Dr. check up 5-18-09

It's never good news to go there but thank god we love Dr. Russo and Mrs. Claus. It is truly a pleasure to talk to them even though the conversation is about some very negative things. Dr. Russo is blunt, he tells it like it is, no BS, and he thinks about all possibilities.

The nausea is not because of dialysis not doing what it should. All his levels and numbers look good, the only thing off is the phosphorus. Apparently Mrs. Claus told Bruce a week ago to start taking his binders (a pill of calcium that binds to the food you eat and reduces the phosphorus levels in the food). We have a big bottle of it from before he was on dialysis, but Bruce did not take it because he said it made him sick. He needs to only take it with a meal and it shouldn't do that. Other possibility is that the size of the kidneys is causing trouble with digestion of food. Dr. Russo said it's probably time to get them out.

He is going to consult with the surgeon here and decide if they take out one kidney or both. This process is going to be long and very hard on his body. He has to be cut all the way open because they are so large. Some people have smaller scars on lower back but that won't work. Right now his kidneys are still doing more than half the work, they just weren't getting rid of the toxins so he had to be on dialysis. Taking them out would mean he has to get everything from the dialysis which means more exchanges, more fluid, and feeling very bad for at least a month and even after that if they can't get the dialysis to work better.

There are lots of complications from the surgery.
• it's a "bloody" surgery and could possibly need a blood transfusion. This would push him out of the transplant list because it makes your antibodies high meaning you would likely reject a new organ. He would be pushed down list until the antibodies were lowered.
• Now he is on PD dialysis. He would need to go on Hemodialysis (through a port). Then when his abdomen healed, he would get another surgery to insert catheter again (just like surgery he had in December) so he could get back on the PD.
• There could be scar tissue which would not allow him to have another surgery to have a second PD catheter put in. Which means he gets a fistula put in his arm and goes on Hemodialysis. This is NOT the way the Dr. wants it to be because of Bruce's age he doesn't want him to have a fistula. It ruins the veins in your arm and chances are high that in his lifetime he will need those veins to have a second kidney transplant. A deceased donor kidney is not likely to last him the rest of his life, a live donor kidney might.

So where we are right now...bruce is waiting for a CT scan of the kidneys to see how big they are before the surgery. We plan on going to Lifelink with that CT scan and laying out all of these problems to them. There is no way to get them to change their mind on doing the surgery all at once, but they are not aware of his condition other than test results being sent to them every month. I want them to see how miserable he is and be aware that his case is unique. Just in case for some reason they call him for a transplant and his large kidneys are still in- don't want it to be in question at that point whether they take them out or not. I know every little thing counts, so maybe knowing his situation will get him called before someone else when a match comes up one day.

If Bruce could wait it out, and he gets the call, then they would be forced to do all the surgery at once....that is wishful thinking.

If a miracle happened and he had a live donor, they would do the surgery all at once, avoiding this whole nightmare.

i think that's it for the depressing news. more later.