Tuesday, May 19, 2009


Someone turned the cold back on. It was sunny this morning when we left for Seattle!

I "get" to have an angiogram on Friday. I am not ultra-excited about the sedation and the loss of a day, but I suppose I'll make it through. They will thread down through my neck (more vampire bites, please!!!!) and through my liver and then back up into the portal vein, to make sure that any scarring is adequately cleared out, or whatever.

I think I should have paid attention in science.

This also means I am not 'free' from the tx clinic, which is okay, too. I was mean today and teased the surgical resident (age: approximately 14)... we had been talking about surgical hernias and I pointed out to where I had had one before. He asked what the surgical scar was, and I noted that I had had a biliary stent migrate out.

What I didn't know was that he was looking at my splenectomy scar, which is totally in the wrong place for a stent migration; it's not immediately obvious that my new tx vertical scar is immediately over the previous scar. He got a little flustered and I just laughed. Then I was reminded "please don't tease the health care professionals." :-) Senses of humor in doctors are typically a good thing.

Now I'm home and debating the merits of a nap after 3:30. It's probably ill-advised if I care to sleep tonight. Harumph.

Monday, May 18, 2009

The List (in progress)

This is a companion post to "things I wish I'd done differently" which of course I haven't written yet.

I have been cleaning house for the last few hours (okay, 2, but who is counting?) and putting stuff away, and thinking about some of the things that have been really really useful the last 8 weeks... so here is the beginning of a list which I think is helpful for future tx patients, or really, for anyone who is having major surgery. If you read this and have additions, let me know!

1. A lightweight flannel blanket/heavy flannel sheet. The more it's been washed the better. This can be your security blanket, plus it's the right weight to tote around on car trips to the doctor, and it's good to roll up and use for propping body parts when sitting or when in bed. I stole mine from my sister Kathy... but I think it may have originated with my grandma. It's still in my bed in a big long noodle shape.

2. Undergarments (I'll try to be delicate - yuk yuk yuk - with this). If you have any endowment in the upper body, it's good to have an unstructured bra or two. This can be really ugly and really cheap - in fact, it shouldn't have too much elastic or any clasps or anything. These can be surprisingly hard to find (check the Jr's section). The idea is not to support so much as to lift the girls up from sitting on top of your incision, plus it's easier to sleep. For later on, make sure you have at least one bra that doesn't have a thick band along the bottom. It may interfere with an incision, too.

3. Undergarments (the other end). At least two pairs of them, about two sizes larger than normal size. Preferably with little or no elastic on the legs, and low cut if you can find them. Boy shorts or boxer shorts... it's either that or go commando for awhile. (Ick.)

4. Cottonelle wipes. Leave your eco-conscience at the door and put your plumber on speed dial. These are really nice to have around when your mobility is limited and your intestines are freaked out by drugs.

5. A supply of gauze pads and tape for the various and sundry holes you will have. The nurse will tell you what/how to cover. My nurses suggested kotex or mini pads, which are, indeed, fabulous (and cheap), as long as you put them the right side down. (Men may need instruction with this!) Can be a little bulky so gauze pads are still nice for going out or having visitors.

6. Non-scented everything. Switch over. At least for me, any minor smell made me gag when I came home. Weird stuff, too, like toast.

7. Bring out your inner Hef and get satin jammies. Not only will you look totally stylish but they are much easier to roll over in, slide into chairs, go out dancing...

8. A hand held shower. It will make you so happy.

Thursday, May 14, 2009

What I know: surgery

About the surgery is pretty limited. Duh. Being sent to the depths of sleep will do that to a girl.

But here's a good link, which backs up what I knew beforehand. The pictures are gross...


but anyway.

One thing they do is re-route the inferior vena cava, which conveniently goes between the liver's lobes and drains all the used blood from the lower half of the body back to the heart. So re-route might be a bad word, but clamp it off and send it elsewhere? I don't think they do bypass, or at least not on me, because I don't have the commensurate "holes" for the tubing (e.g., a notch in my upper right thigh.), I don't think. Anyhow, they do that relatively soon after the incision, then get about detaching the liver itself.

Another thing that happens to liver tx recipients is that they forevermore do not have a gallbladder. The old one has to go, and the new one can't be transplanted, so there you have it.

When they are attaching the new liver, they see how functional the common bile duct is -- the spot where the intestines connect to the liver and/or the gall bladder. Mine had been, er, damaged might be the best word, or well-used, due to a series of ERCP's (the short name for a long procedure that involves swallowing a camera that then takes a right turn into the bile duct). Therefore I know that the surgeon had to create a new connection using a nearby stretchy piece of my intestines. Ick!

I was in surgery 11.5 hours, give or take. Apparently there was a big clot in my portal vein (? yes? I think that and not the hepatic artery) that took time to clean out. I didn't ask whether the clot was on "my" side or on the graft's side, but blood doing what it does, having pooled there for awhile, there was a clot. I am now wondering if that is related to the stricture that may or may not be there...

Some time I am going to read my medical record so that I know more. I am curious as to what my old liver looked like, and did they do any pathology with it? I want the chronology, just because.

