My Husband's Version

Hi, I'm Mike, Marylin's husband. My view is probably different from Marylin's, but read on and see for yourself.

I first met Marylin in 1974 when we both worked together in the Radiology department of a local hospital. Marylin went into mammography and I went into Special Procedures (angiography, etc).

Marylin and I were each single in 1993 and began a relationship. Marylin is a petite blond, energetic, intelligent and very interested in life. We became attached quickly.

Early in 1993, Marylin began to lose energy. She also began to dislike the smell of mushrooms and onions cooking, both of which she was very fond of before. She had labs done and her bilirubin was elevated. Not too high, but definitely over normal. She felt good, except for tiring out more easily. A few months went by and she slowly got more jaundiced. Her physician was convinced she had Hepatitis C, although her lab test for it was negative.

Early in May, Marylin began to get very jaundiced. She lost most of her energy. Her legs swelled up. She found it difficult to concentrate. She had no appetite. A friend came over on May 6th and found her unconscious. An ambulance was called and she was taken to the local hospital where she works. After spending one day there, she was transferred to the University of Chicago.

While at the University of Chicago, I took a lot of notes. What follows is transcribed from them.

Saturday May 8, 1993

I arrived at the ICU at 11:20am. It was laid out so that each patient was in a separate booth with a curtain for the front wall. I could see people in Marylin's room. Her nurse, Irene, informed me Marylin was holding her own. She has an arterial line in her left wrist. Her Sa02, a measure of the oxygen content in her blood, had dropped to 90-92, so Marylin is on oxygen. Her ascites seems to have increased. Two physicians are now attempting to tap her abdomen and remove several liters of excess fluid. Her nurse is going for albumin. I wait in a chair in the hall outside the ICU door. I am scared.

It's hot outside for May, mid-80's and the sun is hot coming through the window. I sit right under the transplant helicopter. My fear, the heat and the noise of the rotors take me back to Vietnam. Oh well.

Marylin's sister, Lora, her husband, Mike and Marylin's brother, Bob, arrived about 11:45am. Lora and I went to see Marylin about noon. She was tired, but felt better. She will get two more units of FFP(fresh frozen plasma). Her blood gas in normal (98). Blood pressure = 144/76, heart rate 98-110. Marylin's IV is acting up. Irene is waiting for the OR team to come up and put in a central line. Her NG tube is out. Marylin may have aspirated something yesterday. Irene says she has pleural effusion. Marylin has a lower leg inflation device to prevent DVT in her legs. She is a poor candidate for heparin.

Marylin ate a little solid food. Her abdomen is hard and a little bigger. With Irene's and Marylin's permission, I put a leech string on her left ankle. One of my best friends had given this string to me about one month before he died. Seeing the string, wearing it brought him back.

Marylin was lucid at first, then forgot where she was. She was very disappointed to discover she was still in the hospital. She is sleeping now. She will have oral meds to increase her potassium.

I told Marylin I loved her and to hang in there. Once, when I was talking to Lora, my eyes filled with tears. The same thing happened to Lora.

Marylin's family is all gone and I am alone now. The waiting room is dark and depressing with a TV that's always on. I sit out in the hall where there are windows and sun. Not much of a view though.

2:45pm. Helicopter just came in. Spooky. I had a long talk with Irene. It is very unlikely Marylin will reverse at this point. The trick will be to keep her alive until a liver comes. Renal failure, generally reversible, is possible. Marylin has been lethargic. Irene said after liver transplant Marylin will have to take her anti-rejection drugs religiously. Some possible side effects of these meds are facial, leg and abdominal edema. Her immune system will be compromised and she will need to remain from sick people, even those with colds. That last applies to now. I will let Marylin's family know.

3:05pm. Two female physicians, whose names I forget, came to drain Marylin's abdomen again. They were very polite. I gave Marylin a kiss and went to the cafeteria. It wasn't bad. I got lost in the basement and had to retrace my steps.

4-4:30pm. I stayed with Marylin. I move the chair to her right side and hold her hand. She never wakes up; she is unaware of my presence. Irene said the two female physicians wonder if she might go into a coma. 850 ccs of clear golden fluid was removed from Marylin's abdomen. Her pulse is now up to 118-123. Irene says it should go down. Marylin is being given antibiotics prophalactically. She has some edema to her feet and hands. Her Pro Time is 16 and she is receiving her sixth unit of FFP today. If the PT drops enough, she'll get her subclavian line inserted. Marylin breathes heavier, snoring; very unlike her. Sometimes she snores hard, has a premature beat, compensates and goes back to normal. Irene says that may not mean anything or it might be the beginning of something bad.

5pm. Marylin still mostly out. I spoke to her a few times. She is warmer. Her temp is 100-100.5(. Irene says antibiotics are usually given 101(, but Marylin's physicians don't want to wait. Her heart rate is between 110-120. SaO2 is 97. Marylin drank a glass of orange juice, then fell back asleep.

Sunday May 9, 1993

I called Irene to check on Marylin at 8am. Irene said Marylin appeared more alert. I thanked her and asked her to tell Marylin I would arrive by noon.

