Finally, I hit upon why I've had a cold for eight months. That's right--eight months. At various times, runny eyes and nose, nasal congestion, dry cough, phlegm-laden cough, sneezing, chest constriction. The only time I have been free of symptoms was in the weeks following transplant when I was taking heavy-duty steroids that knocked everything out. Now that I'm off the steroids, the symptoms have returned.
My bedroom is the darkest spot in the apartment. It only has two windows, one of which is shaded by a large tree, the other by a fence and banana tree. Though the rest of the apartment has been updated, the bedroom has popcorn texture on the ceiling and the walls above the tops of the windows. When I moved in mid-June 2009, I asked the landlord about the dark spots on the popcorn. He assured me it was only dirt or shadowing. I asked him about the cracks in the walls, and he said they weren't going to topple over. So I figured everything was OK.
During the year and a half I performed nightly dialysis in the bedroom, I kept the door closed at all times, per the instructions of the nurses who trained me, so that dust and other contaminants would not enter. Little did I know that I was trapping contaminants inside. This no doubt worsened the problem, as it prevented air flow and created a cold environment during most of the year--fantastic conditions for growing mold.
I began to notice that I felt better when I was outside or away from the apartment. At last something clicked. I asked my friend Rick, who is a licensed plumber and general contractor, if he would take a look. He came over this morning. He found that the dryer vent (the laundry room is next to my bedroom and accessible through a door at the back of the house) was not hooked up, so instead of discharging heat and water vapor outside the building, it was blowing underneath the house, creating a damp environment. Add to this a continuously dripping shut-off valve on the back side of the house and the lack of rain spouts to direct water away from the shaded area next to my bedroom, and Rick was not surprised that the walls in my bedroom were crumbling and spongy. He said he could have easily poked his finger through the drywall.
A few hours after Rick left, John, the handyman, took a look. He seemed insulted by Rick's assessment, but in the end agreed. He said he would ask the owner what she wants to do. He also admitted that he could smell the dampness upon entering the apartment. John said he'd fix the vent tomorrow and get a tree-trimming company to down the tree. I was really hoping that Rick would get some work out of this, since obviously he knows what he's talking about and is more than qualified to do the job.
For the past few nights Aaron has been sleeping at a friend's house or at his dad's, and I've been sleeping on his bed on the opposite side of the apartment from the bedroom in what is to have been a breakfast nook, the sunniest place in the apartment. I've felt much better sleeping there than in my own room, but still not great.
I have never liked a neighborhood and its people as much as I like this one. I sure hope that the landlady adequately resolves this problem. Rick said that if she doesn't, the city will come down hard on her, sending in guys with all kinds of meters that can pick up every last spore. They might have her take the whole place down to the frame, and she wouldn't want that.
Tuesday, January 25, 2011
Wednesday, January 19, 2011
The State of my Health
In general I'm feeling well, though anemia is wearing me down. The doctor said that it takes a while for the new kidney to start doing everything it's supposed to do, like help in the production of red blood cells. When I was on dialysis, I took injections of epogen, also known as procrit, once or twice a week, to catalyze the production of red blood cells. Epogen is a black box drug, the FDA's most dire category of legal drugs. This means that it can easily cause death if it is administered incorrectly or in too high a dose. Last week because my hemoglobin level was low, I was given a large dose of procrit. That often takes up to six weeks to fully kick in, so I'm feeling a bit less exhausted, but not where I'd like to be.
The other challenge is my legs, especially the leg that was broken back in March. Every step I take, I can feel pain in my knee or in my hip, as if the metal rod is poking me. This has been going on for many months, but it seems to have worsened lately. And then in general my knees ache upon even the least bit of walking. I know that dialysis and transplant patients are prone to bone deterioration, but I really didn't think this would happen so soon.
