Thursday, April 30, 2009
Will wait to see EOB then will write rant about health care in the US.
In other news, woke up gloriously well-rested at 6:30 this a.m. and worked till 9. Now am headed out for walk #1 with Amanda and her pooch. Yay!!! The park is absolutely beautiful with all those new-spring colors. Too bad I have much, much more work to do this afternoon...
Tuesday, April 28, 2009
I had been a little bit nervous, because one of my former colleagues' husband went into liver failure shortly after she had retired. His was an acute toxic failure, and by the time diagnosis was made and he was listed for a tx, he was simply too sick. He passed away within a year.
I thought the time would be awkward, but she is such a calm, open, and giving person, that it wasn't. And since the whole experience is still rather fresh for her, she was able to ask some really good questions.
As we talked (and of course there were about three million other interspersed conversations) I began to realize that she had had the "crash course" in transplantation, and how that was so beyond my frame of reference, and I had no sense of relation to her experience vis a vis timing. I mentioned this, and her response was a little taken aback, for she thought that a year was really a long time to be in the process.
It made me think last night. If I had only had a year, or less, to come to terms with the whole idea of a liver transplant, I don't know if I would have done it. And in hindsight I would doubt my ability to survive.
When I was first referred to see the hepatologists at the UW, I thought that it was for a, oh, I don't know, a second opinion, or news on research and new drugs, or an exam or a prognosis. The ramifications of going, of getting into the "system", just didn't occur to me. Dr. W recommended that my spouse go along... which was the first time he'd come to a medical appointment with me. I think that Dr. W thought that I would see his long-time friend and colleague, the senior member of the team. I think he thought that we would have a chance to talk to him before going to the UW.
Naturally, none of that happened. I took on all the stress for two of us, finding our way around the corridors of the UWMC (which has been in various phases of remodeling since the dawn of time), through blood tests, waiting for results, having a physical, meeting with nurses, interns, fellows, and then the fellow and the hepatologist, Dr. K.
I've gotten used to the brevity and absolute directness that many health professionals approach patients with, and on the whole I really respect and appreciate it. However, I think the first couple of words out of Dr. K's mouth were "well, looks like we'll call the social worker and have you interviewed for a transplant."
Oy. I did not react well. Transplant wasn't even in my solar system, let alone on my radar. I think my reaction (coupled with the cold sweat that ensued from the person sitting next to me) probably colored my opinion of Dr. K, but I developed a rather venomous dislike of the man within the next 2.4 nanoseconds. I found him to be supercilious, pompous, rude, and unkind (add to this that he is well within a decade of my age). My bristles went all-out and my nails were barely sheathed.
I feel sorry for the social worker who saw us next. I don't even remember who she was, because I had shut down during the half hour we waited (in the exam room) for her arrival. Stunned silence is never very comforting.
Over the next several days/weeks/months I faced all the following:
- I didn't feel deserving, that there should be someone who deserved a tx more than I.
- I didn't like the way health care is handled in the US and was embarrassed by the fact that I'd had so many more opportunities and had such better insurance than others.
- I was sure the docs were wrong and that genetic research would prove my salvation.
- The UW was more bureaucratic than even the federal government, and I found it inefficient and frustrating.
- I really wasn't "that sick". I'd always been "fine" and would continue to be so. I could handle it.
- The thought of waiting for someone to die was too macabre to dwell on.
I know there were more, but those were the first that lept to my mind. And most of them were not resolved until the last year or so, and a few are still in the file folder in my brain entitled "things I don't think too deeply about" (they share a space with pork, public restrooms, unfair labor practices in shoe manufacture, and the sex lives of relatives).
My opinion of Dr. K stayed that way for, well, I'll estimate about 5 years. It changed gradually (especially with the kind venting support Dr. W offered) stemming from the point at which I - while in one of the endless waiting periods between appointments - looked up from Foucault's Pendulum to see him shuffling down the hall blissfully snarfing a king-sized bag of peanut M&Ms.
Since then, Dr. W has retired, and Dr. K has left the UW. He is now my "regular" liver doc, and I like him a great deal. I would like to think that he has matured and mellowed being in a non-academic setting, but I think the better view would be that I've grown up. He still can't call me "kiddo" though!
Well, I stopped crying for any reason other than extreme frustration and anger - usually brought on by exhaustion and stress, and usually aimed (oh I am so sorry) at colleagues, or at least near them. I had to have a shell in order to set some semblance of boundaries to my raging emotions. (Yeah, give steroids to a Scorpio sun/Cancer moon and watch how that works out for ya...) It was a way to cope, to live either in denial or stoicism or not wanting to bother others or... maybe just to avoid the rest of grieving (for what? lost opportunity? lost adolescence? the way I perceived my family had failed me? just being a teenager?).
I made it that way for about 16 years. I didn't cry again until 2002.
