Today is my birthday. Everyone who saw me today, or knows me on Facebook, has been WELL aware of this fact for at least a week. I generally make a big deal about ME on my BIRTHDAY. I am 39. For real.
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!!!
Monday, November 16, 2009
Tuesday, August 18, 2009
Misadventures Part IV
The whole not-breathing thing lasted till the following Wednesday. The dt's from all the meds lasted through Sunday. I didn't work Monday but was able to be up and about the next day. I was pretty damned miserable, since I wanted to be active but couldn't really breathe, so no walking.
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.
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
Behind Door #2...
Approximately 75-80% of American adults have CMV. That's cytomegalovirus, and it's pretty certain that it's a relative of herpes, epstein-barr, and mononucleosis. It lives in the body, happily cooking along and not really showing up in healthy people.
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.
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
Total Betty
A few weeks ago Martin and I went to visit a friend in her new home. We took her the traditional house-warming gifts of sparkling fruit juice, cake, and ridiculously expensive black salt. I like to think outside traditional boxes, sometimes.
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.
Friedan.
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.
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.
Friedan.
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
7.15.09 Tx Plus 120 days
As predicted, my hair has been falling out - almost by the handful - for the last two weeks. It should stop in two weeks, but if not, I will be looking at cute short hairstyles.
Sigh. There are things that I am so vain about!
Sigh. There are things that I am so vain about!
Friday, July 10, 2009
Coda: To Be/Is/Am/Was/Are
When I was a senior in college I trekked to Urbana, Illinois, for New Years to go to a ginormous missions conference with Intervarsity Christian Fellowship. It was three days packed into the Illini Dome... something like 20,000 college juniors and seniors.
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
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
To Be/Is/Am/Was/Are
I guess there are lessons I am destined to learn over and over, regardless of how many times life slaps me upside the head. Cilantro is not going to taste good this time, either. Do change the oil in the car. The third cycle on the toaster is never a good idea. Lift up your feet when you are walking.
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.
Like me.
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.
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.
Like me.
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
06.28.09
Did not 'graduate' from the tx program on Friday. Somewhat bummed but also wasn't in the right "space" to deal with it on Friday. Besides, "M" wasn't there and the clinic is such a vastly different place without her.
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.
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.
Recent Misadventures, Part III
I generally start out procedure days with the Ramones.
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.
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
Recent Misadventures, Part II
May 22 started at oh-dark-thirty, as usual, for the 6:30 blood draw. Fasting, you know, since I was scheduled for sedation at 10, and involving the patented Schultz family transportation nightmare. To wit: Marcie leaving Kitsap at dawn to pick me up to go get Sarah since Sarah doesn't have a car to go to the UW where Marcie will meet Neal who has his car so the two of them can roadtrip to Wyoming and Sarah can drive me home and stay with me and have the car for the week.
Phew.
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.
Phew.
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
Recent Misadventures, Part I
I think the last time I posted a legitimate update I wrote about "oh crap, I need an angiogram." I was scheduled for May 22 and was not looking forward to it, only it didn't happen that day...
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...
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
06.01.09
Must write. Much to write about.
First must surpass block -- writing actual real letter to donor family.
Then will 'blog.
Will be awhile.
First must surpass block -- writing actual real letter to donor family.
Then will 'blog.
Will be awhile.
Tuesday, May 19, 2009
05.19.09
Someone turned the cold back on. It was sunny this morning when we left for Seattle!
I "get" to have an angiogram on Friday. I am not ultra-excited about the sedation and the loss of a day, but I suppose I'll make it through. They will thread down through my neck (more vampire bites, please!!!!) and through my liver and then back up into the portal vein, to make sure that any scarring is adequately cleared out, or whatever.
I think I should have paid attention in science.
This also means I am not 'free' from the tx clinic, which is okay, too. I was mean today and teased the surgical resident (age: approximately 14)... we had been talking about surgical hernias and I pointed out to where I had had one before. He asked what the surgical scar was, and I noted that I had had a biliary stent migrate out.
What I didn't know was that he was looking at my splenectomy scar, which is totally in the wrong place for a stent migration; it's not immediately obvious that my new tx vertical scar is immediately over the previous scar. He got a little flustered and I just laughed. Then I was reminded "please don't tease the health care professionals." :-) Senses of humor in doctors are typically a good thing.
