Greg's Transplant Journal

Tuesday 10/17/00

THE CALL

“It’s UCLA on the phone”, Janet screamed to me from the kitchen. “They have a liver for you”. It was 9 AM and I picked up the phone in the bedroom. The same person who last week notified me that I might have to wait another three years for a transplant now inquired, “How soon can you be here”?
I was told the liver was being flown in from Arizona, that I was a back-up for someone who was in ICU but the doctors weren’t sure he would be strong enough to endure a transplant.
My bag had been packed for months. I knew it would probably be a while before I could avail myself to certain creature comforts, so I took a shower, shaved, cut my fingernails and toenails, attempting to stave off the inevitable crud of a long hospital stay.
I had a good cry in the shower thinking about the donor. An Arizona man, 48 years old, type A blood, and probably a big tall guy like me. He didn’t know that his day was going to end like this when he took his last shower.
I called my friend, George, who had a liver transplant several years ago and had answered all my questions and was always there for me. In fact he arrived at UCLA before we did, met us in the hallway, and showed us to the Admitting Office.
While I waited for Janet, I stood on our porch overlooking our avocado and orange orchards. As I looked across the valley at the Los Padres National Forest I knew when I saw those mountains that I’d have a new organ inside me. Somebody else’s organ. During my whole transplant journey I never thought that I was going to die. So I didn’t say goodbye to the mountains, I just knew I would be a different person next time I saw them. And I prayed.
The drive to UCLA from Santa Paula is about two hours. Janet and I didn’t behave or talk much differently than usual. The feeling that I had was of this odd situation where I’m driving to UCLA to link up with a liver being flown in from Arizona, whereupon we are going to be "married". We hadn’t met yet, we’d both been screened, and it better work. The notion of it being kind of like a weird blind date made Janet and me chuckle.

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PREP

We waited in Admitting from about 11 to after 12. I’d be ushered into a cubicle to fill out more paperwork and answer more questions, then return to the dinky waiting area. A little boy sat in a wheelchair, something wrong with his leg, and he was going in for surgery. He looked more alone and scared than I felt, so I tried to make him smile and comfort him. Which comforted me.
I was asked to pick up the phone at the desk. Another call to tell me I’m a back-up and at best a 50/50 chance of getting this liver. In my heart I knew this liver was mine. They just didn’t know yet.
Eventually I was brought up to a room with probably four or six beds, all empty except for me. By now I’d been in the hospital so many times it was like coming home. Yes, the opening goes in the back. Nurse Dorothy prepped me. No nonsense, a bit crusty, matter-of-fact, late middle age, and there was no doubt that she’d done this a thousand times.
Next Laurie Mills entered my life, and in the middle of being poked, probed, strapped, IV’d, and everything else, she asked me if I wanted to be in a drug study.
She too was good at her job, sweet and very personable. She’d have to be. Her job is to sign people up while they’re being prepped for a major surgery that they may never come out of, inform them of the benefits and features (one of which is that you may end up being in a control group and never having this beneficial drug after all), and persuade you to make up your mind and sign on the dotted line in two minutes. As I said, she was good, and I did sign up.
The superstitious part of me figured that if I signed up for a drug study that didn’t start until I successfully made it through the operation was good juju. The practical side of me said that I’d get extra workups at UCLA, more labs, and great doctors at a world-class transplant center. From both the superstitious and practical point of view this was insurance.
Next on deck was Dr. Lerner, a bouncy, zaftig surgery resident with a New York accent who greeted me with a smile and sense of humor. She told me that her job was to examine my new liver when it arrived and trim it. I could imagine her examining it and snipping off a bit here and there. It was like talking to my neighborhood butcher. The notion took a bit of the magical luster off this process and instead converted my new organ into another piece of meat.
Another patient was brought into the bed next to me, Lou with his wife Laura. Lou was waiting for a liver transplant and had taken ill, so was admitted to UCLA. They visited me a day or two later, he received a transplant about a month later, and we’ve kept in touch.
Other people came and went, one important visitor being the anesthesiologist who asked me many questions. My prep is finished. Dr. Lerner is busily trimming my liver somewhere. Laurie is entering her new experimental subject into her Sirolimus study. I’m all dressed up and no where to go.
Finally a doctor walked into the room and stood at the foot of my bed and said, “This one is yours”. All the pent up fears and tension that Janet had held in suddenly burst out in a gush of tears. I’ve never seen her cry so hard before or since. She got me crying, the doctor’s eyes welled with tears, Lou and Laura grabbed the Kleenex.
Things jammed into overdrive quickly and they wanted me outta there right now. I had to seriously go to the bathroom and there was no way I was going to try to hold it before surgery and then be locked up in a bed for goodness knows how long. So I went for a little walk, they waited.
I hopped back in bed and was whisked out of the room, down hallways, in and out of elevators. Janet walked beside the gurney and waited in the hallway where we finally came to a halt. We had a few minutes together, mainly holding hands. When they came to take me away from her I gave her my glasses. That was the moment, giving her my glasses. When I take off my glasses I can’t see a thing, they have to tell me which wall the eye chart is on. So for me giving up my glasses was it. End of chapter. Do or die time.

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SURGERY TIME

Now blind as a bat, I’m wheeled down a hallway full of people in surgical attire. They seem to be relaxed, like chatting around the office water cooler. A whole bunch of people want to talk to me still. The anesthesiologist to confirm some items again. I told him about my concern about the fluid in my lungs and my high tolerance for morphine and so on. One of my big fears was pain and I wanted to make sure I told them about it.
In OR they picked me up and put me on the table. Oxygen mask, strapped my arms on wings protruding from the sides, hooked up to all the gadgets. When they spread my arms and pinned them down, I felt more like a butterly in a collection than a prospect for surgety. I was resigned to whatever was going to happen and generally my blood pressure goes way down rather than up in these situations, which is what happened this time.
My transplant friends told me that they give you a “happy shot” to relax you before they get started, and then they knock you out. Someone pushed the Atavan or something a little after 4 PM, which made me more than happy, it made me gone.
The next thing I remember it was 11 PM in recovery room.
I woke up with a tube down my throat which was very uncomfortable. I felt like I was suffocating and fought to breathe. It didn’t seem like anyone was paying any particular attention and I was afraid I was not going to be able to get enough oxygen, almost panicky. Someone came over and said not to fight it, which is damned hard when you can’t breathe. Eventually someone pulled the tube out, which felt like a hard garden hose, and hurt like hell and was scary. I think having the tube down my throat and going through that experience was the worst and most frightening part of the whole liver transplant ordeal. I haven’t heard a lot of people talk about it, perhaps because some people don’t remember through the haze of anesthesia. But the ones who do remember the tube dread it.

