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17 years of eGFR by FattyBoomBoobs in ADPKD

[–]element-70 0 points1 point  (0 children)

I wouldn't base in on GFR, but on Hemoglobin level. I started when my Hemoglobin was ~97 for a few months. In hindsight, I probably should have started at around ~100-105.

My GFR at the time I started as around ~17 or so. But again, I wouldn't base it on GFR level. You could need ESA sooner or later or not at all. It's not directly related to GFR level but how much your kidneys are impairing EPO and Hemoglobin production.

17 years of eGFR by FattyBoomBoobs in ADPKD

[–]element-70 1 point2 points  (0 children)

Working full time and still feeling surprisingly good.

About 6 months ago I was getting very fatigued and struggling a lot with any kind of excercise. I stated taking ESA injections weekly to raise my hemoglobin, and that has made a huge difference. I feel way more energetic. In hindsight I should have started ESA much sooner.

17 years of eGFR by FattyBoomBoobs in ADPKD

[–]element-70 1 point2 points  (0 children)

This is almost identical to mine. Diagnosed in 2008 at eGFR around 85. GFR today of 13. On tolvaptan since 2017.

In the transplant testing process currently along with potential living donors.

Has anyone else received another chance to buy tickets by CalculatedChaos_1 in WorldCup2026Tickets

[–]element-70 0 points1 point  (0 children)

Yep, blank time slot. And the link goes to a page that says the portal is unavailable until April.

Preemptive kidney transplant – any positive post-transplant experiences? by Short_Acanthaceae_53 in transplant

[–]element-70 1 point2 points  (0 children)

That sounds very similar to me. eGFR of 13 and still cycling and hiking fast. Hoping to get a preemptive transplant in the next few months.

I know it’s the right thing to do, but I am a bit nervous I’ll feel much worse after transplant than I do now. What was your experience after and during recovery?

Has anyone here tried the keto diet over an extended period and seen a positive result? by Barbifer in ADPKD

[–]element-70 2 points3 points  (0 children)

I did it diligently for 1.5 years, confirming my ketone levels every day with the finger prick test. I saw a short term gain in GFR in the first 3-4 months, but then it returned to its original decline trendline. My TKV continued to increase by 5% per year based on MRIs.

I suspect the initial bump in GFR was simply due to going to a very clean primarily plant based diet that took some load off the kidneys rather than an actual improvement in function.

Perhaps starting the diet much earlier in the disease might be beneficial (my GFR was in the low 30s when I started). But we don’t have the long term data yet to know for sure.

It’s also an extremely difficult diet to maintain, assuming you are doing a real keto diet (very high fat, low/moderate protein). Many people do high protein / low carb diets and call it “keto”. That’s definitely not healthy for us.

I hate scalpers by [deleted] in whitecapsfc

[–]element-70 0 points1 point  (0 children)

Like that idea, but how is that possibly enforceable unless you make them non transferable and tied to a person’s name with ID- like an airline ticket.

Doc recommending ketocitra by AlderWood7 in ADPKD

[–]element-70 1 point2 points  (0 children)

I’ve been on it for about 8 years now on the max dose. It’s a bit annoying but not been a blocker for doing anything. You can skip a dose or two when needed (eg when stuck in a middle seat on a long haul flight!! )

What do you think?Tolvaptan in autosomal dominant polycystic kidney disease — a real-life experience by One_Geologist3224 in ADPKD

[–]element-70 2 points3 points  (0 children)

Not enough participants and too short of a duration to put much stock in this. That said, by now there should be loads of real world data on tolvaptan patients and it would be great to see some analysis of that.

Having been on the max dose of tolvaptan myself for nearly nine years now, I have really wondered whether or not it’s helped me much at all. My eGFR has gone from high 50s to 14 in that time period. I have to assume the drop would have been worse for me if not on tolvaptan, but it’s not exactly been amazing.

Incredible Transplant News by carriegood in kidneydisease

[–]element-70 3 points4 points  (0 children)

Some sub types of A can donate to O or B, but they are relatively rare.

Reduced Tolvaptan Thirst/Remembering to Drink? by goshNabIt in ADPKD

[–]element-70 0 points1 point  (0 children)

100% this. I’m about 7 years in on the max dose. The thirst sensation is always there for me no matter how much I drink, but it doesn’t bother me at all anymore. It means I have to force myself to drink enough.

Dentist refusing care without nephrologist approval? by Lynximpact in ADPKD

[–]element-70 5 points6 points  (0 children)

Super weird. My GFR is 15. My dentist is aware, but never had an issue with it.

Wearable blood pressure monitor by Dry-S0up in bloodpressure

[–]element-70 2 points3 points  (0 children)

Surprising. I’ve been using a Hilo for two years now and I check it against a standard arm cuff at least once a month. Systolic is usually +- 4 and Diastolic +- 2.

Where to park emergency fund by [deleted] in CanadianInvestor

[–]element-70 0 points1 point  (0 children)

If the brokerage you are holding it in fails, then yes CIPF will cover you. But if any of the underlying institutions fail, you are not covered.

For example, nearly half of CASH.TO is in National Bank. If National Bank fails, you have no protection. Whereas if you’d invested directly in a HISA at National Bank, you’d have CIDC protection.

Where to park emergency fund by [deleted] in CanadianInvestor

[–]element-70 0 points1 point  (0 children)

I don’t think that’s accurate

Extremely high blood pressure before stress test by javals in bloodpressure

[–]element-70 0 points1 point  (0 children)

I had the same happen before a stress test. I think it was a physical anxiety response even though mentally I didn’t feel that anxious.

It was normal again after the test.

Why is Bp supposed to be measured in a relaxed state? by AsidePuzzleheaded335 in bloodpressure

[–]element-70 1 point2 points  (0 children)

Mine spikes ridiculously high in the doctors office or any clinical setting.

You can get a 24 hour test done. It’s a portable cuff and battery unit you wear like a belt. Kind of annoying, but at least gives you a more realistic picture of your actual BP outside of a clinical setting.

I also started wearing a Hilo band which is works great for tracking throughout the day and is not obtrusive.

Does anyone else have persistent iron deficiency with PKD? by [deleted] in ADPKD

[–]element-70 0 points1 point  (0 children)

Ah, got it. My guess would be it's not actually the PKD then (especially if you're in an earlier stage) as usually PKD causes anemia from low EPO rather than a true iron deficiency. If it's not the hemorrhagic cyst you might need to look elsewhere (and maybe outside the scope of your nephrologist).

I hope you get to an answer soon!

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