Dialysis Training

Brent had his fistula placed on Thursday.  Dr. Cull at GBMC made a small incision in his forearm and connected the vein to the artery so the vein can develop thicker walls and tolerate the high flow rate needed for dialysis.  This takes 6 to 8 weeks to develop so until then, they will still use the tube in his chest for dialysis.  While Brent has this in place, he cannot get it wet.....so he has to be very careful with showering and no going in pools.  Dr. Cull did a great job, and we were very happy with him.  If we had waited to go through Hopkins for this, we wouldn't have surgery scheduled until late May.

Brent has felt pretty good for most of the week.  His energy level is continuing to improve.  He walked to school with us a couple times this week.  He did go into work one day to talk to his boss and they are so understanding and wonderful.  They really set his mind at ease about being out this long.  He isn't schedule now to go back to work until the end of May when he finishes his at home dialysis training.  This training will start on April 25 (Brent's birthday!) and continue on for 4 or more weeks.  During this time he learns to hook himself up to the dialysis machine, run the controls, make dialysate, follow his blood pressures, take blood samples and centrifuge them.  He also has to learn how to stick the fistula to hook himself up to the machine.  We are planning on having a whole supply cabinet for the materials. They also require a lazy boy because you have to recline while getting dialysis. 

We are trying to put weight on Brent....he has lost about 20 pounds since first being diagnosed with aHUS in the fall.   Unfortunately, we have to follow a very strict low phosphorus diet, so that means no dairy, beans, nuts, chocolate, whole grains. 

Here are some prayer requests: 
For Brent to put weight on
Increased energy
Good control of blood pressure
All details to come together for our trip to Disneyland (May 1 - May 8)  Brent is getting set up for outpatient dialysis in Orlando on Monday, Wednesday and Friday
Patience dealing with all the paperwork and insurance and social security (Brent gets to go on social securtity since he is on dialysis)