We made it through Christmas. Even though Bruce's health is up and down, he managed to see lots of family and eat halfway normal. I think the break did us good but today was back to medical mania! They sent him home from dialysis to do it all at home now. No warning. So we didn't have things set up or supplies we needed.
He managed one exchange alone and is getting ready to do another one right now. There's so much to do it seems like getting ready for surgery at this point. (he made me take this pic of him) He needs a chair (reclining), so I need someone to help carry ours from living room to bedroom. For now it's going to have to take place in living room. He really needs to be alone without 2 boys and a great dane running around.
Baxter is delivering a truckload of supplies on Monday. I guess that's nice of them but not looking forward to boxes taking over the house. I hate clutter.
Good news...he lost TEN pounds in less than a week! Just from the little dialysis they did 2 days last week in training. He doesn't feel it but there's tons more water to come off I'm sure. He's swollen all over. His diet can go back to eating proteins now but he still can't have much potassium or phosphates. >New Diet Info Link here<
AND other good news is that he is changing and cleaning the bandages himself although he acts like he's going to pass out while doing it.
So he will be doing this at home 4 times a day for weeks until they decide to train him on the machine that will let him do the dialysis while he sleeps.
Bruce did most of the process himself with a few mistakes but there are so many steps and precautions I can't even remember them all yet. The best part is he got 2 actual exchanges out of the training today so he got rid of lots of fluid and hopefully some toxins but the bad news is they will build up again in a day or so.
The next training is on Monday after Christmas. The nurse is going to start him "unofficially" on Tuesday (because of insurance he shouldn't start until January). I don't know if that means we move this whole process home at that point or what.
This is all manual exchanges- kind of like an I.V. In about 6 weeks they will train us on a machine that will do this for him while he sleeps. That will be SO much less work.
Bruce was supposed to wash catheter site and re-bandage it but has yet to accomplish that. He gets faint and thinks he's going to pass out. He still hasn't even looked at it. The nurse is scolding him. There are so many ways to get infections with the catheter so he has to get over the fear.
Maybe the little bit of dialysis today will make christmas better... looking forward to next week though.
Went to the Kidney Institute today for first dialysis training. The nurse did one exchange in about 2 hours and it removed a little fluid. Tomorrow we go again and Bruce will need to practice it on a "dummy" apron/jacket thing. It seemed like there's about 50 steps but I know after awhile it will be routine. He refused to even look at most of it. He was shaking all over and about to pass out. But the nurse kept telling him he has to learn.
This is just training...the real dialysis would start next week after 2 more trainings, but we are holding off until Jan. 2 for the official one because of insurance. We are going to have to pay $5000.00 deductible this year for surgery and another next year for the dialysis. Apparently dialysis costs thousands of dollars a month.
Once he gets going on it, he should feel better. I was hoping for Christmas, but maybe a few more weeks!
Here are the comments he has received on the size of his kidneys:
• "That just might be a record for my career"- transplant surgeon. • " I can't even see them on the ultrasound because they are too big, never seen any that size!"- ultrasound tech. • "I am curious to see what they weigh, I have never seen any that big" - dialysis nurse. • "They are at least as big as footballs" - surgeon.
On December 4th, Bruce had surgery to put catheter in for Peritoneal Dialysis. The doctor moved the surgery up one week because he said he was going to end up in the ER if he didn't get on dialysis. His function is still good enough to not need it - about 15% but the toxins are taking over his body fast and he gained 17lbs of water weight.
This was an outpatient surgery done at hospital - it was only a 30 minute surgery but we were at hospital from 10- 5:30. The bill from hospital was $17,000.00. That does not include the surgeon's bill. OUTRAGEOUS! He had a lot of pain afterward and swore pain pills were not working. The next day he was a lot better, and within 4 days he was back to normal and working again.
Once the surgery site is healed he will start dialysis training.
His doctor believes that Peritoneal Dialysis is best for him since he is young and needs to save his veins in his arm in case he needs it later. This type of dialysis can be done manually by him at home 4 times a day and eventually on a machine at night only. So it gives him more freedom also.
There were no complications from surgery except some blisters and redness where the laproscopy went in. He can not get the access site wet, so bathing and washing hair was a challenge. It's hard for him to bend over and he can't lift anything over 30 lbs.
This is email I sent out to people who wanted to know about Bruce's latest health: dated on Aug. 11, 2008.
Bruce wakes up nauseous and has sometimes thrown up is because of the toxins building up in his system. That's apparently normal. He is going to go forward with getting the surgeon to put in the catheter for the Peritoneal Dialysis. The Dr. thinks he needs to be ready because Bruce has all of a sudden started to feel bad (the nausea, not able to eat much, always tired, etc). So within a month he will see the surgeon to set that up. That means he will probably be on dialysis within a few months.
Once on dialysis, he could start to feel better if it works well enough, but they may decide to take his kidneys out during that time. That would mean a month of healing after that surgery which is harder to recover from than a transplant. Then he would be on dialysis with no kidneys at all until a deceased donor kidney became available. The doctor said that is like falling off a cliff because he will feel so bad quickly.
If he had a live donor, this could be planned out where he never needed the dialysis and could get the kidneys out too, but since he doesn’t have one, he will more than likely be waiting for a year and a half.
He is supposed to go on a very strict LOW protein diet. Whatever protein he eats in a day should fit in his hand. So one turkey sandwich would be all the protein he could have for the whole day. This is just to prolong the kidney health as much as possible.
About a year ago his para-thyroid function started dropping. That is because the kidneys are not getting rid of phosphorus and his body is in turn robbed of calcium, which is why he broke his foot and it never healed. So, that is getting worse not better, despite the new vitamins prescribed last time. So now he is supposed to avoid phosphorus. AND if that wasn't enough, potassium is bad for failing kidneys too so that rules out LOTS of food and drinks.
He is also becoming anemic.
The only thing good we came away with today was the fact that he is young and NOT on Medicare- means he will get more priority on the transplant list. He said transplant center won’t tell you that but it’s the sad truth since Medicare wont pay very much for the transplant.
thanks for all your thoughts and prayers.
AND If anyone has any ideas on food I can make please let me know!! Other than spaghetti, I am clueless what we are going to eat.
My husband Bruce has PKD. He just turned 40. He was on high blood pressure medicine since he was about 18. He got an ultrasound every year and always had a Dr. check his kidney functions. Everything was fine until about 2 years ago. Bruce's function started to decline, then other symptoms crept up. Some doctors did not attribute those things to kidney failure but now know better.
His mother's father died of the disease in his 40s. His mother and 2 of her sisters have PKD. One of them had a successful transplant from a living donor (her son). The other 2 have no signs of failure. His brother who is only few years younger than him has PKD. His kidneys are failing and is only months behind him in this process. A cousin was recently diagnosed with the disease also.
Polycystic Kidney Disease affects 1 in 500 people, including newborns, children and adults regardless of sex, age, race or ethnic origin.
My husband has polycystic kidney disease (PKD), diagnosed at age 17. He just turned 40. Five other close relatives also have PKD. We have two boys-ages 8 and 3.
Currently he is on transplant list and starting dialysis.
I hope in writing this I can help someone going through this same scary process. I could not find much information about it and there is SO much to learn and deal with!