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.
Showing posts with label Ewww - ick (Possibly TMI). Show all posts
Showing posts with label Ewww - ick (Possibly TMI). Show all posts
Tuesday, August 18, 2009
Sunday, June 28, 2009
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, 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.
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.
Sunday, April 26, 2009
Oh wait, it's "turn and face the STRAIN"
Well, with apologies to Mr. Bowie, I like my misunderstood lyrics better. Change is only sometimes difficult, but it's almost always strange.
Here are some other things.
My skin has entirely shed itself.
I can't quantify it, but while I am still sleepy and get tired due to, oh, I don't know, major surgery or something, there is not the bone-deep exhaustion that has been my companion for the last as long as I can remember. Sure, I am still up for an attempt at 16 straight hours of sleep, but I really don't think I'd succeed. 8 seems to suit me fine now.
There is no lingering dull pain below my right ribs.
All my hair is falling out - this is typical after a physical trauma (also happens after childbirth) so approximately 4 months from now I'll have a much larger than usual proportion of new hair.
My eyes aren't tired.
However, as previously mentioned, I still hate mornings. Mondays especially. And I still cannot dance. Siiiiiigh.
And, who knew? I like milk.
Here are some other things.
My skin has entirely shed itself.
I can't quantify it, but while I am still sleepy and get tired due to, oh, I don't know, major surgery or something, there is not the bone-deep exhaustion that has been my companion for the last as long as I can remember. Sure, I am still up for an attempt at 16 straight hours of sleep, but I really don't think I'd succeed. 8 seems to suit me fine now.
There is no lingering dull pain below my right ribs.
All my hair is falling out - this is typical after a physical trauma (also happens after childbirth) so approximately 4 months from now I'll have a much larger than usual proportion of new hair.
My eyes aren't tired.
However, as previously mentioned, I still hate mornings. Mondays especially. And I still cannot dance. Siiiiiigh.
And, who knew? I like milk.
Friday, April 24, 2009
Turn and Face the Strange
There are all sorts of oddities and quirks that I have noticed are g-o-n-e post tx.
For instance, the aforementioned freakishly white eyes... I had been so accustomed for so long to having a lovely butter tint to the whites of my eyes that for the first several days (compounded by the reduction of visual acuity) my eyes did not seem my own.
When the liver is failing, it stops making the proteins and other such good stuff that knits the body together. One key thing is that the walls of blood vessels tend to get porous -- in fact, an indicator of liver disease is the presence of "spider angioma" which are little burst blood vessels underneath the skin... along with esophogeal varices, which are what they sound like - varicose blood vessels in the esophagus and the stomach. I had both -- I'd had the angioma as I was diagnosed... most prominently along my left arm and a burst vessel underneath my left eye (normally they are around the torso, I guess). Like the yellowness of my eyes of those were gone within 24 hours of surgery. [p.s. after reading more about this, it's likely that angioma are due to the liver's inability to keep estrogens where they belong...]
Also, in the beginning of March I had had my annual physical, and complained of chronic sinus problems and nosebleeds. The sinus issues are gone... I think possibly due to the gargantuan amounts of anti-everything I am taking... but no more nose bleeds. I have also not had a whit of heartburn... which was prevalent prior to tx even with anti-acids and bland food.
And one day about a week after returning home I looked in the mirror and I was verifiably PALE. Like, white. Not the "tan" most people noticed, not yellow, but just plain, ghostly white. Now, that wasn't all so healthy... but it was certainly different!!!
For instance, the aforementioned freakishly white eyes... I had been so accustomed for so long to having a lovely butter tint to the whites of my eyes that for the first several days (compounded by the reduction of visual acuity) my eyes did not seem my own.
When the liver is failing, it stops making the proteins and other such good stuff that knits the body together. One key thing is that the walls of blood vessels tend to get porous -- in fact, an indicator of liver disease is the presence of "spider angioma" which are little burst blood vessels underneath the skin... along with esophogeal varices, which are what they sound like - varicose blood vessels in the esophagus and the stomach. I had both -- I'd had the angioma as I was diagnosed... most prominently along my left arm and a burst vessel underneath my left eye (normally they are around the torso, I guess). Like the yellowness of my eyes of those were gone within 24 hours of surgery. [p.s. after reading more about this, it's likely that angioma are due to the liver's inability to keep estrogens where they belong...]
