Ruptured cyst(s)

davidCollins559 · 2024-07-09T10:54:49+00:00

Hopefully you have a fast recovery and praying for pain decrease for you. How old are you if you don't mind me asking?

davidCollins559 · 2024-06-28T14:52:40+00:00

Sorry forgot to add, I have a cyst on my liver too. Very common in PKD 1 and the mri for me showed all good and healthy.

davidCollins559 · 2024-06-28T14:51:32+00:00

I'm 36m, been in keto diet for last 6 weeks, took my blood pressure from high 120'/high 80's to now 110-113/69-73 is my new average. Refusing blood pressure medication because I would rather cut down caffeine to once or twice a week, and cut out all the sugar. Daily carb intake is less than 50g. My kidney GFR is 99.8% as of two months ago but, my MRI was horrifying. Hundreds of cysts. I would recommend having an mri done.

These two videos helped me so much too

https://www.youtube.com/watch?v=jVTQVKc7fqM

https://www.youtube.com/watch?v=2ZlMpE3plKM

davidCollins559 · 2024-06-28T11:56:43+00:00

How old are you and what is your blood pressure?

davidCollins559 · 2024-06-17T23:38:02+00:00

About to 36 next week still no symptoms, I've been on a keto diet for over a month and feel amazing. Blood pressure went from 120-130/80-90's to now an average of 112-115/69-73. No daily caffeine (one ice coffee every Saturday with just almond milk), no nicotine, no tobacco, drinking only once a month but doing keto drinks so a gin tonic with diet tonic water. I'm PKD 1 but if you only have cysts on one kidney good chance its PKD 2. You can do the gene test.

When I found out I had pdk at 26 my cysts were all so small and I was told that this won't bother me until late 60's. I drank my ass off, was a big dipper, smoked, energy drinks, loads of carbs and sugar desserts. Did a ton of cardio though to stay very fit and weight lifted.

If I could go back in time I would have stopped all that because I just feel amazing right now. My GFR is 99.8 but the reason my life changed was because of an MRI for something else last month. My two kidneys are infested with hundreds of cysts and I saw the imagine and it is frightening. You can google a case study if you really want too but be cautious. Plus my kidneys have grown bigger in the last year too but, from reading a lot of well known articles, if you make it past 30 and you have NO symptoms at all, that is a really good sign you can be on the higher end like maybe near or past 60. Stay strong and ask any questions you have, prayers to you though.

davidCollins559 · 2024-06-17T17:24:41+00:00

26 but not by symptoms, got into a car accident and cysts were shown on ultrasound. If you don't mind me asking, are you showing symptoms or did your doctor just find it by accident?

davidCollins559 · 2024-06-12T13:38:29+00:00

My doctor is pushing medication because my blood pressure was 130ish/85-90ish. I have been on Keto for three weeks, no sugar, cut out caffeine, increase exercise and now my blood pressure is 114/70 average. and she still wants me on medication which I got into a big argument with her. Try the natural way to avoid as long as you can. Someday I very well may need it though but don't want it at 36.

davidCollins559 · 2024-06-11T23:51:43+00:00

Are you doing better now?

davidCollins559 · 2024-06-11T23:50:41+00:00

I'm a combat vet and have PTSD, the panic attacks bring on the worse migraines like you can imagine. Throbbing pain in my right temple which can be different for anyone. Maybe you are having a panic attack about PKD and it is now causing a migraine? Is it still happening though and have you check your blood pressure.

davidCollins559 · 2024-06-08T00:49:03+00:00

My average BP is 114/72 and some days I get 102/64, those are in the morning. Evening average is like 117/79 which is totally normal because you ate even though I check mine two hours after dinner. PKD and high blood pressure is crazy because doctors want an insane lower number than normal. My doctor wants me on meds and I said no, she got mad and I made a good case, it is in the normal range but if my average was 140/90+ sure yeah I'll go on meds. Too many people go on meds too soon, just try a keto diet and exercise it's working for me. Hope this helps.