And that's all I know for now. When I emerged I had a central line with 5 tubes on the right side of my neck (resulting in a great vampire scar!), the naso-gastric tube, the entubation/breathing tube, an incision which I have yet to measure or count the staple marks, two Jackson-Pratt drains (more on those later), a catheter, and at least one additional IV. I think I am glad that I was unconscious.

Wednesday, May 13, 2009


It must be May 12 because I have a sticker on the back of my jacket saying it is so. Let's just say that the sticker migrated to Martin yesterday and somehow made it back to me for the next 36 hours.

We are at war.

And, oh crap. My ultrasound was a little questionable, so I have to have a CT scan next Tuesday morning... which are just about my favorite thing. (It's a tossup as to what I like best: the IV, the metallic taste of the contrast, or the feeling that I have wet myself.) They want to see if I have a stricture (scar tissue?) or some other narrowing of my portal vein.

I called the nurse back to determine the panic factor. As of right now there is none - we have to wait for the CT results. If there *is* a problem (which the internets tell me is kind of common with tx) then it can be treated with angioplasty or something else which I forget right now. Yay. I hope the ultrasound was wrong. Sigh.

All this when I was getting excited to get back to normal! Oh well. I still am pretty normal. Got a couple of miles in last night and this morning, and will probably head out again this evening if the rain is not torrential. Wish it was warmer.

Tuesday, May 12, 2009


It must be May 12, because I have a sticker on my sweater with that date, signifying that I answered all the swine-flu screening questions okay at the UWMC this morning.

Marcie is too ambitious. I arrived this morning at 6:15 of all the ungodly hours, 24-hour urine sample in hand (well, in jug, in hand) and managed to actually finish the whole morning a half hour early - after an ultrasound (which did not hurt as much as I had thought it might, what with all the poking in my side and all, plus they now have a goo warmer!) and a dexa scan (where the tech actually asked if I was a dancer because my hip muscles flex -- ha ha ha ha ha ha ha!!! -- then when I laughed he asked if I was a runner!!!!) I tell ya...

We had time for breakfast with Marty, where I made the smart decision to have egg beaters and accessories rather than the blueberry waffle I initially wanted. Of course now I am craving maple syrup, so.... :-)

I had time between the oh-dark-thirty lab and the ultrasound, so I wandered the corridors of the UWMC. (Does that count as my walk for today?) and located the surgery, the waiting room, travel medicine, repiratory functions lab, and all sorts of fun things. I didn't linger at (or really even look in) the waiting room. It looked overlit and sad.

It's still interesting to see people at clinic blood draw. The woman who was my next-door neighbor in the hospital (who got her tx right before I got mine) was there today, she looks as well as I do. The woman who was new last week was wincing less this week. Cute Kidney tx guy (as I call him) came with someone other than his girlfriend.

And then, on the way home, I got a little sad thinking that next week could possibly be my last Tuesday morning trudge. I see the surgeon on Tuesday and if all is well they will send me back to Dr. K, and I'll have a little more leeway on when I have blood draws, I think, and won't be part of a "cohort" anymore. It seems too soon. It seems like there are a lot of questions I still need to ask, a lot of things I still need to know.

Monday, May 11, 2009


It's Monday, and, true to form, I am crabby. I don't want to work this afternoon, and I don't want to get dressed, and my house needs to be dusted and the cat needs a bath. I am tired of my body being sore -- the entire swath around my lower right side just aches, radiating out from the incision (which goes 3/4 the way around my side toward my back) with what I'm assuming is muscle pain. Standing for a long time hurts (the mall yesterday afternoon nearly killed me) and I am beginning to fear that I'll never be able to wear heels again. I know, how shallow am I?

Maybe it's just cuz it's grey outside.

Thursday, May 7, 2009

What Happened Then

Of course I didn't sleep a lot the night before surgery. I have vague recollections of television and the hospital's movie channel. There were infomercials, too. I don't know if they gave me a sedative, maybe they did.

Marcie and Erich arrived before 4 on March 25. They apparently had to speak to security guards, as there aren't a lot of people around the hospital at that time of the morning. Apparently there's no way to get a parking stub, either... these were all small parts of the chit chat that morning. Erich is mellow. And sweet, and a typically weird 18 year old. (He's 19 now.) And sweet to give up a day of spring break to be with his mom.

The people (hospital assistants? OR staff? aliens?) arrived to transport me to surgery a little after 4:30. I was able to transfer myself to the guerney (sp?) to be rolled into the bowels of the hospital. I made sure that Marcie had all of my things (the five things that I had brought with me, and my wallet and phone...) and suggested that they go for coffee for awhile before going to the waiting room. Erich squeezed my hand, Marcie kissed my forehead.

I know I talked to my drivers on the way to the OR. I recall getting into the elevator. The UWMC is a sprawling facility which has been addended and remodeled about a billion times; I have no concept (even with my great sense of space and direction) of where, exactly, the operating rooms are. Somewhere Below.