Also, in the beginning of March I had had my annual physical, and complained of chronic sinus problems and nosebleeds. The sinus issues are gone... I think possibly due to the gargantuan amounts of anti-everything I am taking... but no more nose bleeds. I have also not had a whit of heartburn... which was prevalent prior to tx even with anti-acids and bland food.
And one day about a week after returning home I looked in the mirror and I was verifiably PALE. Like, white. Not the "tan" most people noticed, not yellow, but just plain, ghostly white. Now, that wasn't all so healthy... but it was certainly different!!!
Monday, April 13, 2009
No, I don't want fries with that
Okay, a confession.
Well, not so much a confession to myself and anyone who has been around me for more than an hour or so at a time. I used to eat like crap. That's the only way to put it. And now I am paying pennance for that lazy attitude toward food.
When I first started the workup program at the UW I began to see their pre-tx dietician. I generally do not like RD's because they are all terribly thin, and none of them has ever so much as had a twinkie touch (usually) her lips during this lifetime. Nor have they ever craved french fries or mayonnaise. I was a vegetarian/semi-vegan at the time, and despite my careless habits, I tend to be pretty well educated about food, food portions, nutrients, etc. I guess that really just puts me in the camp of "typical american woman". So with me, it was not a matter of education, but a matter of will.
Which I did not have. I remained largely non-compliant with the pre-tx dietary guidelines: lots of protein, no salt, little sugar, and lots of fruits and veggies. Ha! I can tell you that more than one day in the week prior to my surgery, my diet consisted of coffee, candy, and some sort of carb like pasta or bread. Maybe a piece of fruit if I remembered it... or gallons of herbal tea.
Cut to release from the hospital, and very very very stern direction from the surgeon, the nurses, and a new (! improved !) dietician team ... combine that with the ministrations of my familia... and here I am, protein loaded and .... grrrrr. I am required to have nine - that's nine - servings of protein a day. By the time I eat that there's not a lot of room left for anything else, you know... but if so, I have to have peas or carrots or an apple or orange.
I sort of regret it, and know that my appetite will resume normality, and then I'll get whiplashed back into calorie-counting within the framework of lots of protein and no salt, but my activity level will also increase and I'll be able to do this whole balanced-diet thing. Right now it's still hard. Anyone who's ever committed to a complete dietary change overnight (all you grrls say hey!) can relate.
The recouperating time is as much, for me, about creating good habits and taking care of myself as it is about physical healing. But then, I think that creating good habits is part of the larger idea of healing... now that I have a liver that will actually take the fuel it's given and do the hard work it takes to create proteins, and process sugars into energy, I owe myself that much. It will be odd to actually have an appetite. I have no concept of what it will be like to have a renewed amount of energy...
Well, not so much a confession to myself and anyone who has been around me for more than an hour or so at a time. I used to eat like crap. That's the only way to put it. And now I am paying pennance for that lazy attitude toward food.
When I first started the workup program at the UW I began to see their pre-tx dietician. I generally do not like RD's because they are all terribly thin, and none of them has ever so much as had a twinkie touch (usually) her lips during this lifetime. Nor have they ever craved french fries or mayonnaise. I was a vegetarian/semi-vegan at the time, and despite my careless habits, I tend to be pretty well educated about food, food portions, nutrients, etc. I guess that really just puts me in the camp of "typical american woman". So with me, it was not a matter of education, but a matter of will.
Which I did not have. I remained largely non-compliant with the pre-tx dietary guidelines: lots of protein, no salt, little sugar, and lots of fruits and veggies. Ha! I can tell you that more than one day in the week prior to my surgery, my diet consisted of coffee, candy, and some sort of carb like pasta or bread. Maybe a piece of fruit if I remembered it... or gallons of herbal tea.