Now I'm home and debating the merits of a nap after 3:30. It's probably ill-advised if I care to sleep tonight. Harumph.
I "get" to have an angiogram on Friday. I am not ultra-excited about the sedation and the loss of a day, but I suppose I'll make it through. They will thread down through my neck (more vampire bites, please!!!!) and through my liver and then back up into the portal vein, to make sure that any scarring is adequately cleared out, or whatever.
I think I should have paid attention in science.
This also means I am not 'free' from the tx clinic, which is okay, too. I was mean today and teased the surgical resident (age: approximately 14)... we had been talking about surgical hernias and I pointed out to where I had had one before. He asked what the surgical scar was, and I noted that I had had a biliary stent migrate out.
What I didn't know was that he was looking at my splenectomy scar, which is totally in the wrong place for a stent migration; it's not immediately obvious that my new tx vertical scar is immediately over the previous scar. He got a little flustered and I just laughed. Then I was reminded "please don't tease the health care professionals." :-) Senses of humor in doctors are typically a good thing.
Now I'm home and debating the merits of a nap after 3:30. It's probably ill-advised if I care to sleep tonight. Harumph.
Monday, May 18, 2009
The List (in progress)
This is a companion post to "things I wish I'd done differently" which of course I haven't written yet.
I have been cleaning house for the last few hours (okay, 2, but who is counting?) and putting stuff away, and thinking about some of the things that have been really really useful the last 8 weeks... so here is the beginning of a list which I think is helpful for future tx patients, or really, for anyone who is having major surgery. If you read this and have additions, let me know!
1. A lightweight flannel blanket/heavy flannel sheet. The more it's been washed the better. This can be your security blanket, plus it's the right weight to tote around on car trips to the doctor, and it's good to roll up and use for propping body parts when sitting or when in bed. I stole mine from my sister Kathy... but I think it may have originated with my grandma. It's still in my bed in a big long noodle shape.
2. Undergarments (I'll try to be delicate - yuk yuk yuk - with this). If you have any endowment in the upper body, it's good to have an unstructured bra or two. This can be really ugly and really cheap - in fact, it shouldn't have too much elastic or any clasps or anything. These can be surprisingly hard to find (check the Jr's section). The idea is not to support so much as to lift the girls up from sitting on top of your incision, plus it's easier to sleep. For later on, make sure you have at least one bra that doesn't have a thick band along the bottom. It may interfere with an incision, too.
3. Undergarments (the other end). At least two pairs of them, about two sizes larger than normal size. Preferably with little or no elastic on the legs, and low cut if you can find them. Boy shorts or boxer shorts... it's either that or go commando for awhile. (Ick.)
4. Cottonelle wipes. Leave your eco-conscience at the door and put your plumber on speed dial. These are really nice to have around when your mobility is limited and your intestines are freaked out by drugs.
5. A supply of gauze pads and tape for the various and sundry holes you will have. The nurse will tell you what/how to cover. My nurses suggested kotex or mini pads, which are, indeed, fabulous (and cheap), as long as you put them the right side down. (Men may need instruction with this!) Can be a little bulky so gauze pads are still nice for going out or having visitors.
6. Non-scented everything. Switch over. At least for me, any minor smell made me gag when I came home. Weird stuff, too, like toast.
7. Bring out your inner Hef and get satin jammies. Not only will you look totally stylish but they are much easier to roll over in, slide into chairs, go out dancing...
8. A hand held shower. It will make you so happy.
I have been cleaning house for the last few hours (okay, 2, but who is counting?) and putting stuff away, and thinking about some of the things that have been really really useful the last 8 weeks... so here is the beginning of a list which I think is helpful for future tx patients, or really, for anyone who is having major surgery. If you read this and have additions, let me know!
1. A lightweight flannel blanket/heavy flannel sheet. The more it's been washed the better. This can be your security blanket, plus it's the right weight to tote around on car trips to the doctor, and it's good to roll up and use for propping body parts when sitting or when in bed. I stole mine from my sister Kathy... but I think it may have originated with my grandma. It's still in my bed in a big long noodle shape.
2. Undergarments (I'll try to be delicate - yuk yuk yuk - with this). If you have any endowment in the upper body, it's good to have an unstructured bra or two. This can be really ugly and really cheap - in fact, it shouldn't have too much elastic or any clasps or anything. These can be surprisingly hard to find (check the Jr's section). The idea is not to support so much as to lift the girls up from sitting on top of your incision, plus it's easier to sleep. For later on, make sure you have at least one bra that doesn't have a thick band along the bottom. It may interfere with an incision, too.
