Monday, November 16, 2009
But this year, I gotta say, I am pretty damned happy to be here. Not just here on Big Red with the cat and dumb sitcoms, eating my birthday cookies (and a sandwich) but here. In the big gestalt here kind of way. (Yes, I just did Google "gestalt" and I think it is the word I want.)
Confession: my time horizon has always ended at about age 45. At least, it has since some time during my early illness and diagnosis, when I overheard -- or maybe I was just the "third person" person in the room -- one of my doctors talking about that being the age at which I would be finished with this life. And that became my date.
Of course, this was before liver transplants were done commonly. There were few choices for immuno-suppressive drugs, and not a lot was known about AIH. And that became my baseline.
For some reason I never bothered to update my world view and change those assumptions. Thus my "do before 40 list" and my "bucket list" became synonymous and, sadly, I have done a really poor job thus far of preparing for retirement. I still have a hard time conceiving of being retired... of living that long.
And yet here I am at 39. Still haven't accomplished my do-before-40s (it's a SHORT list) and have started a new bucket list for the years beyond. And I'm happy about that. Plus I got the bonus today of ending one med (the valcyte) and one bloodtest since apparently the CMV is done with me for this time around.
That I have had a fabulous weekend is evidenced by the fact that every piece of silverware I have is in the dishwasher, and that there are bits of ribbon and packing peanuts throughout the living room (cat apparently had a long day). The fact that I have had a fabulous year is borne out by the blisters on my toes, the books on my shelves, the people I love and have seen or talked to over the last week, another file off my desk, and the smile I find at some point during every day.
The fortieth year of my life is going to be grand!!!
Tuesday, August 18, 2009
I managed a follow-up ultrasound that week, and a clinic visit with Dr. V the week after. He was very apologetic, telling me that if he had had any idea that I would be in so much pain he would have prepared me better. I told him that it was okay; we all had bad days and I was sure he hadn't planned such a rough procedure.
What made the difference for me was that, the Sunday after I came home from the hospital, I received a phone call from Dr. V. A dr has never ever called me at home. He was just checking in, wanted to know how I was feeling, wanted to tell me what the test showed, and when he wanted to see me next. I was nonplussed, and very impressed. I do expect directness from my drs, and kindness is a bonus, but this was way cool.
Sunday, August 16, 2009
About 20-25% of American adults do not have CMV. That means their immune systems have never worked up the antibodies to fight the virus.
CMV is an opportunistic virus, meaning it shows up when your immune system is depressed for some reason or other, and when the virus is activated, it can cause nasty illnesses -- and, in a pregnant woman, birth defects for her child. It can arrive as the flu - aches, fevers, sore throat. It can cause gastrointestinal distress. It can cause retinitis (and eventual blindness). It can attack the liver, the joints, and I bet it can even get your teeth. It's not generally passed on through casual contact... and it dies very quickly outside the body.
Anyhow, given the percentage of folks who are already positive, versus the percent who are negative, when transplants take place there's a 20 +/- % overlap of positive donors and negative recipients. They give hefty antivirals right after transplant to keep the virus at bay. After that, approximately 20% of the 20% go on to develop CMV.
Guess who hit that jackpot?
I started feeling crummy about two weeks ago, right as my family were all arriving in town for Sarah and Brett's wedding. My arms and legs really hurt, and I was t.i.r.e.d. By last Sunday I couldn't drag myself off Big Red, and slept almost all day. I also had a fever and a sore throat. By Monday I started to feel tight in my chest, and I broke down and called Nurse M.
6:00 Tuesday found me in my favorite University hospital giving all sorts of bodily fluids to the cause. Dr. H saw me and after 30 seconds said "I'll bet you $100 you have CMV." Yeah, like I was going to take that bet. :-) I knew I'd be back in on Thursday for more venous spelunking (soon will have another "recent misadventures" post) so figured I'd get meds then.
Woke up from my procedure Thursday morning to my darling Interventional Radiology docs saying "you are being admitted but this is totally not our fault -- we would let you go home today..." And I just laughed. I found myself in the same room I was in when I left the hosp in April, with the same nurses. Ahhhhh, home.
