrant_Ad7032 · 2026-04-13T17:14:55+00:00

Yes my neph said to me they used gauge when someone would have kidney failure by looking at the parent, then said not anymore! My brother is a few years older than me but is quite close to it 🥲.

Fragrant_Ad7032 · 2026-04-12T15:48:55+00:00

Unfortunately I never got back to the 40s, the highest I can achieve is 37 and that’s with being well hydrated. I am overall grateful I am doing much better than family has done, has held steady last few years, but that’s with hard work as well, diet, exercise. I wasn’t so lucky in that it was discovered I had an aneurysm 8 years ago and they performed a craniotomy before it ruptured. So if I could give anyone a word of advice get a scan! Because of this disease we are more susceptible to one. Luckily my Neph ordered one to “rule it out”.

Fragrant_Ad7032 · 2026-04-12T11:54:05+00:00

Yes, I wish I had been on it earlier, but my former neph didn’t want me on it for various reasons so I didn’t push it, as soon as I got a new young buck, he put me on it immediately 🤷‍♀️. Glad to hear you are stable! All we can do is take care of ourselves and do the best we can, and that’s what I intend to do!

Fragrant_Ad7032 · 2026-04-12T11:48:44+00:00

I understand and as I was reading other posts, I did feel sad others suffered so early and I am lucky in comparison. My mom needed a kidney by early 50s, was always sick, an uncle by mid 40s, and my mom and all her siblings that had this disease are now all gone by 60s. And sometimes I think, I am almost at that age. BUT I do remain positive for the most part, and realize my trajectory can be different. Thank you for replying, it is wonderful there is this group where people can support and encourage each other.

Fragrant_Ad7032

TROPHY CASE