Following transplant, I was given a whole pharmacy of drugs to begin taking, one of which is prednisone, a steroid that acts as an immune-suppressant. Though I understand that these drugs are essential for the preservation of my new kidney, they are not without side effects.
In the first four days following surgery, I dropped 16 pounds of excess fluids, going from 151 to 135. Since then, I have put on 10 pounds, now up to 145. This is due to the prednisone. Yesterday at my clinic visit, the nephrologist told me that she has seen patients who were very thin prior to surgery become obese because of prednisone. She said that the insomnia, elevated blood sugar, and elevated blood pressure I have been experiencing are also attributable to prednisone. I literally have not had a good night's sleep since the surgery. I wake up often and have trouble getting back to sleep. At most, I have gotten six or seven hours, often a lot less. My blood sugar is way out of whack. I have had to more than double my insulin to compensate for the high blood sugars. Even so, my control is not good. And my blood pressure has gone from perfect (117/54) to dangerous (160/74).
Initially I was taking 40 mg prednisone a day, then it was lowered to 30, then 20, and yesterday to 10. The nephrologist said that I am a good candidate for getting completely off the drug, as I am not African American or Latino, two groups that tend to have to continue on the drug, and I do not have a certain lab marker that is an indicator of continued use. Since after a month, the body becomes hooked on prednisone, making withdrawal difficult or impossible, the nephrologist said that she most likely would take me off the drug completely at next Monday's visit. Fingers crossed.
Wednesday, December 29, 2010
Saturday, December 25, 2010
The Increasingly Popular Anecdotal Fallacy
So often these days I encounter people who want to argue by anecdote. Haven't they ever read Aristotle! Anecdotes can never prove a case, they can only disprove an "always" or "never" hypothesis. Let me explain.
If I say that television has had the overall tendency to make people stupider, less physically active, less creative, less aware of their surroundings, less able to read social cues and respond appropriately, more passive, more prone to manipulation, more withdrawn and isolated, less able to distinguish reality from fantasy, and less able to support their opinions with reasoned arguments, you do not disprove my statement by telling me that you watch a lot of TV yet are intelligent, jog two miles every day, wrote a poem last night, are intensely aware of the color scheme in your wallpaper, know when your spouse is getting angry by the way his fingers curl up, have never once in your life been manipulated, withdrawn, or isolated, are able to tell a real cowboy from a fake one on TV, and are currently supporting your opinion with a reasoned argument. Even if your examples proved that you were a superior human being despite excessive TV watching, it only tells me about you. My hypothesis was not about you but about a general tendency. If I had said that TV always has these effects on people, then, yes, you providing one sound example would disprove my theory. For example, if you could find one human being who is immortal, it would disprove this classic deductive argument: All men are mortal. Socrates is a man. Therefore, Socrates is mortal.
Here are a few more examples of the folly of anecdotal reasoning:
* I told a nurse that I was considering islet transplantation to rid myself of diabetes. She was horrified. She said that she had had a patient who had islet transplant and was doing worse than before transplantation. I asked her how many patients she had known who had had the procedure. Only that one, she said. Then I asked how long ago the patient had undergone islet transplant, and she said, "Five years ago." Now why would I base my decision on some woman who I don't know anything about--what shape she was in prior to transplant, how heavy she was, how well she follows a sensible diet, how much she exercises, how old she is, etc.--who had the procedure a half decade ago, during which time advances in technique have occurred.
* Einstein flunked math, yet he became the world's most brilliant theoretical physicist, a profession that requires a high level of mathematical acumen. Therefore, if you want to be a theoretical physicist of world-class standing, flunking math is the path you need to take.
* Studies say that smoking causes lung cancer, but my uncle Albert smoked a pack of cigarettes a day from the time he turned 13 until the day he died at 93. He never developed lung cancer, and as I recall, he never so much as caught a cold. So smoking really isn't bad for your health.
* Every mother tells her child that he should look both ways before crossing a street. I always hated it when my mother told me to do that. Such a worry wart she was! I make a point of closing my eyes when I cross a street. I've been doing this for at least 15 years, and I haven't been hit yet. It's stupid advice, and I say, "Close your eyes. You'll be just fine."
Why are so many people relying so heavily on anecdotes to support their opinions? I've got two theories:
* Our educational system at best gives lip service to critical thinking. It's something tacked on at the end of the year after all the memorization and standardized tests have been taken care of. Critical thinking should be a part of every lesson, but it's not because the school system is aiming at turning out unthinking, unquestioning robots who will fit into cubicle jobs that require no critical thinking.
I saw this at the college level, which is one of the major reasons why I am so glad I am no longer a part of that travesty. The university has become as Mickey Mouse as grade school with quantification and standardization the mantra, which means a dumbing down of material and no room for true cultivation of critical thinking.
