Reflecting, Looking Forward

[Grace]

Five years ago today, I received a kidney transplant. It was an emotionally intense time that brought joy and unimaginable vitality. I was freer than I had ever thought possible upon commencing dialysis almost five years previously. The open doors beckoned, doors that seemed to slam shut when my own bogey of aHUS returned two years later.

I have many fond memories of the young woman I was, but I don't miss her. I have weathered the storm and found refuge within myself. If my external opportunities are more constrained, I am learning to grow into a fuller, more embracing life. I am blessed with the support of so many friends, and doctors and nurses who listen and do their best. I feel better now than I have since I lost that beautiful kidney. Whatever tomorrow may bring, life is good right now.

There is no doubt that atypical hemolytic uremic syndrome (and its relations) is a devastating disease, and the dark days can seem endless. But there is hope now, a light at the end of the tunnel growing brighter. This forum allows us to share the burden of the worry and grief we carry, and brightens our days with the good news and camaraderie we also share.

On the medical front, we bear witness on this forum to impressive remissions with Soliris/eculizumab. There are now a baker's dozen articles published on Soliris and aHUS, most recently a high profile case report on prophylactic use after transplantation. The word is getting out. With the onset of clinical trials (assuming positive results), the drug will hopefully become more accessible. Replacement CFH may be available within the next few years.

The impressive fundraising efforts of this foundation suggest that tomorrow may be even better. Hopefully one day soon aHUS patients can keep their kidneys (native and otherwise) and lead long, healthy and fulfilled lives.

[Melissa Hearn]

You are a beautiful writer! Thank you so much for sharing these thoughtful, well put together words. Your outlook is so positive and uplifiting. Thank you Thank you Thank you!!!!

[Svetlana Finley]

Thank you so much!!!

[Linda Burke]

Hope springs eternal, but when backed by solid research and practice it shimmers softly and beckons us into a brighter future. I appreciate your positive outlook, your uplifting words, and your thoughtful participation here that benefits us all !

[Cheryl Biermann]

Grace, well put and moving, thank you for your thoughts and inspiration.