I got Thursday afternoon "off" and Friday was poked and prodded in various ignominious ways, and received a "PICC" line, which is basically an at-home iv that runs from inside my elbow, up around my shoulder, and stops just short of my heart. This is a quick and efficient way to get meds throughout the body ... with the effectiveness of oral medications on CMV still under scrutiny, fluid is the way to go.
Saturday consisted of lessons from the home health nurse, more visits from the infectious disease docs, and coming home. It will probably be the end of the week before I start to feel better, at least I hope I do by then. I am still sleeping all the time. As of this moment I've been awake for an hour and three-quarters and am longing for sleep. But I'm sure it will work.
Tuesday, July 28, 2009
Anyhow, it's always fun to visit with her. Visiting in the older-generation sense of the word: conversation that rumbles through mundane updates about life to broader musings about art, politics, the world, family, and of course city planning.
She was the first to ask (and I was somewhat surprised about this -- both that she was the first, and that she did ask) if I had named my new liver.
Of course I did. The second night home from the hospital, in a semi-lucid state of insomnia.
Because Betty had been taken by a pet bird, and Betsey being my cat, that was too close. But Friedan works...
Based on my rather minimal memory of The Feminine Mystique, the common unfulfilled housewife was "stuck" in a role of menial tasks, cleaning up others' messes, taking the leftovers of others' lives and making something meaningful out of them for both others and finally for herself. Keeping things clean, protecting the rest of the family, providing energy and food, and basically getting little recognition for the work she did.
It occurred to me that this is kind of like the liver's role in the body. (Remember, I said I was semi-lucid.) The heart is sexy and gets all kind of love (seriously) and is the center of our world. We speak from the heart. Things are our heart's desire. Then the stomach gets fed... it's the way to a man's heart, after all. We feel things in our gut. Lungs are obvious and big and we can see them at work by simply looking down. Eyes are the window of our soul... and so on.
Try to think of one with liver. You can't. In most cases "onions" comes to mind. Livers are pretty ugly, and big, and ungainly, and don't do a lot but clean up our messes.
On the other hand, they are also pretty cool. They grow back if they are damaged (see Prometheus -- funny that the liver's element is fire), are a big part of the 3rd Chakra in energy medicine, and if their energy isn't working, no part of the body's energy system is working.
Translation: if mother isn't happy, ain't nobody happy. Coming right back round to Betty.
Wednesday, July 15, 2009
Sigh. There are things that I am so vain about!
Friday, July 10, 2009
At one point during one of the worship services, I looked around and thought "if this many people are here and they all believe this, then there must be something true."
As I have grown up I have become less certain about the truth that comes from religion. (And somewhat less certain about the truths of faith.) But then I realized that there is a Truth that comes from commonality, from community, from shared burdens and shared goals... aw geez, how about this:
"These are really the thoughts of all men in all ages and lands, they are not original with me,
If they are not yours as much as mine they are nothing, or next to nothing,
If they are not the riddle and the untying of the riddle they are nothing,
If they are not just as close as they are distant they are nothing.
This is the grass that grows wherever the land is and the water is,
This the common air that bathes the globe. "
-- Walt Whitman, Song of Myself
Wednesday, July 1, 2009
The one that's been at the forefront lately is that I am really not anyone special... now, this is not a crisis of self-esteem, but factual statement that, beyond my own little sphere of awareness and purported influence... I am not that amazing. I am not a rocket scientist, I am not a parent, I haven't as yet made any lasting contribution to beauty in this world. I will never be a movie star or an Olympic athlete.
And, while I've had this amazing gift given to me, and this inexplicable opportunity to go on with my life ... I am not all that unique.
I guess this lesson started for real (again) when I was in Clinic about a month ago. I had a few hours to waste between appointments... and was ruminating on the fact that soon I will be "graduated" from the tx clinic and returned to my regular dr.
The UW has been adding "bling" to the wing which houses the tx clinics -- you know, the fancy signs and photos which contain quotes and vignettes about tx recipients. There are also posters. After I get past my cynical reaction ("wow, they are really preparing to compete with Swedish when they start doing liver transplants") I start to think "wow, these people are really something." One of the women is a mom, and a terrific softball player (the softball makes me jealous) ... one of the men is a heart/kidney recipient. One of the poster people had acute liver failure and was tx'd within a couple of months. They are attractive, and healthy, and smiling. And they are normal.
