Day 3 - Wednesday

March 31, 2004

It's 7:30 AM, and I wake up at the Travellodge confused, but comfortable. I get dressed, make coffee in the tiny coffee pot, and open the windows onto the downtown street. At 8AM, I called Enterprise Rent-A-Car to come pick me up and take me to their offices to rent a car (a promise they had made during a phone call the night before). At 9AM, they called back and said they couldn't do it -- they didn't have a car -- spring break, wrong location, any excuse -- WHATEVER.

So I got out a phone book and called Dollar Rent-A-Car. OK, so they get some kind of award. By 9:15, they had picked me up, and by 9:30, the car was rented and I was given perfect instructions on how to drive back to the hospital. Along the way, the driver told me that the cherry trees were blossoming this week, and they only blossomed for about a week. The streets were lined with them.



I had not noticed until he mentioned it. And once I noticed, the town seemed overwhelmingly full of them. The picture above is a tree that stood outside the Liver Lodge.

By 10, I was in Gary's room. He had already seen several doctors, and was very positive. I guess he thought about things. That's the only way he could be. He was polite with everyone, but there were more tests to take today -- a lot more -- and they denied him breakfast. At 11AM, I went downstairs and brought up a bagel and cream cheese, which I ate on the sly so he wouldn't have to watch -- but he still saw it and told me to eat somewhere else next time. I don't know if he ever got to those chicken breasts, but they were gone from the drawer of his nightstand.

They took him back to radiology for something. I went down there and waited until they took him back to his room. He knew I had rented a car and he was happy about it -- and he didn't want me waiting around in his room for them to take him to more tests. I told him if they'd let him out for a bit we could go for a drive and maybe see the coastline this far up north. He said it was nothing to look at. I went downstairs at 1PM and ate a hotdog. Really bad idea. I checked in on him, and he told to put miles on that car if I was being charged by the day, I wandered around the hospital and took some pictures. I read the newspaper. I didn't want to leave.

Later in the afternoon, one of the Cardiologists and a team of residents came by to listen to his heart. It was Dr. McMurty - not his usual cardiologist. I think they wanted to all hear his heart as a learning experience. He was in good spirits about it, and let them all put stethescopes on him and hear him tick. Dr. McMurty though looked like she had just been up for way to long. She would talk about how well his heart was working to her "class" and then they'd listen -- she told him to take deep breaths, then normal breaths, and all 5 or 6 of them had their stethscopes to his back. At one point, she said "can you stop breathing now?" He said "that's what I'm in the hospital to avoid." All the students laughed. She just had this blank stare on her face for a moment ant then said, "you know what I mean." It was funny. Guess you had to be there.

At 3PM, they came back to his room to take another sonogram. Said they'd lost the one from yesterday. I waited in his room.



There was a rainbow that you could see from one end to the other from his window.


Finally, he got to come back and eat. His nurse was basically useless. She ate lunch for an hour after he asked for a pain pill. He had also asked repeatedly for his Spirolactine - that he understood worked with his other medicine, but no one would order it for some reason. I got in the nurse's face when I found her in that breakroom eating. She kept saying he was asking for a shot. She was nuts. But everyone was saying that Gary said things he didn't (like he wanted a shot). I was there -- they said he said crazy things because he wouldn't take his Lactulose. I saw him drink that stuff. Finally, they brought him a pain pill and some food. Blood pressure 110/67. He wanted to sleep and for me not to watch him. He also wanted some Prep-H. I studied the maps I brought and found a near-by Walgreen's, where I went and got 2 out of 3 of my prescriptions filled.

I also had no Internet connection. This sounds minor, but keeping track of everything in one place is so important to me that I'm entering all this stuff now and re-living it. Don't know if it's healthy for me or not, but I feel like I need to do it. If I would have been able to be on the net, I would have somehow felt better and less alone.

Somewhere, I heard you could hook your cell phone to your notebook for a connection. Since there was no phone line at the Lodge, this sounded like a way to get back online. I mean, that's why I bought this groovy notebook anyway. I found a Radio Shack and bought a cable from them. But they said I needed the software. So I had to drive to another Radio Shack to get that. I also got a small Grundig shortwave radio on sale that both Joe and Gary would love. I needed to listen to NPR to sleep right. By 7:30, I was back at the Liver Lodge with Taco Bell and all of what I thought were the necessary components to get online. I managed to avoid everyone there and get in through the back door. I figured that if they disliked me for my aloofness and my cell phone, they'd really hate it that I had rented a car.

