Kidney Institute hosted LifeLink seminar

Bruce went to this today. An RN from LifeLink was there to explain transplant process and answer questions. Most of it Bruce already knew from the hours we spent at Lifelink last year. The only thing that was a concern is the RN said that they have "never" taken out the polycystic kidneys at the same time as the transplant. So Bruce is going to have to try to push harder for more info. This has been an ongoing conversation between him and his nephrologist, Dr. Russo. He said that they tell you they won't do it or don't want to do it, but that they do actually do it. It is up to the surgeon at the time. We asked if we should be visiting the LifeLink surgeon again to discuss but Bruce's RN at LifeLink said we didn't have to. It's very frustrating to not have an answer. If a kidney became available and they wouldn't take the old ones out, it would be TERRIBLE. So we need to do something.

Bruce has appt. this Friday with surgeon in Fort Myers who did his catheter to see if he needs the surgery to fix the hernia. We can ask his opinion, but he is not the surgeon who will be doing the transplant because Bruce is having it done in Tampa at LifeLink. He told us when he put the catheter in that Bruce's kidneys needed to come out because there is no room.

I will post update after the visit on Friday. I really hope he doesn't have to go through another surgery for the hernia. We wanted to try to get out of the house and go to Disney this month but don't think that will happen if he needs surgery.

Recommend PD machine

The freedom of only having dialysis at night is a miracle. I can't imagine the poor souls that go to hemodialysis 3 or 4 times a week and get stuck my a big needle and sit for 4 hours - then leave in bad shape sometimes. Our country is the only one that pushes for hemodialysis instead of PD (peritonieal dialysis). Doctors need to be more informed and need to present the options better to kidney patients. Bruce only got lucky by getting mad at the care of one doctor and switched to the only other nephrologist on our insurance list- who just happens to be the best nephrologist you could ask for. He knows all current research and tries for the not so common approach sometimes. He tells us the honest truth about the whole process.

Bruce has had much improvement overall in the past week. Here are some pics of the boxes of fluid and the cartridges that go into the machine every night.

dr visit -april 14

All blood tests are good. Machine seems to be doing better job than manual dialysis.

I think with some more time, he will start to feel even better. The freedom of not having to do dialysis 4 times a day has been a major improvement in his life. He hates the machine of course but he feels better most of the time. If he were not dealing with enormous kidneys, he would probably feel completely normal. They continue to grow and cause him so much discomfort.

The machine has an alarm that goes off if something is wrong and I am the only one who hears it. That concerns me a bit. But usually it clears itself and it's because Bruce was laying on the tube crimping it. I also told the nurse that the tube flops all over in the shower and she said we needed to tape it down so it stays going directly into drain.

The hernia needs to be looked at by surgeon and Dr. says he needs to put some "mesh" in there to keep it from being pushed out from pressure of the fluid from dialysis. The typical solution is to "rest the belly" by putting him on Hemodialysis for awhile but Diane knows Bruce well enough to realize that he absolutely cannot handle hemodialysis.

The Dr. talked a lot about the transplant list and how it's determined who gets a kidney. Some say it's a national thing but the reality is that much more go locally because of the time constraints. And it depends on the area in which you live. He is lucky because the national average wait is 7 years and here it is around 2. I'm hoping for 1.5 which would be around December. But tomorrow would work too!

4 days on machine

Bruce is a tad bit better. He calls in daily and gives nurse the results from the machine which tells them how it's working. One night the alarm went off because he kinked up the line somehow.

Nurse Diane (Mrs. Claus) says that it is working very well. She has made adjustments to it everyday by phone with Bruce trying to get it just right for him. Tomorrow will be the first day that he wakes up and has no fluid in him. She thought he needed it but the machine is doing better than expected so no dialysis will be going on during the day now. This could make a difference in the bloating I suppose but he is still swollen and retaining water. The main discomfort comes from the size of the kidneys pushing on everything. And he still has no energy.

Read the medicare book and found out that social worker was WRONG. We should be getting medicare payments on the dialysis immediately. I get to spend some more hours working this out on the phone.

NEW PROBLEM: Bruce will probably have a surgery for a hernia that appeared a month after catheter surgery. I thought it was from lifting when he shouldn't but now he remembers falling at a job site and thinks that did it. They are going to look at it again then send him on to the surgeon to see if it can be done without harming the catheter. It's always something.