2 good days, 1 bad

Tuesday and Wednesday Bruce took the "phoslo" which is the medicine that is a binder to phosphorus to keep the levels down. he took it with each meal. He had NO nausea both days, then this morning he threw up when he got up before he ate anything. He came home at noon and had to sleep. He barely ate all day, just little bits at a time. So we are both clueless at what is causing the sickness. His stomach was make gurgling noises so loud you can hear across the room.

Baxter boxes are being moved from garage into the house this weekend because they cant be in excessive heat. fun. fun. Having moved so many times I should be used to boxes always in the house.


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.


What's been goin' on...

Lots going on: end of Beck's baseball season, working on yard/house, and dealing with constant health issues has kept me from being on computer much at night.

• Surgeon doesn't want to operate on hernia. Esp. if Bruce expects to have surgery to take out kidneys.

• Still no payments on anything from Medicare. It's like playing phone tag with 6 corporations. We will figure it out this week!

• Bruce still hasn't called Lifelink, but surgeon here said if he had a LIVE donor, the surgery would be planned out and maybe done at same time. But, Bruce doesn't so more than likely he will be getting the Nephrectomy and living with no kidneys at all until a matched deceased donor kidney is available.

• Bruce has been nauseous on and off for past 2 weeks. Some days it's very bad where he actually missed work. Usually if he throws up, it will start first thing in morning and it may get better or may continue all day. Toxins could be building up which means dialysis is not doing it's job. I tried to get him to eat ginger but he wouldn't, he tried Phenigrin but he still threw up and that makes him pass out all day.

• Bruce can't be in sunshine for long or he starts itching. Really the itching has increased to be more like it was before he started dialysis.

• The nurse has made some adjustments on the machine but nothing has helped.

I think these symptoms are all pointing to toxins and the dialysis is not doing as good as it should. He seems to have regressed. We have dr. visit tomorrow where they will review all tests and see what is going on.

The other topic will be "how/when/where" should he have the kidneys taken out?

Bruce's mental health is at it's worst now. Every turn seems to bring more problems and it has built up more lately.

We had baptism for Roan last weekend which was a really happy time, he needs more of those.