I had no luck with the connection. Somehow, the software wasn't working and you know what? I didn't really care. Spent time on the phone with everyone after chowing my tacos, and then I crashed alone in that wonderful Lodge bunk.



I wanted to just pack up and leave that night. Move out of there -- what was I doing there anyway? I needed to get a hotel, or something -- but it got late, so I stayed and decided I'd figure things out in the morning.

Day 2 - Tuesday

March 30, 2004

Gary can't sleep. He's so paranoid we won't make it to the 7:20 bus that he wants to be up early. Last night, I convinced him to take his Lactulose solution, and when he wasn't worried about getting to the bus, he was in the bathroom. Kept the whole Lodge awake.

We called home around 6:15AM and talked to mom. Told her to talk to Dr. Kahn. By 7AM we were on the Vancouver bus. Too early. We had to wait for 20 minutes to roll. I got back out and bought a newspaper. Gary was looking for Spurs basketball scores. I was preoccupied with the classifieds and how the state lottery chairman was cheating the state really bad. Finally, the bus takes off. Unfortunately, I don't pull out my video camera and take shots from the bus. I think about it, but then I think that maybe it would embarrass him.

At 8AM, we're on the 4th floor of the hospital, checking in at "short stay care" for the "procedure" that neither of us are certain of. They take Gary in the back and want me to wait in the tiny waiting room, but I ask if I can just come back since other family members (wives, sisters, etc.) seem to be going back with their guys when they call. They let me go back with him, although they're worried they don't have enough room. There's plenty of room when I get back there. They make Gary change clothes, although we haven't agreed to anything. The nurses promise that Dr. Ives (who will actually be performing the "procedure" and the head of liver surgery, Dr. Orloff, will be by to talk with us first).

At 10AM, Dr. Ives shows up. I have a list of questions to ask him. So does Gary. It's clear that he doesn't know all that goes in to a liver transplant. But at the same time, Dr. Ives seems good, and he answers our questions well. We're relatively satisfied. They will do an anthroscopy, and then decide if they can do the chemo. Gary will be awake through all of it. He keeps saying that he'll be able to tell if the guy is "all thumbs" and not capable of the chemo. The chemo is kind of scary; it all depends on the main artery running through the liver. If the cancer is isolated, that is, if it's not near or utilizing the main artery for blood support, they can use the chemo to make it smaller. Gary agrees to sign the consent form to have the procedure done when they take him down to radiology on the 2nd floor.

Then a psychyatrist showed up. She resembled a bird. Some kind of crested water fowl. Anyway, she wanted to move Gary to another private room to talk, but he said talking where he was would be fine. He had no secrets. She asked him about delayed stress syndrome. I noticed at this point she had moved her chair far away from striking distance. He said he couldn't explain it to her. There was a long pause, then she insisted. He said it was as if the hospital blew up, and 3/4 of all the people she knew were dead. He asked her how she would feel. She just bobbed her head. He thought he did fine. I said nothing.

I sat with him for a while after Dr. Ives left, and when they started bringing in IV's and getting him on a gurney, I left and went down to radiology, expecting to meet him there.

I found the place and prepared to camp out. This thing could take a couple of hours. But after 20 minutes or so, he didn't show up. So I went to the desk to ask. The clerk was confused. She said he was scheduled, but he was still on the 4th floor. She didn't know why. So I packed back up and headed up to Short Stay Care. They gave me a particular nurse's name, who I looked up. She took me to Gary, who still thought he was waiting to get up to the 4th floor for the procedure. I told him it wasn't happening, from what I knew was going on. Neither of us could figure out why. Someone came in and told me I had to leave -- this area was only for patients and nurses. I asked where they were taking him. They said they were checking him in to 9D shortly. So that's where I headed.

At 9D, they didn't know he was coming. I waited. Didn't know if they would take him to the fourth floor for the procedure and then to 9D or if they were sending him straight to 9D. I went back to the fourth floor, and they said he wasn't scheduled. So I headed back to 9D and waited some more. At 12:30, he finally showed up in 9D. The rumor is that he refused to consent to the procedure. This is not true. We will discover this later.

Between 1PM and 4:45PM, I shadowed him through procedures all over the hospital. Sometimes, I wasn't sure where he was, they moved him around so fast. Sometime, during this fun, I ate a sandwich and a bag of chips, but Gary had nothing. They took 17 more vials of blood, did a CAT scan, an Echo and a sonogram.