I get to Clinic and there are more of me. When I started writing this post (June 11, 2009) there were 179 people on the waiting list for a liver in Washington. Since 1990, there have been more than 1,400 liver transplants at the UWMC, and I am one of the 21 in the first quarter of this year. I am one of 12 Type O recipients. I am one of 4 women who has received a liver this year, and one of 3 recipients in the 35-49 age range (I am the only woman in my age cohort).
And I am the only me. Of a thousand other "me's".
When you consider that each organ donor has the potential to give organs to 8 others, plus countless recipients of tissue, there are thousands and thousands of “me’s,” who have experienced more or less what I have. It strikes me that I may be standing next to another organ recipient in the grocery store line.
On the other hand, I could be standing next to a living donor, or a family member of a deceased donor. Maybe mine.
I’m not entirely sure of the point of this rambling, which is why I think I have taken time to come back to finish. Perhaps, it’s because when I really think about it, there’s this new (and please don’t say duuuuhhh out loud right here; remember, I am a little slow) perception of the interconnectedness of the human community.
Let me try it from this angle: I did not do anything to deserve liver disease and a life of chronic illness. But conversely, I did not do anything to deserve a liver transplant in a world of limited resources. Like all the other “me’s” that there are, I just am.
One of the coinkydinky things that has happened since I’ve let this bumble around in my brain is that it’s become public that Steve Jobs (Apple CEO) had a liver transplant shortly after I had mine. Public debate has ensued about whether or not he used his immense resources to “work” the system and get a liver sooner than other people. (This is aside from the very legitimate conversation about whether the corporation’s Board should have disclosed his health issues.) It’s possible that his access to immediate transportation to any transplant center in the country enabled him to be more strategic in choosing where to go. I don’t doubt that his position and wealth increased his health care options.
I will admit to an ethical twinge. Then I realized that the line between Mr. Jobs’ privilege and mine isn’t really all that wide, and it is certainly grey. I have the immense privilege of a family which supported a good education, which led to a good job with great medical insurance. I have the good fortune to live in an area with one of the nation’s best transplant centers. I am privileged with a good brain that enables me to navigate a frustrating medical bureaucracy, and to find advocates to help me along the way. In short, I have benefited from an unfair health care system based on an accident of birth and geography, despite efforts (or lack thereof) to manipulate the system – and in that, I am no different from anyone else.
What frustrates me is that my last statement is a lie. I am different because I have benefited and because the system is unfair. The field is not equal. As much as the process is supposed to be blind and based purely on biological factors as a measure of illness and probability of imminent death (see MELD score) – which, on an individual level, I believe is true – in the aggregate there are divisions based on class, race, and geography about the access to any health care, let alone the specialized care which I have received. And I struggle with that.
At first, I railed against the idea of a transplant feeling guilty about my privilege and feeling certain that there was someone more deserving, more important, than I. Someone who was the sole source of support for their kids. Someone who was out there climbing mountains and exploring forests. Someone who was making music … or someone who was leading innovation in technology, employing thousands, and influencing the lifestyles of countless others.
At some point I came back around to (and am still learning this lesson, over, and over, and over, and over….) this: I have the same value as Steve Jobs, and so does that much older gentleman with hepatitis C who sits across the room from me and waits with his social worker to find out if he’ll get listed. Simply because we are.
Sunday, June 28, 2009
Bloodtests are all dead set normal (except for the platelets which still have to even out) but I need another ultrasound and my drug levels for one of the immunosuppressants are still all wonky.
Anyone who knows me knows it is no secret that I really, really, really like narcotics. Given a different life, I would be a junkie. In a different era, I would have been one of those ladies taking Laudenum. Morphine and its relatives have a wonderful, pleasant, velveteen mist that descends from the crown of my head and warmly envelopes all of my senses in sunshine. It's a sure-fire way to get that same feeling of utter well being that otherwise takes a perfect day floating on a river, or a just-right bed and the world's best pillow, or the most amazing delicate chocolate torte. You get the picture.
