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!!!
Showing posts with label Updates - Bare-bones and Bland. Show all posts
Showing posts with label Updates - Bare-bones and Bland. Show all posts
Monday, November 16, 2009
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.
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!
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.
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...
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.
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.)
Saturday, April 25, 2009
4.24.09
A few things:
1. Marcie needs to change the date on her camera
2. Skagit Valley is danged photogenic, too bad about the family...
3. Man, I have a lot of wrinkles!!!
Thursday, April 23, 2009
04.23.09
Woops. I spent too much time playing on line and doing email, and don't have the half hour I planned to write. Sigh.
Yesterday I returned to the office for an hour or so to meet about working from home for awhile. It was really really nice to see everyone. And yes, I heard "but you didn't seem sick" more than once. Case in point, I suppose.
But it felt great to at least start thinking about being back in the swing of things. Using my brain because TV is so boring and books can only get me so far. It'll take some time to recall little details from some of my projects, but that's okay.
Meanwhile, Kath and Gary moved all their furniture into their new house yesterday, so Martin and I spent the evening up there. I sat in the armchair by the fire while the three of them moved furniture, positioned art work, and made dinner. Ahhhh, so rough! And today it's off to the tulips with my family. Still tired and sore, and only good to be on my feet for a few hours at a time.
I am v. happy that it's sunny this morning. I hope it stays this way for much of the day.
Yesterday I returned to the office for an hour or so to meet about working from home for awhile. It was really really nice to see everyone. And yes, I heard "but you didn't seem sick" more than once. Case in point, I suppose.
But it felt great to at least start thinking about being back in the swing of things. Using my brain because TV is so boring and books can only get me so far. It'll take some time to recall little details from some of my projects, but that's okay.
Meanwhile, Kath and Gary moved all their furniture into their new house yesterday, so Martin and I spent the evening up there. I sat in the armchair by the fire while the three of them moved furniture, positioned art work, and made dinner. Ahhhh, so rough! And today it's off to the tulips with my family. Still tired and sore, and only good to be on my feet for a few hours at a time.
I am v. happy that it's sunny this morning. I hope it stays this way for much of the day.
Tuesday, April 21, 2009
4.21.09
I have been alone for two hours now, with no clear picture of who will next be in my house. It's odd. Weird. After having someone here nonstop for the last three weeks! Betsey is pleased.
The surgeon said that having full-time supervision is nice, but "there's no book about this." After I mentioned that I was bored enough that I had considered making cat costumes... I did receive a limited release for work-type and more active activities.
Nurse M, though, just got a quizzical look on her face when asked if I could be alone. As in "I can't believe she hasn't killed all you family members yet. Let her be!"
Still no driving. I bless my neighborhood with the 94.8 on the walkability scale. No lifting, but that's cool with my laziness factor. I still "get" to go to the UW at 6:30 every Tuesday, but don't see the dr. again till May 19... then they may spin me back to my regular doctor. Wheeee!
The surgeon said that having full-time supervision is nice, but "there's no book about this." After I mentioned that I was bored enough that I had considered making cat costumes... I did receive a limited release for work-type and more active activities.
Nurse M, though, just got a quizzical look on her face when asked if I could be alone. As in "I can't believe she hasn't killed all you family members yet. Let her be!"
Still no driving. I bless my neighborhood with the 94.8 on the walkability scale. No lifting, but that's cool with my laziness factor. I still "get" to go to the UW at 6:30 every Tuesday, but don't see the dr. again till May 19... then they may spin me back to my regular doctor. Wheeee!
Monday, April 20, 2009
04.20.09
I am off for walk #2 shortly... George has been steadfast in calling almost daily to see if I need to be ambulated. He gets gold stars for that.
And, thankfully, today is not a hard day to be outside!!!
I think I'm returning to a normal daily pattern. Case in point: I was a total snarky b*tch this morning till 9, as is my usual. Evidently a new metabolism does not a morning person make. Hey, at least I recognize it and can joke about it...after 11 a.m. that is.
