Bruce went to work this week. He still has very very little energy and still getting sick once a day. He has improved from last week though. Dialysis is going good- all at night again and he goes tomorrow to get blood checked and get another shot.
We are not allowed to know if anyone has called to be a donor or is getting tested. LifeLink will not tell us anything.
Bruce has appt on June 26, next friday, with Dr. Burtch the surgeon. He is the one who did the catheter surgery in December and the one that his Nephrologist Dr. Russo strongly recommends. He has said before that IF Bruce has a live donor, he would do the surgery all at one time (take out kidneys, put new one in) But United Health Care has sent Bruce to LifeLink in Tampa not here in Fort Myers. If there was a live donor, we would have to at least try with insurance to find a way to do this all at once.
At this point, he has no live donor, so we will meet with Burtch and get into the details of the Nephrectomy. I know that Bruce, Russo, and Burtch all agree both kidneys should go. I just want to make sure that is best option. Also, the incision is going to be large one down the center, and I want to make sure there is no other way. Laproscopic removal is a possibility but his may just be too large. Then we need to talk to Russo about living with no kidneys and going on hemodialysis through a port until he heals and can get another catheter surgery to go back on Peritoneal Dialysis. It is coming down to the wire, he really has to get the kidneys out. And he worries about it non-stop.
Easter Everyday
8 years ago
Posts
Sounds like things are really coming to a head here. Hopefully, this may not be as bad as it sounds. If the kidneys are really not functioning at all then leaving them in place only serves to add the potential of a life threatening bleed to the mix. Removing them without a donor in site sounds frightening but may well be the lesser of two evils. Hopefully dialysis can continue to be successful until a donor is found and at least the constant threat of a massive bleed will be removed. The only way to look at things at this point is from the most positive angle you can reasonably find.
ReplyDeleteWe know someone that lived successfully for 5 years with NO kidneys. He "just" got a transplant in April. I know it's scarey, but you are welcome to talk with him or his wife. They've offered to sit down with us and discuss all that's happening, etc.
ReplyDeletewow.. i can't believe they're not allowed to tell you if people are calling and interested in donating.. our place is telling us.. but we have people we are recommending to them because they are interested.
ReplyDeleteHi Amy and Bruce ~ it's Marisa Haedike. Art forwarded me a link to your blog. Please let me know how I can help, if I can help. If you'd like me to spread the word, I have a blog with fairly strong traffic. I'm going on vacation tomorrow for a week. Please email me if I can help you. I'm so sorry you're going through this. Thinking of you and sending you both lots of love.
ReplyDeleteOur center won't tell us "who" called or got kits, but they will tell us how many "kits" are out to do the inital matching. What did the doc say last week?
ReplyDeletethanks for comments. have to just proceed as if no donor, can't get hopes up for nothing. Getting kidneys out is just part of this whole process, it has to happen so just getting ready for that big step.
ReplyDelete