So anyway, when I know that I am going to get fentanyl, I am generally more than okay with the idea. I have had it myriad times over the last ten years or so -- there was a period of about 2 1/2 years during which I was having endoscopic exams every 6 weeks. I have a bit of a tolerance for the stuff. Fentanyl (or demarrol, for those who can take it) is frequently administered with Versed, which is an amnestic. It renders one conscious but completely oblivious.
Put bluntly: fentanyl controls pain, versed enables you to be controlled.
There's a ton of opinion out there about versed, and people who really, really, really hate it. They don't like the idea of not being able to control the situation, not knowing what is going on, not having input on their medical care, etc. I understand the point of view, but I guess it's never bothered me. In fact, it generally results in some really funny stories -- whenever I've had it I've been well in the care of family or friends, so they keep me out of too much trouble... I am very very lucid while on the cocktail, but I don't remember the entire day. It's kind of a nice little holiday from reality in an otherwise straight-laced life.
So when I showed up for my angiogram on May 28 I wasn't worried. I figured I'd be sedated for one or two hours, be out of the outpatient wing by night time, and able to join friends for dinner and games the next night. The clinic was running late, so I made it back an hour late, and spent another hour in prep, hooked up to an iv, and without anything to read and with no iPod to listen to. The prep area is a series of cubbies with curtains, so it's not at all private. I suppose Sarah could have been with me, but I was alone. The family across was waiting for radiology on tumors in the one gentleman's lungs. I gathered from their conversation that the woman's sister (the wife of the other man) had died of cancer. They all were or had been smokers. They were funny and joking in the way of really stressed-out people. There was also a man who was having some sort of procedure to relieve back pain - installation of a pump to deliver painkillers directly, maybe? I shouldn't have been listening... but what else do you do. There were two "codes" while I waited, and one woman who had an allergic reaction to the CT contrast fluid...
So anyway, it's easy to see why they get behind schedule.
The nurse anesthetist came to speak with me about the sedation, and told me what the procedure room would be like (like an operating room... ha ha like I'd ever paid attention inside one of those).
What I didn't expect was so many people. I think there were 5 actual personnel plus maybe 4 more students/interns. The room was big with a glassed off partition with more people and instruments. The angiogram takes place atop an x-ray machine, so everyone in there is operating in lead aprons (I think of their poor knees), which allowed them to guide the catheter to the right place.
I was out cold by the time Dr. V came in. I vaguely recall the soundtrack this day was classic rock, which is cool. (I once had an MRI that was about 1400 years long and it ruined James Taylor for me forever.) There was lots of activity.
Since I wasn't completely unconscious, there are things I do remember from the next -- oh yes -- four hours. Asking for more pain meds at least three times, and then descending back into a pale blue fog.
The only thing I remember about waking up the first time was being told that the procedure had taken about 3 times longer than expected, and they had had to "poke me" an absurd amount of times, each with progressively smaller catheters, because they could not work their way into the portal vein in order to expand the little balloon-type device to expand the vein. I found out not much later that, once there, the vein was blocked nearly 100%.
I also know that I hurt like hell. Not the baseball-sized bruise between my third and fourth ribs, but my entire right torso. I felt like I had been kicked repeatedly by horses, and then flipped around three or four times in a car filled with cannonballs. On the pain scale (1-10) I was fully at an 8. (I hesitate to ever tell that I'm at a 9 or a 10, because I am sure there is always something worse than whatever I might be experiencing at the time.) For me, a really bad charley horse is a 5, and some headaches can get to a 6. Post surgery I hovered in the 4-6 range depending on what I was trying to do.
What was even more pleasant than the pain was that every time I sat up above, say, 45 degrees (let alone walk), I would throw up. Now, considering that I hadn't eaten for - at this point - twenty hours, it was a pretty hideous experience. Not only for me, but for Sarah and Martin, who were hanging out with me. Obviously not going home on Thursday.
Friday rolled around and I hadn't slept and I still hurt terribly. We played "let's give Shirley drugs" all day. Different muscle relaxants, different pain killers (the oxys, atavan, codein, etc.) and still, every time I breathed the pain was excruciating. I think I had another ultrasound that day. I think I remember the nurses were nice. I think Martin was there most of the day, working. I think I was able to eat some clear foods.
