New to the CKD Community

[vhoffm01]

So much has happened since March.

I had been battling an undefined autoimmune disease for almost 9 years. Finally, on March 6, 2019 I was able to find a specialist that knew what I was suffering from (anca positive vasculitis). I was also told on this day that my BP was very elevated. Blood tests also showed that my GFR was at 53, my creatinine level was 1.28, and I had protein in my urine. It was a total shock being told I had Stage 3A CKD. The next day I was admitted to the hospital in order to lower my BP so they could do a kidney biopsy. The biopsy revealed little damage to my kidneys.

Since then my GFR has fluctuated from 50-60. My tests from 3 days ago revealed that my GFR is at 58, creatinine is at 1.12, and my urine was negative for protein. I also set up an appointment to see a nutritionist for tips on a kidney friendly eating plan, as well as ways to help lower my BP.

My nephrologists don't seem to be too concerned with my numbers at this point in time. They are more concerned with lowering my BP and monitoring my levels.

My main concern at this point in time is the fact that my boyfriend and I would like to start trying to conceive our first child within the next year. I am 28 and he is 35. Our primary focus used to be having all of our financial and career goals achieved beforehand. Now we find ourselves more concerned about my health allowing us to start trying.

I spoke with my nephrologists about my desire to start family planning and was advised (rather rudely) that I should not even be thinking about this until I've had 2 years of treatment. My main concern is the fact that my kidney function could drop significantly in 2 years... there's no real way of knowing. So we could wait and then be in a worse boat than we are in now.

I guess my main goal in posting this is hearing stories from others that were diagnosed with CKD before having children. What were your results? Did pregnancy have a large impact on your kidney function? What were your doctor's suggestions?

Thank you in advance for any replies.

[Wizzi]

Hi my son has vasculitis, a serius illness that could involve all organs. There's no cure for autoimmune vasculitis but only treatments to put it in remission. The ckd is only a conseguence. I advice you to ask for more information relative your illness and the way it's affecting your body. Ckd is a bad conplications but you are lucky because you are at 50% before starting treatments. Best luck

[vhoffm01 in reply to Wizzi]

Thank you for your reply, Wizzi

Vasculitis is a very serious autoimmune disease. My specialists have made me very aware that it is not a curable disease, but rather one that we can manage with treatments. My treatment plan was very aggressive after my diagnosis. I recieved 4 infusions of Rituxan (the standard is 2) and have treatments scheduled for every 6 months. My response to treatment has been very positive. In fact, I recieved news today that my anca was negative on this last blood test.

How long ago was your son diagnosed? How have his doctors decided to treat him?

[Wizzi in reply to vhoffm01]

My son is only 14 years old and he was dx in march 2017. Doctors gave him ciclophosfamide and cortison. He had a very bad year for the conseguences of the aggressive therapy but he went soon in remission . Now he takes myfortic and few cortison daily. He feels good but his kidneys are affected and his gfr is 50 % . Cortison left him same problems. I think rituximan is better but in 2017 the protocol in Italy was that . He still has protein in urine and he makes a lot of controls. But he lives a normal life now. More tired sometimes but good. And you with ritiximab? And how was your gfr before rituximab?

[vhoffm01 in reply to Wizzi]

I also have troubles with always feeling tired.

Before Rituxan my GFR was between 50 and 53...so not too much of a change. That being said, I did feel significantly better after my first treatments.