I'm Steve Weber. My family and I are sharing the real story of living with kidney disease, from lab results and treatment changes to the hope and uncertainty that come with planning for the future.
Our focus right now is on preserving the kidney function I have, understanding the treatment options available, and preparing thoughtfully for whatever comes next. There's no clear transplant timeline, so this space is about sharing the journey as it unfolds.
My nephrologist wants to do another kidney biopsy. I haven't had one since I was 12 years old, so this would be my first in more than three decades.
The biopsy could help show how much of the damage is scarring, which is permanent, versus inflammation that may still be treatable. It could also help us determine whether certain medications I'm taking now are likely to be beneficial.
We're trying to learn as much as possible about how to preserve the kidney function I still have.
My latest eGFR came back at 25 on October 30. The previous reading was 24 while I was fighting a cold, and I've noticed that illness can affect my numbers.
My readings have been fluctuating in the mid-20s. Even at 25, I'm still in the stage 4 chronic kidney disease range, so treatment and monitoring remain a big focus.
I'm not on dialysis, and there isn't a set timeline for a transplant. For now, we're focused on preserving kidney function and staying informed about what may come next.
We spent about four hours at Rush meeting with the transplant team, including the transplant surgeon, dietitian, pharmacist, financial aid team, and living donor coordinator.
We're going to begin the transplant evaluation process, but the team explained that I won't become active on the transplant list until my eGFR drops below 20. There's no clear timeline for when that may happen.
They stressed that a living donor would be our preferred path if I need a transplant and that finding one will be up to us when the time comes. That's a lot to process, especially without knowing when we might need to act. For now, we're learning, preparing, and trusting the team to guide us.
Explore one topic at a time. These visual guides explain the basics, the condition I've lived with, and what we're doing about it.
Most people are born with two kidneys. They quietly filter blood around the clock, removing waste and extra fluid while keeping the body's chemistry balanced.
And here's an important fact: many healthy people can live full lives with just one kidney. That's what makes living kidney donation possible for carefully screened donors.
Remove waste products and extra fluid through urine.
Help regulate water, salts and minerals.
Work with hormones and the circulation to manage blood pressure.
Help control red blood cell production and support bone health.
Kidney health basics: NIDDK. Living donation is a major medical decision that requires individual assessment.
IgA nephropathy, sometimes called IgAN or Berger's disease, is a chronic condition in which immune-related material builds up in the tiny filters inside the kidneys. That can lead to inflammation, scarring and gradual loss of filtering ability.
I've lived with it for 33 years. Modern treatment aims to address the disease process while protecting the kidney function I still have.
Simplified disease overview based on KDIGO 2025 IgAN guidance.
My nephrologist says she's not ready to give up on my kidneys yet, and neither am I. We're using a multi-targeted approach: addressing the IgA disease process while protecting the kidney tissue and function I still have.
The goal isn't to promise a cure. It's to slow progression, reduce protein leakage, protect blood pressure and metabolic health, and keep monitoring how things are going.
Targets APRIL, a protein involved in producing disease-related IgA. Approved to reduce protein in urine in adults with primary IgAN at risk of progression.
Blocks endothelin-A receptors to help reduce excess protein leaking into urine. Approved for certain adults with primary IgAN at risk of rapid progression.
Amlodipine relaxes blood vessels. Benazepril blocks the renin-angiotensin system, lowering blood pressure and helping reduce protein leakage.
An SGLT2 inhibitor that changes how kidneys handle glucose and sodium. It can help lower the risk of kidney disease progression in appropriate patients.
Helps manage blood sugar and metabolic health. Its role here is supportive rather than a direct treatment for IgA nephropathy.
Helps correct excess acidity in the blood that can occur when kidneys cannot balance acid and base effectively.
These are the medicines I've shared as part of my treatment plan. Descriptions explain their general roles, not individual treatment advice. Long-term kidney benefit is not yet established for every recently approved IgAN medicine. KDIGO · Voyxact FDA · Vanrafia FDA
eGFR is an estimate of how well my kidneys filter waste. It isn't a percentage of function. On October 30, 2026, my most recent reported eGFR was 25.