3. Undergarments (the other end). At least two pairs of them, about two sizes larger than normal size. Preferably with little or no elastic on the legs, and low cut if you can find them. Boy shorts or boxer shorts... it's either that or go commando for awhile. (Ick.)
4. Cottonelle wipes. Leave your eco-conscience at the door and put your plumber on speed dial. These are really nice to have around when your mobility is limited and your intestines are freaked out by drugs.
5. A supply of gauze pads and tape for the various and sundry holes you will have. The nurse will tell you what/how to cover. My nurses suggested kotex or mini pads, which are, indeed, fabulous (and cheap), as long as you put them the right side down. (Men may need instruction with this!) Can be a little bulky so gauze pads are still nice for going out or having visitors.
6. Non-scented everything. Switch over. At least for me, any minor smell made me gag when I came home. Weird stuff, too, like toast.
7. Bring out your inner Hef and get satin jammies. Not only will you look totally stylish but they are much easier to roll over in, slide into chairs, go out dancing...
8. A hand held shower. It will make you so happy.
Thursday, May 14, 2009
What I know: surgery
About the surgery is pretty limited. Duh. Being sent to the depths of sleep will do that to a girl.
But here's a good link, which backs up what I knew beforehand. The pictures are gross...
http://www.surgery.usc.edu/divisions/hep/patientguide/livertransplanttour.html
but anyway.
One thing they do is re-route the inferior vena cava, which conveniently goes between the liver's lobes and drains all the used blood from the lower half of the body back to the heart. So re-route might be a bad word, but clamp it off and send it elsewhere? I don't think they do bypass, or at least not on me, because I don't have the commensurate "holes" for the tubing (e.g., a notch in my upper right thigh.), I don't think. Anyhow, they do that relatively soon after the incision, then get about detaching the liver itself.
Another thing that happens to liver tx recipients is that they forevermore do not have a gallbladder. The old one has to go, and the new one can't be transplanted, so there you have it.
When they are attaching the new liver, they see how functional the common bile duct is -- the spot where the intestines connect to the liver and/or the gall bladder. Mine had been, er, damaged might be the best word, or well-used, due to a series of ERCP's (the short name for a long procedure that involves swallowing a camera that then takes a right turn into the bile duct). Therefore I know that the surgeon had to create a new connection using a nearby stretchy piece of my intestines. Ick!
I was in surgery 11.5 hours, give or take. Apparently there was a big clot in my portal vein (? yes? I think that and not the hepatic artery) that took time to clean out. I didn't ask whether the clot was on "my" side or on the graft's side, but blood doing what it does, having pooled there for awhile, there was a clot. I am now wondering if that is related to the stricture that may or may not be there...
Some time I am going to read my medical record so that I know more. I am curious as to what my old liver looked like, and did they do any pathology with it? I want the chronology, just because.
And that's all I know for now. When I emerged I had a central line with 5 tubes on the right side of my neck (resulting in a great vampire scar!), the naso-gastric tube, the entubation/breathing tube, an incision which I have yet to measure or count the staple marks, two Jackson-Pratt drains (more on those later), a catheter, and at least one additional IV. I think I am glad that I was unconscious.
But here's a good link, which backs up what I knew beforehand. The pictures are gross...
http://www.surgery.usc.edu/divisions/hep/patientguide/livertransplanttour.html
but anyway.
One thing they do is re-route the inferior vena cava, which conveniently goes between the liver's lobes and drains all the used blood from the lower half of the body back to the heart. So re-route might be a bad word, but clamp it off and send it elsewhere? I don't think they do bypass, or at least not on me, because I don't have the commensurate "holes" for the tubing (e.g., a notch in my upper right thigh.), I don't think. Anyhow, they do that relatively soon after the incision, then get about detaching the liver itself.
Another thing that happens to liver tx recipients is that they forevermore do not have a gallbladder. The old one has to go, and the new one can't be transplanted, so there you have it.
When they are attaching the new liver, they see how functional the common bile duct is -- the spot where the intestines connect to the liver and/or the gall bladder. Mine had been, er, damaged might be the best word, or well-used, due to a series of ERCP's (the short name for a long procedure that involves swallowing a camera that then takes a right turn into the bile duct). Therefore I know that the surgeon had to create a new connection using a nearby stretchy piece of my intestines. Ick!
