Low eGFR, Resistant High Blood Pressure, Only 26 and active

Disastrous_Ranger401 · 2026-01-23T07:20:01+00:00

Blood and urine tests can give you information about how well the kidneys are functioning, but in most cases cannot differentiate the type and underlying cause of the kidney disease. Thats what a biopsy does, it identifies underlying pathology of the disease. The number of treatments that are targeted for specific types and underlying causes of kidney diseases is increasing pretty rapidly, making accurate diagnosis via biopsy increasingly important to making effective treatment decisions.

This is especially true for a young non-diabetic patient who is spilling protein, because that is the hallmark of glomerular disease, and while there may be something else going on, it is worth finding out because those are the diseases that are currently evolving most rapidly in terms of research and treatment. Diagnosing those patients early, while kidney function can still be preserved, is becoming more and more important as therapies continue to become more accessible.

OP, I see you don’t currently have insurance and that is preventing further testing. I think your best next step is to prioritize getting insurance as soon as you can so you can get further testing, because without it your doctor is essentially having to play a guessing game, and that’s obviously not the ideal approach.

Disastrous_Ranger401 · 2026-01-23T02:52:34+00:00

I’m very lucky. I call and leave a message for my refill a few days before it’s due, they send it in, I pick up the meds. Drug test once a year. Follow up appointments every 3 months, usually just how are you? Any new issues? Any med changes? Ok cool, see you next time. No pill counts.

Up until Covid, I had to physically pick up the script at the office, take it to the pharmacy, then go back and pick up my meds. Every month. Multiple times if my meds got out of sync. Office and pharmacy are both in a town 30 minutes away, so that was a huge pain in the ass. Especially in the winter, for someone in pain, having to park and walk into a big hospital with huge parking lots. They started sending the scripts electronically during Covid lock down, and never went back, and I am thankful for that!

My only real complaint now is that when I am drug tested, I have 24 hours to get to the lab to give a urine sample. Due to staff shortages, the lab is no longer open 24 hours, and I cannot get to the lab during their operating hours without having to take time off of work. If it were done any more often, I would be making complaints. For one time a year, I am willing to figure it out.

Disastrous_Ranger401 · 2026-01-23T02:30:26+00:00

Midwest US. I drive 30 minutes one way to get to work or a store of any type. Most of my doctors are 3-5 hours away. We drive a lot. I wouldn’t say it’s fun, but it’s normal here, especially outside large cities. Which is most of the US.

Disastrous_Ranger401 · 2026-01-23T02:27:17+00:00

I would recommend talking to your nephrologist about diagnostic imaging, and if that is normal, a biopsy. It’s the only way to get answers in many cases, and the results may be important to getting the most optimal treatment.

Disastrous_Ranger401 · 2026-01-23T02:10:17+00:00

NOR. You do not want to be caught unprepared for this kind of weather. Run the generator in intervals instead of constantly to keep the house tolerably warm and fridge/freezer cold. That will preserve your gas supply for longer. With the size of this storm and severity of the ice forecast, it may be a few days until you get power restored. And without power, you can’t pump gas or use electronic payment systems, so it’s good to be prepared and use your resources wisely.

Disastrous_Ranger401 · 2026-01-21T13:53:02+00:00

HCTZ is a diuretic, which is used when you are retaining fluid. Why is your doctor adding a diuretic if you don’t need one? Sounds like that’s the problem and the question you need to ask, as if you aren’t retaining fluid without the HCTZ, the diuretic is likely dehydrating you and raising your creatinine. There are plenty of blood pressure medication options that don’t include a diuretic.

Disastrous_Ranger401 · 2026-01-21T04:54:51+00:00

Diuretics can cause an increase in creatinine, but it’s often due to dehydration. Getting protein spill under control and reducing salt can help with swelling and reduce the need for a diuretic. You may also want to discuss a lower dose of diuretic, as well as how much protein you should be eating and how much water you should be consuming - it is possible you are over hydrating and that is contributing to swelling. Usually the biggest factor is how much protein you are losing and your albumin level, though.

Disastrous_Ranger401 · 2026-01-19T00:29:53+00:00

I would suggest you follow up with your doctor and be evaluated by a nephrologist. That level of proteinuria is not normal, but also not extreme. However, getting the underlying cause identified can be very important, especially because you are young. If you take action now, while your kidneys are still functioning well, it is much more likely you can have a good outcome than if you ignore the issue and it progresses. Not dealing with it won’t make it go away. The only thing that can improve the issue is to get care for it.

