March 31, 2014

After 15 days as a resident of Duke Hospital, Dave is once again home at our apartment. Why such a long stay? Primarily the diagnosis of Hyperkalemia is the issue. Too much potassium in his blood caused by what seems to be a constant state of dehydration. We are still waiting on one last test relating to his adrenal gland. This was sent off to Rochester, MN, to be run at Mayo Clinic, but several other things did surface.

It was discovered Dave also had Metabolic Acidosis, meaning, his body is producing too much acid, resulting in a loss of important elements. In Dave’s case, he was suffering from loss of bicarbonate, despite taking daily sodium bicarbonate supplements. This was yet another deficiency that can cause increased potassium. Symptoms include headaches, nausea, fatigue, etc.

So the identified list of items causing high levels of potassium and constant state of dehydration are: his primary anti-rejection medication, not enough daily fluid intake, body not absorbing fluids due to short absorption time caused by his Ostomy. Everything runs quickly thru his intestine, not allowing time to actually absorb into his system, Acidosis diagnosis. Still under review is the final adrenal glad test.

And let us not forget that darned BK virus. Is it really something to be concerned about or not? The most recent test showed his values jumped up to 10,800 (we were trying to get back to 0!). Both the nephrologist and infectious disease communities have now weighed in. They all agree its extremely rare that it activated in a patient with a healthy kidney. There is very little documentation or research to refer to on the subject. That said, the ID team will follow closely, with the goal being not to damage his healthy kidney. They do say while 10,800 sounds high, there is a significant higher number to be reached before we should be concerned. The plan is to not reach it. The surgical team has agreed to eliminate 1 of Dave’s anti-rejection meds, but if any of his liver or small intestine numbers start to get out of line, they will want him back on it.

Back to the question of why such a long stay. It takes a very long time to get so much in balance and David’s physiology continues to perplex and fascinate the doctors. Every thing gets changed in very small increments to get the balance right. Change one thing too much and another goes out of whack! Example: Remember all the dramatic low blood pressure drops we recently were dealing with? When the Doctors treated Dave for that, he soon started running very high. So he is now back on blood pressure meds.

These are the changes.
1. The Prograf anti-rejection medicine dose changes weekly based on labs. This won’t be changed based on BK levels or potassium. It is the critical anti-rejection medicine he will take rest of his life.
2. Eliminated cellcepht anti-rejection medicine. He is still on prednisone.
3. Acidosis – administered bicarbonate via IV in the hospital to get levels up to normal range and will continue oral meds daily.
4. Magnesium – IV boluses in the hospital and daily supplements but this has continued to stay low since surgery.
5. IV Therapy at home – Dave will hook himself up via his chest port daily to take 1 or 2 liter boluses as needed to keep himself hydrated.

As always, thanks for caring.

Linda and David 904-327-1492 904-610-7352



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