Though I lost 16 pounds in the four days following surgery, I began gaining them back until I was almost at my pre-surgery weight. This was due to water retention and increased appetite. When on dialysis, I had very little appetite and often consumed no more than 600 calories a day. Since transplant, I have felt much more like eating, though I certainly have not overeaten, and I have no desire to eat the wrong things. Ice cream, which used to be a treat, is something I haven't even wanted once since the transplant. But I suppose I currently consume 1,800-2,000 calories daily, which is three times what I was eating. In the last few days, however, my weight has dropped six pounds, so perhaps my body is finding its base weight.
Two weeks ago, the doctors were considering draining the blood that has collected around Pinky, so they had me stop taking aspirin in preparation for surgery. The swelling had diminished by my clinic appointment on Jan. 11, so the surgery was canceled. I forgot to resume the aspirin, but at my clinic visit on Jan. 14 (last Friday), I was told to discontinue the aspirin as they were considering a kidney biopsy. My creatinine, an indicator of kidney health, had gone from 0.9 to 1.0 to 1.1. Normal is between 0.5 and 1.5, so I was still doing well. Prior to transplant, my creatinine had reached 7.8, a clear indicator that dialysis doesn't do the complete job of the kidneys.
As I thought about this biopsy over the weekend, I decided not to have it performed. I mean, if the creatnine level is still within the normal range and if the creatnine level shows the health of the kidney anyway, why go in and poke around at Pinky and take a slice of her! It just didn't make sense to me. Yesterday I found out that my creatnine had gone down to 1.0, so the biopsy was canceled. And that meant that I could resume the aspirin, a good thing since, without it, I was experiencing chest pain and had to sleep sitting up to relieve the pressure on my chest.
Add to this I somehow contracted a cold, despite avoiding sick people and washing or sanitizing my hands at least 20 times a day. Runny eyes, runny nose, sneezing, and chills initially, now stuffy nose and fatigue. I thought I would be put on antibiotics, but since my white blood cell count was not outrageous--actually, the lowest since the transplant--I was told to watch my symptoms. If I get a fever, I am to call the clinic immediately.
Last night, sitting in the dark, watching an episode of "Mad Men" on my laptop (Aaron and Rasputin are spending a few days at a friend's apartment in L.A.), I cried. Not sure exactly what prompted this, perhaps the wistful, romantic sadness of the closing song. I wondered, as I used to do quite frequently and which I now do only once or twice a year, if I will ever find the man who is matched to me, who will be in sync with me sexually like Mike was but who is also matched to me in spirit. One friend recently told me that now that I'm off dialysis there is the possibility I could find someone. Well, I was not on dialysis for decades during which I was alone.
The kind of man I'd want would be far from the typical American. He wouldn't have a blackberry, an Iphone, an iPod, or even cable TV. He wouldn't run around like a rat in a cage; he'd be completely present. He wouldn't be thinking about his business meetings or his stock prices or his surfing prowess or even about his next move when he was making love; he would be pure, spontaneous, in-the-moment action with no thought. He'd know exactly what I meant when I said, "Use your body to lose your body." He'd be playful and silly, but he also would be able to tackle the deepest and most painful subjects, those that most Americans refuse to even acknowledge. And ours would not be a long-distance relationship. I've only had three relationships in my life, all of them long-distance: My husband traveled on business up to three weeks a month; Shizeng lived in Beijing and only stayed with me for eight weeks; and Mike lived 600 miles away in coastal Mendocino County.
And I've had one "understanding" with a man for a long, long time. When we were young, I'd show up on his doorstep, and without a word, we'd jump to it. But then I wouldn't hear from him for months or even years and he wouldn't return my calls. Though this bummed me out, eventually I just accepted it and stopped caring so much. He dropped out of touch completely for almost 10 years, then tracked me down through a magazine for which I was writing. Even though he came to Southern California at least once a month on business, it took him more than two years to see me. During that time, emails and calls would again go unanswered. In the last year or so, he's called at least once a month, but the understanding is now more of two old friends, though when he gave me a long hug recently, it felt really good.
