PKD

[Bibabi]

Hello to everyone,

I am a new to this I would like to ask is there a somebody who has PKD?

I am 48 creatinine level 102 and my kidney works 50. Is there any help how to stop these cysts ? Thank you for any help.

[Bibabi]

Did anybody heard about Osmotherapy ?

[Camila77]

Hi Bibabi, yes, if you are in earlier stages you are at time. Do a research in Mayo Clinic and Cleveland Clinic. I also read some trials. I have same problem but my doctor (it was supposed to be the best one here in Miami) never told me about the treatments. I’m 41 years old and this year I started to feel uncomfortable with the size of my kidneys, I feel pain and also I need to change position during night time.

Best wishes and God bless you!

[Margie5967 in reply to Camila77]

Before you were officially diagnosed what were your symptoms may I ask?

[Camila77 in reply to Margie5967]

I was living in Italy when I was diagnosed with PKD. I used to work 9-11 hours a day in a desk. I was uncomfortable with my back and I kept telling my primary doctor in Italy but she never figure it out. Few months later I had an UTI and I went to the hospital, the urologist order a X-ray picture and that was the day, by them I was so depressed. Health care in Italy is pretty bad so as soon I moved here I got better knowledge about my situation. I have been taking Losartan 50 mg for years and now I decided to change to another doctor and want to ask for Tolvaptan that seems to help a lot. Now I started recently to feel pain in my left kidney. Even going to the supermarket is not fun. So I’m looking forward to start Tolvaptan. The psychological part is a mess. I always have been pretty stable, and I look calm but I keep crying often. I’m thinking in starting some therapies. How are you dealing with?

[Margie5967 in reply to Camila77]

I am so sorry you are having these issues.

I see a nephrologist on Thursday .

I have had a ultrasound and it was normal.

So I am not sure where this back pain is coming from with my GFR of 54.

I hope this pain does not affect my lab.

Did you have an ultrasound or a MRI?

My pain initially felt like tightness and pinching or spasms.

Now it’s lower back pain also.

Is that similar to what you have?

[Camila77 in reply to Margie5967]

Ohhh that’s great news for you. The first I did was an X-ray, then a ultrasound and eventually ct-scan and MRI scan. Since the beginning, my first images were very bad, no doubt about the PKD so... I think you should feel relieve. I bet if your kidneys look normal you are going to be fine so don’t worry.

I think you GFR 54 is maybe related to dehydration, just telling but I’m not a doctor. Not drinking enough water damage the kidneys. But you will be fine, GFR 54 is most reversible if it is for a dehydration . Maybe the doctor will put you on a special diet.

About the pain, yes. It feels exactly like that. But you are going to be fine, I’m pretty sure. Just watch your diet.

Will be fine. 🍀

[Margie5967 in reply to Camila77]

Thank you. My GP thinks my NSAIDS might have caused it. I don’t take them anymore. What do you take for pain?

Did they diagnose your pkd with a biopsy or the MRI Scan?

[Camila77 in reply to Margie5967]

For the pain: ibuprofen is a killer for the kidneys so you have to avoid it.

I take acetaminophen if very necessary.

The truth, I’m afraid of taking medicines because of my condition. Antibiotics in people with kidneys problems are always bad so avoid unless you have to do it.

I never had a biopsy. My cysts are that many and also some of them are bigger than my bladder so I never need and and MRI for the diagnosis (it was very evident). For the diagnosis was enough the x-ray image and the ultrasound.

Instead for checking and controlling my kidneys deeper, I have had MRI few times.

Of course the doctor always check my blood. Every 6 months.

[Margie5967 in reply to Camila77]

Thank you so much.

I am trying not to worry, I know that’s bad.

[Camila77 in reply to Margie5967]

Ohhh forgot: vitamin C may be also bad for your kidneys. Take it if necessary but not always.

[Margie5967 in reply to Camila77]

Ok I will watch that.

Did you have dizziness before your diagnosis?

[Camila77 in reply to Margie5967]

No, just the pain. In the beginning the pain was just when I seated for long time at my desk. I don’t know if my digestion problems are related to that too but I always vomit easily when I eat different dishes so I learned to eat just 1 dish and not too much to avoid discomfort.

Margie, check also the food you can eat in Internet. There is a lot of good information that doctors will never tell you. Remember: Mayo Clinic and Cleveland Clinic have lot of good info, also videos in YouTube. Of course, check the credibility of the resource.

Let me know what the nephrologist tells you so I help you to find some good info.

[Margie5967 in reply to Camila77]

Thank you so much.

It really helps to talk to someone.

I will keep you posted.

[Camila77 in reply to Margie5967]

I know. Hope anyway you can improve your condition and get to normalize your kidneys. It is going to be fine for you. 🙏.

Thanks to you! It is always good to find someone with empathy about this issue. Have a great night! 🍀

[Margie5967 in reply to Camila77]

Hello Camila,

I went to see the nephrologist yesterday.

He reviewed my previous labs and meds. I won’t say that he was unconcerned however it was very obvious that he felt my labs were not a cause for concern.

I shared with him that my initial 24 creatine test of 450 was high.

He says they aren’t concerned until they get to be over 1000.

He saw no need to repeat my labs.

I had to insist that he repeat my labs.

I have waited 3 months to see you and it’s my health.

Thankfully my labs came back normal but this just goes to show that you have to be your own advocate for your health.

Potassium 3.3

Bun 13

Creatine 1.3

GFR 53

Phosphorus 3.1

I immediately called my GP because these back spasms are unbearable and the nurse told me to eat a banana to see if that helped. Like magic it did.

I am happy my labs are stable.

I wish it was a way to get my creatine down.

I eat very little protein now.

I just want to stay as stable and as healthy as long as I can.

[Camila77 in reply to Margie5967]

m.kidney-cares.org/dialysis...

Hi Margie,

That link may help you to understand some similar situation.

The creatinine 450 is actually height but your GFR is ok. As the link says: The normal range of serum creatinine in healthy individuals is 53 to 140 umol /L.

But it also depends on your age, weight and tallness. Your doctor should tell you in base of that info.

Yes, banana is great if your potassium is low. I do eat banana often for the same reason.

Years ago I went to a dietitian specialist in kidneys disease. He told me to eat between 3 to 5 times a day in little portions, eating big quantities is too much work for kidneys and he told me to decrease eating by 10 %.

Don’t eat salty, some protein is good but not too much. White meats are ideal.

Drink a loooot of water (just water). But if your blood pressure is high, that day don’t drink too much.

Check always your blood pressure and is you see that is often higher than normal you should take a medicine to control it.

Try to work out, maybe brisk walking or running, swimming or whatever cardio is always helpful.

See another nephrologist, a second opinion is always wise to have.

I’m falling asleep now but will write you tomorrow.

Have a great night!

[Margie5967 in reply to Camila77]

Thank you Camila.

My Gfr had changed much and the dizziness is much better.

Too much HCTZ in my bp meds was the cause of my dizziness.

I am trying to do all I can to maintain my labs.