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.
Easter Everyday
8 years ago
Posts
Perhaps you could contact the PKD website & ask what they know about this problem. THey have a large suncoast membership & there must be someone who has experienced a similar situation at lifelink & could advise. Allen Poindexter is the president of the association for the region. I almost seems like you should be able to talk with the surgeon at lifelink to clear this up ASAP. The right hand needs to know what the left hand is doing & you are your best advocate. You can't let them keep you in limbo with something this serious. Would it be possible for Bruce to have the hernia surgery at lifelink so they could actually see what he has going on? Couldn't that surgery be considered part of the whole transplant process & possibly be covered better insurance wise than it would be in Ft. Myers. Just a thought.
ReplyDeleteAmy, this is Jan Collins, friend of your Mom and Dad's and "old" retired nurse. It is my understanding that University of Maryland (Dr. Andrew Kramer) pioneered the process of simultaneous kidney removal and transplantation. They have done over 50 cases with good results. I know this is all overwhelming, but I strongly advise seeking help from the places that specialize in this problem if at all possible. Much of what I have read on your site seems to contradict both what I was taught and common sense as well. I realize medicine changes rapidly, but certain scientific facts do not.
ReplyDeleteour nephrologist told us it has been done but it is a procedure they prefer not to do.. he said it's very hard and long.
ReplyDelete