At 4:45, they took him back to a really nice room in 9D, where they finally allowed him to eat. They had brought the food in at noon, but told him he couldn't have any, since he had all these tests to take. So after every test, he'd get to come in, look at it for ten minutes, and then go to another test. At 4:30, this whole thing irritated me, and I went to the canteen before it closed and bought two chicken breasts (skinless and baked) and some mashed potatoes and took them back to his room, placing them on top of the 4 hour old lunch they had left for him. When he arrived, he asked me to hide them in his nightstand. He didn't want to get in trouble for eating unauthorized food.

Emmett, the nurse, took the lunch to the microwave an heated it back up. Gary ate and swore it was wonderful. He told Emmett he really wanted to talk to a doctor. Gary and Emmett really hit it off. Both hunters and fishermen, formerly heavy equipment operators; Emmett had even lived in Texas (a bit north of San Antonio) for a while, so he knew what we were coming from. He paged a doctor, and finally at 6PM, a resident - Dr. Nicole Wheeler - showed up. She talked with us a while and did a perfunctory physical exam. She said things showed up in Gary's levels that made Dr. Ives not want to do the procedure. She said that test he took today would answer a lot of questions he had. She was nice, but almost too kind. Gary was discouraged. And cranky. I don't blame him. He had been through too much today to be positive. Which is the lecture I gave him. He had to remain positive. It is important to everything overall -- the doctors even treat you differently if you have hope. I kissed him and made it to the 6:15 VA bus, even though I thought I would stay longer and just take a cab back to the Lodge.

I made it to the bus though, and sat in the back with a guy that looked a lot like an old friend of mine - Jody Moore - but this guy was much more preoccupied with pop corn. He was like the RainMan of popcorn. All kinds of pop corn -- and things you could put on it. I thought about whipping out the camera, but with popcorn rainman next to me, it would have been too strange. Looking back on it though, it certainly wouldn't have been any stranger than he was.

In any case, I had to get out of that oppressive lodge. It sounds weird, I know, because it was only 2 nights there now, but I couldn't shower and the place and the people gave me the heebie jeebies. Like they were watching me all the time -- it was clear they thought I was arrogant -- with my own phone and all. Plus, we had kept them up all night last night.



They were probably relieved to see me arrive alone. I announced to the folks in the den who were watching TV that Gary had been admitted to the hospital, and I was going to go spend the night with a friend, then I called the Travellodge downtown, made a reservation, and called a cab. I just needed to get out of there. No one protested, that's for sure.

I had the cab stop off at SafeWay to look for food and Lysol (I wanted a CLEAN shower). By 1:45AM, I was in some weird travellodge in downtown, showered, fed, and talking to Joe. Man, I wished he could have come along for this. It's hard alone.

Day 1 - Monday

March 29, 2004

We're supposed to be on the 7:20 shuttle. We can't make it. I wake up just in time to call the Texas Workforce Commission in San Antonio and make my claim for unemployment. I call Gordon to tell him we're running late. It was a bad flight. Gary doesn't want to get up until the afternoon -- like 1PM or so -- he's exhausted. Gordon says he's already missed appointments -- it's 10AM in Portland. I get Gary moving. The whole Lodge is torn up by his rummaging about, taking his shower, getting ready to go. He swears he lost a t-shirt somewhere in the ordeal. Everyone's trying to find it for him. I convince the driver of the 11AM shuttle to pick us up at the back door of the lodge, because he can't breath strong enough to make it to the bus stop in time. Finally, at 11AM, we board the shuttle for the hospital.

The ride to the hospital is an adventure. Clearly, the driver's done this before. He negotiates freeways and the winding road to the hospital in break-neck speed. In fact, he's scary good. Gary thanks him for the wild ride and tells him he's a professional. In fact, he's a volunteer. It seems that the grand ole USA can't even pay bus drivers to get patients from one location to the other, and I notice that there are signs on the bus asking for volunteers.



We go to the 8th floor and meet Ann (highly recommended nurse-facilitator) and her assistant (award-winning admin) and they are upset at us for being late. A guy with a pony tail, whom I assume is Gordon Wells, said they have been looking for us. They end up sending us to the lab for blood tests. They tell us to do the blood tests, get something to eat, and return. We also go over some document about his blood and tissue being used for testing. He says he'd like to do anything that will help people who have this disease in the future, so he signs without reading -- I glance through it and it looks harmless, and the assistant says she will have a copy ready for us in the afternoon. If we don't like what it says, we can just undo it.