Donna, a friend of Marylin, called me at 8:30am. I told her Marylin's condition. Donna asked me to give her a hug.

Tina called me at 9am. She was very supportive. People at work are organizing fundraisers. Tina said if Marylin pulls through, it will be because of my strength. Tina will come up with Kalen and me Friday and Sunday or stay with Kalen, Kalen's choice.

I stopped by my parents and wished my Mom a Happy Mother's Day.

I arrived at the ICU at 11:45am. Marylin is much better. She is alert and ate a little. SaO2 = 97. BP = 140/78. Heart rate = 100-110. I told her about Tina, Wendy and Donna calling. Marylin's HIV is negative. No fever. Still having trouble with her PT being elevated. She was given Lasix twice for edema. There was concern last night that Marylin had abdominal bleeding. A tap was done last night and it was clear. Hematocrit has dropped from 34 to 24. It was nice to see Marylin so good. Irene said her bilirubin is down, but so are her liver function tests. This indicates it is even more unlikely Marylin's liver will reverse and heal.

2pm. Marylin is tired. Irene suggested Wendy, Marylin's sister, and I leave and return in an hour.

3pm. Two physicians are tapping Marylin's abdomen to relieve the ascites, so Wendy and I went to the cafeteria.

4pm. Marylin tired, but in a good mood. The two physicians are still in the room, one male, one female. They are not very friendly. They said they drew one liter of clear golden fluid. Marylin did well. I gave Marylin a few pieces of candy. Marylin is tired. Wendy gave her some juice. We turned Marylin on her left side. I kissed her and said we'd be back.

Wendy and I sat in the Tower 6 reception area. Wendy wants me to tell Marylin she was scared to death to drive here, but she got here. Anesthesia was repeatedly called for D607, the room next to Marylin. It scared Wendy and me.

5pm. Marylin awake. She got more oral potassium. She loved the lemon drops. Her ammonia level is high: 168. Her vitals are good. Marylin did her breathing exercises. She moved both balls to the top on the last try. Marylin is now sleepy. Wendy and I turned her on her right side and left at 5:15pm.

Monday May 10, 1993

I arrived at the ICU at noon to 1:15pm. She had another nice nurse, Cathy. Marylin had a hamburger and fries, which she couldn't eat. She did eat half her soup and half of a cookie. She had two glasses of orange juice, each with a pack of sugar. Her blood sugar is down. Vital signs are good. BUN and creatinine are within normal limits. FFP still is being given. PT is up to 16.7. A physician came by and tapped her abdomen, but could only get 200 cc. The edema to her feet is slightly more pronounced. I looked at her chest xray. The bottom third of her right lung is cloudy. The left lung is slightly more blunted than before. She did her breathing exercises twice while I was there and at least once on her own.

Marylin had a restless night. She was scared and felt as if she was in a void. I told her to relax. She has the leech string and is never alone. That's why it's there. I gave Marylin a card. She seemed nonchalant. She is well aware of where she is and her condition. Her mood is low. I brought her the new Cosmopolitan and American Woman. She wasn't in the mood for them. She is more alert, but pissed off. I need to show her anger is strength and can be channeled.

I stayed until 1:15pm when Marylin got tired.

Donna arrived at 1:30pm. She stayed until 5:30pm. She brought Marylin some oranges.

Marylin is more easily disturbed by the noise in the ICU and all of her IV lines. I take that as a good sign. This tells me she is more aware of her surroundings, more herself. Her nutritionist says Marylin can eat anything.

6 and 6:15pm. The curtain is closed. I guess the central line is being inserted.

I called Marylin's nurse at 8pm. She said Marylin is resting well and will tell Marylin I called and that I love her.

Tuesday May 11, 1993

I called Marylin's nurse at 8am. Marylin is doing okay. I asked her to tell Marylin I love her and would see her at noon.

I got a call from Marylin's nurse about 9am. They have a liver for her. It is being harvested as we speak. I left home immediately and drove to the University of Chicago as fast as I could.

I arrived in Marylin's room about 10am. Many doctors came in to talk to her. One doctor came in and gave us statistics about the length of surgery. The anesthesiologist sneezed his way through his consent. He was a nice man. Marylin was prepped and ready for surgery. I had to remove the leech string. I went downstairs with her as far as I could. I gave her a kiss and said I loved her. I left the hospital and spent time with my son.

About 8:30pm, I was beeped by Dr. Piper, her surgeon. Marylin was in surgery 4 1/2 hrs. She only needed one unit of blood and was doing fine. I cried.

Wednesday May 12, 1993

I called the ICU. Marylin was fine. Her bilirubin was already down from 16 to 10. She was still on a vent, but that should be gone in a few hours.

I met Marylin's brother, Rich, outside of ICU that evening. Marylin was sitting up in a chair. She had at least three IV lines and one drain, but she was definitely doing better. I was so happy for her.

Marylin was released ten days later. Those days are pretty much a blur to me. Between spending time with my son, with her and working full time, I was really busy.