I had been remarkably 'healthy' through my 20s, had gone onto another immuno-suppressive drug and had been off steroids for nearly 10 years, and had thoroughly enjoyed grad school, getting out on my own, falling in love, getting married, and generally being the hedonist that lurks inside my soul. My GI (gastroenterologist, not military dude) even came close to 'firing' me a couple of times because there were few indications of progression of the disease or decompensation of my liver.
But about the time I turned 3o my bloodtests started to show the chronic indicators of liver disease: nothing but nothing could elevate my blood proteins, I was developing esophogeal varices, my blood pressure was too high, and my bilirubin counts were rising above normal. Dr. W broached the topic of referring me to the UW to meet with the tx clinic, and an appointment was made.
I made the unfortunate decision to invite my then-husband along to the UW for the visit, the first time he'd been involved in my health care in any way. It was an abysmally wretched (is that redundant? I will leave it because it was truly terribly awful) experience best saved for telling later.
The summer of 2002 sent me through the workup process for the tx waiting list, what seemed like endless tests and ever more prescriptions. I was not reacting well to any of it, and on top of that I felt pretty crappy all the time. Counseling helped a little, but complex knots don't unravel in the space of a few months.
August rolled around. I had been retaining water, and one morning I got ready for work and none of my clothes -- really, none, not even my fat pants or my elastic-waist skirts -- fit. I couldn't get my feet in my shoes and I felt miserable. Not only because of all the fluid retention, but anyone who knows me knows that I am a little (ha! understatement!) neurotic about clothes, how they feel on me, getting dressed for work in the morning, things not going as planned, getting up in the morning, worrying about freaky things happening with my body... so I wigged out and called in sick, and called Dr. W.
Turns out I had pitting edema. That's when you retain fluid to such an extent that when you, say, poke it, there's a dent left behind that takes up to a minute to un-dent. It's the kind of thing a 10 year old boy would think was totally awesome, right after belching and farts (sorry to be so stereotypical; a girl might think so too). For an adult, especially the aforementioned wiggy adult, it was very, very gross.
Dr. W only had to see me for about 8 minutes (typical of most clinicians, his appointments were 15 minutes long...) and was prescribing two more drugs for me, a balance of diuretics. At some point during the side-effects discussion he made eye contact with me. I swear I turned 13 again at that moment, my eyes welled up and my bottom lip popped out and started to tremble.
The man, bless his uber-chic urban heart, tapped into his fatherhood and husbandhood [an aside: I adore his wife and daughters, and to this day he is still the only person besides my dad who can call me 'kiddo' without getting sneered at] and said "get your butt in my office now."
He sat me down opposite his desk, and I crawled into my 13-cum-32 year old self. He looked me straight in the eyes and said for the first time ever the words no one had ever said to me before.
"Listen," he said. "This sucks. This sucks a lot because you never did anything to deserve this, and you haven't done anything to make it worse. And your best hope is to stay as strong as you already are and work at this and survive. I believe you can do that."
And the floodgates opened.
Now - and all the criticism and teasing be damned - I cry. Fully and unabashedly when I am happy, complimented, sad, tired, mad, touched. At work (and now I'm not so sorry), at home, watching EVERY movie I've seen, at Hallmark ads (cliche but so true), when friends are in pain, when dogs are in danger, on vacation (I am sorry about that, Martin!), and when I stub my toe. It's fabulous. I hope I never grow out of it.
Sunday, April 26, 2009
Here are some other things.
My skin has entirely shed itself.
I can't quantify it, but while I am still sleepy and get tired due to, oh, I don't know, major surgery or something, there is not the bone-deep exhaustion that has been my companion for the last as long as I can remember. Sure, I am still up for an attempt at 16 straight hours of sleep, but I really don't think I'd succeed. 8 seems to suit me fine now.
There is no lingering dull pain below my right ribs.
All my hair is falling out - this is typical after a physical trauma (also happens after childbirth) so approximately 4 months from now I'll have a much larger than usual proportion of new hair.
My eyes aren't tired.
However, as previously mentioned, I still hate mornings. Mondays especially. And I still cannot dance. Siiiiiigh.
And, who knew? I like milk.
Saturday, April 25, 2009
I had been camping in Southern Utah with my parents and girlfriends over Easter break... I think that was the year we stayed at Dead Horse State Park and went traipsing around Arches and the "Fiery Furnace" hike. It snowed (my best friend Jill had a magic tent that conjured the snow) and we ran around and had fun. I still have some great photos. My friend Jen also barfed on the (naturally very cute) park ranger on that trip, too. Mom and dad stayed in the camper and made us wonderful hot food and lots of cocoa.
I had had blood tests the week before, and when I returned home (this was 1986, remember, no cell phones and my parents didn't even have an answering machine) there was an urgent call from the doctor. My platelet count was extreeeeeeeemely low. Like, if I had had a bruise or a cut I would have probably bled to death. That low.