Cut to release from the hospital, and very very very stern direction from the surgeon, the nurses, and a new (! improved !) dietician team ... combine that with the ministrations of my familia... and here I am, protein loaded and .... grrrrr. I am required to have nine - that's nine - servings of protein a day. By the time I eat that there's not a lot of room left for anything else, you know... but if so, I have to have peas or carrots or an apple or orange.
I sort of regret it, and know that my appetite will resume normality, and then I'll get whiplashed back into calorie-counting within the framework of lots of protein and no salt, but my activity level will also increase and I'll be able to do this whole balanced-diet thing. Right now it's still hard. Anyone who's ever committed to a complete dietary change overnight (all you grrls say hey!) can relate.
The recouperating time is as much, for me, about creating good habits and taking care of myself as it is about physical healing. But then, I think that creating good habits is part of the larger idea of healing... now that I have a liver that will actually take the fuel it's given and do the hard work it takes to create proteins, and process sugars into energy, I owe myself that much. It will be odd to actually have an appetite. I have no concept of what it will be like to have a renewed amount of energy...
Sunday, April 12, 2009
What does it feel like?
This courtesy my nephew.
Best I can describe - at least for the physical realm - is this: imagine doing about 400 crunches in the wrong way. Then picture how you feel the next day, and add some itching to boot. That's about the equivalent.
I have been very, very fortunate in that I haven't experienced a lot of physical pain to this point. Of course I am a wimp and am very careful in what I do (it's really fun to drop things on the floor and ask someone to pick it up because I can't get to the floor yet) ... but otherwise, the discomfort is mainly that due to sitting still or lying still for hours on end. I haven't sneezed yet, though. . .
Hugh Jass
Okay, so, this is one of the fun little things of surgery... at least of abdominal surgery.
When I checked in to the UW on March 24, I weighed in at 134.8 lbs. A little disturbing, since this was 5 lbs less than my annual checkup about 10 days prior - but given the rather surreal nature of the day, that concern barely registered on my brain. (I had been losing 2-3 lbs a month over the last several months without changing behavior. An indication that my body was starving from the inside... but...)
Jump to April 1, when I checked out of the hospital at 151 lbs. Now. A difference of 16 lbs, give or take, and it was not due to the scrumptious hospital food, the nourishing glucose drips, or the intensive muscle-building workout regimen.
When the body undergoes trauma it creates fluid. Ick ick ick ick ick. So, let's see, add 16 pounds to a body that's already in poor shape. Ask that body to carry it around, and the body is soon winded and the heart pounding.
16 lbs is about 2 gallons of water. I've tried to run up and down stairs carrying two gallons of water... that's not so easy. But instead of 2 gallons (you know, those nice plastic containers with handles) it's more like, um, 32 cups of water. If the average water balloon holds about a cup of water, that's like carrying 32 water balloons around. Mostly below the torso... and this explains the need for compression hose (sexy!) and really, really, big drawstring pajama pants.
Luckily I still had my "clown butt pants" from Before. :-) And even better, the fluid weight gain only lasts about a week, with the rest of the normal level of fluid retention finding its normal place in the body... so "regular" clothes can't be far behind!!!! Yay!!!!!
Friday, April 10, 2009
Why didn't you tell us?
Chronic illness is an odd thing, especially coupled with my in-born germanic stoicism.
Over the last week or so a common question has been "I had no idea! Why didn't you say something?"
I have been trying to answer that question for at least 20 years. I don't know. How do you say - hey, I'm cold and tired all the time because my circulation system doesn't work because my liver isn't doing its job.
How do you say - I don't drink because I got a bum liver and after I turned about 27 the very idea of alcohol began to turn my stomach.
How do you say - I may have to miss a lot of work, and I don't know when, if ever, but when it does happen it will be right then, and I think I'll know when it's imminent (I didn't!) and we can prepare then, aren't you happy to be my boss now???
How do you say - at some point I will be completely unable to care for myself and I am going to rely on you physically, emotionally, and financially for an undetermined amount of time but will you be part of my care team anyway?