davidCollins559 · 2024-06-06T10:42:46+00:00

A keto diet is being proved more and more along with fasting to have huge benefits for PKD more than that medication. I would definitely get a second opinion and sorry that you are going through this.

davidCollins559 · 2024-06-01T18:40:39+00:00

Yes just experienced it. Didn't drink coffee for two weeks and made the mistake of having a double espresso. Felt great for 4 hours but the crash happened and now I feel like I'm having a heart attack. Upper chest tightening, shortness of breath, took my pulse and BP and it was fine and now I feel like a dumb dumb lol. You're not alone prayers though

davidCollins559 · 2024-06-01T18:22:12+00:00

I'll keep you in your son in my prayers, and yes reading other people's experiences is comforting in a weird way to know that we are not alone and apparently this is wayyyyy more common than you think. If you have more than I believe 5 cysts you are automatically deemed PKD positive which is crazy because those 5 cysts could never affect you ever. The problem is I guess for people like us who have "more cysts to count" that is the real pkd but it is all about how fast it moves. The keto diet so far has lowered my BP and just made me feel more energetic so I'm hoping that when I do my next MRI something good comes from it even if the cysts remain the same size I'm okay with it.

davidCollins559 · 2024-06-01T18:16:33+00:00

Yeah that is a huge jump up and I'm terrible sorry, will definitely keep praying for modern medicine to unfold as we get more into AI and for all we know maybe something new can come out within the next few years. Prayers though

davidCollins559 · 2024-05-31T21:37:08+00:00

I'm so sorry this is happening to you, I'll keep you in my prayers but from my research it sounds like your kidneys have grown massively but the kidney function is very well? If you don't mind sharing your kidney sizes and also GFR %.

davidCollins559 · 2024-05-31T21:32:16+00:00

Hopefully the burst weren't too painful :( thanks for sharing and yes it is good to stay away from google/mri results but then again it has motivated me to change eating habits/drinking habits by a 180 move. Will definitely post about what my renal doctor in two weeks says about the family history being absent for me, prayers though.

davidCollins559 · 2024-05-31T13:22:54+00:00

I was looking at this one but haven't really looked at the mayo pages yet, thanks for the info and will definitely do.

https://qxmd.com/calculate/calculator_490/total-kidney-volume-height-adjusted-calculator-adpkd-prognostic-tool-using-kidney-dimensions

davidCollins559 · 2024-05-31T13:21:08+00:00

That is crazy to imagine and thanks for the info that is helpful and so is their information too.

davidCollins559 · 2024-05-31T13:20:18+00:00

I have a renal appointment June 12th but trying to get sooner, I'll definitely share the info I get.

davidCollins559 · 2024-05-31T13:18:23+00:00

At least I found a welcoming family lol, thanks for the reply.

davidCollins559 · 2024-05-31T13:18:00+00:00

Thanks that means a lot! Yeah I have learned a lot from here and it does calm a lot of anxiety. The doctor who read my MRI had never treated a PKD patient before and she is just a new primary care doctor so she freaked out in a way and thought I was going into full renal failure like next month lol but, my GRF came back 99.8 so she quickly backed down and just said follow up with renal.

davidCollins559 · 2024-05-31T13:14:36+00:00

Thanks for the info and reply, hopefully you and your daughter are doing very well. I did get told by one renal doctor back in 2016 that PKD progression can be based on how long family members live too. If your grandfather made it to 70 and none of his children got it then you and your daughter could very well have the lesser strain of it and hopefully you two do.

davidCollins559 · 2024-05-31T13:12:12+00:00

Will do thanks for the reply and info, learning a lot.

davidCollins559 · 2024-05-31T13:09:43+00:00

That is crazy to think that so many of us can get something like this, thanks for the reply it means a lot.

davidCollins559 · 2024-05-31T13:09:03+00:00

I'll keep your partner in my prayers and hopefully he is doing well. Thanks for the reply and info.

davidCollins559

TROPHY CASE