The diagnosis (more blood tests! ultrasounds!) was acute thrombocytopenia... that is, that an abnormally high number of platelets were being removed from my blood by a terrifically enlarged spleen. This happens sometimes in people with autoimmune diseases like rheumatoid arthritis or lupus, too. I had been on relatively low maintenance levels of prednisone for a little over a year, but of course the main treatment option at the time was to pump me full of the 'roids again to see if my spleen could be beaten down.
This made me a very chipmunky person for Junior year play. This also resulted in a series of photos from my trip to Europe that summer that ... well, it's not all that easy to recognize me in them. (And thank goodness, because boy, I had TERRIBLE clothes!)
Unfortunately, the drugs did not bring the thrombocytopenia under control. About the time of my 16th birthday, it was recommended that I have surgery to remove my spleen. We were able to schedule it for Christmas break (oh yeah!) so I could miss as few of my senior year classes as possible. That was my first experience with general anesthesia, multi-day hospital stays, and the irritation of a naso-gastric tube. Also I learned that nurses and "rounders" appreciate candy and suction-cup dart guns, and that morphine is a lovely lovely thing and can elevate bad Disney movies (Journey of Natty Gann) to high art. (Hee hee hee, "high" art...)
An ironic thing now is that since tx I have had to take a daily aspirin to keep my platelets under control. They have never been high since the splenectomy, but now that I have a liver that's actually doing its job, I have platelets galore. Aspirin makes them less sticky, and less likely to clot.
Friday, April 24, 2009
For instance, the aforementioned freakishly white eyes... I had been so accustomed for so long to having a lovely butter tint to the whites of my eyes that for the first several days (compounded by the reduction of visual acuity) my eyes did not seem my own.
When the liver is failing, it stops making the proteins and other such good stuff that knits the body together. One key thing is that the walls of blood vessels tend to get porous -- in fact, an indicator of liver disease is the presence of "spider angioma" which are little burst blood vessels underneath the skin... along with esophogeal varices, which are what they sound like - varicose blood vessels in the esophagus and the stomach. I had both -- I'd had the angioma as I was diagnosed... most prominently along my left arm and a burst vessel underneath my left eye (normally they are around the torso, I guess). Like the yellowness of my eyes of those were gone within 24 hours of surgery. [p.s. after reading more about this, it's likely that angioma are due to the liver's inability to keep estrogens where they belong...]
Also, in the beginning of March I had had my annual physical, and complained of chronic sinus problems and nosebleeds. The sinus issues are gone... I think possibly due to the gargantuan amounts of anti-everything I am taking... but no more nose bleeds. I have also not had a whit of heartburn... which was prevalent prior to tx even with anti-acids and bland food.
And one day about a week after returning home I looked in the mirror and I was verifiably PALE. Like, white. Not the "tan" most people noticed, not yellow, but just plain, ghostly white. Now, that wasn't all so healthy... but it was certainly different!!!
Thursday, April 23, 2009
I could ask, but I haven't really asked anyone about their experience of all this, because I want to have my impressions down first. Besides, everyone (and I mean everyone) is concentrated on my emotional well-being, so I don't think they'd tell me anything "difficult" for the time being. And that's okay. There are details that I'm sure will emerge over the course of many conversations and a lot of time.
M and I have been dating for a little over two years. It doesn't seem that long, and it sometimes seems like a lifetime. He's pretty fantastic, but I won't write about all the ways we "fit" and how much I love him... that's way to schmoopy to subject everyone to. Including me. Especially him. But I do believe he's headed for some sort of sainthood, and to that effect I offer the following vignettes:
About the beginning of March, we had one of those long lazy Sunday morning conversations, the kind of babbling that happens between snoozes and very serious discussions about if it would be possible to stay horizontal for the entire day. Among the topics were superpowers, my girlfriends' love lives, how crazy my family is... etc. M started quizzing me on what happens during tx surgery. I had been to the surgeon talk three times, but honestly couldn't recall a lot of the technical stuff from the latest one (last summer) so I stumbled through. Also made him pinky swear that when I had surgery, NO ONE but immediate family was allowed to see me before I had the naso-gastric tube removed. It's a quirk of mine, but it is so terribly foul that I draw the line there. Anyhow, being the information geek I am, I spent time online when I got home later that day and re-read all the surgical info. During our goodnight phone call, I found that he had done the same. It was one of those miracles of timing because a few weeks later I was much more informed with fresh information than I had been.
He sat in the surgery waiting room (which I have never seen but which I assume must be terrible) with my family for 12 hours. Even my family can't do that.
I don't remember ICU, but he was there.
When he saw me scratching my arms he did not hesitate, in a room full of people, to grab the lotion (hospital swag!) and work it around my IVs.
When my brow was furrowed (bright light!!!) there was a nice forehead rub to relax me.
That Saturday night, when I was really able to be conscious of my surroundings for awhile, after everyone left, he turned on the super bright lights in the room, and used the back of his Ipod as a mirror to show me my staggeringly white eyes. When I cried, he did too.