It would be nice to know what it's like to love someone who's actually physically there. It's possible that such a man exists, but I have not yet encountered him. As society "progresses" (read: "digresses") toward a robotic, unthinking, unquestioning future, such a man will become even more elusive.
The other challenge is my legs, especially the leg that was broken back in March. Every step I take, I can feel pain in my knee or in my hip, as if the metal rod is poking me. This has been going on for many months, but it seems to have worsened lately. And then in general my knees ache upon even the least bit of walking. I know that dialysis and transplant patients are prone to bone deterioration, but I really didn't think this would happen so soon.
Though I lost 16 pounds in the four days following surgery, I began gaining them back until I was almost at my pre-surgery weight. This was due to water retention and increased appetite. When on dialysis, I had very little appetite and often consumed no more than 600 calories a day. Since transplant, I have felt much more like eating, though I certainly have not overeaten, and I have no desire to eat the wrong things. Ice cream, which used to be a treat, is something I haven't even wanted once since the transplant. But I suppose I currently consume 1,800-2,000 calories daily, which is three times what I was eating. In the last few days, however, my weight has dropped six pounds, so perhaps my body is finding its base weight.
Two weeks ago, the doctors were considering draining the blood that has collected around Pinky, so they had me stop taking aspirin in preparation for surgery. The swelling had diminished by my clinic appointment on Jan. 11, so the surgery was canceled. I forgot to resume the aspirin, but at my clinic visit on Jan. 14 (last Friday), I was told to discontinue the aspirin as they were considering a kidney biopsy. My creatinine, an indicator of kidney health, had gone from 0.9 to 1.0 to 1.1. Normal is between 0.5 and 1.5, so I was still doing well. Prior to transplant, my creatinine had reached 7.8, a clear indicator that dialysis doesn't do the complete job of the kidneys.
As I thought about this biopsy over the weekend, I decided not to have it performed. I mean, if the creatnine level is still within the normal range and if the creatnine level shows the health of the kidney anyway, why go in and poke around at Pinky and take a slice of her! It just didn't make sense to me. Yesterday I found out that my creatnine had gone down to 1.0, so the biopsy was canceled. And that meant that I could resume the aspirin, a good thing since, without it, I was experiencing chest pain and had to sleep sitting up to relieve the pressure on my chest.
Add to this I somehow contracted a cold, despite avoiding sick people and washing or sanitizing my hands at least 20 times a day. Runny eyes, runny nose, sneezing, and chills initially, now stuffy nose and fatigue. I thought I would be put on antibiotics, but since my white blood cell count was not outrageous--actually, the lowest since the transplant--I was told to watch my symptoms. If I get a fever, I am to call the clinic immediately.
Last night, sitting in the dark, watching an episode of "Mad Men" on my laptop (Aaron and Rasputin are spending a few days at a friend's apartment in L.A.), I cried. Not sure exactly what prompted this, perhaps the wistful, romantic sadness of the closing song. I wondered, as I used to do quite frequently and which I now do only once or twice a year, if I will ever find the man who is matched to me, who will be in sync with me sexually like Mike was but who is also matched to me in spirit. One friend recently told me that now that I'm off dialysis there is the possibility I could find someone. Well, I was not on dialysis for decades during which I was alone.
The kind of man I'd want would be far from the typical American. He wouldn't have a blackberry, an Iphone, an iPod, or even cable TV. He wouldn't run around like a rat in a cage; he'd be completely present. He wouldn't be thinking about his business meetings or his stock prices or his surfing prowess or even about his next move when he was making love; he would be pure, spontaneous, in-the-moment action with no thought. He'd know exactly what I meant when I said, "Use your body to lose your body." He'd be playful and silly, but he also would be able to tackle the deepest and most painful subjects, those that most Americans refuse to even acknowledge. And ours would not be a long-distance relationship. I've only had three relationships in my life, all of them long-distance: My husband traveled on business up to three weeks a month; Shizeng lived in Beijing and only stayed with me for eight weeks; and Mike lived 600 miles away in coastal Mendocino County.