Sar and I are having dinner at the neighbors' tonight. While I'm still not ready for restaurant food, it's nice not to have to think about cooking. Urgh. Meal planning is so a part of the rest of my life. Urrrrrgh.
And, thankfully, today is not a hard day to be outside!!!
I think I'm returning to a normal daily pattern. Case in point: I was a total snarky b*tch this morning till 9, as is my usual. Evidently a new metabolism does not a morning person make. Hey, at least I recognize it and can joke about it...after 11 a.m. that is.
Sar and I are having dinner at the neighbors' tonight. While I'm still not ready for restaurant food, it's nice not to have to think about cooking. Urgh. Meal planning is so a part of the rest of my life. Urrrrrgh.
Sunday, April 19, 2009
4.19.09
Mmmm...
A gorgeous Sunday here in Tacoma. I was really really happy to see all the people out at Point Defiance (before noon!) and then Wright Park was occupied all day long. It was a day for exploring the Japanese Gardens, the Northwest garden... and really all sorts of places I've never been in the central portion of P.D. However, I think I may regret the time spent in the sun while on a Sulfa drug... definitely pink on my face. Sigh!!!
Also spent time with two friends today (aside from Martin) and just hung out. Managed at least a couple of miles today, and am watching trashy tv with Kathy! Have returned to light housecleaning and even some cooking, which is very very nice to be able to do.
Is tomorrow Monday? Tuesday I hope to get at least a limited release from the surgeon to return to some "normal" activities.... we'll see!
A gorgeous Sunday here in Tacoma. I was really really happy to see all the people out at Point Defiance (before noon!) and then Wright Park was occupied all day long. It was a day for exploring the Japanese Gardens, the Northwest garden... and really all sorts of places I've never been in the central portion of P.D. However, I think I may regret the time spent in the sun while on a Sulfa drug... definitely pink on my face. Sigh!!!
Also spent time with two friends today (aside from Martin) and just hung out. Managed at least a couple of miles today, and am watching trashy tv with Kathy! Have returned to light housecleaning and even some cooking, which is very very nice to be able to do.
Is tomorrow Monday? Tuesday I hope to get at least a limited release from the surgeon to return to some "normal" activities.... we'll see!
Saturday, April 18, 2009
04.18.09
Real clothes AND makeup AND earrings today!
I am heading out for an afternoon with Marcie and my Mom. Kathy and Dad and all her friends (Martin still hasn't decided) are off to an afternoon of sailing on the SeaScout Ship Odyssey. It is generally so very, very cold, that I had already declined the invitation. But add to that that the bulk of time is spent bracing oneself on the deck of the ship it sounds more than a little exhausting to me. :-)
So perhaps a long walk, my fourth trip this week to the Conservatory at Wright Park, the grocery store? Hmmmm. Today so far is a normal Saturday listening to NPR and letting brunch settle in. Mmmmm.
I am just happy for the sun.
I am heading out for an afternoon with Marcie and my Mom. Kathy and Dad and all her friends (Martin still hasn't decided) are off to an afternoon of sailing on the SeaScout Ship Odyssey. It is generally so very, very cold, that I had already declined the invitation. But add to that that the bulk of time is spent bracing oneself on the deck of the ship it sounds more than a little exhausting to me. :-)
So perhaps a long walk, my fourth trip this week to the Conservatory at Wright Park, the grocery store? Hmmmm. Today so far is a normal Saturday listening to NPR and letting brunch settle in. Mmmmm.
I am just happy for the sun.
Thursday, April 16, 2009
Wednesday, April 15, 2009
04.15.09
Mmmm. Sleep has taken hold with a vengeance; I want to nod off at all times now, but am limiting naps to earlier in the day so that I can regain a semblance of a biorhythm. I think that's spelled wrong.
Yesterday was a long and tiring (but not tiresome) day. The 6:30 trip to the lab at the UW was more like 6:50, followed by a trip up Sandpoint Way to get breakfast and take coffee and roll to Martin... he needed a nice perk for his Tuesday -- and hey, I'd never complain if someone delivered me breakfast!!! Okay, well, once I get back to caffeine.
