Monday, August 11, 2014

Home Dialysis, unknown infection, lots of fever

First, it looks like John will be doing his dialysis treatments at home by the end of this week.  We have dedicated a room for this, as the equipment takes up more space than we anticipated.  The little office now has the title of 'dialysis room'.  Deliveries have arrived from many sources, most notably one ton of dialysate solution.  Yes, 2,000 pounds.  This is one month's supply.  Each treatment requires 20 liters of dialysate.  Does this give you a new appreciation for what your kidneys do for you?  Healthy kidneys filter about 180 liters a day. 

He is also still battling some unknown infection.  This took him to the ER several times last week with a high fever.  John needs to be more careful than an average healthy person with fever, he is immunosuppressed with medication so that his body does not reject the donor kidney.  Also, the catheter that he started dialysis with goes straight to his heart, so if an infection invades can be serious quickly.  Tomorrow he will have the catheter removed!  His fistula is working great, and his doc wants to eliminate the cath as a possible source of infection.

He is suffering with horrible chills and fever mostly at night.  The nephrologist is AWESOME and taking this seriously.  John had a chest xray today, is on a new antibiotic, and having the cath removed tomorrow.  Have I mentioned how much we like this doc?  Bonus:  he lives 4 houses away, and takes my calls on his personal cell.  Each time John has been in the ER or admitted to the hospital, he comes to confer with the ER docs, whether he is on call or not.  He is calm and reasonable, and takes our opinions and ideas as valuable input.  

Here's hoping for a smooth transition to the home dialysis, and no more fevers.  We are hoping to get into a new normal with this routine, but it has been a bumpy ride as this kidney fails.  

We are squeezing in summer fun sometimes, and were lucky to see some of John's family in the city he grew up in and loves over the weekend.  That's Scituate,  MA in the background.

Thank you to all for your gestures of support, big and small--they mean the world to us.  

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