Post-Transplant Update

My exhausted, overworked son just drove up to UCLA to bring me the laptop and some other items. He didn't stay long because he has to work at 9 a.m. tomorrow at the restaurant, then work a banquet somewhere else tomorrow night. Then he's up early again on Sunday to wait again.

Today was Day Two Post-Transplant. One of the surgeons took off my bandages this morning. The incisions are fairly small. One for the removal of the peritoneal dialysis tubing that protruded from the left side of my belly button for 22 months. Another along my bikini line for the insertion of the new kidney. And a third as a drain line on the right side of my tummy that is currently attached to an orange-sized drain collector that's pinned to the inside of my hospital gown. Dr. Veale, the main surgeon and a real cutie, never uses staples, only dissolvable tape. Thank goodness. I had staples with my hip-femur surgery in March, and the aftermath of the staples still hurts. But the good news is: I have my cute, little belly back! No more gauze, tubing, or tape. No more transfer set to hide in my underwear or under my shirt. Yippee! No more dialysis!

Wednesday, the day of the surgery, Aaron drove me to UCLA and stayed with me until I was wheeled off to the OR. Though the anesthesiologist had promised me up and down the day before when I spoke with him on the phone that 1) they would put the shunt into my neck after I had gone asleep, and 2) that the breathing tube would be removed before I woke up, as I was taken to the OR, I got the real story: the former would occur when I was still awake, and I probably would still have the breathing tube in me when I woke up.

I had been pretty darn calm up until this point, but these two pieces of info really disturbed me. Following heart surgery last Novemeber, I had been so traumatized by the tube down my throat after I had woken up. I had frantically tried to pull it out, thinking that the hospital staff was set on suffocating me. Then I went through the trauma of having my mother intubated against her will when she was taken to the ER last December before I could intervene and then having to go through the anguishing process of having the tube removed.

Thank goodness I remember precious little of the recovery room or the journey to my room. I was in a morphine dream. Susie was with me in my room until 11. Aaron had gone home as he was exhausted and not feeling well. Through my daze, Susie's coat kept changing texture, color, and design, with a preference for jiggling swirls.

Robby, who had been involved with me on the HBO documentary about kidney donation, was in the waiting room with Susie and Aaron when Dr. Veale came out to talk about my case. Aaron said he was my son, Robby said he was my cousin from New York (!), and Susie said, shucks, she was "just" a friend. Dr. Veale said the kidney upon placement had really "pinked up"--a good sign. He said, as he has said to me many times, that to look at me, you'd never know I had such a history and such calcified veins. But because I had had the CT scan done at Kaiser prior to surgery, he had a good idea of where my best veins were, so he didn't have to do a lot of cutting and hunting around. All looked good.

Robby also visited me the next morning before he flew back to New York. (Yes, that part of his story was accurate! Funny guy!) Of course, when I had eye surgery, Heather introduced herself and Tom as my sister and brother, so perhaps it's standard fare with my friends to want to be literally part of my family.

Susie also visited with me after work yesterday. She even donated blood in my name prior to surgery. She is an amazing woman. Remember, she donated one of her kidneys to her best friend's husband in the summer of 2009.

I was up and walking the floor yesterday. My nurse, Constantine from Romania, said that in his eight years working at UCLA, he had not seen a patient as active as me post-transplant. I feel so much better than I have felt the last few months. And it has been stressful keeping how awful I've felt from everyone--doctors, friends, family, Aaron. I was sleeping with my head elevated on four or five pillows. I had trouble crossing the room. Excess fluids were building up, despite me using strong dialysate. I really struggled doing the laundry, carrying my massage table, taking Rasputin for walks. I frequently had to lie down and nap. I really didn't want to say anything to my doctors because I was afraid of being taken off the transplant list. I didn't want friends and family to know because they might think I shouldn't get the transplant if I was in such bad shape. And I plain didn't want to worry Aaron. Now it feels so cleansing to tell the truth--even to the transplant team.

What a miracle: My skin tone has vastly improved. I have gone from pale and sallow to blushing teenager. And my energy level is so much better. I have walked farther in the past two days than I have walked in the last few weeks. And without fluid pushing on my lungs and heart, without chest pain.

I met Brandie, the 36-year-old from Newbury Park who wanted to give to her husband but was not compatible, so I received her kidney. Her husband, Conrad, was staying in the room next door to her. I have been over to their rooms many times in the past few days. Brandie was feeling poorly, just as Susie had felt post-donation, but Janet was in great shape. She left in the early afternoon yesterday in good spirits. UCLA has a nice hotel where she and her husband, Dana, were put up last night. They visited me today before they left for home. UCLA had presented Janet with a thank-you basked of goodies, including a pin that reads "Everyday Hero." Instead of keeping it, she said I should have it. She said she is just put out for a few weeks of her life, but I have gone through so much all my life and will continue to do so. That was really touching. As with so many minutes during the last few days, tears were very close, but somehow they didn't quite fall.

Received a lot of calls today--even from Marie in France. Sure like hearing from everyone.

A lot of changes in my life are yet to come. A lot of restrictions. Like I sure wish I would have known I can never have sushi again. I would have had a feast the night before surgery. Must be very very careful about infections. I have developed thrush in my mouth, something that is in everyone's mouth but rarely manifests as one's immune system attacks it. But mine is in hibernation so as not to attack the new kidney.

My immune suppressants were reduced today as the standard dose is too strong for me. That's a very good sign. The fewer immune suppressants I have to take and still be able to keep the kidney, the better.

I am still hooked up to three IV lines, down from five yesterday. Still have the catheter for my urine and a continuous heart monitor. A whole lot of spaghetti. And the neck shunt is staying in. It's how they draw my blood. They're a bunch of vampires here, for sure. I told Aaron people are admiring my crazy boot-slippers and dangly earrings when I walk down the hall. He said, "I think they're looking at the tube in your neck, Mom." I said, "You're probably right. It's so punk." (Pictures coming soon, watch out.)