I was in surgery 11.5 hours, give or take. Apparently there was a big clot in my portal vein (? yes? I think that and not the hepatic artery) that took time to clean out. I didn't ask whether the clot was on "my" side or on the graft's side, but blood doing what it does, having pooled there for awhile, there was a clot. I am now wondering if that is related to the stricture that may or may not be there...
Some time I am going to read my medical record so that I know more. I am curious as to what my old liver looked like, and did they do any pathology with it? I want the chronology, just because.
And that's all I know for now. When I emerged I had a central line with 5 tubes on the right side of my neck (resulting in a great vampire scar!), the naso-gastric tube, the entubation/breathing tube, an incision which I have yet to measure or count the staple marks, two Jackson-Pratt drains (more on those later), a catheter, and at least one additional IV. I think I am glad that I was unconscious.
Wednesday, May 13, 2009
05.13.09
It must be May 12 because I have a sticker on the back of my jacket saying it is so. Let's just say that the sticker migrated to Martin yesterday and somehow made it back to me for the next 36 hours.
We are at war.
And, oh crap. My ultrasound was a little questionable, so I have to have a CT scan next Tuesday morning... which are just about my favorite thing. (It's a tossup as to what I like best: the IV, the metallic taste of the contrast, or the feeling that I have wet myself.) They want to see if I have a stricture (scar tissue?) or some other narrowing of my portal vein.
I called the nurse back to determine the panic factor. As of right now there is none - we have to wait for the CT results. If there *is* a problem (which the internets tell me is kind of common with tx) then it can be treated with angioplasty or something else which I forget right now. Yay. I hope the ultrasound was wrong. Sigh.
All this when I was getting excited to get back to normal! Oh well. I still am pretty normal. Got a couple of miles in last night and this morning, and will probably head out again this evening if the rain is not torrential. Wish it was warmer.
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
5.12.09
It must be May 12, because I have a sticker on my sweater with that date, signifying that I answered all the swine-flu screening questions okay at the UWMC this morning.
Marcie is too ambitious. I arrived this morning at 6:15 of all the ungodly hours, 24-hour urine sample in hand (well, in jug, in hand) and managed to actually finish the whole morning a half hour early - after an ultrasound (which did not hurt as much as I had thought it might, what with all the poking in my side and all, plus they now have a goo warmer!) and a dexa scan (where the tech actually asked if I was a dancer because my hip muscles flex -- ha ha ha ha ha ha ha!!! -- then when I laughed he asked if I was a runner!!!!) I tell ya...
We had time for breakfast with Marty, where I made the smart decision to have egg beaters and accessories rather than the blueberry waffle I initially wanted. Of course now I am craving maple syrup, so.... :-)
I had time between the oh-dark-thirty lab and the ultrasound, so I wandered the corridors of the UWMC. (Does that count as my walk for today?) and located the surgery, the waiting room, travel medicine, repiratory functions lab, and all sorts of fun things. I didn't linger at (or really even look in) the waiting room. It looked overlit and sad.
It's still interesting to see people at clinic blood draw. The woman who was my next-door neighbor in the hospital (who got her tx right before I got mine) was there today, she looks as well as I do. The woman who was new last week was wincing less this week. Cute Kidney tx guy (as I call him) came with someone other than his girlfriend.
And then, on the way home, I got a little sad thinking that next week could possibly be my last Tuesday morning trudge. I see the surgeon on Tuesday and if all is well they will send me back to Dr. K, and I'll have a little more leeway on when I have blood draws, I think, and won't be part of a "cohort" anymore. It seems too soon. It seems like there are a lot of questions I still need to ask, a lot of things I still need to know.
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
05.11.09
It's Monday, and, true to form, I am crabby. I don't want to work this afternoon, and I don't want to get dressed, and my house needs to be dusted and the cat needs a bath. I am tired of my body being sore -- the entire swath around my lower right side just aches, radiating out from the incision (which goes 3/4 the way around my side toward my back) with what I'm assuming is muscle pain. Standing for a long time hurts (the mall yesterday afternoon nearly killed me) and I am beginning to fear that I'll never be able to wear heels again. I know, how shallow am I?
Maybe it's just cuz it's grey outside.
Maybe it's just cuz it's grey outside.
