week after hospital stay

Not much has changed this week at home. He is nauseous and usually throws up in morning. He is barely eating. Nurse told him to eat anything he feels like eating to get some nutrients. He is doing more dialysis at night but not during the day because he couldn't handle it. He has almost no energy. His hemoglobin is at 8.1 from Monday's blood work so that explains the energy level. They gave him shot today to boost the hemoglobin (I think they use Procrit) and he will get more shots next week and check blood again.

His hernia got worse in hospital, so he has to be super careful because it could become a surgery emergency which means they would take kidneys out at same time. Maybe someone will donate kidney and be a match before he ends up in emergency surgery getting the kidneys out. If one of them bleeds again, then I'm sure they will do the surgery immediately. If he gets no news on a donor then we hope he can make it until August to do the surgery. Then just pray he comes through it well and can function on more dialysis without any kidneys while he waits on a kidney from Lifelink which could be another year.

He is working at home in between napping. He doesn't have energy to do anything else. I don't even know if he should have driven himself to Naples for nurse visit today but I had a conference call and a video shoot. I know he couldn't climb stairs or anything like that without feeling like passing out. He started taking his phosphorus binders again today so that his phosphorus levels don't get out of control. He should probably go back to taking potassium tomorrow because the dr. said if he wasn't eating to take them. It's hard to remember all of these things. Especially when he's got 20 medicine bottles and it switches almost daily what he's taking.


  1. Why doesn't the Dr. schedule the surgery for a date in June to avoid a potential emergency surgery? If the hernia has gotten worse, why wait? If the bleeding starts again, Bruce will be in a weaker state which will put him at a higher risk. This would also prevent getting caught in the insurance negotiation problems, to be resolved by 8/31, with the Ft. Myers hospitals. Just a thought.

  2. I tend to see some merit in the above post. If they have to do emergency surgery they will undoubtedly have to transfuse him if he goes in with such a low hemoglobin and loses any significant blood. I understand the theory behind not wanting to transfuse due to the heightening of the antibodies, but there are times when you have few good choices and you have to do what's necessary in the moment. No way to tell when a kidney might be available but his blood loss is real now and it seems that it is having a pretty big impact on quality of life. In my training we were taught to treat the imminent emergency and deal with what comes later when and if it comes. The injections to raise hg levels do take time and are not without their own problems. I empathize with all the different meds and constant changes to remember. One of the most helpful things for me when I cared for my Mother with alzheimers was a big dry erase board like my kids used, where I could write down all the things I needed to remember (treatments, meds, special foods, liquids, etc) and just erase and rewrite when things changed.Helped keep me sane and on track. There were times when I couldn't remember when or if I had given a particular med (and I'm a nurse). The mental fatigue and stress just makes your mind turn to mush. Hope you are getting some relief time and a few minutes of quiet to meditate or whatever. Keeping you all in my prayers.

  3. Can they just take the worse one (whichever is bleeding, I guess, or closer to the hernia they want to close) out, and do the other when he gets a new kidney so the incisions don't have to be so large and he gets to keep SOME function while he waits? Or is there a reason they don't want to do it that way? It seems like it would be better to have the previously removed kidney site all healed and nice fresh edges on the second one to attach the new kidney to when he gets one. I'd think the blood supply and everything would be much better, and with only one to take out, the new kidney wouldn't sit out so long. ??? Just got out of the OR so I'm thinking surgically....