When you are sick, or convalescing, it's important to have someone who is constitutionally calm. Someone who is not afraid to touch things - literally and figuratively - which are fragile. Who can be firm in the most gentle of ways. And I have that in Martin as my friend.
Last night after all the furniture arranging and picture-hanging, I realized something very very important about him. I don't have to worry about him, which is very unlike many of my other close relationships in life. I can worry with him, or for him - about work, family, health, etc., but not about him and his steadfastness and reliability. And that's such a huge thing.
Now I need to go wake him up. Maybe I'll have to change all of these nice things... :-)
Yesterday I returned to the office for an hour or so to meet about working from home for awhile. It was really really nice to see everyone. And yes, I heard "but you didn't seem sick" more than once. Case in point, I suppose.
But it felt great to at least start thinking about being back in the swing of things. Using my brain because TV is so boring and books can only get me so far. It'll take some time to recall little details from some of my projects, but that's okay.
Meanwhile, Kath and Gary moved all their furniture into their new house yesterday, so Martin and I spent the evening up there. I sat in the armchair by the fire while the three of them moved furniture, positioned art work, and made dinner. Ahhhh, so rough! And today it's off to the tulips with my family. Still tired and sore, and only good to be on my feet for a few hours at a time.
I am v. happy that it's sunny this morning. I hope it stays this way for much of the day.
Tuesday, April 21, 2009
The surgeon said that having full-time supervision is nice, but "there's no book about this." After I mentioned that I was bored enough that I had considered making cat costumes... I did receive a limited release for work-type and more active activities.
Nurse M, though, just got a quizzical look on her face when asked if I could be alone. As in "I can't believe she hasn't killed all you family members yet. Let her be!"
Still no driving. I bless my neighborhood with the 94.8 on the walkability scale. No lifting, but that's cool with my laziness factor. I still "get" to go to the UW at 6:30 every Tuesday, but don't see the dr. again till May 19... then they may spin me back to my regular doctor. Wheeee!
Monday, April 20, 2009
And, thankfully, today is not a hard day to be outside!!!
I think I'm returning to a normal daily pattern. Case in point: I was a total snarky b*tch this morning till 9, as is my usual. Evidently a new metabolism does not a morning person make. Hey, at least I recognize it and can joke about it...after 11 a.m. that is.
Sar and I are having dinner at the neighbors' tonight. While I'm still not ready for restaurant food, it's nice not to have to think about cooking. Urgh. Meal planning is so a part of the rest of my life. Urrrrrgh.
Sunday, April 19, 2009
More than any other young teen, I became really self-absorbed. I was so focused on not being miserable and maintaining some sense of normality in my life that I was really quite abnormal. I had a few close friends, and I just assumed that everyone else hated me! Now, I probably would have felt that way anyway, being a monster nerd. I have since learned to wear that label proudly (I also claim "geek" and "dork" quite readily, with a self-deprecating snicker), but in high school it's far from a badge of honor.
I never took the time to think that the other kids had their own worries and troubles... it seems like a lot of the four years just occurred around me, and I muddled through, a somewhat arrogant twit without much thought for others. But then, maybe few people noticed.
Sure, some kids were mean. I was the 'star' of more than one rather cruel cartoon, and there were some pretty nasty pranks playing off my rather sad over-attachment to my dog (I know that's totally surprising given how pet-focused I am to this day) and the yo-yo weight thing... 30-ish pounds on and off at least twice during the four years. I always blamed it on being 'sick' and it took a long time to gain the perspective that, hey, high school generally sucks in some major or minor way for about 99% of kids, and maybe my high school would have been no different if I'd been the portrait of health. (But I sure would have drunk more!)
One of the miracles of the internets, though, has been the opportunity to re-connect -- even tangentially -- with people who made it through St Joes in my cohort. They are all the most amazing adults - with varied and totally impressive careers, good lives, and a certain generosity of spirit, curiousity about other people, and a sense of comeraderie which I really didn't expect.
Maybe this proves that I'm still pretty self-focused, and I need to grow out of that more. I've changed a TON in (oh dear) 22 years (ohhhhhhhhhhhh) so why wouldn't everyone else?
In many ways, though, I still let my family get away with treating me like I am 15...
A gorgeous Sunday here in Tacoma. I was really really happy to see all the people out at Point Defiance (before noon!) and then Wright Park was occupied all day long. It was a day for exploring the Japanese Gardens, the Northwest garden... and really all sorts of places I've never been in the central portion of P.D. However, I think I may regret the time spent in the sun while on a Sulfa drug... definitely pink on my face. Sigh!!!
Also spent time with two friends today (aside from Martin) and just hung out. Managed at least a couple of miles today, and am watching trashy tv with Kathy! Have returned to light housecleaning and even some cooking, which is very very nice to be able to do.
Is tomorrow Monday? Tuesday I hope to get at least a limited release from the surgeon to return to some "normal" activities.... we'll see!