Unfortunately, the blood test is quite involved (27 vials of blood or so), and there's one of our Lodge-mates in front of us who has to do the same test -- and she seems to bleed slowly. We wait for over an hour to get his tests started. Finally, we get to the canteen around 3:15 and eat something I can't identify but reminds me of food we had in Cline's Corners NM about 12 years ago. We return to 8D at 4PM, and they act like we've been messing around. Gary gets a lecture about taking his Lactulose Solution. This is supposed to clear the ammonia from his brain and help him think better. It gives him diareahhahaa. He hates it. I can't blame him. He didn't take it yesterday because we were going to be in flight for so long.

Ann tells us that Gary's scheduled for a Chemo Embolization tomorrow. We have no real idea what that is, and they give some vague social-worker explaination about what they will do to him. We're supposed to be there on the first bus, check in on the 4th floor, and they will do the proceedure and keep him overnight on the 9th floor. I get Ann to give me a copy of the document we signed this morning. She seems surprised that I remembered. And she told him that his tests showed he was not sick enough to be admitted to the hospital. He thought she had the wrong results or something, because the platelette count she quoted was higher than he ever has had. At any rate, they sent us back to the Lodge.

We went downstairs and exited the hospital doors at exactly 4:30. The bus back to the Lodge should have been there, but... no bus. We waited. The last bus, we were told, leaves at 6:30. So we waited some more. We started to get cold. We didn't want to miss the last bus, so we waited outside. The gentleman at the front information desk had none (information, that is). Finally, at 6:20, the bus showed up and we got on board. A rowdy ride back, but this time I took notes on how to get from the hospital to the Lodge.

We were worried about the Chemo Embo thing and we talked about it -- at great length. We made a list of questions to ask. We decided to get mom to talk to Dr. Kahn back in Temple. Why couldn't they do the proceedure there? Why didn't they? They were going to do some kind of surgery at one point, but backed out because it was too dangerous. Was this the same thing? We didn't know.

We ate more of the chicken and potato salad from last night. Gary wanted Fritos with his food. I wanted a Diet Coke. I asked Roberto where there were snack machines. He gave me long and convoluted directions, and then offered me a Diet Coke. He gave me one of the Lemon ones that I hate. I didn't want to hurt his feelings, so I took it. Momentarily, I went down the long weird hallways to find the machines. I got Gary his Fritos and me my real DC. When I got back, Gary said he didn't eat Fritos, and that he asked for potato chips. I went out again and took the long walk to get him chips. I know he said Fritos.



I didn't feel like eating, but Gary insisted, so I ate some chicken and potato salad. Lights out at around 11 again, but Gary couldn't sleep.

Horrible flight to Portland

March 28, 2004

7:30AM - Mom picks me up at my house with my bags packed and ready to go. Joe (very understanding husband) and I have been up until 5AM packing and making sure I have everything that Gary or I might need. I already feel beat to smithereens.

8:30AM - We stop at the Boerne HEB to use the bathrooms and buy extra cigs for Gary -- just in case he wants them.

9:00AM - At Gary's house. He's rummaging through bags and shuffling over a card table to find his latest prescriptions. He's trying to remember everything. He comes out to the truck and gives my grandmother and envelope with pictures he's saved and his dogtag (which he wore all the time).

10:00AM - Airport. There is much consternation over Gary's steel toed boots. There has been for days. He decides he'll just wear them and take them off to get through the metal detector. We get our baggage unloaded and he talks for a while on the side with my grandmother. Don't know what they're talking about. He is already tired. We get the bags checked and the porter informs us that he takes tips. We scramble for dollar bills. Hadn't even considered it. Gary refuses my offer for a wheelchair. We barely make it onto the plane. It leaves at 11:42.

11:50 - We're on the plane and relieved we've made it. Immediately before landing, Gary says, "When we get off, look for a head. I think I'm going to puke."
3:35 - We're in Dallas and due to board on the plane for Portland. Of course, the terminal is on the opposite side of the airport, and Gary just can't walk without losing his breath. He's also stopping at every bathroom to throw up, sometimes staying in there for 30 minutes. I'm worried we won't make the connecting flight, or maybe we shouldn't even try. He assures me that this is the right thing to do. I flag down one of those electric cart dudes who gives us a ride to the correct terminal. Finally, we board. Gary's really sick.

