Friday, December 3, 2010

Odds & Ends

One of the challenges of writing a blog dealing with health issues is providing the readers with pertinent, interesting and timely information. That's easy to accomplish during crises and before and just after surgeries/procedures when news & changes come fast and furious. Fortunately for Lyssa, the news has been mostly positive over the past month. We could never have dreamed that she would come this far this fast. However, each day brings a set of ups and downs that are inherent with a transplant patient; especially one dealing with a-HUS. As we have shared many times, Alyssa is only the second a-HUS patient in the USA and fourth in the world to undergo a kidney transplant with the drug Soliris. A procedure that had only a 10% chance of success prior to the development of Soliris. So the bottom line is that no one really knows what to expect, which means that every little change in her readings or even how she feels, bring heart stopping moments to us all. I wrote to a friend the other day and described our daily routine as that of walking along the edge of a cliff - we love the view, but always worry that we could stumble at any time. Telling you about each of these crises would drive both you and us nuts, so we try to keep these updates at the 50,000 foot level, but will always provide you with any significant changes.

Lab updates - Results from 12/2 were good, with only a few tweaks needed to her pill regimen.

Prednisone has really been taking a toll on her. She has swollen/puffy ankles, legs and especially in her face. The plan is to gradually lower her doses over the next few months.

Beginning next week, Lyss's Soliris treatments will be moved back to Rochester General Hospital under Dr. Kouides.

Lyss and family had a great time at the Steelers/Bills football game last weekend as guests of Greg Connors. Not only was he a great host, but the game turned out to be one of the best played in Buffalo in a long time! Thanks to Greg and The National Kidney Foundation of Upstate NY.


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