And I've had one "understanding" with a man for a long, long time. When we were young, I'd show up on his doorstep, and without a word, we'd jump to it. But then I wouldn't hear from him for months or even years and he wouldn't return my calls. Though this bummed me out, eventually I just accepted it and stopped caring so much. He dropped out of touch completely for almost 10 years, then tracked me down through a magazine for which I was writing. Even though he came to Southern California at least once a month on business, it took him more than two years to see me. During that time, emails and calls would again go unanswered. In the last year or so, he's called at least once a month, but the understanding is now more of two old friends, though when he gave me a long hug recently, it felt really good.
It would be nice to know what it's like to love someone who's actually physically there. It's possible that such a man exists, but I have not yet encountered him. As society "progresses" (read: "digresses") toward a robotic, unthinking, unquestioning future, such a man will become even more elusive.
Tuesday, January 04, 2011
Overdoing It
When I left the hospital following transplant surgery, I was told to not lift anything over 10 pounds. I have been pretty darn good about following that advice, even splitting up a load of laundry and carrying it to the washer in two smaller loads.
I figured that since mopping floors, doing dishes and laundry, and reaching above my head to put dishes away or hang clothes didn't involve lifting over 10 pounds, I was OK. Wrong.
During the past week, I have had sharp pain around my new kidney. Then over the weekend, the area around the kidney became hard and distended. Following surgery, my belly had been fairly even on both sides and after a few days of fluid release was actually flat.
Yesterday at my clinic visit, I saw that my lab values had changed significantly. Though still within the normal range, my creatnine level had risen from .9 last week to 1.2 yesterday. My GFR had gone from a remarkable 66 to 47. (GFR is roughly percent of optimum kidney function, so I went from 66 percent down to 47 percent.) OUCH!
I was sent for an ultrasound, which showed several hematoma, basically internal bruises. Had there been only one hematoma, the surgeon said he would have inserted a needle and sucked out the blood, but since there are multiple bruises, this was not possible. As it is, there isn't much to do about it except take it easy so that the blood will reabsorb into my body.
The surgeon told me to limit my activity to walking, reading, and writing and get my big, strong son to do the rest. Knowing that he is already working six days a week at two jobs and that friends seem averse to housework, I have asked Janet, my nextdoor neighbor and donor, if her cleaning gals would be interested in more work, at least for a few weeks. I'm sure that two professionals can mop my kitchen and bathroom floors, clean the bathroom, and vacuum my teeny apartment in an hour. Perhaps they'd even have time to wipe down the mini-blinds.
Things have been going so perfectly up until this juncture. I certainly can attempt to be lazy for a few weeks.
I figured that since mopping floors, doing dishes and laundry, and reaching above my head to put dishes away or hang clothes didn't involve lifting over 10 pounds, I was OK. Wrong.
During the past week, I have had sharp pain around my new kidney. Then over the weekend, the area around the kidney became hard and distended. Following surgery, my belly had been fairly even on both sides and after a few days of fluid release was actually flat.
Yesterday at my clinic visit, I saw that my lab values had changed significantly. Though still within the normal range, my creatnine level had risen from .9 last week to 1.2 yesterday. My GFR had gone from a remarkable 66 to 47. (GFR is roughly percent of optimum kidney function, so I went from 66 percent down to 47 percent.) OUCH!
I was sent for an ultrasound, which showed several hematoma, basically internal bruises. Had there been only one hematoma, the surgeon said he would have inserted a needle and sucked out the blood, but since there are multiple bruises, this was not possible. As it is, there isn't much to do about it except take it easy so that the blood will reabsorb into my body.
The surgeon told me to limit my activity to walking, reading, and writing and get my big, strong son to do the rest. Knowing that he is already working six days a week at two jobs and that friends seem averse to housework, I have asked Janet, my nextdoor neighbor and donor, if her cleaning gals would be interested in more work, at least for a few weeks. I'm sure that two professionals can mop my kitchen and bathroom floors, clean the bathroom, and vacuum my teeny apartment in an hour. Perhaps they'd even have time to wipe down the mini-blinds.
