Hey everyone I have IGAN.
Approximately 3 months ago I started the process of getting on the kidney transplant list. At the time I was referred for transplant by my nephrologist because my GFR was 16 and we both thought dialysis was looming. I started the process and went through all the testing required to be listed.
Early this week I heard from my transplant coordinator, I am now listed. The good thing since I started the process was that my GFR Is now 20. I am listed for a “preemptive kidney transplant” hoping that I will receive my transplant before I need to go through dialysis.
Has anyone ever been in a similar situation and if so did what was your outcome? At what point do you move forward with transplant?
I have been very luck so far. My kidney failure symptoms have improved. I just wonder how long this will last 😞. I want to be totally realistic, I know that with my disease process I will eventually go into End stage CKD.
Good morning. I didn't have to go through dialysis. I was very lucky. Make sure to tell the world you need a kidney. I was afraid, but don't just wait til you get the call. I put it in the paper, which I felt funny doing. Put it on social media. Whatever you have to do. My living donor came from Maine, and I live in NJ. She didn't even know me. I was told to put it out there, even though I was terrified. The more that people know this, hopefully someone kind will come along and help you. I wish you the best, and hope your symptoms still stay improved.
Thank you 0325 for your reply.
That’s what I’ve been told to do and yes I too feel terrified. I am not the type to share my personal life with everyone, especially people I don’t know. Very few people know that I have CKD beside my family. Only one of my colleagues knows about my diagnosis. I go to monthly meetings at my hospital for lectures on CKD and never stay for the support group afterwards. I just don’t know how to speak to others publicly about what I’m going through.
Thank you for your advice. I know that I will eventually have to muster the courage to tell my story.
I totally understand how terrifying it is. I am like you, not wanting the world to know my business. I am a shy person, and I think it would be hard to talk about publicly. I went online, so I didn't have to talk face to face to anyone. I hope you can get through this. I wish you the best.