6:20 PST - We land at the Portland airport. Gary has thrown up all the way (that's a three hour flight, folks). He smells like bile. I follow Gordon's instructions and call for the admission and cab, and we wait. Gary seems to be feeling a bit better now that we're on solid ground. I flag down the cab and he strikes up a conversation about hunting and fishing in Oregon as opposed to Texas. He convinces the taxi driver to stop off at a SafeWay on the way to the Liver Lodge. He hasn't eaten all day. So I run in and get one of those roasted chicken, some potato salad and some bread, water and diet coke. It seems to be a long way to the Lodge, and the neighborhood looks like a lot of warehouses and junk yards.


9:00 PST - We arrive at the Liver Lodge. The taxi driver assures us that it just looks so dismal because it's late and dark. We're greeted at the door by Roberto, who was transplanted in January and can't help me sling luggage and another guy who says he's in chronic rejection and that no body from Temple ever makes it. Seems he's kind of moved into the Lodge permanetly. Later I notice he's the only one with an air conditioning unit hanging from his window. I think his name is Paul. I'm out of breath, and Gary's half nuts. Paul gives me a quick tour of the Lodge and I sign something that says I know what's going on. I'm in a daze. We move in to room 11 and flip the sign to "occupied." I dump out the bag of medicine he's brought, because I was told I needed to report a list of what he was taking, when, etc. We spend about half an hour figuring it out. Here's what we wound up with:

Promethazine - 25mg tab - 1 every 6 hours as needed for nausea/vomiting
Lithium Carbonate - 300 mg SA tab - 2 twice a day
Diazepam - 5 mg - 1 twice a day as needed
Tramadol - 50 mg - 1 every 6 hours for pain as needed
Furosemide - 40 mg - 1 twice a day to reduce fluid retention
Ciprofloxacin - 500 mg - 1/2 per day for prophylaxis peritonitis
Omeprazole - 20 mg - 1 per day 20 minutes before largest meal
Spironolactone - 25 mg - for fluid retention - he forgot it; we think this should be the dosage
Lactulose Solution - 2 tablespoons per day

Finally, we eat our chicken, and we're in bed by 11PM PST. I listen to Gary snore, talk in his sleep, and breath... and when I can doze, I have nightmares. This Lodge is creepy.

Arranging Flights

The flight has been arranged via someone in Temple, TX. But I'm still unsure about how I'm going to get this short-breathed, thirsty, sick guy to Portland. I call American Airlines to discuss transportation for Gary. I'm concerned he can't make the walk in Dallas from one terminal to the other. The woman on the other end of the phone was very understanding, but said we'd have to ask for assistance from the ticket counter -- it couldn't be pre-arranged.

Pre Flight

We checked our bags, pre flight -- zero hour

The Very Abbreviated Backstory....
I have been just fired (laid off, sorta) from my job at NewTek, and I am the obvious person in our very small family to go act as caregiver for my Vietnam-vet Uncle. I'm writing all of this blog using notes I took during the ordeal in the hopes that someone may read it, and it may inform them as to what's up with Liver Transplant patients whose orders originate in Temple, TX. Also, I want to get the chronology clear in my mind as to what happened. Over a month later, I am still confused as to the order of events, and I think that sorting through all my notes will help me figure out what actually happened.

So Today....
Spoke with Gordon Wells via telephone. He explained how things would go. We will be sent to Portland, OR for an evaluation week. If things go well, my uncle would be approved for a liver transplant and placed on the transplant list. If things didn't go well... it would just be over.

He would be subject to a slew (for you non-Texans, that's a "shit load") of tests that would determine his eligibility.

We leave on Sunday, March 28 for our first stop in Dallas. The flight will depart San Antonio at 11:42. We should arrive in Portland some time around 9PM, where we are to call the VA Admissions Office and they will call RadioCab to take us to the Liver Lodge in Vancouver, WA, a communal assisted living barracks where liver patients stay while they are evaluated or after transplant surgery.

The Lodging unit was C-13, and comes equipped with 2 beds, a fridge/freezer, TV, closets / dresser, and a small table. There will be only one phone for about a dozen residents, and two communal bathrooms, so Gordon said we should bring a robe if we wanted to take a shower. Bring travellers' checks, a bank card, sweaters, a rain coat, medications, etc. There will be a shuttle to take us from the quarters/clinic to the hospital, about 12 miles away in Portland. 7:20AM is the first run of the shuttle, and we should be on it on Monday morning to start the fun. Gary would be admitted to the hospital on Monday morning to complete the testing as an in-patient, and I would stay at the Lodge to act as his caregiver on a daily basis.