Things have been going so perfectly up until this juncture. I certainly can attempt to be lazy for a few weeks.
Saturday, January 01, 2011
Does Your Lifestyle Match Your Principles?
It's the beginning of the new year and time to take stock of one's life. Many people make resolutions to lose weight, save more money, or exercise more often. I'm asking us all to take this a bit further.
Take an inventory of your beliefs and your principles. Then ask yourself if your lifestyle is in alignment with your principles. For example, if you are a proponent of sustainablity, environmental protection, biodiversity, animal rights, social justice, peaceful resolutions to conflicts, building community, and/or the preservation of constituional rights--a seemingly diverse agenda--do you:
* Buy as little as possible?
* Buy the non-perishables that you absolutely need from thrift stores, yard sales, and consignment stores or get these items as hand-me-downs from friends and family or from stashes left curb-side or in alleys, free for the taking?
* Do you make gifts, buy them used, or perform a service for the receiver rather than give a thing? For example, a massage, a home-cooked meal, four hours of housecleaning, or a half a day of yard work.
* Do you make every effort to buy from local, small businesses rather than from corporations?
* Do you limit your air travel?
* Do you walk, bicycle, or take public transportation whenever possible?
The above is not an exhaustive list, but it gives you something to think about. You may not see the connection between the principles I listed and the guidelines, so I'll explain.
Take an inventory of your beliefs and your principles. Then ask yourself if your lifestyle is in alignment with your principles. For example, if you are a proponent of sustainablity, environmental protection, biodiversity, animal rights, social justice, peaceful resolutions to conflicts, building community, and/or the preservation of constituional rights--a seemingly diverse agenda--do you:
* Buy as little as possible?
* Buy the non-perishables that you absolutely need from thrift stores, yard sales, and consignment stores or get these items as hand-me-downs from friends and family or from stashes left curb-side or in alleys, free for the taking?
* Do you make gifts, buy them used, or perform a service for the receiver rather than give a thing? For example, a massage, a home-cooked meal, four hours of housecleaning, or a half a day of yard work.
* Do you make every effort to buy from local, small businesses rather than from corporations?
* Do you limit your air travel?
* Do you walk, bicycle, or take public transportation whenever possible?
The above is not an exhaustive list, but it gives you something to think about. You may not see the connection between the principles I listed and the guidelines, so I'll explain.
Multi-national corporations are cancers on this planet. They rape virgin lands, exploit cheap labor, kill off habitat and plenty of flora and fauna in the process, are structured in such a way as to suppress free thinking, critical analysis, divergent viewpoints, and constitutional rights that encourage challenges to authority. Moreover, huge corporations have their tentacles in all sorts of sinister ventures, including weapons systems.
So if you are interested in preserving the planet, making a more peaceful and free world, and seeing to it that all people are treated with respect and are paid their due, you are working against your principles if you buy from corporations and if you buy new.
Since I left my husband in 1990, I have been adhering to such a program as much as possible. Granted, I buy perishables (food and toiletries), often from large firms like Ralph's and Vons. But I do also seek out small businesses, like the liquor store on the corner when I just need a block of cheese or a quart of milk. Everything in my apartment--furniture, clothes, jewelry, dishes, wall hangings--was purchased used or gotten for free, everything except my laptop, printer, camera, underwear, and tights.
I liken buying from large corporations to buying illegal drugs that were produced in Mexico. With 30,000 murders in the past decade attributable to the drug trade with the U.S., how can anyone in good conscience consume illicit drugs knowing that so much blood is on their hands? Likewise with corporations. They are responsible for so much evil in this world, from out and out murder of union leaders to the collapse of the global economy to the corruption of the political system through armies of lobbyists. How could anyone in good conscience put more money in corporate pockets to further this global web of evil?
As you enter this new year, why not make it truly new? Not the same old, same old, but a transformational year, a year of change that begins inside you and reaches out to affect the entire planet.
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