JULY 02 - NOW
In July of 02 Lycia got extremely sick, ever more than she ever was before. Do to fatigue and nausea, she could barely move, her water retention was becoming more and more of a losing battle. Her lab work came back off the charts in all areas. After a routine doctor visit we ended up getting out of SF late and had to stay overnight in Vacaville. The next day Lycia's doctor called me on my cell phone and told me to get her back to SF ASAP. Lycia needed to be admitted because her potassium was too high and could cause her heart to stop. After a couple days they were able to stabilize the potassium and informed me of the severity of the situation. In retrospect I am glad they waited until after she was stable to tell me. At the end of that week they placed a temporary Hemodialysis Catheter (A hemodialysis catheter or tubing is used to have access to your blood in her neck) and began dialyzing her. Why did she need this tubing? You need this tubing for dialysis. The tubing has to be changed or taken out when: infection happens, not enough blood is flowing through the tubing or a permanent vascular access has developed and is working for dialysis. They needed to remove the fluid from her body quickly so that they could place a peritoneal dialysis catheter the following Monday. Her kidneys were no longer able to keep up with her needs. In the end I believe they removed something like 10 or 15 lbs. of fluid from her body before they were able to do surgery. After the placement of the PD catheter we were able to go to the Ronald McDonald House (Organization known for housing seriously-ill children and their families also funds mobile clinics, suicide prevention efforts and scholarships.www.rmhc.com) and stay while we waited for her exit site to heal for a couple weeks.

During this time I was trained how to do her dialysis for her once we returned home. In between Hemo treatments, 3 x a week, and training’s we took advantage of free passes given to us by RMH to see the sights of SF. our favorites were the Exploratorium and Pier 39. It was so nice to be able to relax after all that was going on. We also loved being at the RMH because the staff and volunteers made us
feel so welcome.

Once my training was over and the catheter was usable we were sent home with orders to return every month until transplant. They had told us to use the lowest concentration dialysate 1.5% (Peritoneal Dialysis{PD} is performed by introducing small volumes of dialysis solution {dextrose containing salt solution} into the peritoneal cavity. By diffusion and ultra-filtration, toxic materials move from
the blood and surrounding tissues into the dialysis solution. Removal from the body of waste products and excess water occurs when the dialysate is drained) to start and giving us all the normal meds to keep taking. Everything was going to be fine. Well everything was not fine after a couple days. Slowly Lycia started to put on weight again but nothing like before. She appeared to top out at 65 lbs. or so but was complaining of occasional headaches, nausea, and vomiting. Being new to this whole mess I just kept giving her meds as usual and doing the dialysis. After being around her being sick for so ling none of her symptoms raised a red flag.

One night, after a week and a half, I woke up to my eldest daughter, Krishna, screaming for me. When I went to check it out Lycia was on the floor limp and dazed. I told her to try to move and she lied there limp as a sack of potatoes telling me, "I am moving mommy." She wasn't moving. Then her eyes rolled back
and she went into another seizure. I called 911 and we were taken to the local emergency room. From there we were flown to SF in a little jet plane and she was put in PICU for Hypertension Seizures. The headaches she had been having all the day before were due to severe hypertension and I had no clue. I have been so
thankful since that day for Krishna's having been there and aware. This time I believe we stayed in the hospital for 2 weeks. The time goes by so erratically in there though it’s hard to say. Thankfully my father and the UCSF social worker were able to help cushion the experience. At this time the docs changed her
dialysate prescription to 2.5%, raised her BP (blood Pressure) meds, and started her on anti-seizure meds. It was like starting all over but now I was much wiser about the situation and how things should be. Since then we continue to have ups and downs with her blood pressure however I know what to look for now and deal with it. Over all I think she has done well on dialysis. Life is a little more restrictive because she is almost literally tied to her room for 10 hours a night while she is on her CCPD Machine (The process for CCPD uses a machine that sits at the bedside. This machine is called a cycler. The cycler automatically performs the drains, fills, and counts down the time of the dwells. Each fill, dwell and drain is called a cycle. The total cycler time is 8 to 12 hours during sleep. During the remaining waking hours dialysate dwells in the peritoneal cavity.) But we have managed. In fact she was able to take a trip to NYC complements of Make-A-Wish. She chose to go with her Grandpa, myself, and her sister and we all had a most wonderful time seeing the sights and shopping. Her favorite part of the trip.... The Giant Toys R US
shopping spree.

It has been over year now since she started Dialysis. She has only had to return to the hospital once since the seizures and it was a planned hernia repair. During this period I had been pregnant and in January delivered a baby girl much to everyone’s delight. Between Lycia, Krishna, and the baby life is pretty full but we manage well...with a little counseling to help us through rough spots.

At the front of our minds right now is her transplant in January 2004. After much thought I have decided to be her donor.