The clinic were trying to get someone to admit me to the hospital. I wasn't allowed back to the transplant floor, and there weren't any beds on the correct floor for hepatology. They were also trying to get authorization for a self-administered pain pump for me. Until that time, I was just to wait in the ambulatory out-patient ward. I think Kathy and Gary came to visit and have dinner with Martin.
Saturday morning came. My parents were there with Marcie. I refused the pain pump and just begged them to let me go home.
The weird thing was that the dr. that was responsible for me (Dr. V) was at another hospital doing procedures all day, so getting discharge authorization took some work. The hitch was that if I needed pain meds he couldn't prescribe them since a real signature was necessary. I explained in what I thought were very polite tones, given the situation, that I had a whole bottle of painkillers at home so please couldn't they let me leave!
And I was out by 1. Thank the gods. With a new prescription for Plavix (yum) and still at a pain level 7. I could. Not. Breathe.
Thursday, June 11, 2009
Me: coffee-less. Stomach growly, with the two of them in the radiology waiting room. This room is slightly larger than my bed. (Not my bedroom, my bed.) And serves as the waiting room for about 400 different clinics. And people in there are not happy people -- mostly sleep deprived and food deprived, and worried. There are moms-to-be waiting for ultrasounds, people waiting for angiography, people waiting for MRI's and CT scans to tell them all sorts of scary things about what's in their body, and a tank of really forlorn fish.
The staff, however, are terrific. I have been there a LOT. I know. They are always friendly and efficient, and generally they operate on time. The only time I have had a bad time in radiology has been when I've been horribly ill (or recently surgeoned); and then it's all because of me. :-)
Anyhow, I was early, as always. When I've had CT's or ultrasounds, I have found that if I show up early, sometimes I can be seen early. So on this particular morning, we were in the waiting room by 9, and checked in, and waiting in what I wish was a quiet manner, but... well, that's hard for me and anyone from my corner of the genetic pool.
At about 9:15, a very nice lady in scrubs, hair cover, and raised mask joins the three of us in the waiting room, and -- all seats being occupied -- perches herself on the (tippy) occasional table, atop a pile of sudoku and crayons. She asks "I want to know what you think you are here for today."
This is not the question I was expecting. But I answered it anyhow: I think I am here for an angiogram, with possible angioplasty and a stent. EEEENNH. No points for me. The nice nurse points out that no, this is not a simple procedure and I need to have a clinic appointment with the dr. first to go over the procedure, risks, options, etc. Only today is not a clinic day and he is in a procedure, but since I am scheduled for the 10 a.m. time he can see me in his office.
Now, I have no qualms about a dr. wanting to see me before he sticks large needles and catheters into my liver, but I have put my trust in the scheduling gods in the tx clinic, and have assumed that they communicate with other dr.s who will be doing procedures. Maybe they do. Maybe they don't. In this case, I was actually really pleased that the dr. was willing to be flexible to do an office visit on a procedures day, and to go through the process with me.
Plus I got the chance to get coffee and breakfast before meeting with him.
By 10:30 (they do run late, after all) Sarah and I were being escorted into the small windowless office in a bank of physician offices. Do these people get any benefits? I think it would be possible to be a staff member at that hospital and, during NW winters, not see the sun for months at a time. But I digress.
Dr. V was not what I expected. Let's just say that he has a name which would imply a particular ethnicity and a personage which belies that name. But after that initial "huh" moment, he is a nice nice gentleman. For instance, this is the first time that a dr. has brought up images of a CT or any other imagery of my myriad tests. I think it's just my failure to ask (they are all electronic and available to any dr.) but it was nice to have that as a starting point.
An aside: my new liver is smooth, and happy looking. Like the pictures you see in text books. I haven't yet seen a picture of my old liver; I will have to ask about that.
Dr. V explained the method for a percutaneous transhepatic angiogram -- which basically means they go through my skin right into my liver, and cross the liver till they get to the portal vein. There would be some pain - but not as much as possible because, well, I don't have any nerve endings in my new liver. I still do in the rest of my body, though! The dr. explained the possibilities of what could/would happen once inside - that the first attempt would be angioplasty (i.e., insertion of little balloons, then inflation) to clear the blockage in my vein. He discussed the possibility of a stent, which was later ix-nayed by Dr. H. He talked about the sedation and the effects of sedation (with which I am well accustomed). Then he handed me the patient release.
