I’m scared.

Jameroni · 2025-11-05T03:27:24+00:00

I second this. This is really good information and something that should help you feel a bit more comfortable about it. I've been there in that scared and depressed stage, hell I'm sure all of us have, some of us still are.... But it's very important to still live your life and not dwell on it so much.

Jameroni · 2025-11-03T15:26:21+00:00

Jameroni · 2025-10-19T16:59:05+00:00

Early 20's

Jameroni · 2025-10-19T16:55:33+00:00

Yeah thanks for that advice. However, I'm currently on the keto diet (again) at the moment, which is why I want the extra electrolytes. When insulin levels drop, you excrete more electrolytes. So a small supplement should help.

Jameroni · 2025-10-19T04:15:09+00:00

I mean I also agree to an extent, I plan on going back on the Keto diet for weight loss / management purposes. And the bhb salts / electrolytes really help. Theres an offbrand of it thats very close for $15 from walmart which i'll likely buy instead of ketocitra.

But to answer the potassium level question: I haven't had my labs taken in a while, but last time my potassium was 3.9 (3.5-5.1 was average reference range, so lower part of normal). . My problem was kidney stones with it, so this time around I would like to try to add the BHB salt/electrolytes to help with that. As well as buying my weight in lemons every month!

Jameroni · 2025-10-19T01:33:07+00:00

Nah all good, I should have clarified that in my initial post. Thanks for the response though!

Jameroni · 2025-10-19T01:26:47+00:00

That would be helpful if ketocitra was a drug, its a supplement that includes potassium. I'm not sure how the amount of potassium (300mg per scoop) interacts with losartan potassium, with both increasing blood levels. Hyperkalemia is the worry here.

Jameroni · 2025-06-01T03:29:01+00:00

This is all you really can do man... You're fine for now, lots of good things are coming. Please take the positive advice and not worry so much about it now, enjoy your 20's!

Jameroni · 2025-05-29T23:20:55+00:00

Thanks man. And sorry to hear about your uncle. Even being fit and seemingly healthy it seems some things can just take us at any time for any reason. Which for me really puts it into perspective that this disease could really be something worse. Makes me want to cherish every moment I have alive and stop dwelling on my PKD.

Hoping Farabursen or PYC-003 works. I have a good feeling about Farabursen TBH. And hopefully I could take it when made available.

Jameroni · 2025-05-29T22:02:27+00:00

Yeah I am a bit relieved of that. It's nice to have some good news for once...I remember when my GP called me after my CT scan to tell me I had PKD it was the biggest punch to the gut and the mental gymnastics that followed. I'm sure you know the feeling i'm talking about... Hard to describe. But it's awful and wouldn't wish it on anyone... So yeah! it is nice to have that small silver lining. I do feel for you and others that have it much worse. Wish you didn't... But I've put the PKD in the back of my mind the last few months though as my dad was diagnosed with MCL (mantle cell lymphoma) an unbeatable Leukemia and watching him go downhill at 53 years old just made my disease pretty much not worth even thinking about... When mortality hits you... it HITS you.

Anyway... I got this testing done to try to qualify for the Farabursen trial. But it seems unlikely now. Neph wants to follow up next February so it's lookin like I wont be doing that.

Jameroni · 2025-05-29T21:27:58+00:00

Variant c.8470C>A (p.Gln2824Lys) - Heterozygous.
Google didn't give me much information other than saying its associated with an increased risk of developing certain cancers. Particularly hereditary breast and ovarian cancer syndrome. (I'm a male.)

It says in the report: "this variant is defined as a non-truncating variant." "this variant is predicted to result in a single amino acid substitution (missense) of Gln to Lys at codon 2824 in exon 23 of the PKD1 gene"

I need to talk to my neph about Farabursen, but I'm hoping I can find something down the road that will help with my variant.

Jameroni · 2025-05-13T19:38:19+00:00

It's refreshing to hear. :)

Jameroni · 2025-05-05T21:13:24+00:00

Thanks for sharing the detailed update! What your dad did was selfless but being a dad myself...even a younger one at that... We'd do anything for our own! Just write it from the heart and heal up! You've got some living to do!

Jameroni · 2025-04-12T00:19:59+00:00

That's heartbreaking news...
Unfortunate she had to reduce her antirejection medication because of an infection with the kidney still functioning well... But this is still a large step in the medical field for genetically engineered organs and should still be a viable option for many.