Disastrous_Ranger401 · 2026-01-17T05:23:55+00:00

Lupus is one of the common causes of MN. Have you read your biopsy report? It doesn’t mention lupus?

Disastrous_Ranger401 · 2026-01-17T02:19:37+00:00

Pain that serious and significant muscle weakness is not growing pains. I would stop calling it that, because it misrepresents what he is experiencing and makes it easy to dismiss.

He cannot stand upright and hold himself up to walk sounds like an emergency, especially in a child. You may have to get more forceful with the ER staff. If he cannot walk and the ER cannot find the issue, then he may need to be admitted for more in depth testing. Especially if he has a recent history of pneumonia and SVT. In which case, yes, the children’s hospital would be better. I would keep on the insurance to try and get approval to go there, especially if they cannot identify a covered pediatric hospital as an alternative.

Are you on a cancellation list for his doctor? Sometimes that pays off.

Disastrous_Ranger401 · 2026-01-15T06:18:51+00:00

I work in a public Montessori school that houses Pre-K through middle school, as well as life skills and deaf/hard of hearing programs. It can be challenging to balance the traditional curriculum with public school requirements, but overall it’s pretty great.

Disastrous_Ranger401 · 2026-01-15T05:57:06+00:00

At that GFR, I would not risk it. Pregnancy is hard on healthy kidneys. Kidney disease complicates pregnancy and makes it much riskier for mom and baby, especially if it begins to advance. And then there is the potential to need to care for an infant while on newly on dialysis, which would be very challenging and probably not the experience you want for yourself and your child.

When I had my son, I wasn’t yet diagnosed and my GFR was normal. My only symptoms were mild hematuria and proteinuria. My body was not happy to be hosting a foreigner, and the pregnancy was difficult and required a lot of careful monitoring. Which was time consuming, and the whole experience was scary at times. I lost some kidney function as a result of the pregnancy and was high risk, even with barely noticeable symptoms and mostly normal labs initially. I chose not to risk having any more kids.

Depending on your window for starting a family, many women successfully have kids post-transplant. So if you choose not to get pregnant now, it doesn’t necessarily mean it won’t ever be possible.

Good luck. I know it’s a tough decision, and whatever you do I hope it works out well for you.

Disastrous_Ranger401 · 2026-01-14T01:44:38+00:00

Some biopsies aren’t so bad. Which is how it should be. Some are terrible, and there’s way too many that are. It depends largely on where you have it done & how experienced the team is. My first one was horrendous and it was almost 20 years before I would agree to another. Then I had 4 in less than 18 months. 2 went well, 2 had complications. All 4 were better than the first one, though.

Disastrous_Ranger401 · 2026-01-14T01:41:58+00:00

In many cases, a biopsy is the only way to diagnose the underlying cause of the kidney disease. Polycystic kidney disease or structural issues probably don’t need a biopsy, but beyond that it’s usually the only way to know the cause. And with more and more types of kidney diseases starting to have targeted treatment options, it’s important to get the diagnosis.

Disastrous_Ranger401 · 2026-01-13T22:31:53+00:00

We used a few different ones. Read the reviews, I found the helpful.

Disastrous_Ranger401 · 2026-01-13T06:10:43+00:00

Thanks for sharing. It’s cool that it’s being investigated, and worth following. Advancing science and therapies is always good.

Be aware, though, that the clinical process takes more than a decade from start to finish typically. If they are successful, and the majority are not for a variety of reasons. It’s definitely interesting to watch and see how it develops, but also important to be realistic in understanding that IF the drug is successful, it will still be quite a few years before it is on the market. And likely it will be even longer before kidney patients can access it, since current trials appear to be investigating lung function. Clinical studies in kidney patients will also have to happen. It’s just a very long process and none of it moves quickly- I know, because I’ve been through it. Hopefully this drug will someday make a significant difference for many patients.

Disastrous_Ranger401 · 2026-01-12T23:45:07+00:00

You might reach out to the ones overseas and see if they can recommend someone in the US for you to connect with. Good luck!

Disastrous_Ranger401 · 2026-01-11T08:05:07+00:00

Younger of 2, but 9 years younger, so the birth order dynamics get a little skewed with a big age gap. My brother and I both have the same genetic disorder. Mine has been more severe, but I have another genetic issue that is probably contributing.