That is within the stage 4 chronic kidney disease range. My results fluctuate, and we're using this longer-term trend to guide conversations about treatment and preparation.
I'm not on dialysis, and I don't have a scheduled transplant date.
Stage 4 CKD range
Context: The prior result of 24 was measured while I had a cold. My care team is monitoring the overall pattern rather than one isolated result.
Read more about eGFR and transplant wait-list policy.
Learning about donation doesn't mean committing to anything. Here's what you might want to know before contacting Rush.
Rush provides an independent living donor advocate to protect your rights and help you decide whether donation is right for you. Your questions and choices are your own. Rush donor program ↗
We do not know yet. I am going through transplant evaluation, but there is no set date for when a transplant may be needed. That depends on how my kidney disease progresses and on the transplant team’s guidance. We are talking about living donation early because education, donor evaluation, and matching can take time, and we want people to have space to consider it without pressure.
No charge for donor evaluation or donation surgery. Steve's insurance covers those medical costs through Rush. Nonmedical expenses such as travel, childcare, and time away from work may still arise; Rush can explain assistance programs.
No. Contacting Rush lets you ask questions and learn about the process. It does not mean you are agreeing to surgery or promising to move forward. Even after beginning evaluation, you can stop at any time, for any reason.
Rush protects donor confidentiality. You are not expected to tell Steve or his family whether you inquire or test. You can share that information yourself if you wish.
Rush provides an independent living donor advocate who focuses on your interests, helps you understand the risks and your rights, and supports your decision-making. Their role is to protect you, not to persuade you to donate. Learn about Rush's donor process ↗
Yes. You don't need to be a relative or even personally know Steve to ask about living kidney donation. Rush can determine whether you may be medically eligible and compatible.
Not necessarily. People outside the Chicago area can contact Rush to ask about donation. Travel may be required for testing and surgery, and some screening may be arranged closer to home when appropriate. Rush can explain logistics, eligibility, and possible travel assistance based on your situation.
You can still inquire. The transplant team can arrange blood typing as part of the process if appropriate.
You may still have options. Rush participates in paired kidney exchanges that can help incompatible donor-recipient pairs. Rush will assess compatibility and possible alternatives.
Most carefully screened living donors lead normal, healthy lives with one kidney. Donation is still major surgery, with short- and long-term risks. Rush evaluates those risks individually and recommends lifelong health follow-up.
Most living kidney donors are discharged from the hospital the day after surgery. Recovery varies by individual, and some donors may need a longer hospital stay. Many donors return to light daily activities within weeks, but full recovery and lifting restrictions can take longer. The transplant team can explain a realistic timeline for your work and lifestyle.
Rush generally requires potential living donors to be over 18, in good physical and emotional health, and willing to complete an evaluation. The medical team determines individual eligibility.
Not matching directly does not necessarily end the conversation. In paired exchange, you may donate to another recipient while Steve receives a compatible kidney from another donor.
Read the National Kidney Foundation's donor risk guide and ask Rush for an individualized risk discussion with the independent living donor advocate.
You don't need to decide today. Rush can explain the process and answer questions confidentially.
There are many meaningful ways to encourage our family, with no pressure to consider donation.
Your prayers for wisdom, steady health, and the right next steps mean so much.
Follow our updatesPass our story along to someone who might like to follow our family.
Share steveskidney.comExplore accessible information about kidney health, IgA nephropathy, and treatment.
View the visual guidesCurious about living kidney donation? Rush can answer questions privately, without commitment.
Find official resourcesAll donor inquiries, testing, and medical decisions are handled by Rush Living Kidney Donor Transplant Services, not by our family.
When contacting Rush, please identify Steve Weber as the intended recipient. The interest form may ask for contact and preliminary health information; Rush's independent donor team determines the appropriate next steps. You do not need to tell our family that you inquired or are undergoing testing.
Open Rush's donor form ↗Call (312) 947-4438
or (312) 947-GIFT
Rush's official website: Living Kidney Donor Transplant Services ↗
"We ask for your prayers as we take this journey one step at a time, trusting God for wisdom, strength and whatever comes next."
You do not have to consider living donation to walk alongside us. Following the updates, praying, or sharing this journal means more than you know.
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