Wednesday 10/18/00

I don’t remember a lot about the first day in ICU. What I do remember was someone making me get up, walk about five steps, and sit in chair. Hurt a lot. I remember thinking, "I can't believe they are making me get up and walk the day after surgery".
I was given a morphine drip setup that kept me busy pressing the button. When I was laying in bed I wasn't too uncomfortable, so the fear that I would be helplessly laying in bed writing in pain, as I had seen friends experience, never materialized. However, when I was asked to walk around, THAT hurt like crazy, but in a way that is difficult to explain. When one goes through a procedure/operation where parts of ones body are cut or moved around which have never before been manipulated in that manner, it creates a sensation that one has never before experienced. So there is no point of reference to explain it to someone. And that someone, if they have never had it done to them, has no point of reference either. It’s probably a little like someone trying to explain the color blue to a blind person.
When I stood up I discovered pain of a quality and in places where I’ve never before experienced it. It really did feel as though my insides were going to fall out. Knowing that I only had a few hundred staples holding my Mercedes Benz-shaped incision together didn’t make me feel very secure.
One other fascinating thing happened. I leaked. When your liver is failing it ceases to efficiently filter the fluids in your body. Sometimes this causes the plumbing to back up, so to speak. Your lungs fill with fluid which needs to be drained so that you can continue breathing. Many people also develop ascites, which is an accumulation of fluid in your abdominal area around your various organs. That too must be drained when the volume is too great. When you are cut open during surgery, this liquid which has built up in your abdominal cavity, has a place to go, and when you are stapled back together you leak through the seams of your incision.
When you lay in bed the leakage is minimal, but the instant you move around or get up and walk, you leak as if you were a sponge full of water and someone just squeezed you. Your gown is drenched, sheets need to be changed, and it is cold and unpleasant. It took about a week or so to abate, but in the meantime I was drenched every time I made a move.

Thursday 10/19/00

I spent most of the day in ICU. I asked for a chaplain and a man wearing a Jewish yarmulke appeared. He prayed and I prayed. Moved me to 4-bed room late in day. After lights were out, one of the patients passed around extremely crunchy snacks and they talked late into the night. Off morphine drip now I think. I’m talking non-stop; Janet swears my liver came from a salesman.

Friday 10/20/00

6th Floor, 609A?
I told the docs on rounds this morning that I couldn’t get sleep because of partying last night, eating what the munchers were calling “peanut bridle”. They wanted me to be able to sleep so that I could heal, so I was moved to a 2-bed room. Slept well this night. Made lots of phone calls today, I guess my "salesman's liver" made me want to reach out and touch someon.

Roommate is a cardiac patient. His wife was by his side side for hours at a time and helped me reach items that were too far away from my bed. Laura and Lou (liver patient who was in the bed next to me when I was prepped) visited today while Janet was here.
The docs are impressed at how quickly I’m recovering so I may be able to go home within 7 to 10 days from when I first arrived.

HALLUCINATIONS AND SEIZURE

Saturday 10/21/00

Same Room
Watched USC lose to Stanford in last 4 seconds of football game. Janet didn’t work today so was able to stay a while. More visitors today.
I was hallucinating all day. Both my nurses were wearing either corn rows or large curls that looked like fat worms. The nurse with the fat worms hair-do also had a reddish tint to her hair and wore multi-colored clothes. When she entered my room, colorful worms writhed upon her head, reminding me a bit of the Medusa story.
My trips to the bathroom were quite entertaining, including seeing faces in the geometrically-patterned bathroom floor and hearing voices from the air vents along the base of the walls as I sat on the toilet. It seemed like whatever I’d recently heard, such as a football game announcer, became a garbled rendition coming through the vents, as if the radio were on in another room and I was hearing it through the vents. When I bent over to listen more closely the words didn’t become any more understandable. I knew I was hallucinating but I wanted to see if I got closer to the vents I could hear what the voices were saying. No luck. It was gibberish upon closer examination.
It reminded me of the last scene in the book 2001: A Space Odyssey, where the food cans all have correct labels, but the food inside is all the same mush because the aliens could discern the labels from far away but not the contents of the cans.
The amusement continued when I lay in bed and watched faces materialize in the painting at the foot of my bed. I would continue hearing the doctor’s voice after I talked to him. I may have mentioned the hallucinations to the nurses, but I either didn't press the point or they weren't terribly concerned.
I stayed up late, watching “Shattered” until 1:30 AM. The next thing I knew nurses and people dressed in white were all around me, bending over me, bright lights. Now THAT is from a movie. I wondered what the heck was going on. One minute I’m watching a movie; next minute there is a room full of people bending over me, pillows and blankets stuffed all around me. At least I didn’t wake up with another tube down my throat. I was told that I’d had a seizure (two grand mal they later said).
An Asian neurologist stood at the foot of the bed and quizzed me about the faces in the painting. “Did you recognize the faces?”, he inquired. “No, I was just hallucinating”. He pressed me several times if I recognized any of the faces, as if somehow that made a difference. Maybe it does. But he was so serious, and so insistent about the facial recognition, and I could barely understand his English to begin with, that the situation almost became a comedy routine to me. I wondered if he was trying to figure out if I was hallucinating or had just lost it, gone over the edge, and was crazy.
They reinserted the catheter which they had just removed this morning. I think I had been given some medication to keep me relaxed after the seizures, but even through that haze the cathether was quite painful. I don’t know which was worse the breathing tube in the recovery room or the catheter. Inserting the catheter didn't cause me to panic, although I’m not so sure my private parts will ever be the same.
I had them call Janet just to tell her what happened. She got out of bed and came to the hospital, which I didn’t expect because of the late hour and the two hour drive. I was shuttled for a CAT scan, then back to ICU. Janet arrived when I was in ICU I think.

Sunday 10/22/00

Got me to ICU around 5 or 6 AM I guess. Slept on and off all day. Janet came again late afternoon. Phil and Carolyn came around 5 or so and stayed 1.5 hours. Carolyn rubbed my feet. Dinner came and she fed me. Phil had eye surgery on Friday. Janet left after Phil and Carolyn.
Ali, my neurosurgeon friend, showed up about 8:30 PM. Said I shouldn’t be in a hurry to go home, but to get all the meds and complications straightened out. He’s a neurosurgeon and HE didn’t ask me if I recognized the faces in the painting.

Monday 10/23/00

Moved to 6th floor again about 9 PM. My roommate, Barry, is waiting for a liver, on the list, but was sick so was admitted. He’s from New York, had been a heroin junkie. Talked until 3 AM or more.

Tuesday 10/24/00

6th Floor
Seth visited today on way to or from job interview with a headhunter. I made more phone calls. Talked a lot with Barry. His brother-in-law, Charles, is a movie marketing executive. He dropped by, quite distinguished dresser and manners, late 60’s I’d guess. Now working for an Internet-oriented company. I asked if it would be OK to contact him when I got better and he said yes. Mere days after liver transplantation the old Hollywood hustle instinct is recovering nicely.

Wednesday 10/25/00

6th Floor, Basement, 4th Floor.
Barry and I talked until 2-3 AM again. My heart started beating hard, fast, and irregular. I called the nurse and she determined that my heart was in atrial fibrillation ("A Fib" in hospital parlance). Took me to basement area for monitoring. It was an ICU-like area, actually a post-surgical recovery room, and not set-up as a room for a wide-awake patient. Very busy and noisy but the telemetry area was full, and at least this area had the monitors they wanted to hook me up to. Janet visited me. Every time she visits she has to search for me in a new location. Something keeps popping up and they have to move me to another room.
They finally took me to the proper monitoring floor, 4th floor telemetry, for overnight.

