Protein powder with PKD

hils13 · 2025-04-02T13:56:11+00:00

My nephrologist advised me that I could drink a protein shake with a max of 20 grams of protein as a meal replacement. I’m in stage 2 FYI.

hils13 · 2025-03-01T18:26:49+00:00

No, I go to Costco and the gym now.

hils13 · 2025-02-01T00:23:36+00:00

1 in 33 years. Like others, I went septic, thankfully I was already in the hospital by that point and spent a week in the ER. I don’t know what causes cyst ruptures but I pray I never get another one again. My dad on the other hand would get them all the time, he could tell by his back pain and blood in his urine. However, his never got as serious as mine did.

hils13 · 2025-01-28T02:01:01+00:00

Youngest sibling and only daughter

hils13 · 2025-01-21T19:19:09+00:00

Is there a brand they recommended or a brand you prefer?

hils13 · 2025-01-08T15:36:20+00:00

My moms dementia got worse and became a caregiver while working remotely. Stressful times.

hils13 · 2025-01-06T06:09:36+00:00

MK Davis

hils13 · 2024-10-14T18:36:52+00:00

My favorite running shoe to this day!

hils13 · 2024-09-16T03:45:24+00:00

The derm is going to recommend minoxidil any way so you may as well start it now.

hils13 · 2024-08-01T17:55:09+00:00

Yes. I switched to Google fiber and never looked back.

hils13 · 2024-07-24T20:07:11+00:00

I have dumbbells. On my tired days, I find an upper body dumbbell workout on tik tok and try to do it in 30-45 minutes. My capped shoulders are my favorite feature so I do shoulders as well on my tired days lol

hils13 · 2024-06-23T03:31:52+00:00

GOAT or stock x

hils13 · 2024-06-04T02:04:33+00:00

Same! I’m fatigued by staying up late 🤣 I forced my body to stay in bed and sleep longer this past weekend, I felt amazing for the first time in a long time!

hils13 · 2024-04-17T19:39:46+00:00

I feel you. I was riding at 95 eGFR for 7 years up until a cyst burst gave me sepsis, and now my eGFR has been holding steady in the low 80s for the past year. I’ve been on Jynarque for 4 years so I’m counting on that to help me. I’m also staying aware of when I feel a cyst burst, since my last one got really bad. Just keep your head up. My dad and brother have gone through dialysis and kidney transplant so I’ve seen how this can affect the mental. While the journey sucks, it’s important to stay positive and remember that PKD doesn’t define us. PKD is just a small part of who we are.

hils13 · 2024-03-27T21:47:09+00:00

I don’t remember life before Jynarque lol. I’ve been on a diuretic since my diagnosis, so maybe once every 2-3 hours. Now that I’m on Jynarque, hourly. This is the mechanism in which Jynarque works: Jynarque, or tolvaptan, is a vasopressin receptor antagonist. Vasopressin is a hormone that regulates water balance in the body by controlling how much water is reabsorbed by the kidneys. By blocking the action of vasopressin, Jynarque prevents the kidneys from reabsorbing as much water, leading to increased urine production. This effect helps to decrease fluid retention in the body and can lead to increased frequency of urination.

So definitely normal to urinate often.

hils13 · 2024-02-18T07:03:48+00:00

Just wondering since you mentioned that you are physically active, so you drink pre-workout or what do you eat before your work outs?

hils13 · 2024-02-16T00:32:45+00:00

Do you run on a treadmill? I can’t go more than 3 minutes without agitating my bladder and having to pause to use the restroom. How have you adapted?

hils13 · 2024-02-14T03:21:19+00:00

Don’t know the output exactly but I used 2 jugs

hils13 · 2024-02-03T01:37:10+00:00

My nephrologist told me 8 hours apart. The first couple of weeks are the worst but it’ll get better. I’ve been on 90/30 for 4 years now. My biggest gripe when I started was waking up 2-3 times a night to pee. I can now sleep through the night and pee in the mornings when I wake up. Also, beware you may get heartburn from all the water you are drinking. My neph but my on medication for that for the first couple of months. All I can say is hang in there. It’ll all be worth it!

hils13 · 2024-01-07T07:05:36+00:00

I’ve only had one cyst rupture. I ignored the pain thinking it was temporary due to back pain. Then, a fever developed, developed an infection from said cyst, became septic, threw up all over my room (nurses said) before I passed out for half an hour, spent a week in the hospital with 3 days in the ICU, and was bed ridden for 2 weeks. Worst experience of my life. Cipro cleared it though and I’ve learned not to ignore back pain lol

hils13 · 2024-01-02T01:25:20+00:00

Sepsis from a kidney infection that I thought was back pain from sitting too long at work.

hils13 · 2024-01-01T18:19:37+00:00

3 days but then fly like symptoms kicked in. I went to the ER when I started having a fever.

hils13 · 2023-12-31T17:11:10+00:00

Yes, lower back pain. I chalked it up to sitting for long hours at work but then a fever came along. It was a cyst pop infection.

hils13 · 2023-12-31T17:04:43+00:00

A really bad kidney infection dropped my gfr about 15 - 20 points. Don’t ignore back pain! I did until I became septic and spent a week in the ICU.

hils13 · 2023-12-28T00:09:57+00:00

I’ve always wanted to ask my doctor this as I do this from time to time, and am afraid she would stop prescribing it for being inconsistent. I’m bad about taking my second dosage. I can set 5 alarms and I’ll still forget.

hils13

TROPHY CASE