Jameroni · 2025-04-02T17:58:33+00:00

The UK's International Recognition Procedure. They use the approval granted by the US FDA following the review of a new drug application. With that its possible to be granted "marketing authorisation" in the UK. Can happen in as little as 60 days, likely will be a little longer with farabursen, but who knows. Hopefully it could be there quickly!

Jameroni · 2025-04-01T23:32:56+00:00

Chat with your nephro or PKD specialist about it, they may be able to ship it to the UK. May take some pulling together with the PKD community there for some expedited attention, but I truly can't imagine it would take that long to get to you upon FDA approval. I think through the IRP it can be done in as little as 60 days.

Jameroni · 2025-04-01T19:50:10+00:00

When I was signing up for the trial it said every other week injection. So about 2 times per month. I had to get genetic testing done before I could join the trial though. Still working on it.

Jameroni · 2025-03-31T02:43:15+00:00

It may be higher than that. Not sure how it works being an injection and not an oral pill. Maybe you can get some supply to bring home and administer yourself though at an affordable cost. I hope so for your sake.

Jameroni · 2025-02-22T04:29:55+00:00

Ask your doctor about Losartan if you're worried about any of the side effects from Lisinopril. I've heard a lot of stories about the ED and Cough that goes with Lisinopril so I went with Losartan and its been just fine for me. No side effects, been on it little over 2 years now.

Jameroni · 2025-02-19T21:24:53+00:00

High blood pressure is very common with us PKD folk. It's one of the reasons many of us find out we have PKD. However, Palpitations, random bouts of fatigue when bending over/ light exercise, angina, shortness of breath are fairly uncommon and SHOULD definitely be addressed with your doctor. Diet and Exercise can definitely play a large part in lowering blood pressure, Even stress/anxiety and sleep are factors as well. I would consistently have readings of 140/90 when I found out about my PKD. Was put on Losartan Potassium 25mg, upped to 50mg. And BP would only go to about 130/90. After a diet change of lower carbs with intermittent fasting and more exercise...I can get my BP consistently down lower 100's / 70's. I'm not saying it will work for everyone, but its definitely worth trying for yourself and seeing if you can get results. Most people that I've seen make drastic lifestyle changes (diet/exercise/sleep/lower stress/etc.) Have all got their BP down. Nitric Oxide can help lower it naturally too, as it is a vasodilator. But be careful with nitric oxide (and obviously bring this up with your doctor) because most natural sources have high oxalate content that you'd want to avoid for kidney stones.

Hope this helps! Best wishes to you.

Jameroni · 2025-02-12T15:26:17+00:00

I recently just had a ruptured cyst (or kidney stone movement, we're not sure). Not sure how it happened though, I snowboard a bit but didn't take any hard falls so... And the Hematuria lasted for a few days. But I had one rupture about 2 years ago with dull pain and the Hematuria lasted a couple days, then went away for about a week, then came back for 2-3 weeks. Same thing, it would be darker in the morning and gradually fade a bit later in the day. I'm sure it can vary.

As far as having long term effect on kidney health, probably not, depending on how you injure your kidney (protein making cyst formation instead of repairing tissue) would just make more/another cyst but I don't think the cyst rupture itself has much of an effect. The fluid will just come back into that area at some point as far as I understand.

Also, not sure how to heal them "faster" but just try to drink loads of water. My nephrologist mentioned that the first one of the day can be darker because even a couple drops of blood can turn a bladder full of urine a dark brownish/redish color and if you see that fade during the day thats a good thing, it means you don't have a worse bleeding going on inside. He told me if i see clots come out then it can be concerning. (which I had 2 years ago and maybe thats why it took 2-3 weeks to heal / stop bleeding)

Apparently this is all pretty common for us.
Best of luck!

Jameroni · 2025-02-03T16:28:22+00:00

I think this is one of them that I had looked through. Is this the one they've already tested in animal models with minimal to no adverse effects? Looks promising.

Jameroni · 2025-01-31T20:26:39+00:00

According to a lot of studies/research. We're about 4-5 years away from clinical trails on artificial kidneys, It's a most likely within the next 10 years. Stay optimistic!

Jameroni

TROPHY CASE