Thursday 10/26/00

4th Floor – 6th Floor 622A
Moved from monitoring floor to 6th. Dr. Haj, the cardiologist who did my angiogram last year, came to visit before I was moved. He said my heart is very good, no blockage and so forth, but is sensitive to medication or to the trauma of the surgery.
New roomie, Darrell, was Barry’s roomie before me. Nice person but talks incessantly. He’s also hard of hearing so blasts the TV audio.
Darrell is from Fresno or Bakersfield area where he says there are no support groups or other people to talk to about transplants. I realized that there must be many people around the US who aren't near a transplant center or a large enough town to have much of a transplant population. A web site on the Internet would be a perfect way for them to get in touch with other patients.
Lynette, my stepdaughter, called tonight about cooking the 20-pound turkey I was defrosting in garage fridge. Janet asked her to cook it and Lynette was freaked, she never cooked one before. I walked her through it – she couldn’t find my recipe info on my Macintosh.
Helping her through the turkey crisis was a warm touch of home brought into the sterile starkness of the hospital. It also reminded me of how all the plans and routines of life just keep going. I took out the turkey to de-thaw days ago and then someone in Arizona is killed in an accident, his family is thrown into turmoil, I’m plucked out of daily living, and by the way there’s a turkey in the fridge. “Dad how do I cook a turkey?” Refreshing isn’t it? The important things in life. Talked to her around the time the turkey was due to come out about 11 PM. Lynette proudly reported back to me that the turkey came out fine and was resting comfortably.
Stayed up late as usual so I’d sleep through the night.
Jim Crawford called from Maine tonight.

Friday 10/27/00

My ex-business partner, Gary, phoned. Producing a short for Universal who is breaking in a new director. Said he needed the money. Didn’t hear anything about book he's been writing forever. Gary said he’d visit me when I’m back home.
Janet didn’t work today, so she came in later afternoon and stayed until around 10:30 PM.

Saturday 10/28/00

Pete called. He’s a friend from way back at graduate film school at USC.
Arial was nurse during the day and he got me a newspaper. Janet came by for very short time on way to work. She keeps bringing items and leaving them out instead of putting them away, and I’m running out of space within reach of the bed. I’m cranky because of the medication and I’m feeling well enough to be irritable.
She wanted me to walk, which is quite a chore for me. I felt like she was badgering me which made me more irritable. I got up by myself, put on robe, and walked down hall in a huff without Janet’s help. Kind of funny, me “stomping” off by myself even though I was in lots of pain and couldn’t “stomp” anywhere if my life depended on it.
When I returned I joked that I must be getting well enough for her to get angry with me and her eyes reddened with tears. This whole process is so emotional for everyone.
Up until nearly 1 AM. Clocks set back an hour for Standard Time now.
Katherine is my nurse again tonight, gave her banana bread that Lynette made. Katherine has been nice and is going to care for me several nights. Anyone who is going to be around me for that long needs a prophylactic peace offering for being around me when I’m this cranky.
Janet brought mail, print outs of bank accounts from Quicken.
Now that I’ve had the atrial fibrillation and the two grand mal seizures, the docs want to keep me longer than the initially stated 7-10 days. I actually feel quite well and am becoming terribly antsy. I’ve turned my bed into a desk and sit in a chair beside the bed, making phone calls, and carrying on our personal business during the day.
Today I also started this journal of my liver transplant story.

HEADACHES AND OXYGEN

Sunday 10/29/00

Watched football during day. Ariel nurse today again. I have a throbbing headache again today, I think it may be because Darrell, my hard-of-hearing roomie, has the TV loud most of the time.
Sat up from about 10:30 to 12:45 when Janet arrived. Took walk. George and Lucille arrived to visit right after Janet left about 2.
Doctors did rounds today about 11. First time they rounded and met with me for 3 days. Watched 60 Minutes.

Monday 10/30/00

622A
Doctor woke me about 7:30 or 8:30. Told him about numb right thigh and left elbow and fingers. Being in the hospital and laying in bed is not good for my health.
Allison from Physical Therapy walked me, my O2 got low while walking even though I was breathing from the oxygen bottle at two liters. Told docs when we passed them on rounds. Sat up for about an hour and then lay down.
Janet showed up, surprise, about 1. Lunch came and I ate a bit and felt ill, couldn’t eat any more. Nurse Rafaela took Janet to talk to doc about me. Janet discovered that Rafaela is from Nicaragua, as is Janet, so now it’s, “Mi hija” this and “Mi hija” that – “My sister”.
Sleepy all day. Wrote in journal and got caught up on the first pass of it.
Chaplain Pam visited Darrell and I asked her to meet with me too. She said nice long prayer after talking for a while, held my hand. Watched TV, Monday Night Football.
Stayed up late to watch George Bush on Leno, presidential election in a few days. I had a problem again with the sleeping pill. I either lose them, forget taking them, or don’t realize I’m taking them. This time the nurse put it in with other pills, which I took and didn’t know it.

Tuesday 10/31/00

Splitting headache again today, about 2nd or 3rd day in a row. Gave me Tylenol and this time it worked. But later doses were less effective.
So initially my stay was going to be 7-10 days. Then the seizures, then the atrial fibrillation. Now I’m afraid the headaches are going to keep me here longer and I’m already feeling well enough to be out of here and chomping at the bit to leave.
Very sleepy all morning. Worked on mail and bills at my bed/desk office. About 1:30 some guy walked into my room with flowers who I didn’t recognize – wearing dark shirt and darkish tie. I had this horrible flash it was Dr. Esrason, head of the Kaiser transplant services. It was Eric Haagenson, my old high school friend, who I last saw at my 50th birthday party last year. I hadn’t seen him before that since 1967, so I suppose I could be excused for mistaking him for Esrason out of the corner of my eye. He sat down and we talked at least an hour or so.
The nurses told me that I’m not supposed to have flowers in the room. I gather that organisms grow on them and in the water as the plant material decays, so they take them away after a day or so. It’s best to have well-wishers bring something other than flowers.
I worked more on mail and bills. Janet arrived about 5 or so. Allison walked me for PT during the day, long walk, still desaturating oxygen, meaning I’m not getting enough into my blood stream. Ugh, the docs say that’s another thing to keep me here longer.
I’m surprised at how off-balance I am since surgery. Allison asks me to turn around and do other things that require balance and it’s quite disturbing that for some reason my balance is horrible.
Janet also took me for a walk. I was crabby due to headache, and I understand the Prednisone also makes a person irritable. I need to find more synonyms for "irritable" and "crabby". I'm uh, crabby, so frequently (all the time actually) that I need more words to express myself.
Janet and I just hung out for a long time, didn’t talk a lot because talking made my headache throb harder.
I finished bills and making register print outs for bill paying and explained to Janet.
Al Gore was in Westwood doing last-minute politicking this evening, blocking traffice and causing the 7 PM shift to trickle in late. I think the Westwood Blvd. and Santa Monica Blvd. intersection was, and maybe still is, the busiest intersection in the US, so I can only imagine what havoc having the Secret Service block off Westwood Village wreaks.
Janet left about 10, said she needed time tomorrow by herself, so I didn’t plan to see her tomorrow. Stayed up to watch Gore on Leno.