Saturday, April 18, 2009
I am heading out for an afternoon with Marcie and my Mom. Kathy and Dad and all her friends (Martin still hasn't decided) are off to an afternoon of sailing on the SeaScout Ship Odyssey. It is generally so very, very cold, that I had already declined the invitation. But add to that that the bulk of time is spent bracing oneself on the deck of the ship it sounds more than a little exhausting to me. :-)
So perhaps a long walk, my fourth trip this week to the Conservatory at Wright Park, the grocery store? Hmmmm. Today so far is a normal Saturday listening to NPR and letting brunch settle in. Mmmmm.
I am just happy for the sun.
If I recall correctly, the test for antibodies that attack one's self was pretty new at the time -- they had just figured out T-cells and it was pretty conclusive that I carried an anti-smooth-muscle antibody. This meant, essentially, that my body's immune system was attacking itself. In people with rheumatoid arthritis, this attack was aimed at the tissue of the joints. In me, the attack was aimed directly at my liver.
The response, then, was to suppress my immune system, to beat it into submission to such an extent that it would cease to attack me. That also meant I would be susceptible to other illnesses, but vigilance with exposure should protect me.
The drug of choice was prednisone -- not the anabolic beefcake kind -- but prednisalone or methyl prednisone, used to suppress immune system as well as reduce inflammation. And, oh yes yes yes!!!, predinsone is so totally the teenager's dream drug. The primary side effects:
extreme and sudden mood swings
How could I not just be overjoyed!!! Let's ignore the fact that puberty and high school are already rough enough, add on those things. Plus some rather fantastic psychedelic dreams, the eventual onset of osteopoenia, and wow. And in the space of 4 months, I went from catepillar (rather scruchy but endearing little creatures) to pupa (puffy and ugly and impossible to see what's inside). I wasn't fortunate enough to get Gary-Coleman-cute chipmunk cheeks, and unlike my friend Rose (with some sort of rheumatic problem) was unable (or undisciplined enough) to avoid significant weight gain.
To add insult, my school instituted uniforms the fall of my sophomore year. And I had perpetually bad hair. You get the picture. On the upside, I have to say that I never really suffered from PMS because I felt that way all the time.
And yet in high school I had friends. Like, four that I knew of...
Thursday, April 16, 2009
Wednesday, April 15, 2009
Here's a poem I wrote about it when I was a freshman in college:
Ironic, that the first tears shed
were when they said she wouldn't die.
It wasn't there in the dim levelor-
striped light of the office; while there
she held it together and smiled.
To this day Mother quotes her on some
she never did say, about eighty percent being good
odds and nasty side effects not mattering.
Then she said "Don't worry, doctor
our little one's not vain. She's
handling this all quite well."
Outside May skies wept and at home
she sat alone in the dark
bathroom, stared at the vague person
above the sink, thought of who she used
to be and what she was about
to become, remembered the boys and the parties,
popularity and beauty and now only
that she must make others proud
and then began to hate herself
Inside she wept and today
she thanks God that no one was
there when she sat on the windy bluff thinking
and wished that on the way
home some drunk would cross the center and
set her free.
I hadn't really been sick. There was one day in December when I had been yellow, but I also had a yellow bathrobe. I slept a lot (2-3 hours after school and then another 8 hours over night, and all weekend), but I was 13. School was hard and I was working hard, and sometime in January I had gotten the flu and then a bronchial problem that wouldn't go away. I had antibiotics and during a physical my pediatrician noted that my URQ (upper right quadrant) was tight - thus that my liver was inflamed.
For some reason, before they could do a liver biopsy, there was a 3-month time of blood tests (mine were bad) and inflamation that needed to be documented... so I think I had my first overnight hospital experience sometime in April. That would be 25 years ago this week or last.
They kept me overnight since I was young. At this time I was seeing my first GI (gastroenterologist) who did the procedure. They are still done the same way - a pretty thick needle with a notch cut out of it is inserted between the ribs and into the liver, then a sleeve comes down over the needle and a notch of tissue is removed. I think they attempt to sample only one or two pieces... but with my first biopsy they needed 4 to get enough tissue and not scarring in order to do the pathology. I was thankfully sedated very heavily. (My long infatuation with sedation began so early!!!)
Then, about two weeks later, the diagnosis...
The first package came while I was still in ICU - Jen brought me a bag of amusements. Thanks Jen!!! And the instinct that flowers are not allowed in ICU is correct... that's a no, no matter what.
By the time I made it to the post-operative ward (my favorite "4 SE" where I have been before) my family had fetched the things I wanted from home: an afghan my mom had crocheted when I was 13 and going through the endless tests and hospital visits, and a wire figurine / dancer / star thingy I had bought at the West Seattle Arts market the summer I was first listed for a tx. I knew she would be with me when I got a new liver... don't know why I didn't taker her with me to check-in. Hm!
I know I got several stuffed animals and some balloons which really brightened my room. In addition, there were tons of magazines, puzzle books (which are now proving very useful) and 4 flower arrangements... which, I didn't know... I couldn't have in my room. My family took them home, but the dweebs did not take photos... so I only know that "they were pretty."
