We saw Dr. Burtch today. He said at this time period it is the most swollen the body will be after the surgery. He felt all around his abdomen and verified that he was indeed quite swollen. I knew that it happened a few days after surgery, there was an obvious change, but it was hard to know what was fluid from no kidneys or what. He said there is no way he would go in now and try to do surgery for PD catheter. The tissues are all connecting together and he needs more time to heal and swelling be reduced. Bruce will go back in 6 weeks and we will see what he thinks at that time. Bruce asked if his temporary port for hemodialysis would last that long and he said "we hope". This is not at all the news we want to hear. Bruce is most upset because fall ball starts soon and he will have to miss games because his dialysis time is at night. He can go in early if they call him, but there is never a guarantee. And if he does the surgery too soon, he could get in and see that it is not going to work. He is an awesome surgeon, we both understand this is best, but it's still a little disappointing. So we wait...
Bruce went back to work this week and sold 2 jobs. WOO HOO (Bruce hates that saying. He thinks everyone is facebook all day saying woo hoo this and woo hoo that) He is much happier working than moping around here all day. His appetite and energy level has improved. He has to take binders with his meals to keep phosphorus from being too high and if he forgets, then he feels sick. I have come up with some meal solutions that I can make for dinner and for him to take lunch all week. I can't say that I got much help in this area. I pretty much had to figure it out on my own. The recipes they gave us were strange or required too much work for everyday meals. I used to cook ONE thing and we all ate it, so I really don't like to be put in the short order cook situation.
He still isn't sleeping! The Ambien worked once, then it didn't work at all. Dr. Russo said to increase the dose last night to 10mg and it worked but I don't think it is going to continue. I have determined that he has restless leg syndrome. I thought that was some wacky made up disease until I've seen it in action. It was there before the surgery for a month or more but now it is out of control. The other night when Ambien worked, he was sound asleep and his legs were still moving like a dog having a dream. I read it can be caused by lack of iron which he is certainly lacking. That was caused by the loss of blood and we know his hemoglobin is low. He needs to tell Dr. Russo but he hasn't yet. A couple more nights of not sleeping and maybe he will call about it. I don't know that is the only reason for no sleep but it is a problem for him. He says that it's just a weird uncomfortable feeling that makes him have to move them.
Bruce's brother Sean now has a confirmed donor and a transplant date of Dec. 29th. They will take his kidneys out sometime in October. He will be in the same boat as Bruce is right now, living with a temporary port and going to hemodialysis 3 times a week until the transplant. We are happy this is all working out for him, but know how scary it's going to be to do all of this at once. I feel terrible for Sean but relieved that he has a donor ready to go.
I did think to myself when Dr. Burtch said it would be a few more months that maybe LifeLink would call with a kidney before then! He gets put back on the List tomorrow....WOO HOO:)
Easter Everyday
8 years ago
Posts
Restless leg syndrome is very real. I think it is more common with older women due to post menopause. I have it from time to time, & it is exactly like Bruce says. Your legs want to flex continually & you have no control over them. I usually have for at least 2 hours & then it seems to die down & I fall asleep. My heart goes out to him as he works through all of these adjustments. Love, Mom
ReplyDeleteIt is difficult to say exactly what the cause of Bruce's restless leg problem is due to the myriad chemical/electrolyte imbalances in his system currently. It is also difficult to know if some of the more common remedies would be okay or effective in Bruce's situation. Typically quinine used to be given at night to alleviate the problem (in a tablet form). You might ask. Also don't know what sleep aids might be okay in his situation, but have found that Klonopin (clonazepam) to be extremely effective. Not sure what his diet allows, but of course, foods with high tryptophan levels (like turkey) help you feel drowsy and drop off. I suspect that much of the swelling may also be a by-product of chemical imabalances (A/G ratio, low protein level, etc) that causes fluid to be pulled out of the cells and into the body tissues. I know a hg of 9 sounds low (and it is) but when it is a gradual drop the body usually adjusts fairly well to it without really dramatic effects. Certainly fatigue is going to be an ongoing problem with all that Bruce has had to endure and the difficulty sleeping will not help. Are there some high iron foods (red meats, liver) that Bruce can have on his diet? Really recommend the Klonopin if his dr. says ok.
ReplyDeleteBruce call me, I might have some ideas about the restless legs. Claus.
ReplyDeletehello! just thought i would check in with you all and see how things are going.. i updated my blog tonight for the first time in a few weeks.. the start of school was very hectic and then my parents came for a visit so it's been crazy around here! neil is also taking binders for the phosphorus.. actually he just started taking them despite having the rx for them for a long time.. he kept forgetting to take them. the dr told him in early august that if he starts itching, it's because of not taking them... so he started to itch a little and now he's taking them. he's still feeling really good overall though! i'll say prayers for you guys to get a donor either from the list or maybe someone live will come along for you!!!!!!
ReplyDeleteAmy & Bruce,
ReplyDeleteI don't know if I told you but Sean gets a lot from talking with Bruce. Some good and some bad, but either way he appreciates it more than Bruce probably knows. Bruce is the reason that Sean questioned taking out both kidneys. I am happy and nervous about it, but wanted both out all along. I was just waiting for someone to decide if it was in our best interest to do so. Make sure Bruce knows how much we appreciate his input!