Wednesday 11/1/00

622A
Ultrasound of my liver in AM. The Doppler ultrasound is fascinating to watch, shows the direction of blood flow with different colors. Allison walked me again today. O2 better than yesterday. Didn’t wear girdle they gave me a while ago. The girdle helps hold me together, as if it keeps my insides from falling out (my imagined fear) and also decreases the pain because my body parts and organs don’t move around as much when I ambulate.
Mary nurse again. Flor, a black French (American and Chinese too) assistant, was quite attentive. Seth called, said he was thinking of me. Rewriting a script for Fox.
Janet didn’t call and I didn’t call her, figured we’d talk when she got to work and I could call on her 800 line. She surprised me by walking into my room at 1. Lunch came. The mother of a 51-year-old man who got a liver Janet met the other day in her class came by. He’s been here 3 weeks.
Found out from my nurse that my tube dressing should be changed 3 times each day, and the leg dressing two times – but I have to ask all the time. I’m also not getting some other items each day any more but they have not been discontinued off my chart. It’s the same thing with the blood sugar samples. Makes me wonder who is minding the store and reminds me that I must remain proactive and attentive to my treatment. I don’t think that I should be the one responsible for keeping things from falling through the cracks but that appears to be the way it is.
Katherine said that it sounds like I’m getting migraines, which she gets. She suggested cold packs and Tylenol – and it worked fabulously. Nurse Ferdie massaged my neck to help too.
Prednisone making me moody and crabby, impatient.

Thursday 11/2/00

622A
Allison walked me again. Walked backwards and turned for balance practice. I can see my balance improving. My O2 saturation when I woke up was 86%. Went up later. Occupational Therapist worked with me, brushed teeth. Sat up an hour or more and ate lunch sitting up. Headache coming back so got one Tylenol, helped some. Didn’t use cold pack though and headache never quite went away.
Susan, woman who called me in for the transplant, visited regarding going over medications with Janet and me. Janet came about 1. Joyce, post-transplant coordinator, came while Janet was here. Said probably go home Monday, so Janet has to take day off. Hopefully I’ll get to go then.
Rounds came by earlier while I was coming back with Allison. Woman came in again who was in my operation. I told her about things falling between cracks.
Sleepy in afternoon and dozed.
New nurses during day, Ronnie and Alisa – both women. Oxycodon to 5 mg last few days, need to get me on Vicidan before going home because Oxycodon is a narcotic.
About 1 AM pulmonology came in with machine to put over my nose. Very uncomfortable.

Friday 11/3/00

Mary nurse today, had her before. Dr. Sima came at 9 and took off nose apparatus. Mary was extra grumpy this morning so I asked her about what bit her. She said, “Has anyone ever told you you’re very demanding?” So I made an effort to say “Please” and “Thank You”.
The pulmonology physician walked me – Dr. Sima. Later he came back with another guy, Dr. Smith, his boss, to drain my right lung. I had them give me something to reduce the pain, as Sima had promised me earlier, and he fought for it now. One mg of Atavan wasn’t enough so he got me one mg more. He inserted the needle slightly to the right side to avoid the bumps/scar tissue from all the previous lung drain needles on my back, but he had a hard time getting needle in. Hurt a lot. That’s when I asked for the second mg of Atavan. They sucked out 1.5 liters. I could tell Dr. Smith was teaching Sima and I joked about me being an experiment.
I guess Janet came while they worked on me – she had to remind me on the phone later that she had visited me. Atavan erased my memory.
Slept a lot. Pulmonology brought in a Bird machine for treatments every 3 hours. Forces air into lungs when you breathe. My dad told me they used one on him when he was in hospital dying from lung cancer. Having to use one myself now brought back all the nightmares and fears I had back then, and still do, about not being able to breathe. I watched my father slowly suffocate when I was 22 years old, so now at 51 I find myself hooked up to the same machine. No wonder I am terrorized by the tube down my throat.
The Bird machine kicks in suddenly when I inhale, forcing air down my nose and throat. I’m totally at its mercy. It makes a lot noise on top of the sensation of something clamping down to prevent me from exhaling and at the same time forcing air down my throat. It is a very sudden, machine-like process, and I tried to figure out a way to soften the suddenness by altering my breathing pattern. Made me feel claustrophobic, very uncomfortable.
The doctors found out today that a nodule in my right lung is collapsed, so they hope that by using this torture device on me they can force air into my lungs and open that nodule back up.

Saturday 11/4/00

622A
My chest hurt so sat up about 5:30 AM.
Nurse gave me 2 Oxycodon because I told her re pain in chest. Slept more. Gabbapour came in, and then rounds. Pulmonology needs to check me out before bronchoscopy, which might not happen until Monday. I must use the breath/lung device frequently to try to clear out my lungs so I get more oxygen.
Dr. Smith came in to visit. He later came back with ultrasound to see if I my lung needed to be drained again. I talked him into doing the ultrasound, saying that if there is still more fluid in my lung then he has Sunday to drain the rest so that I can go home.
Talked to Janet at home about 10:30. She just came back from looking at mattresses. We have a futon mattress which is inches off the floor. We need to replace it since it wouldn’t work now that my incisions make it difficult to get out of bed.
Janet is having Lynette clean house for my arrival and is totally stressed out. I told Janet about the possible Monday biopsy, which will mean I’d have to stay another night. Janet became angry with me, saying I told her to take Monday off. I said I was merely relaying information that Joyce and the doctors gave me. She and I are both stressed out, I want to get out of the hospital, the plans keep changing on me because of more tests, Janet needs to work out schedules with her boss, and I’m on medications that make me crabby. We’re all entering uncharted territory, no roadmap, no nothing.
Rafaela came by, gave me a nice hug, now she’s “Mi hija” – my sister. She asked if Janet was going to visit me today. I said I didn’t know because Janet was angry with me. I told her the Monday story. Rafaela said Janet was just venting, not mad at me, and that she’s tired and overwhelmed. And that Janet loves me a lot.
Rafaela reminded me that until my incisions for my T-tube hole heal to not go into public. Germs can enter my body that way too.
Dr. Smith came back with ultrasound machine about 3:30. Still lots of fluid in my right lung. Said he’d get me 1 mg Atavan. I reminded him I needed 2 last time, so he approved that. I always feel like a druggie when I need to remind the docs that I have a high tolerance to the pain killers, but if I don’t then I’m the one who suffers. The needle insert went in smoother than last night but still hurt a lot.
Dr. Smith told me he hopes I won’t need a bronchoscopy.
Janet called about 2:20 from Kaiser. She was going to visit me but turned around and went to work because she didn’t have enough time to visit me and get back to work on time. She said she’s not angry with me. I said I could understand when I really had been crabby or demanding, but when the docs change plans on me and I require more tests that I have no control over that it really hurts my feelings.
The docs are still trying to figure out why I’m getting those terrible headaches, so they started me on Elavil tonight.

