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.


  1. Have you thought of asking your church to put a request in the bulleten for a donor who may be in your paish & willing to donate? Just a thought.

  2. According to the midicare booklet, Part B should only cost $100 per year. Then they pay 80% while your private insurance should pick up the other 20%. If you haven't done this already, see pgs. 23 - 28 in the medicare booklet for dialysis & transplants. Keep in mind, the gov. is not usually efficient with anything they manage. Maybe this will help.

  3. I have read that exact clause to 3 different people. Now the blame is put on our primary insurance- United Health Care. According to Medicare they have not received any bills to pay. So that's the next phone call.

  4. Amy, check to see if they still have health care advocates to guide you through the medicare morass. I did all the billing for our clinic and there is no rhyme or reason to which bills get paid and others that get sent back for whatever. It is a "game" in some respects as the longer they can delay payment the more they can hold onto whatever interest they are collecting on what capital they haven't paid out. Advocates are not just for the elderly. If all else fails try to get the message out in your church/community to see if a medicare or insurance company retiree has the knowledge, ability and willingness to intercede for you.I understand you are due for some media attention soon, don't hesitate to mention this issue and ask for help.

  5. Me again, sorry but have been going back and reading old posts so come up with different thoughts accordingly. First, suggest if needing phenergan for nausea, try the suppository. If too drowsy, break it in half and see how that works. If you are already vomiting, taking it orally won't give it time to work before you throw it up. Same holds true for other meds he may be taking. Some are available in suppository form, others not. If he can get the nausea under control perhaps he can begin to eat a little better. I recognize the importance of diet in this disease, but common sense dictates that if he is unable to eat anything at all, then whatever seems palatable to him and whatever he can keep down is preferable to nothing at all. Not eating causes its own set of problems. Try anything that sounds good to Bruce until he can regain some appetite.