Day 1 on Night Cycler Machine

Bruce was scared to death to do it. Even though he had been trained and done it 3 times already, Mrs. Claus was always there and doing anything new terrifies him. So he worried about it for hours and drove us crazy then I gave him a Klonopin and he hooked it up and he said that by the time he knew it was working, he was like "night night"... He slept all night, no problems. We were told it was loud but it is not at all, there is barely any noise.

There is a tube running into the bathroom shower and Luna got very curious about it because she could see it move. She didn't know whether to bite it or bark or what. She finally decided it wasn't important and left.

Bruce felt great this morning because he wasn't so bloated. Mrs. Claus called to check in and it turns out his blood pressure is low again. Could be because the machine is working better than what he was doing manually and he doesn't need to take blood pressure lowering medicine. One could only hope! But they will monitor him all week and adjust. She already told him to change to a lower size bag.

I hope this is the beginning of some improvement. please!

THE CYCLER IS HERE

Mrs. Claus came over and helped Bruce set up the nighttime machine. It is about the size of a large copier but it fits on his nightstand. There is another TV tray stand next to it to hold a bag of fluid. There are about 10 tubes coming out of it and going in all kinds of directions. One of them runs to the bathroom shower. It is all digital and if something goes wrong in middle of night it sounds an alarm.....can't wait for that to happen*!

Mrs. Claus said once again that this will make such a big difference but I am not getting my hopes up. The machine itself costs about $18,000.00 and there are more supplies that go with it than manual dialysis. He throws away so many tubes each time he uses it. I don't even want to know what it all costs. Our maximum out of pocket per person is supposed to be $5000 per year but it seems they always find a way to make it more. Our insurance went up again this month also.

Bruce's mom is looking into fundraising options and has found a place that organizes all of it and puts it into an account to pay medical bills which also makes it tax deductible. There is a lot of paperwork that Bruce has to fill out. I will update on that once I have the time to figure it all out.

Sodium up and down

Bruce took a new diuretic to reduce the fluid retention and it made his blood pressure plummet for 2 days. He went to his second day of training on nighttime machine at the kidney center and was unable to do it because he almost passed out and couldn't stand. They gave him bag of potato chips and he seemed better so he came home and stayed in bed all day. The next day was up and down. He finally got back to normal on Sunday and started back on his regular blood pressure medicine.

It's all just wacky when a week before he was way high in sodium and his blood pressure was through the roof- then its the opposite. Such little things can make drastic changes.

He's still feeling uncomfortable, tired, weak, and has to lay down. He only missed a little work last week but other than work and going to church, he can't do much of anything.

He DID start the weed eater and trimmed one area of our yard so our house doesn't look like it was abandoned. But then he had to take a nap after that. I got my parents weed eater which is much more manageable for me so I should be able to use that better than his over-priced top of the line industrial strength gas one.

Medicare

We paid our first payment and found out that it is 36 months (or something like that... essentially a long time) before it kicks in as primary insurance and pays for things. Until then it pays nothing. I don't know about the RX part because that is separate. But we got a letter stating that we may not be eligible because we make too much money.

His drugs individually are not that much, it just adds up when he's taking about 10-12 of them. And sometimes he takes one and it doesnt work so he goes off of it and tries another, sometimes the doses are different, etc. So it is hard to do much about getting the costs lowered at this point. I know we can contact the maker of the drugs but right now we don't know what he's going to stay on or off. Once the dialysis works better, he will be off of some of them.

dr. visit

We saw Nephrologist on March 17th. All blood test levels were good, very good he said. But Bruce gained tons of water weight and was miserable. They told him to watch sodium content in food more and to do 2 bags a day of the higher solution. Which means 3 liters of liquid floating around in his body all day instead of 2. This was supposed to get the excess water out of his system better. They gave him a new diuretic also.

Dr. Russo and the nurse (I forget her name because Bruce has nicknamed her Mrs. Claus because he thinks she looks and acts like her) said that he needed to get on the nighttime machine and he would do much better. They planned for the training on that and switched the orders from Baxter for machine bags.

Basically they thought he was doing well until we told him that he was feeling worse. He had one good month in Feb but all of March has been very bad.

bad luck

I spent over a month with no post and things were good. My last posting was about how much better Bruce felt and blah blah. So here we are again back to no energy, extremely tired days, feeling like he's getting flu, etc. It's been going on for almost a week. I don't have a clue what could be causing the regress but it's frustrating. He goes to Kidney Institute Thursday for a day of testing to get him ready for night time cycle machine. So I hope that means he gets it soon and it helps. I know that the nurses have to train him for days and then come to our house and set it all up. So we are not looking at getting it immediately. He may need to talk to nurse on Monday about what could be wrong.

Catching up

I've been slacking on posts, but it's good that nothing too "big" of importance has happened I suppose. We have both been super busy with work and children. I see I haven't posted since Jan. 31, since then Bruce has gotten MUCH better. He has had more energy than before, able to work a lot more and he can eat mostly whatever he wants to now. Making sure he gets enough potassium and protein is the only concern.

Last Dr. visit was Feb. 17th. The Dr. said his labs looked great. Meaning the dialysis is doing the job getting rid of the toxins. Only issue was that he had a hernia that is bulging out a little. It is at one of the surgery sites where the Laparoscopy was used to insert catheter. It is not at the actual catheter site. It is not major issue but if it doesn't go down, they will have to do a surgery to put some patch there inside the skin. This could have happened from lifting things. He is not supposed to lift over 30lbs and I know he picked up Roan on occasions, so he has stopped that. (which of course means I do it even more now, killing my back)

One more issue was that he started retaining water again. The nurse told him to use a stronger bag (of the solution) at night and it should get rid of it. I don't think it's working so great.

He still is not living a "normal" life by any means, but he is not sick all the time. The night time cycle machine is supposed to make him feel much better but Medicare and United Health Care both screwed up and he was waiting to get it all settled before starting the machine because it is thousands of dollars. Medicare will not kick in until 6 months, for now it is secondary insurance to pick up extra costs. We will pay $300 a month for it. It is all very confusing. Luckily the Dr. office/kidney institute is making all the calls to get things settled.

The past 2 nights Bruce has gotten VERY tired again. The nurse gives him shots to help battle the anemia, so he is going to try to get one tomorrow if it is time for one? He is taking Iron and I bought a new brand, so maybe its not as good? who knows?