Sunday 11/5/00

622A
Started coughing and bringing up mucous early AM, so sat up in bed about 5:30 AM. Phlebotomist tried drawing blood but Hickman device plugged up. The Hickman really makes me feel like Frankenstein’s monster. It’s a metal device and tube plugged into my neck. All they need to do is hook up a couple batteries, charge me up, and I’m ready to go. I’m sure glad I haven’t yet lost my sense of humor.
The headache is still there in the background, lurking to become full blown. Nurse put ice on it. They still can’t figure out why I’m getting severe headaches.
Gabbapour came by in AM. Dr. Smith, pulmonologist, came by and said my lung had reinflated. He asked if I walked yesterday. No. He said he had put an order in for me to walk 3 times a day but the nurses didn’t do it. He’s said he’s going to put order in again today. Since the nurses tell me I’m demanding I made sure to have him say it while Nurse Pouran was in room, as otherwise I’d be labeled with the “demanding” moniker again.
Dr. Swartz came in and asked if blood had been taken. No, and I explained the clogged Hickman. He was upset at nurses. One more thing nursing has over looked. It seems like one must constantly be vigilant regarding ones treatment, which is difficult when the caregivers, the nurses on the front line, don’t like it when the patient is proactive.
Janet arrived about 12:30. She brought me cake a girl at Kaiser had made, but I can’t eat it because my sugar levels have been high. Se we gave it to Fiona with 2 apples. Janet doted over me, made bed, got me to brush teeth and sat me up to shave at sink. I tried a bowel movement with no luck
Claretta and Bentley showed up. She’s ER nurse supervisor. Went past 2 PM so we all walked down hall and they left. I stopped at a pulse/ox to check my O2 during our walk - 87%. Saw 2 docs a long way down the hallway and I waved at them when they turned. I motioned them to come towards me. I told them my O2 was 87% and Swartz said he’d like it higher but that’s not too bad. My nurse later told me I’d start talking goofy after 10 minutes at 87%, which I wasn’t. So sounds like there’s some figuring out to do re my O2/lungs and my headache.
Janet took me back and sat me down. We hugged and kissed – felt great.
Headache got worse in afternoon, wasn’t bad this AM. Watched political shows in AM – Meet the Press etc. Joann my nurse tonight and Carol assistant (I had her before) for PM shift.
I teased Joann about being the nurse we heard about being able to make pain fun because she has a great sense of humor. Got her laughing – she’s a player. She looked familiar and wore a thumb ring.
Watched Murder at 1600, football, the season premiere of X-Files at 9.
My roomie Darrell talked all day as usual, which is making me nuts. Mostly stream of consciousness and irrelevant stuff, out of the blue. He’s supposed to go home tomorrow. I can’t wait.

Monday 11/6/00

622A
Went BM a little this AM. I never thought this much about going to the bathroom before, but the docs and nurses are right on top of it. Mary, the grump, and Robby nurses again.
Sat in chair and read LA Times.
Robert, Darrell’s “millionaire” friend arrived to take Darrell back home to Fresno. Exchanged email and other contact info with Robert.
Janet arrived about 12:30, brought a shirt, underwear, black sweat pants for Darrell because he had no clothes.
Migraine not bad today, perhaps the Elavil is staring to work. Dr. Sima walked me without O2, which was 85% or so. So later he brought in another pulmonologist with more experience. He said surgery often causes the desaturation and it will go away. Also my lung is used to having fluid in it and wants to fill up for a while. He didn’t mind me going home with O2, but sounded like I’d need O2 for at least a week or two. He doesn’t want to do bronchoscopy until very last choice.
Janet fussed around so much that she was making me crabby. She immediately wanted me to walk – but I told her I have to have O2, so had nurse order it. My warm lunch came and she wanted me to walk first. As soon as we got back she wanted me to use breathing device.
I walked fast; she couldn’t keep up while schlepping the O2 bottle. Walked by doc office and said hi to Swartz and Gabbapour. Then Spanish woman surgeon who was in my surgery was in hallway. She doesn’t want me going home on O2. Think I may go home at end of week, and she said I could order any food I want brought in. Then ran into Dr. Ghobrial, who I understand did my surgery. Shook hands. He’s a big Egyptian. I’m 6’3” and weigh 230 pounds. He is easily larger than I am. His size and features reminded me of one of the bodyguards I had while filming in Egypt. His hands are much bigger than I thought for a surgeon, which I pictured must be more delicate in order to get into the tight spaces in the body. I asked him if he actually put my liver inside me or if it was Dr. Busuttil. Dr. Ghobrial said that he, Dr. Ghobrial, did it himself. I took his hands with both of mine and shook them fervently. This big man had saved my life and changed it forever.
Went back to room and Janet left soon as she could to get to bank. I asked if I was crabby. She said yes, but it was that it was OK.
Darrell and Robert left a couple minutes later. Nice having the room and quiet to myself. No more incessant chatter. Darrell said, “I love you” as he left. We had spent many hours sharing our lives with each other.
Laurie came by, the Sirolimus study lady. She said I looked a lot better than last Friday when I was crabby and upset. She said something about me looking younger. I told her Robert thought I looked 40. I teased her that if I were really that young I’d start chasing around younger women. I said Laurie would be #1 on my list. Trisha, the new PT waiting outside, said, “I’d better be #2”. She took me for another long walk. Ran into Gabbapour again.
Sat in chair again upon return, wrote in journal.
I’ve noticed my speech seems to stutter a little, like when I take codeine, but not as badly. My demeanor is less crabby, but I’m still somewhat out of sorts. Each day I’m less sore, but I am also on 3 Oxycodon every 3 hours when I request it.
Sat in chair by the side of the bed, wrote in my journal, and had TV on all afternoon. I’m trying to find things to do, so I puttered around the room and cleaned it up, the sink. Brushed teeth and washed up. Didn’t go to bed until about 8 PM. Nurses told me I was NPO (can’t have anything to eat or drink) at midnight, but no one told me what I’m NPO for. I watched TV, Leno and Letterman.

