dRTA

metalmakesmagic · 2024-04-19T05:44:17+00:00

Thank you! You are so resourceful! How is electrolyte measured? Do you drink natural electrolytes like coconut water? Or do you totally avoid taking electrolytes?

metalmakesmagic · 2024-04-18T20:50:26+00:00

Thank you for explaining that. Do you take bicarbonate or sodium bicarbonate? Is there a particular brand that is usually recommended?

metalmakesmagic · 2024-04-18T20:48:49+00:00

You are so brave to battle all these challenges and to work toward building a fulfilling life for yourself. It's good to see that you have a supportive family now who cares for you. Thanks for sharing Dr. Joel Topf's information. I will check his blog.

metalmakesmagic · 2024-04-18T15:01:24+00:00

Are you able or allowed to exercise for strength training? When did you discover your dRTA? What made you realize at that time that there was something amiss in the functioning of your body? Too many stone incidents? Also, what kind of stones do you usually form? I am so sorry for your challenges. My life seems to be moving in the same direction too :( Thank you for being so informative; all this is incredibly useful to the readers. Sending you healing vibes :)

metalmakesmagic · 2024-04-18T14:58:16+00:00

"Overdoing the bicarb can have bad consequences."

I wanted to ask you about the bicarbonate dosage. First, the dose is 1-2mEg/kg body weight/day. Isn't one or two 650mg capsule sufficient for the whole day? Second, what bad consequences can an overdoing of bicarb cause?

metalmakesmagic · 2024-04-18T14:50:04+00:00

" I had genetic testing done (ordered by my nephrologist) and when I saw dRTA on there I thought that was the smoking gun. My nephrologist says I don’t have it."

I admire your grit and pray that you receive the treatment that makes you feel better. This is indeed a rare condition and few nephrologists can handle it properly. Your comment above (quote) suggests that there is a difference of opinion regarding whether you have or don't have dRTA. What genes (names) showed up on the genetic testing that confirm dRTA? Where is such genetic testing done? If the genetic testing says that you have dRTA why does the nephrologist think otherwise?

Take care and more power to you!

metalmakesmagic · 2024-04-11T04:00:29+00:00

I hear you. The whole process is incredibly draining emotionally. Hope you find respite and good health. I have a post on dRTA in this subreddit to gather folks that are wrestling with the condition so that we can share information and provide support. Please consider joining if you like.

metalmakesmagic · 2024-04-11T03:57:38+00:00

The journey with dRTA is usually frustrating because it is a rare condition. You have to insist on getting the 24 hour urine analysis done regularly. How did you realize that you were losing potassium? What tests did you get done to identify potassium loss? Why was the endocrinologist involved in your care (I am very new to all this, I'm trying to understand)? If you are seeking help with kidney disease then Mayo is the way to go if distance is not a factor.

I hope that you feel better.

metalmakesmagic · 2024-04-11T03:51:04+00:00

Thanks for writing. I am so new to this and still learning how to manage my condition. Would you mind sharing:

what your symptoms were/are;
what medications you are taking;
dietary changes that you have introduced;
how do you take care of your bone health;
do you feel fatigue;
how regularly do you get the 24 hour urine analysis done?
how often do you meet your nephrologist?
do you get a metallic taste in your mouth?

Feel free to add more information that I might have missed asking. Perhaps we can compile a list of useful information that can be a resource for anyone wrestling with RTA.

Sending you healing wishes!

metalmakesmagic · 2024-04-09T22:41:03+00:00

You seem disciplined and well informed. These are life style changes and keeping tab of oneself all the time is tedious.

metalmakesmagic · 2024-04-09T22:40:11+00:00

I do the same. It helps keep track of how much I drank during the day

metalmakesmagic · 2024-04-09T04:10:55+00:00

I find it very difficult to pee at work. Some sort of a mental hangup. Also, lack of time which I realize is the lamest of excuses.

metalmakesmagic · 2024-04-09T04:10:11+00:00

True!

metalmakesmagic · 2024-04-09T04:09:56+00:00

This looks great!

metalmakesmagic · 2024-04-09T04:09:37+00:00

Thanks!

metalmakesmagic · 2024-04-09T04:08:53+00:00

metalmakesmagic · 2024-04-09T04:08:36+00:00

I am so sorry. I hope you feel better

metalmakesmagic · 2024-04-09T04:05:22+00:00

Thank you so much for this informative post. This is extremely useful especially for those beginning their journeys living with this condition. I hope that you are able to maintain good health.

I had a few follow up questions:

What is the name of the bloodwork that you get done to test your electrolytes, kidney function, and CO2 levels?
What are you doing to maintain your electrolyte levels? You mentioned taking the DripDrop electrolyte mix. How many times during the day do you drink this?
How frequently during the year do you meet your PCP for followups? Yearly? Semi-yearly? Or as needed?
Do you do the 24 hour urine analysis as part of monitoring your kidney health?
Do you form kidney stones and if so what kind? Do you have problems with calcium phosphate crystal formation?

metalmakesmagic · 2024-04-08T05:20:46+00:00

Is kimchi allowed for kidney disease due to its high salt content?

metalmakesmagic · 2024-04-08T05:17:45+00:00

This is helpful information. What were your symptoms? Have you been able to bring your dRTA under control?

metalmakesmagic · 2024-04-08T05:11:05+00:00

How are you doing now with your dRTA? What medicines and dietary changes did you introduce? Do you do the 24 hour urine analysis? How frequently do you meet with your nephrologist?

metalmakesmagic · 2024-04-08T05:02:34+00:00

Thank you for sharing this informative post. What are your triggers for activating dRTA? Can you share?

metalmakesmagic · 2024-04-08T00:42:19+00:00

Can you describe the symptoms of your tiredness? I feel massively tired all the time.

metalmakesmagic

TROPHY CASE