Tuesday April 26 as of 10:30 AM

I went to Wake looking forward to breakfast with Ed, and finally found him in his new room (369) dressed in shorts, shirt and shoes and just finishing breakfast. Looking bright and thinking well. He was woken up at 6 AM to be moved to the new room. Ed said he did not have too good of a night, strted thinking about past and future and getting a little depressed if he would make it out of that hospital alive. He did not care if he needed continued dialysis - just wanted to make it out and not die in the hospital. After talking for a while, his new kidney Dr. came in (Dr. Lee (spelling?)) and spent a good amount of time with us. Ed had seen him yesterday and felt that Dr. Lee was not as optimistic, but today it was very clear that he is optimistic and after the long visit, Ed said that he did like him. He spent some time explaining which other causes and factors and differential diagnoses and outcomes he was considering - very thorough it seemed to me, but understandably that can be confusing and taken as "you are very sick". Dr. Lee was very clear that the best case scenario was that the kidney recovers enough to pull the catheter and send Ed home - the worst case scenario was that Ed would be sent home with outpatient dialysis 3 times a week. Ed liked that clear cut statement. Dr. Lee has seen patients recover even after a few weeks of outpatient dialysis, but the longer you are on dialysis the smaller the chances. To answer Karen's earlier comment: Yes they are aware that dialysis prevents the kidney from trying its best, so they like to keep as many days as possible between dialyses to be able to see if the kidney recovers. Todays values were improved, so no dialysis tomorrow unless the values are bad tomorrow morning.
If Ed wants the Lidocaine patch back then he can ask for one - the Dr approved the use as needed. Ed needs to increase his protein levels, blood albumin is only 2. something and needs to be in the 4's. So Ensure with every meal and protein rich foods - even though that seems counterproductive to the kidney function. Ed's swollen feet are probably also a symptom of the low blood protein levels. So when he is not walking, then he should be sitting with his feet up or laying down. Walking and PT is encouraged.
The Dr. ordered another blood test (T-something sorry I did not write it down). Essentially, the specific white blood cells that are elevated during an allergic reaction are Eosinophiles. Ed's counts were high at Duke with the Red Man's syndrome, and that is a known measure after a reaction to Vancomycine. However, his levels are still up (15% instead of 5%) and that is unexpected considering the vancomycin should be out of his system. We talked about the crystals forming in the kidney and Dr. Lee said that is a possibility, however there were no elevated Eosinophiles in the urine, just in the blood. There is something called "Mastocytosis" when the mast cells (eosinophiles belong to that group) are elevated. Dr. Lee described it as the vancomycin setting fire to the system, but now the fuel source is gone and for some reason the glow keeps gowing independently. This T-blood test supposedly is not elevated after vanco but may be up after other reasons for high Eosinophiles. Sorry, I have not looked any of this up - but try to repeat the converstation this morning.
Dr. Lee agreed at this point kidney biopsy would just satisfy curiosity - not have any effect on treatment - so will not be ordered at this time. He also explained that the blood pressure medicine is needed because the kidney is involved regulating blood pressure and because it is important for the blood to arrive at the kidney with a certain pressure. Too low and the filtration does not work well, too high and the kidney can be damaged. Ed is currently taking 2 different blood pressure medications, but Dr. Lee reduced one of them to be taken only if the blood pressure is above 160.
Ed has a great nurse today til 3 PM "Norma" and they are getting along well. She will help him later to get a shower and make sure the port is well taped with plastic. Ed really wants to wash his hair.
I left at 10:30 AM and Ed was laying down for a nap – I can understand that he is tired after all this talking and thinking. Overall I think Ed needs to keep his mind busy now to regain control and he hopes to be able to read the computer screen soon. He got new glasses with reduced prescription strength in his right eye after the cataract surgery, but he has to take time to get used to them.
--Friederike