Tuesday 11/7/00

622A
Found out in AM my NPO is for bronchoscopy, which I figured. Dr. Sima and head guy Dr. Smith came by. I made point about waiting to be knocked out, not just “not remember”. I don’t want to feel it but simply not remember it. Sima said he’d see me 1-2 PM.
George Miller dropped by about Noon and as usual he did most of the talking. Michael, new roommate, admitted. He’s donating kidney for his wife. Surgery tomorrow.
Transportation came at 2, put me on gurney and took me to OR. Sima in there joking with crew – mainly men. Male nurse with earring hooked me up. I made point about wanting to be knocked out, not just “ not remember”. Male nurse joked about who I wanted to win the presidential election, then he’d decide how much med to give me. He said male nurses always give more med. And he said that he also, like me, has a fear of suffocating.
Combo of Versed, Demerol, and other drugs to knock me out. I asked Dr. Sima if I felt anything if he would take me to dinner. He said if I remember this conversation he’d take me to dinner and we shook hands on the deal. Nurse gave me my shot into Hickman and next thing I knew I woke up in recovery area. Took only about 20 minutes. Didn’t find any blockage or problems.
Got back to my room about 3:30-4. Throat was a bit sore but OK.
Watched election results starting about 7. Roller coaster night with electoral votes. Florida projected to Gore, then taken away. Then Bush declared Presidential winner. Then taken away. Two huge screw ups by the networks. Fascinating to watch as a media person myself. Stayed up until 1 or 2.

Wednesday 11/8/00

622A
Gabbapour awoke me. Looked at incision on thigh and took out a staple. Surprisingly I didn’t feel it. He said it looked like it was healing fine.
I took walk by myself. Ran into Swartz and other doc and they were pleased to see me walking on my own. I said I was looking for the dance and they laughed. Came back and sat in chair.
Michael, roommate, taken to OR about 9 to donate one of his kidneys to his wife. I sat in chair and wished him well.
Trisha, PT, walked me again. 5’11” blonde. I told her my high school girlfriend was a 5’11” blonde. We talked all along walk down long hallway. Ran into Rafaela at beginning, then again by nurses’ station and chatted. Then Trish and I walked to Pulse-Ox, I was 92%, 72 heart pulse, which is good news.
Sat in chair when I came back. Janet arrived about 11. She looked tired and was not in a good mood. She said Lynette is on her s..t list. Lynette didn’t help her pick up our new bed for my homecoming. Then Lynette wanted to drive her to Ventura College. Lynette has been giving Janet a multitude of problems recently.
Janet brought mail and was completely spaced. I started to bring up that she has been letting some of the bill-paying slip through the cracks, but when I heard about Lynette I realized I was on thin ice. She left early, before 1, to get to bank and other places. She called about 3:45 and apologized for being out-of-sorts to me.
I received a letter from the American Liver Foundation saying Ali and Linda Day have contributed to my Liver Fund as of 10/24.
Nurses pounded my back every 2 hours. Dr. Bellamy, who did my bronchoscopy, came in as I was leaving message for one of our tenants, who told Janet plumbing is plugged up.
Janet brought Almond Roca type candy and an avocado for my nurses.
Got back in bed about 4:30 to have back pounded again. On Vicidan, 2 every 6 hours.
No bowel movement all day. The medical staff’s constant monitoring of my bowel movement function, which causes me to have to talk about it with them, reminds me of when I was a kid hearing all the “old people” talk about bowel movements, problems chewing food, early-bird restaurant hours and the like. Makes me feel old hearing myself talk about it. This is however a major issue, because they want to make sure your body properly "wakes up" after being so deeply depressed under anesthesia. Also the surgeons are required to heavily rearrange your intestines in order to perform the surgery, and your plumbing sometimes doesn't work property after they put you back together.
The latest news is that Bush’s tiny lead in Florida is dwindling. Possibly get this recount done by 5 PM tomorrow.
Watched news, new show on time traveler gents who change disasters in past. The Star Trek Voyager. Remember seeing time traveler show last week and telling Darrell about the realistic computer animation.
Mary Jo is nurse tonight. She said she took care of me when I was in 610. I’ve been moved around from room to room so much I’m lucky I remember what room I’m in now. The docs told me that it’s quite unusual to be moved around as much as I have been.
I may call Lynette tonight to talk to her about the importance of helping Mom.

Thursday 11/9/00

Slept in. Gabbapour woke me up. Then Nurse Minotz woke me. She pointed out I didn’t take 6 PM meds from last night, Prograf, magnesium etc and that the nurse missed it. Then entire night shift didn’t notice. She was not pleased that so many nurses failed to notice something as important as taking my immunosuppressant.
I felt spacey, depressed, confused all day. Janet called, can’t get the computer to print out the check register from Quicken. I had hard time figuring out why because I’m feeling pretty confused myself today. And I started to become annoyed at Janet, which I didn’t want to do, but the medication makes me terribly irritable. Janet eventually figured out the printing.
Allison walked me, pulse-ox said myO2 level is 92% and I wasn’t hooked up to O2. Sima walked me later, woke me up from nap after Janet left. I think I went down to 88% but I could be wrong. He thought maybe there is still one liter of fluid in my right lung but he believes it will be assimilated by my body.
Janet woke me up from nap about 12:30. Brought print outs, lemon bars and the recipe for the docs who wanted it, and another pile clutter. I told her she has to stop bringing so much stuff. There is no place to put it all, all the drawers are full, closet is full, and every table, chair, and level surface is occupied. So she took some of the items home and put things away, I could tell she was getting upset with me, but the nurses have been commenting on how cluttered the area is. She said Lynette was real nice this morning, and asked what I said to her on the phone.
Janet took the lemon bars to the doctor/intern room down the hall. Since Janet works in ICU herself, she is acutely aware how seldom the patients express their appreciation to the staff, so she makes a major effort to think of things to bring them to show our appreciation. And since I’ve become so demanding and irritable the staff probably does need an extra dose of appreciation. Combat pay.
Napped, Sima woke me and walked me.
Later I used by breathing device, my oxygen level without breathing O2 was 97% a few times.
For my dinner I’d asked for hamburger, fries, and pizza. Someone crossed off hamburger and so the kitchen genius put fries on my pizza. No wonder I’m crabby.
UCLA has a wider variety of food choices than Kaiser and generally it tastes better too. I wouldn’t call it savory but it is a higher quality sawdust. But after nearly a month almost nothing looks good off the menu. The best items for me are cereals for breakfast, fruit, and a can of Boost for every meal. I developed a taste for Boost so much that I had Janet bring some home from ICU for months after my transplant.
Chatted with Michael, my kidney-donor roomie. He’s a librarian at Occidental College (I was all set to go there as an undergraduate until I changed my mind at the last minute and went to USC). He’s also a writer and wrote a number of TV scripts. Yes we’re in Tinsel Town, can’t get away from it even with 12 tubes in you and in the Recovery Room.
Dale, one of our tenants, returned my call about the plumbing, said I sounded drugged on the Friday when I first called. He’ll get plumber for his sink problems.
My heart felt as if going into atrial fib again, so I told the nurse who was with me. She checked, and my heart was beating irregularly at 85. Doc advised her to take my EKG. Woman and assistant from my team came. She said I’m doing very well; my liver values are better than hers. She brought up that it’s usual to feel anxious about going home, which I hadn’t thought about but realized that perhaps I was a bit anxious about going home.
Got my prescriptions for meds, 12 of them. Laurie brought my Sirolimus for the study (yes I get the real Sirolimus not the placebo). She won’t be here tomorrow because of Veteran’s Day. Nurse Linda on duty tonight, said she was my nurse weeks ago.