I think this is where I got myself in trouble. I actually read the release... Yeah, I know, I should have been reading all the fine print before, but skimming always proved that I had already received all the information verbally.
One clause elicited a "huh" from me: the statement that, due to the maneuvering of the catheter within my body, or due to the position in which my body would be placed during the procedure, it was possible that I would experience additional pain, like back pain. I allowed as to how every time I'd had procedures before, I had had residual pain in my upper back and sometimes shoulder, and that no doctor had ever really believed me... so I felt a little vindicated that this was actually stated with the angiography.
We arranged for an appointment the following Thursday, May 28.
Sarah and I played hooky the rest of the day, and it was an unexpected day, and it was fun. When the sun shines here it is so glorious, and when you have a borrowed little red car and a gracious niece, the world is good.
Sunday, June 7, 2009
Okay, let me start from the beginning, and 'splain what it is that the portal vein does. Apologies for my tenuous grasp on anatomy... but if you want totally specific information you'll have to do your research.
ANYWAY, it's a little-known fact that the liver exists almost entirely on dirty blood. That is, about 80% of the liver's blood supply comes from the stomach and the small intestine, after those two organs have done their peristaltic and enzymatic magic and imbued the blood with all sorts of raw materials for living. The liver then takes that dirty blood and not only takes care of itself but also takes those materials and refines them into useable stuff for the body -- proteins, sugars -- and processes out the waste matter. This chemical cooker also creates heat and energy for the body to use.
Well, that 80% of the blood travels through one key vessel: the portal vein. This vein is about 8 centimeters long and one centimeter in diameter and is located roughly at the level of the bottom of a bra strap (only on the other side of the spinal column). It consists of the junction of two major veins which in turn drain all of the abdominal organs. The lienal vein brings in blood from the stomach, pancreas, and the descending and lower parts of the intestinal system via the spleen -- if I had a spleen -- but those have been rerouted for the direct connection. The mesenteric vein, roughly to the left/lower portion of the whole intersection, brings in blood from the middle parts of the digestive system, all the ascending and transverse parts, and parts of the stomach.
So it's kind of a big deal.
When I got my new liver, my old vein was hooked to the new vein at about the 4-centimeter mark. There was a blood clot there that took some time to remove in surgery, and then there were sutures there (are they called sutures when they're inside?) to connect my old portal vein to the new one. The two were/are probably close to the same size, but since the portal vein is often messy when there's been long-term cirrhosis, the old and new ends may have been different.
Portal vein hypertension -- that is, too much blood pressure in the portal vein -- is also a big deal. It's one of the effects/indicators of liver disease. Basically that portal vein gets blocked, scarred, or otherwise mucked up so that the blood cannot get into the liver. Therefore it tends to back up... and then take the path of least resistance. Blood that backs up into the vein through the stomach pushes its way out through the capillaries in the stomach or esophogus walls, causing varices. Those are varicose veins in the stomach/esophogeal lining which can burst without notice and cause a person to bleed to death. I had been taking blood pressure meds to prevent such bleeds for about the last 5 years. Portal vein hypertension can also cause bleeding in other parts of the intestinal tract, can render the body inable to rid itself of fluids (resulting in the round, hard stomach), and can cause a pattern of varicose veins on the lower abdomen. I have had the pleasure of experiencing all of the above (not so bad with the abdomen veins, though).
So when I had the routine ultrasound to look at blood flow in my liver, and the follow-up CT, both of which showed that the portal vein was narrowed, it needed to be fixed. As Dr. H said it: 'we expect you to have this liver for a long time and we want it to function perfectly' and thus I was scheduled to meet with Dr. V, the Inteventional Radiologist, for the angiogram...
Monday, June 1, 2009
Tuesday, May 19, 2009
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
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
But here's a good link, which backs up what I knew beforehand. The pictures are gross...
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
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
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
Maybe it's just cuz it's grey outside.
Thursday, May 7, 2009
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
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.)
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...,
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...