Pre-Op is like a stable. Privacy curtains about 3/4 the length of each bed, and I think there may be 12 - 16 spots in the room for patients? (Hard to see from the horizontal.) That time of morning is shift change, so there was a low hum of passing conversation about how busy the last shift was, what's lined up for the day, who was going out for breakfast after work, what surgeons were on call, etc. I'm pretty sure families aren't allowed in there, but it seems to me that I saw the family come in with another patient. I was staring at the ceiling for the most part, though.

It was there that I got a second IV inserted. I met the anesthesiologist... briefly at first, enough time for us to establish our common German heritage (mine by name, his by thick thick thick accent), then he wandered off to order drugs. By the time he came back he re-introduced himself and his associate as my soon-to-be-best friends. I said in a mockery of complete and utter shock "what? I said no anesthesia! we are going to do this with a bottle of scotch and a rag to bite on!" Well. I thought it was funny at the time, and I think the dr. laughed. The nurses did.

I have been asked if I was scared. Or worried. Or excited. I have to say none of the above. It's hard to describe. The surreality of the surroundings impacted my ability to think beyond my breathing. The magnitude of what was about to happen hadn't really sunk in (I'm not so sure it has even yet). Having had abdominal surgery in the past, I knew fairly well what I was in for in terms of recovery pain. And beyond that, well, I believed the staff would do their jobs well. There wasn't any way to worry about prior decisions, or fret about the future. I just had to be.

The last think I remember is being wheeled toward the ER, with the warning that it might be cold and bright in the room. I was warm, so I think I said something about not being worried about that. There was music on. In the back corner on my left side there was a team of doctors seated on stools at a table working on the graft. And then I shut my eyes.

Somehow, I also remember in a lull of the activity that I did have the presence of mind to breathe deeply. When I'm on a heart/oxygen monitor I like to play with the screen and see if I can slow my heart rate and make the blips do different things. Breathing helps that. In the space of that breathing I also concentrated on making a welcoming place for my new liver. And being calm.

Monday, May 4, 2009


Today is a work at home day.

I see how the office thing, the going back to my world of environmental reviews and permits and meetings and customer service, the embroilment in the drama of the workplace... can be distracting from the real work of my life.

This time of working only part time is really aimed at maintaining the balance. The ability to stay calm when buttons are pushed, to remind myself to get up from a long (if interesting) document to get a nutritious lunch, to break for a walk in the middle of the day, to sleep when I need to sleep.

I want to keep up with writing. A lot of it still goes on in my head, mostly because I let other things push it out of my daily timeline. But in so many ways it's my sanity.

My days have been getting fuller. (Ick. More full?) It's been since at least last Tuesday that I had a long stretch of time when I thought "what will I do next" and Tuesday it's just because I was exhausted. Social events Thursday on were good for me. I am a bit wary of being too close to other people and am not all that excited about restaurant food or party food, but that will come back to me. I hope people around me understand a little when I sit at the back of the room, or don't take them up on the offer of the mayonnaisy salad that's been sitting out for 3 hours, or... :-)

Maybe I'll just take it up permanently as an affectation. I needed something to make me more weird. Weirder. (Now that word I like.)


I moved to Tacoma the August before I turned 17.

Relocation to college, officially moving out of the house (though my parents had really moved out before me), and becoming a Northwesterner was quite a production in my family. Kathy hadn't worked all summer, I had worked at Rax Roast Beef (finally being old enough to work legally) and our days had consisted of soaps, suntanning, and me working swing shift and bringing home the milkshake machine-cleaning to the dog...

Mom and Dad had lived in Yellowstone all summer, so moving entailed a van, a trailer, two cars, and three different routes. My stuff was packed into the cars and lord help me but I can't remember how all the other household stuff made it to Washington. (My parents sold the house when I started college.)

Priorities for me were 1. orientation and 2. finding a doctor. My doc in Utah referred me to Dr. W, who was to be my doc for the next 20 years. (20! And yet at my last visit I encountered another teary-eyed woman who had been to the office for 24.) With Dr. W came a lot of really really bad jokes, opportunities to teen-sit and house-sit, a woolly golden retriever (who was not leash trained... my favorite was the day Kathy and I had to chase him all over Point Defiance), a Sunset-worthy acoustically perfect house, and a Volvo station wagon (thus starting my love affair with boxy cars). I was spoiled.

My typical visit with Dr. W -- no kidding -- was 5 minutes of how I am doing and then 10 minutes about life, family, travel, and sometimes even politics (I think we disagree). So, given 20 years at four times a year for 15 minutes each, that's approximately 20 hours total. Throw in the odd procedure (and for GIs they are truly odd procedures) and I've spent the equivalent of 6 dinner parties with Dr. W. Add in the interaction surrounding house-sitting and social gathering, and we'll call it 10 dinner parties.

How can someone with so little contact have so much influence? I don't know. I do know that not every doctor is for every patient, and vice versa. There's a lot to be said for bedside manner (no matter whether one is in the bed or out of it), but sometimes personalities just mesh okay. I have had other friends who have seen Dr. W (the world is full of people with GERD and IBS and such) who do not care so much for him as I do. And, by extension (and subsequently of their own accord) his family.

I guess even intermittent contacts have had profound impacts on my life... my hair dresser, my dentist, my financial advisor, people I knew when...,