Yesterday was also a mile at a good pace with George and Heather. That was really nice! My body protests... still sore and unhappy at holding myself upright all day. I get more range of motion, and am reading like a fiend.
Good news from the lab is that one of my side-effect-ridden anti-rejection meds has been reduced. I still have way, way too many platelets, so more aspirin, but then that will take place of the tylenol I've been having for pain. :-)
Now, maybe, a nap. I've dutifully had my p.m. snack (yogurt: my best friend). Gary is playing with his new Garmin and trying to fix the battery in his CRV. Marcie is playing with the cat in hopes that she will sleep all night (apparently she and Kathy warred all last night...)
Looking forward to tomorrow, the day after that, and getting back my capacity to do some work.
Yesterday was a long and tiring (but not tiresome) day. The 6:30 trip to the lab at the UW was more like 6:50, followed by a trip up Sandpoint Way to get breakfast and take coffee and roll to Martin... he needed a nice perk for his Tuesday -- and hey, I'd never complain if someone delivered me breakfast!!! Okay, well, once I get back to caffeine.
Yesterday was also a mile at a good pace with George and Heather. That was really nice! My body protests... still sore and unhappy at holding myself upright all day. I get more range of motion, and am reading like a fiend.
Good news from the lab is that one of my side-effect-ridden anti-rejection meds has been reduced. I still have way, way too many platelets, so more aspirin, but then that will take place of the tylenol I've been having for pain. :-)
Now, maybe, a nap. I've dutifully had my p.m. snack (yogurt: my best friend). Gary is playing with his new Garmin and trying to fix the battery in his CRV. Marcie is playing with the cat in hopes that she will sleep all night (apparently she and Kathy warred all last night...)
Looking forward to tomorrow, the day after that, and getting back my capacity to do some work.
Monday, April 13, 2009
04.13.09
This has been designated the Week of Sleep. I am now able to sleep comfortably and boy, howdy, am I taking advantage. Ah, bliss!
Also up to walking a mile with only a short break in the middle - today that was sitting at Tully's in Stadium for a few minutes - and have started feeling a daily routine.
As the day has worn on, the gloom has started to take its toll. I don't want to go back outside, and I am tired. Tired. All my core muscles are aching in protest of the walk, sitting up in a chair for hours, washing my own hair (!!!!) and showering/changing clothes. Fortunately I have a comfy recliner and the cat is in her own lair.
Sooooooo looking forward to the 5:30 drive to Seattle tomorrow!!! (But then I have visitors to look forward to in the afternoon.)
Also up to walking a mile with only a short break in the middle - today that was sitting at Tully's in Stadium for a few minutes - and have started feeling a daily routine.
As the day has worn on, the gloom has started to take its toll. I don't want to go back outside, and I am tired. Tired. All my core muscles are aching in protest of the walk, sitting up in a chair for hours, washing my own hair (!!!!) and showering/changing clothes. Fortunately I have a comfy recliner and the cat is in her own lair.
Sooooooo looking forward to the 5:30 drive to Seattle tomorrow!!! (But then I have visitors to look forward to in the afternoon.)
Sunday, April 12, 2009
04.12.09
Today is Easter.
Over the years, this holiday has waxed and waned in its importance in my life, in the deliberateness with which I have observed Easter, Passover, Oestara, or the like... but if I were to think about it very deeply today, now, there would be new parallels between Easter and my life. The whole notion of re-birth, new beginnings, the start of a new cycle, blossoming, flowering, and - yes - rain/sun/rain/rain/rain/sun/rain seems a little more significant.
So today I did eggs for the peops at work (odd to be in the office and find Karla there!!!) and walked through a more-deserted-than-usual downtown. Indulging in a BattleStar Galactica marathon with Martin, playing with the cat, reading, eating well, and snoozing.
Feeling decidedly normal. In that it's a re-birth.
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