But here's the worst part: I have no idea what came from whom, and therefore have to send out a blanket thank you. Ugh.
Now, in this case, I know which Heather (C.) sent the flowers - thanks, Heather! But this is by process of elimination, since the other Heather I know brought me a pretty scarf yesterday with the "I waited till you were home" preface. The last time I was in for surgery, though, I knew five different Lindas (or Lyndas -- the flower shop people spell phoenetically), all of whom were likely to send me a flower arrangement. Luckily I asked all of them while I was still high as a kite, so there was no social awkwardness... but.
When I worked in a flower shop, I don't think I ever put last names on delivery cards. I wish I had, now... for unless a person is blessed only with friends named Penelope or Beauregard, there are likely duplicate names... and cards get separated... and....
So, ANYHOW, thank you to everyone for the cards, flowers, balloons, and soft squishies. The people at work, I know who they are... and yours is coming. But then, in addition to the material stuff (for which I have some sort of evidence) comes all the good thoughts, prayers, kind words, and the work people are doing in my stead. Thanks!
Yesterday was a long and tiring (but not tiresome) day. The 6:30 trip to the lab at the UW was more like 6:50, followed by a trip up Sandpoint Way to get breakfast and take coffee and roll to Martin... he needed a nice perk for his Tuesday -- and hey, I'd never complain if someone delivered me breakfast!!! Okay, well, once I get back to caffeine.
Yesterday was also a mile at a good pace with George and Heather. That was really nice! My body protests... still sore and unhappy at holding myself upright all day. I get more range of motion, and am reading like a fiend.
Good news from the lab is that one of my side-effect-ridden anti-rejection meds has been reduced. I still have way, way too many platelets, so more aspirin, but then that will take place of the tylenol I've been having for pain. :-)
Now, maybe, a nap. I've dutifully had my p.m. snack (yogurt: my best friend). Gary is playing with his new Garmin and trying to fix the battery in his CRV. Marcie is playing with the cat in hopes that she will sleep all night (apparently she and Kathy warred all last night...)
Looking forward to tomorrow, the day after that, and getting back my capacity to do some work.
Monday, April 13, 2009
Also up to walking a mile with only a short break in the middle - today that was sitting at Tully's in Stadium for a few minutes - and have started feeling a daily routine.
As the day has worn on, the gloom has started to take its toll. I don't want to go back outside, and I am tired. Tired. All my core muscles are aching in protest of the walk, sitting up in a chair for hours, washing my own hair (!!!!) and showering/changing clothes. Fortunately I have a comfy recliner and the cat is in her own lair.
Sooooooo looking forward to the 5:30 drive to Seattle tomorrow!!! (But then I have visitors to look forward to in the afternoon.)
Well, not so much a confession to myself and anyone who has been around me for more than an hour or so at a time. I used to eat like crap. That's the only way to put it. And now I am paying pennance for that lazy attitude toward food.
When I first started the workup program at the UW I began to see their pre-tx dietician. I generally do not like RD's because they are all terribly thin, and none of them has ever so much as had a twinkie touch (usually) her lips during this lifetime. Nor have they ever craved french fries or mayonnaise. I was a vegetarian/semi-vegan at the time, and despite my careless habits, I tend to be pretty well educated about food, food portions, nutrients, etc. I guess that really just puts me in the camp of "typical american woman". So with me, it was not a matter of education, but a matter of will.
Which I did not have. I remained largely non-compliant with the pre-tx dietary guidelines: lots of protein, no salt, little sugar, and lots of fruits and veggies. Ha! I can tell you that more than one day in the week prior to my surgery, my diet consisted of coffee, candy, and some sort of carb like pasta or bread. Maybe a piece of fruit if I remembered it... or gallons of herbal tea.
Cut to release from the hospital, and very very very stern direction from the surgeon, the nurses, and a new (! improved !) dietician team ... combine that with the ministrations of my familia... and here I am, protein loaded and .... grrrrr. I am required to have nine - that's nine - servings of protein a day. By the time I eat that there's not a lot of room left for anything else, you know... but if so, I have to have peas or carrots or an apple or orange.
I sort of regret it, and know that my appetite will resume normality, and then I'll get whiplashed back into calorie-counting within the framework of lots of protein and no salt, but my activity level will also increase and I'll be able to do this whole balanced-diet thing. Right now it's still hard. Anyone who's ever committed to a complete dietary change overnight (all you grrls say hey!) can relate.
The recouperating time is as much, for me, about creating good habits and taking care of myself as it is about physical healing. But then, I think that creating good habits is part of the larger idea of healing... now that I have a liver that will actually take the fuel it's given and do the hard work it takes to create proteins, and process sugars into energy, I owe myself that much. It will be odd to actually have an appetite. I have no concept of what it will be like to have a renewed amount of energy...
Sunday, April 12, 2009
Friday, April 10, 2009
Over the last week or so a common question has been "I had no idea! Why didn't you say something?"
