4/13/09 - PD is Going Great!

Four nights completed on Peritoneal Dialysis and everything is going great - in fact, better than planned. It's been an adjustment for Alyssa, but both her mind and body have adjusted well to being in charge of her dialysis. Her blood pressure readings continue to drop, so today her nephrologist decreased one of her BP meds and plans to do the same with others if she continues this great turnaround. The biggest issue has been getting her to eat more protein, which is a critical element of successful PD. She was sick for so long that the thought of eating any kind of meat just doesn't appeal to her at all. She is now drinking protein shakes to help fill the void.

More good news - her blood labs have continued to improve with every draw, so much so that she will be going back to Rochester General Hospital tomorrow morning to have her PermCath catheter removed! This is a big step as the catheter had been used for both hemodialysis and plasmapheresis treatments. However, both her hematologist and nephrologist are confident that she will not need either of these treatments for the foreseeable future. The risk of infection is the number one concern for patients with catheters, so removing it has always been a priority of her doctors. The one drawback (pun intended) is that all of her blood draws have been through this catheter, so Alyssa will now have to be "poked" once a week for her labs. But removing the catheter will allow her to take a regular shower, eliminate the bandage that shows through all of her clothing and most importantly, she'll be able to swim when she goes to Florida on Thursday. Oceans and chlorinated pools are okay - rivers and lakes are not.

Not all with Project Alyssa is positive today. We've tried to never give up hope that her kidneys would recover, but one of the many lessons that we've learned from this ordeal is that you have to deal with the facts as they are and react accordingly with an aggressive plan of attack.

It's been over three months now since Alyssa went into renal failure. Recovery of kidney after three months is very rare, so today her nephrologist told her that she is now classified as being in End-Stage Renal Disease (ESRD) which is defined as when the kidneys permanently fail to work. She has already shown us a miracle or two with her recovery so far, so we'll never rule out another one, but we will be moving forward.

Never wanting to end on a low-note, the good news is that we will begin the transplant process as soon as we get back from Florida. This is often a long drawn out procedure, so the sooner we begin, the better! We know that Alyssa is "one in a million," but we're confident that there is a match out there for her!
dd