How do you say - this is me. I come with this. Every day from this point forward, I will have to do x, y, and z to take care of myself and take this gift seriously, and live a new life, and it will probably affect your life in ways that I cannot imagine, but will you be my friend anyway?
And perhaps, most difficult for me - how do you say - there will be no children, and I won't be allowed to adopt, and I may very well die long before you, but will you hold my hand anyway?
How do you say all of this without seeming to be a whiner, or the girl who called 'wolf', or without succumbing to the blank look from the other person which says "but you don't seem sick at all, I don't really believe it's that serious". Plus the other loaded stuff that comes with it.
People closest to me would always know, or at least surmise, that I was unwell. The rest of me was so focused on living a "normal" life that until the last 6 months or so, I 'got over' a lot. Eventually, if not in so many words, each of those statements gets worked out as people become my friends.
Have I left some people out? Probably. It's awkward. It relies on trust to some extent, and a lot on my own confidence in a relationship, and on opportunity. Maybe in the next twenty years I'll get a handle on it.
Over the last week or so a common question has been "I had no idea! Why didn't you say something?"
I have been trying to answer that question for at least 20 years. I don't know. How do you say - hey, I'm cold and tired all the time because my circulation system doesn't work because my liver isn't doing its job.
How do you say - I don't drink because I got a bum liver and after I turned about 27 the very idea of alcohol began to turn my stomach.
How do you say - I may have to miss a lot of work, and I don't know when, if ever, but when it does happen it will be right then, and I think I'll know when it's imminent (I didn't!) and we can prepare then, aren't you happy to be my boss now???
How do you say - at some point I will be completely unable to care for myself and I am going to rely on you physically, emotionally, and financially for an undetermined amount of time but will you be part of my care team anyway?
How do you say - this is me. I come with this. Every day from this point forward, I will have to do x, y, and z to take care of myself and take this gift seriously, and live a new life, and it will probably affect your life in ways that I cannot imagine, but will you be my friend anyway?
And perhaps, most difficult for me - how do you say - there will be no children, and I won't be allowed to adopt, and I may very well die long before you, but will you hold my hand anyway?
How do you say all of this without seeming to be a whiner, or the girl who called 'wolf', or without succumbing to the blank look from the other person which says "but you don't seem sick at all, I don't really believe it's that serious". Plus the other loaded stuff that comes with it.
People closest to me would always know, or at least surmise, that I was unwell. The rest of me was so focused on living a "normal" life that until the last 6 months or so, I 'got over' a lot. Eventually, if not in so many words, each of those statements gets worked out as people become my friends.
Have I left some people out? Probably. It's awkward. It relies on trust to some extent, and a lot on my own confidence in a relationship, and on opportunity. Maybe in the next twenty years I'll get a handle on it.
Wednesday, April 8, 2009
Oh Lord, won't you buy me a, um, sailboat?
One of the last things I remember before going in for surgery two weeks ago was one of the OR nurses (who in my mind has become Cheryl Wheeler) asking me "so, honey, you getting a Mercedes or a Chevy" in the inside reference that would only make sense to a liver-transplant patient...
Picture the intersection of the two lines about an inch or two above the navel, and no circle around the mercedes (duh).
Where the grey line is previous surgery from 20-odd years ago (so old, so, so, old...).
I looked at her and said "oh no, I get a sailboat!" And thus the eventual landscape of my abdomen was discussed in the parlance of pre-opp.
The "Mercedes" incision, as I understand it, used to be the typical incision for liver transplantation:
Now there is the more commonly-used "Chevrolet" incision:
Now there is the more commonly-used "Chevrolet" incision:Picture the intersection of the two lines about an inch or two above the navel, and no circle around the mercedes (duh).Now, I expect to do a better graphic later, but ..... drum roll, please ..... I give you the HMS Shirley:
Where the grey line is previous surgery from 20-odd years ago (so old, so, so, old...).So I have all this newfound respect for women who've had c-sections, and anyone else who's had that transverse abdominal incision -- ugh!!
But the worst part of it all is that Janice Joplin has been song-worming her way through my head for - let's see - about 10 days now and I cannot make her leave.
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