Friday 11/10/00

Slept in, Gabbapour woke me finally. Had breakfast and watched some election hoohah. AP reports on all precincts have Bush ahead by about 237 votes in Florida. Talked to Michael a little. He’s going home today after donating his kidney. His wife will stay a few extra days to recover.
Phoned Janet, she’s not coming today on day off so she can prepare for Monday. Wanted to know what food I wanted because she’s preparing for a Costco run. I told her doc said people are often anxious about going home and I thought maybe she was too. She denied being anxious. Then she said she wanted to do Costco and other things today because she wanted to be home the first couple days with me and afraid of me being alone (but she’s not anxious).
I told her I’m alone here now, take walks by myself, go to bathroom, brush teeth, and wash up, not on O2. I jokingly said if she were home all the time the first couple days she’d make me crazy trying to take care of me too much.
Lynette off school today, Janet said she’s being fairly helpful. I phoned GMAC regarding an impounds problem. In the middle of transplant surgery we’re wrapping up paperwork refinancing a couple of our houses. Being on medications that make me irritable combined with having to deal with people on the phone to resolve problems with financial transactions is not a good combination. The irritability is so hard to avoid. When I am mean or just plain nasty with Janet I’m instantly repentant, yet one minute later I find myself welling up with venom.
Got message from Jim Crawford, who emailed me saying he lost my home phone number. With my bed set up like a desk and a phone in hand, I can sit all day and take care of business pretty well. It also keeps me sitting up, active, and out of bed, which please the docs.
Mike left for home minus one kidney, I took long walk and checked my O2 several times. I stroll from one unused pulse-ox machine to another and hook myself up. On this walk I was 91-94% and pulse was in 60’s to low 80’s.
Barbara called back re escrow accounts mess up on the refis, and I was short with her. It’s not her fault that some of the paperwork was not done correctly, that was a escrow company issue, and she’s my loan broker and on my side.
My new roomie is an older man, another hard of hearing roomie who keeps the TV audio too loud, and I knew it would be a constant battle trying to get him to turn it down. The migraines, meds, and irritability all mixed together was bound to create a witch’s brew. I asked the nurses if it would be possible to move him, which they eventually did.
Watched election stuff, then Leno/Letterman/Politically Incorrect until after 2 AM. The late night comedy shows have been having a feast on the election, especially now with the Florida ballot count imbroglio.

Saturday 11/11/00

622A
At 5 AM a man was admitted in bed next to me for liver transplant. He and his wife talked loudly and incessantly. I woke up about 7:30 and talked with them, told them to ask me any questions they had on their minds. It felt good to help them feel a little more comfortable by talking to them.
Transportation took man to transplant about 8:30 AM.
I actually had a bowel movement this morning, ta da (stool softener last night, the wonders of modern medicine).
A new roomie brought in while I was in the loo. A Pakistani man with two brothers with two wives. I cleaned up at sink and brushed teeth. I guessed he was Indian at first, then remembered his name was Ahman (Muslim “Mohammad”), which would put him in Muslim Pakistan rather than Hindu India.
I let them know if they wanted to ask me anything it would be OK. So they asked me many questions and told me quite a bit about him.
He has Hep C from 1984 transfusion. He’s not doing very well, I wonder if he’s going to get a liver in time. I truly am blessed by the Lord for my good fortune. I can’t shake the feeling that He has something for me to do that He is keeping me on this Earth for. For now I try to help people who are waiting for a transplant.
Sat in chair, Alisa made bed while I in the loo. Janet arrived about 1:30. Working today. She brought me a new watch. I need one with lots of alarms to remind me to take my meds but I don’t think I like it and also not sure it has enough daily alarms. Very sweet of her, but she’s not usually good at picking items I like. I’m plum picky anyway. And I now gather that I’m demanding, irritable, and downright ornery it’s one heck of a combination to try and please me. Janet also brought my wallet and red robe. We took walk to windows overlooking helipad and beyond. My O2 was 91%. She left about 2:15.
Nurse did my dressing and I slept for hours. Woke up to George and Lucille, his wife, standing at front of my bed about 5 PM. Left about 5:45. They brought me a brimmed hat to keep my immunosuppressed lily-white skin out of the sun.
Back of neck hurt, migraine lurking in the background waiting to pounce. Nurse Alisa brought to my attention that there are some cafeteria items that aren’t on my menu but can be ordered, so she ordered a burrito to be added to my dinner for variety. Ate the meat out of my burger too.
I look forward to each meal as if I’m awaiting the start of a sports event. I listen for the clanging of the plates and the hint of the smells of food. The more intense the noise and aroma, the closer I know I’m getting to food.
Not much to look forward to because home is so far away and Janet’s 3-11 PM ICU schedule is such that she can’t visit and/or stay very long. I don’t relish reading because my concentration terrible, so I must reread so much that it takes me ages to get anywhere in a novel. At least I have a few cable channels here. Watched Devil’s Advocate for the first time, quite good.
Nurse brought some cold packs to help with headache, which I place at the base of my skull and which seem to abate the pain.
Lou and Laura called, the patient in bed next to mine when I came in to prep for transplant. He’s enjoyable to speak with, sense of humor, and has traveled around the world as I have, so we have a kinship besides both needing new livers. He and Laura own an interesting business – they sell salt water. They tell me most people react as I did initially, that it’s like selling air or sunlight. In any case they have a ship still bureaucratically detained in the Marshall Islands, which is still a humorous topic for them to talk about, which becomes less humorous the longer it is stuck.
Saturday Night Live had some very funny skits on the Gore/Bush hassle. Skit on Al Gore showing why the ballots were confusing to the retired or minority Florida voters, explaining that they were not told which was up or down. SNL can still get away with the non-politically correct, and this issue is pure fodder for them. Went to sleep about 1:30-2 AM.
Woman came in middle of night to check my O2, it was 88% I think. She said perhaps I just breathe shallow. She said maybe I should sue O2 at night but changed her mind.
Watched USC lose to Washington – again. UCLA lost to Washington State so that eased my pain a bit.