Thursday, May 7, 2009
What Happened Then
Of course I didn't sleep a lot the night before surgery. I have vague recollections of television and the hospital's movie channel. There were infomercials, too. I don't know if they gave me a sedative, maybe they did.
Marcie and Erich arrived before 4 on March 25. They apparently had to speak to security guards, as there aren't a lot of people around the hospital at that time of the morning. Apparently there's no way to get a parking stub, either... these were all small parts of the chit chat that morning. Erich is mellow. And sweet, and a typically weird 18 year old. (He's 19 now.) And sweet to give up a day of spring break to be with his mom.
The people (hospital assistants? OR staff? aliens?) arrived to transport me to surgery a little after 4:30. I was able to transfer myself to the guerney (sp?) to be rolled into the bowels of the hospital. I made sure that Marcie had all of my things (the five things that I had brought with me, and my wallet and phone...) and suggested that they go for coffee for awhile before going to the waiting room. Erich squeezed my hand, Marcie kissed my forehead.
I know I talked to my drivers on the way to the OR. I recall getting into the elevator. The UWMC is a sprawling facility which has been addended and remodeled about a billion times; I have no concept (even with my great sense of space and direction) of where, exactly, the operating rooms are. Somewhere Below.
Pre-Op is like a stable. Privacy curtains about 3/4 the length of each bed, and I think there may be 12 - 16 spots in the room for patients? (Hard to see from the horizontal.) That time of morning is shift change, so there was a low hum of passing conversation about how busy the last shift was, what's lined up for the day, who was going out for breakfast after work, what surgeons were on call, etc. I'm pretty sure families aren't allowed in there, but it seems to me that I saw the family come in with another patient. I was staring at the ceiling for the most part, though.
It was there that I got a second IV inserted. I met the anesthesiologist... briefly at first, enough time for us to establish our common German heritage (mine by name, his by thick thick thick accent), then he wandered off to order drugs. By the time he came back he re-introduced himself and his associate as my soon-to-be-best friends. I said in a mockery of complete and utter shock "what? I said no anesthesia! we are going to do this with a bottle of scotch and a rag to bite on!" Well. I thought it was funny at the time, and I think the dr. laughed. The nurses did.
I have been asked if I was scared. Or worried. Or excited. I have to say none of the above. It's hard to describe. The surreality of the surroundings impacted my ability to think beyond my breathing. The magnitude of what was about to happen hadn't really sunk in (I'm not so sure it has even yet). Having had abdominal surgery in the past, I knew fairly well what I was in for in terms of recovery pain. And beyond that, well, I believed the staff would do their jobs well. There wasn't any way to worry about prior decisions, or fret about the future. I just had to be.
The last think I remember is being wheeled toward the ER, with the warning that it might be cold and bright in the room. I was warm, so I think I said something about not being worried about that. There was music on. In the back corner on my left side there was a team of doctors seated on stools at a table working on the graft. And then I shut my eyes.
Somehow, I also remember in a lull of the activity that I did have the presence of mind to breathe deeply. When I'm on a heart/oxygen monitor I like to play with the screen and see if I can slow my heart rate and make the blips do different things. Breathing helps that. In the space of that breathing I also concentrated on making a welcoming place for my new liver. And being calm.
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
05.04.09
Today is a work at home day.
I see how the office thing, the going back to my world of environmental reviews and permits and meetings and customer service, the embroilment in the drama of the workplace... can be distracting from the real work of my life.
This time of working only part time is really aimed at maintaining the balance. The ability to stay calm when buttons are pushed, to remind myself to get up from a long (if interesting) document to get a nutritious lunch, to break for a walk in the middle of the day, to sleep when I need to sleep.
I want to keep up with writing. A lot of it still goes on in my head, mostly because I let other things push it out of my daily timeline. But in so many ways it's my sanity.
My days have been getting fuller. (Ick. More full?) It's been since at least last Tuesday that I had a long stretch of time when I thought "what will I do next" and Tuesday it's just because I was exhausted. Social events Thursday on were good for me. I am a bit wary of being too close to other people and am not all that excited about restaurant food or party food, but that will come back to me. I hope people around me understand a little when I sit at the back of the room, or don't take them up on the offer of the mayonnaisy salad that's been sitting out for 3 hours, or... :-)
Maybe I'll just take it up permanently as an affectation. I needed something to make me more weird. Weirder. (Now that word I like.)
I 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.)
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