I have been trying to answer that question for at least 20 years. I don't know. How do you say - hey, I'm cold and tired all the time because my circulation system doesn't work because my liver isn't doing its job.
How do you say - I don't drink because I got a bum liver and after I turned about 27 the very idea of alcohol began to turn my stomach.
How do you say - I may have to miss a lot of work, and I don't know when, if ever, but when it does happen it will be right then, and I think I'll know when it's imminent (I didn't!) and we can prepare then, aren't you happy to be my boss now???
How do you say - at some point I will be completely unable to care for myself and I am going to rely on you physically, emotionally, and financially for an undetermined amount of time but will you be part of my care team anyway?
How do you say - this is me. I come with this. Every day from this point forward, I will have to do x, y, and z to take care of myself and take this gift seriously, and live a new life, and it will probably affect your life in ways that I cannot imagine, but will you be my friend anyway?
And perhaps, most difficult for me - how do you say - there will be no children, and I won't be allowed to adopt, and I may very well die long before you, but will you hold my hand anyway?
How do you say all of this without seeming to be a whiner, or the girl who called 'wolf', or without succumbing to the blank look from the other person which says "but you don't seem sick at all, I don't really believe it's that serious". Plus the other loaded stuff that comes with it.
People closest to me would always know, or at least surmise, that I was unwell. The rest of me was so focused on living a "normal" life that until the last 6 months or so, I 'got over' a lot. Eventually, if not in so many words, each of those statements gets worked out as people become my friends.
Have I left some people out? Probably. It's awkward. It relies on trust to some extent, and a lot on my own confidence in a relationship, and on opportunity. Maybe in the next twenty years I'll get a handle on it.
I could probably muster up some feelings of guilt about how everyone has bent their plans, schedules, timelines, and worries to care for me... but then.
When I moved to Tacoma I made the totally impractical decision to buy a daybed (Big Red) instead of a traditional sofa for my lovely water-view living room in the Tacoma Ave apartment. It's TERRIBLE for furniture -- too deep to sit in, high arms, no back, etc., but it has the advantage of being a twin-sized mattress/bed. Nights become a sort of slumber party with my sissies and niece, watching trashy tv or a brainless romantic comedy. Mornings my parents have been napping while I snooze, and a few afternooners who shall remain nameless have indulged in sleeping while I play online, or read, or....
One thing about "caring for" me during this time (which consists primarily of opening and closing windows, and lifting) is that -- at least I'd like to think it is -- it's a little respite from the rest of the world. They may have a different viewpoint... but then this is my story!!!
Thursday, April 9, 2009
So we had breakfast, and mom and I walked to the bakery for birthday treats. I can now appreciate my mom's walking pace, especially on hills, and we are well-matched. I hope I live to be 76 and slow down again... but till then I certainly hope my life can speed up a bit! I did get dressed and out of the house before ten this morning, so that was an accomplishment in itself!
Martin is back from his business trip. Words cannot describe. He is not "on duty" this afternoon (Sarah is here) so we are doing one of the things we do best: hanging around and listening to music, and to each other breathe.
Wednesday, April 8, 2009
It's a good day so far. It was funny being escorted around the park by my dad and Gary... I felt like I had henchmen. Dad and Taosi are making friends with all the residents of Wright Park, which is a tender but kind of scary thing. :-) Taosi can hold her own, though.
Gary is on duty this afternoon... being off-call and "free" on Wednesdays, and he'll be making STEAK tonight for dinner. I think I could get used to the hand-and-foot waiting thing. Maybe.
Oh, wait. Lisa and Shannon came by on last Thursday. So I guess that makes today the third. Oops. Well, I have not taken any narcotics for 6 days so one would think that I'll stop having such memory gaps...
Tuesday, April 7, 2009
In what is just this side of sadistic, Clinic starts at 6:30 a.m. for pre- and post- kidney and liver transplants. I have known this for the last seven years, but have been indulged into a pleasant denial by the fact that pre-transplant patients "only" have to be at the UW by 7:30 for labs, and later clinic appointments.
But Newbies, like me, they make start at 6:30. There are very good reasons for this, but suffice it to say that leaving the house by 5:40 when it takes about 20 minutes just to roll over is a little difficult. I think that for the docs there's an added benefit in that they get to see patients at their absolute WORST (and really, no one, no one, can be enough of a morning person to be happy with this). There's a minor benefit in that the most recent operees (?) get to have the earliest clinic appointments, which begin at 8:00. In between the times there is a foggy period of sitting around the waiting room, trying to eat, and tucking into the 8 a.m. drugs.
I think the yogurt marketing peeps are really missing a great opportunity.
But anyway, I dragged my sorry patooty out of bed, cajoled Sarah into waking up -- we were much more organized this morning -- in time to start Gary & Kathy's CRV and be waiting for Marcie to go with us. (Which only hints at the ... oh, I know there's a better word than coordination ... that all of this takes.) Pushing through the morning stiffness to make it down the stairs (with a silent "ow" for each step) and crossing fingers for no wrecks on I-5.