Sunday 11/12/00

622A
Slept I late, intern took blood, rounds. Woman fellow and two new interns. Very sleepy. Finally got up about 8:30 and attempted a bowel movement but mainly gas. I informed the nurse that the toilet seat was dirty from roomie having diarrhea and I cleaned it with alcohol. On the one hand the medical staff tells me to not drink the tap water, takes my flowers away because of germs, and on the other hand allows a dozen visitors with runny noses to visit my roomie or maintain unsanitary conditions. It’s enough to make me crabby.
I felt so sleepy I didn’t care if Janet came and wanted to give her some relief from the two hour drive each way. I left message on machine 11:45 telling her she need not visit today. Janet phoned about 1:15 to say she didn’t want to come anyway because she’s still getting house ready for me. My goodness, what housecleaning is there left to do, she’s been saying this for weeks and she’s still fretting about it. I’m glad that she’s not anxious about my return home, I’d hate to see how much of a dither that would generate.
Janet said everyone at church was asking about me and told them I’m coming home tomorrow. She said she was busy working on the house. I told her that I’m lonely and I watch other people have visitors and I’m here alone. She said she’s “down to the last wire”, another humorous Janet-ism, and to “not pullout the last wire”. She said she shouldn’t have called because I’m making her feel guilty. We hung up on kind of a sour note.
I don’t know why I made her feel guilty, especially after leaving a message that it was OK for her to not come today. Maybe that’s just my nature.
I’m feeling sleepy again all day. Kept falling asleep while trying to watch TV. Headache in the base of my skull on the left is growing in intensity.
Nurses said they’d get a commode for roomie so he wouldn’t defecate all over the bathroom. Alisa RN said his tests showed nothing abnormal in his stool so not to worry. I said I still didn’t feel comfortable cleaning up after him.
So tired today, don’t feel like walking or sitting up. Can fall asleep in middle of writing here or watching TV. Sometimes I catch myself as soon as I fade out and come-to with a start. Watched Devil’s Advocate again, Murder at 1600 again, Red Heat, some football.
X-ray came at 5:30, I didn’t know about it. I could see that my right lung looked better than it has for months, but the tech said there was still some fluid in it. I felt grumpy as girl wheeled me so I kept my eyes closed so I didn’t have to look at people in hall as she wheeled me back to my room. The headache migrating to the top of my head. Ears ringing more this evening.
Pakistani family brought about 10+ people to visit with a kid or two sneezing, germs. Docs tell me not to go out in public, and they let the public in my room. I asked nurse about it, and I asked if she could get them masks. She brought me one, none for them. She said she’d limit the number of people. She reminded the group that they were limited to two visitors at a time.
Watched Married to the Mob, then x-ray took me. Janet phoned from work as soon as I came back about 5:45. Neighbor helped her take our old mattress out and put in her car, drove it to work to sell it someone for $50. I apologized for being crabby earlier. She was OK, said she knows I’ll have good days and bad days.
Watched X-Files at 9. Went to sleep about 11. Roomie had TV loud, nurses brought him an earphone but he didn’t use it.

THE GREAT ESCAPE

Monday 11/13/00

622A
Slept I late again. Guess I wore myself out those days I sat up all day, walked a lot, on phone dealing with business.
Laurie came in to DC me with Sirolimus study stuff and Janet arrived while she was here about 11.
I’m still tired today and increasingly irritable. Don’t know how much is the meds, the exertion, migraines, or just being tired of being here – same food, particularly annoying roomie this time, nothing to do.
Janet arrived wearing blue pants suit and a blue jacket. Looked pretty. Dressed up to take me home. I noticed her temporary top front teeth don’t look good; piece between teeth had fallen out a couple days ago. Also seem to be giving her an overbite, and the gap in tooth is making her speech sibilant. After all the care and love she has given me, I felt so sorry for her. Also noticed her tummy and bra peeking between buttons – she’s been gaining weight – a result of the stress she’s been under.
Doppler ultrasound about 4:30, Susan explained the medications and other items she needs to go over before I’m DC’d with Janet while I was gone. I was fascinated to watch the blood flow on Doppler and I peppered the tech with questions. The ultrasound jelly/fluid burned when it got into the staples on my stomach. Three women ventured into the ultrasound room while the while doc checking out my groin area – perfect timing. Janet made two trips to the car with stuff and loaded up when I wheeled down.
Mr. Akin (a medical student who is Turkish/German) took out my staples. Janet saved the staples in specimen bottle with alcohol. Also saved my Hickman.
I feel quite vulnerable in my going home in my condition.
Now the anxieties surface.
Last night I had a nightmare of people breaking into the house, a gang, and I’m terrified that they are going to cut me. I’m helpless. I try to decide if I should show them my incisions to show them I’m helpless. Then I fear that they’ll decide to cut me since I’m already cut. Whew, the anxiousness is boiling to the surface and I didn’t even realize it was there.
I’m afraid of my incision popping open if I laugh, or while walking down the sidewalk. “Oops, my insides just fell out, excuse me”. I have an uncomfortable and unfamiliar sensation in my tummy anyway. The skin surface is numb but I feel the incisions. Feels like I’m wearing a girdle, feels tight around tummy.
Nurses finally got a wheelchair. Every minute that goes by I feel as though I’m that much closer to leaving this place. I’ve been ready for a couple weeks, but little issues kept popping up that needed to be resolved, starting with the grand mal seizures. But now I can almost smell the fresh air with no alcohol or sickness smells in the air. Janet wheeled me downstairs, down elevators, up hallways.
Every inch was filled with anticipation. I’d been waiting for this moment for weeks, pictured it in my mind.
We were literally at the door to the parking garage, the car maybe 30 feet away on the other side of the closed blue door.
Then Janet had an inspiration, a flash from the heavens: she wanted to take me up to the 7th Floor ICU to thank everyone. I was this close to freedom. Inches away.
Captive in the wheelchair, Janet turned me around and wheeled me to the 7th floor ICU to have my picture taken with the crew and get an ICU shirt. The staff was delighted, one of the nurses ran to get a Polaroid camera so that they could restart their photo collection of successful transplant patients on their bulletin board. Someone else tore down all the old photos that were moldering on the bulletin board from goodness how long ago, so that my picture could be #1 on the new-and-improved photo collection of happy transplant patients.
We posed for several shots, lots of hugs, and I was trundled away. At this point I wasn’t going to believe that I was out of there until I was actually strapped into the car and out of the parking lot. Thought I’d never get out. As Janet wheeled me along the now-familiar escape route I hoped that she received no more brainstorms. She didn’t and I finally saw the world beyond the window and breathed real, fresh, LA smog. Ahhh.
We cruised up our favorite route home, up the Pacific Coast Highway, through Malibu, surf, sand, blue and beautiful. Janet was hungry, so we stopped at McDonald’s in Malibu. I wasn’t hungry, I just wanted to get home, so she ate a banana and gave me my meds in the car in parking lot.
The temperature was nippy when we pulled up the road to our orchard. Now I was required to confront another of my concerns – being able to climb the 14 stairs up to our porch. That was all that stood between my home and me. The stairs were no problem what-so-ever and Lynette greeted us, glad that I was home.
I greeted the mountains across the valley, standing in the spot where I said au revoir a month ago.
Another concern I had was that since my abdominal area is so weak, as are my legs, that I might have a difficult time getting up off the toilet. I could imagine being stuck all day with no one home, feet and butt falling asleep, until someone arrived to rescue me. When I had been confined to my bed in the past Lynette has to empty my urine container, uncomplaining but not happy about it. So Janet and I teased Lynette that she’d have to help me off the toilet when I got stuck. Lynette feigned her usual histrionics and we all had a great laugh. It was great to tease her and it sure felt like home.
I ventured into my office, and was struck that the date, 10/17, was still on my turnover calendar. I decided to never change it.
The new/used bed from Sandy was too soft and hurt our backs, but I was in my own bed and happy to be there.