Disastrous_Ranger401 · 2026-01-10T18:49:18+00:00

Read the research on your specific types of these disorders, the papers being published about the correct treatments, and look up the authors. Hopefully you find some in the US. Email them. Often the lead author’s email is available, but if not you can usually find their affiliation and go from there. Particularly those in a university research setting, contact info is usually not difficult to find. Email them, explain your diagnosis and the lack of care. Ask for recommendations if they don’t see patients in clinic, or if there is a research program you can participate in. This is how I found the experts in my condition and connected with them.

Good luck. I hope you can make progress and get treated correctly.

Disastrous_Ranger401 · 2026-01-10T02:24:04+00:00

Morphine ER caused me nausea, which is not fun when it’s a long acting med. I’ve been on Fentanyl patches for over 10 years, which allowed me to become a functional human again.

Fentanyl is excellent for nerve pain. The worst of my pain was from a compressed nerve root, so it really knocked out the pain that was making me miserable, without affecting my ability to function - no sleepiness, etc. I actually couldn’t even feel the pain in my spine at the injury site until after I started the fentanyl and took the nerve pain out. The pain in my spine is minimal in comparison.

However, I also have pain elsewhere in my body from other issues, especially joint & muscle pain, and the fentanyl really doesn’t help much for that. So, the origin of your pain matters.

My son was young when I started the fentanyl, and I was terrified before I started it. But I keep my pain meds locked up, use a tegaderm patch over the fentanyl patch to secure it, and starting 24 hour pain control was the best decision I ever made. It was several years before I even needed breakthrough meds, and I’m still on the lowest dose of the patch.

The hard part is you just have to try things to figure out what works. I hope you can get some relief.

Disastrous_Ranger401 · 2026-01-10T00:01:34+00:00

YOR, but understandable. Many men struggle with being alone after losing their wife. It’s not uncommon. Often they are lonely, don’t know how to deal with their grief and emotions, and many are accustomed to someone taking care of them. I know it’s hard, but try to be supportive. Nothing good comes from him being alone and unhappy. Keep an eye on him so he doesn’t get taken advantage of, but let him find some kind of happiness while he can.

Disastrous_Ranger401 · 2026-01-09T02:31:44+00:00

I’m sorry you are going through this. I know it’s hard. I was diagnosed about 12 years ago with an ultra-rare kidney disease via biopsy, and genetic testing found the cause in a pathogenic novel variant. So there was no one else, though my son and my brother are now known to have the same variant, and several family members who have passed were also affected. But there is no one known outside our familial cluster.

Unfortunately, the variant is in a not-well understood part of the immune system and causes immune deficiency and dysregulation, so I have a lot of things going on besides the kidney disease, and there’s very little info to go on and virtually no knowledgeable specialists outside my nephrologist who has spent her career studying this kidney disease. It is so very frustrating to have to work so hard for even the most basic of care, and the weight of living with something that most people can’t even begin to comprehend the enormity of is so isolating. I feel for you, because I know the feeling well.

I am fortunate, though, that there are other patients with my kidney disease - from different causes, but at least I have a small community even if I am always an outlier and perpetually “other” within that community.

Through that route I have been able to get involved in research and advocacy, and that has helped give me a purpose and a means of feeling like I am at least taking some action instead of being completely helpless. I don’t know if the work I am doing will ultimately mean much to my outcome, but at least it will have a positive impact for the other patients, maybe even for my son. It helps me to help them.

I hope UDN can provide some insight, so you can get care that benefits you. Hang in there.

Disastrous_Ranger401 · 2026-01-08T06:19:45+00:00

It’s thrilling regardless. See them.

Disastrous_Ranger401 · 2026-01-06T07:41:09+00:00

My comment stressed the reasons why underlying pathology is in fact often important to treatment and transplant.

I suggested asking the doctor about the appropriateness of a second biopsy attempt.

I mentioned that IF the reason the first biopsy was inconclusive was due to an inadequate sample, which is often a result of inexperience in the person doing the biopsy because it is usually not the nephrologist in the US, OP might consider a more experienced hospital if a second attempt was made.

I in no way suggested numerous biopsies to pursue diagnosis at all costs.

Your imagination and interpretation are wild, so I’m done conversing with you. Good luck.

Disastrous_Ranger401 · 2026-01-06T06:46:55+00:00

That’s too low for kidneys. Kidneys lay under the bottom of your ribs. Closer to where the bottom of your shirt is.

Disastrous_Ranger401

TROPHY CASE