Waiting to see the surgeon, who takes out the rest of my staples (and the heavens open with singing), reviews my morning labs, prescribes baby aspirin to balance out my platelet count, and turns me over to the patient coordinator, "M". As in MI-5 "M", yeah? Whoa, there's a memory gap I must fix soon. Wonder if I have any Bond films around...
Ready to crash on the ride home. Headache from the meds kicking in with a vengeance, and the yogurt not feeling all that tasty anymore. I got home and napppppppppped away.
But hey, at 5:15 this morning I was looking at the most amazing full moon set right on the centerline of 6th Ave -- behind the traffic lights, that is -- and by 6:20 we were bombing around the exit onto 520 singing "Lady Marmalade" to the platinum light of dawn over the Cascades. That kind of gift has gotta count for something.
Monday, April 6, 2009
Sunday, April 5, 2009
Luckily I have Sarah here with me. We have giggled over wedding plans and dumb people in the park and that's good. Betsey is pouting, and the park is full of people and dogs, so all is as it should be.
Now I have to try to eat some more. . .
Every story has a beginning and an ending, which is cliche, but true. This story, my story, consists of many beginnings and many endings, intertwining and hinging and meeting and departing, in the complicated ways that lives and people and ideas and events do. But now seems a particularly good beginning, which, of course, begins with an ending.
Sometime in the afternoon or evening of Monday, March 23, 2009, Someone died. They were young, and they were healthy, and they were an organ donor. When they were pronounced dead, their family made the decision to follow through with donation. That is all I know about this person, and it may be all I will ever know. It is all I will tell.
They may know something more or less about me. They may know that on Wednesday, March 25, 2009 I received my "second birthday" in the form of a new liver. They may know that I have needed that liver (or was going to) for at least the last 25 years, that I am 38, and otherwise healthy. If they ever want to know more, I will tell them.
In the hinge that connects my beginning with the others' ending are countless other people and loves, and the wonder that accompanies it all. And even in the short space of 10 days I know that this will primarily be a story about gratitude. The thanks I owe my family, the professionals who do their jobs so well, the community that surrounds me, but also to that family and that Someone.
And in so doing, what was an anonymous donation can - much to my frustration - only be answered by an anonymous thank you. Thank you for giving me a gift and being generous not because you know me and love me, not only because it will help you through what must be the most tremendous time of grief for you, but because.
Thank you for the beginning.
Saturday, April 4, 2009
Hello, everyone -
I am trying to get a base level email out to everyone, since emails have been kind of random and background info has been spotty....
Tuesday morning I got "the" call from the UW Med Center that there was a potential liver match for me, and could I be in to the clinic by noon. I have been hovering in the "top ten" the way they figure things around here, but even though I was prepared I have always been more prepared for someone to be sicker than me. Even after 7 years it was all kind of a surprise!
Anyhow, I was in surgery all of Wednesday, in and out of it most of yesterday, and transferred out of ICU this afternoon. I don't need anything - but will want contact from folks after I get to move home. I plan to get some stuff done on "blogger" and so this will be the only mass email other than when I send out the blogger post.
For the next several days, though, I will be at the UWMC in Seattle, room 4334 if you want to call here. I will try to check emails but mostly will be out of it.
Shirley asked that I let you know she had a liver transplant yesterday. It was around a 10 or 11 hour surgery. She awake and doing well. We expect her to be moved out of ICU some time today. She's at the UW if you'd care to visit.Her sister Marcie and I are doing most of the email updates.
As far as I know right now, Shirley is scheduled to go into surgery at about 4:00 a.m. or thereabouts tomorrow. I will try and email, or have someone with computer access email you as soon as she is out of surgery for an update to let you know how she is.
Lisa Spandoni - I have a 'list' of things for you if you would please call me whenever it is convenient for you.
Everyone thanks for being there and your support. Shirley told me she will text people as soon as she is ready for visitors, but feel free to text me in the meantime if you want and I will give you updates.
Got a call from the UWMC this morning and am checking in with Transplant at 11:30. Am considering this a test run until I speak with the surgeon and surgery fellow to see if it's really a good match for me.
(And... assuming I don't have a sinus infection.)
I will keep everyone informed somehow... if nothing else Martin and Marcie will have access to my email and Facebook accounts and can send messages through there to my contacts list.
This is a test. When this 'blog was established 1) I was on mass amounts of narcotics and 2) at the literary mercy of my devoted typist, Martin. So all the funny stuff may be made worse or better as I edit.
Anyhow, I have not slept more than two hours at a time since I was under general anesthesia, and I'm a little nutsy. Ergo, my family are torturing me today by walking me around, talking to me (or rather patiently listening to me ramble on) and dosing me with amazing food and no pain killers. There's a madness to this method, but tomorrow (or rather tonight) should tell.
Hope this works!