* We are an extremely self-absorbed society. People argue from anecdotes because they feel the world and truth revolve around their own personal experience. If they can smoke and haven't developed lung cancer, then smoking is safe. If they can watch lots of TV and still have what they consider an engaged life, then TV is harmless.
Now this is not to say that personal experience is not valid. It's just that it is just that--personal. It does not speak for everyone.
So, folks, if you don't know how to support your opinions, please enroll in an introductory logic class at your local community college. Aristotle came up with 13 fallacies. I've only discussed one here.
If I say that television has had the overall tendency to make people stupider, less physically active, less creative, less aware of their surroundings, less able to read social cues and respond appropriately, more passive, more prone to manipulation, more withdrawn and isolated, less able to distinguish reality from fantasy, and less able to support their opinions with reasoned arguments, you do not disprove my statement by telling me that you watch a lot of TV yet are intelligent, jog two miles every day, wrote a poem last night, are intensely aware of the color scheme in your wallpaper, know when your spouse is getting angry by the way his fingers curl up, have never once in your life been manipulated, withdrawn, or isolated, are able to tell a real cowboy from a fake one on TV, and are currently supporting your opinion with a reasoned argument. Even if your examples proved that you were a superior human being despite excessive TV watching, it only tells me about you. My hypothesis was not about you but about a general tendency. If I had said that TV always has these effects on people, then, yes, you providing one sound example would disprove my theory. For example, if you could find one human being who is immortal, it would disprove this classic deductive argument: All men are mortal. Socrates is a man. Therefore, Socrates is mortal.
Here are a few more examples of the folly of anecdotal reasoning:
* I told a nurse that I was considering islet transplantation to rid myself of diabetes. She was horrified. She said that she had had a patient who had islet transplant and was doing worse than before transplantation. I asked her how many patients she had known who had had the procedure. Only that one, she said. Then I asked how long ago the patient had undergone islet transplant, and she said, "Five years ago." Now why would I base my decision on some woman who I don't know anything about--what shape she was in prior to transplant, how heavy she was, how well she follows a sensible diet, how much she exercises, how old she is, etc.--who had the procedure a half decade ago, during which time advances in technique have occurred.
* Einstein flunked math, yet he became the world's most brilliant theoretical physicist, a profession that requires a high level of mathematical acumen. Therefore, if you want to be a theoretical physicist of world-class standing, flunking math is the path you need to take.
* Studies say that smoking causes lung cancer, but my uncle Albert smoked a pack of cigarettes a day from the time he turned 13 until the day he died at 93. He never developed lung cancer, and as I recall, he never so much as caught a cold. So smoking really isn't bad for your health.
* Every mother tells her child that he should look both ways before crossing a street. I always hated it when my mother told me to do that. Such a worry wart she was! I make a point of closing my eyes when I cross a street. I've been doing this for at least 15 years, and I haven't been hit yet. It's stupid advice, and I say, "Close your eyes. You'll be just fine."
Why are so many people relying so heavily on anecdotes to support their opinions? I've got two theories:
* Our educational system at best gives lip service to critical thinking. It's something tacked on at the end of the year after all the memorization and standardized tests have been taken care of. Critical thinking should be a part of every lesson, but it's not because the school system is aiming at turning out unthinking, unquestioning robots who will fit into cubicle jobs that require no critical thinking.
I saw this at the college level, which is one of the major reasons why I am so glad I am no longer a part of that travesty. The university has become as Mickey Mouse as grade school with quantification and standardization the mantra, which means a dumbing down of material and no room for true cultivation of critical thinking.
* We are an extremely self-absorbed society. People argue from anecdotes because they feel the world and truth revolve around their own personal experience. If they can smoke and haven't developed lung cancer, then smoking is safe. If they can watch lots of TV and still have what they consider an engaged life, then TV is harmless.
Now this is not to say that personal experience is not valid. It's just that it is just that--personal. It does not speak for everyone.
So, folks, if you don't know how to support your opinions, please enroll in an introductory logic class at your local community college. Aristotle came up with 13 fallacies. I've only discussed one here.
Emotional Release
A few times since surgery, I have been close to tears, but critical mass was not reached and no tears fell. Yesterday morning while putzing around the apartment, medieval carols playing on the boom box, I suddenly was overcome with emotion. What emotion it was, I can't really say. It certainly wasn't sadness, but I can't say it was joy either. It was as if a backlog of all sorts of feelings came rushing forth in physical form without accompanying emotion.The sensation was so powerful that, weeping, I dropped to my knees in front of the Christmas tree, which was already lit up. As tears streamed down my face, I said my thanks aloud for how very fortunate I am to have received a kidney. Most people are dead before they reach five years on dialysis, and I was just shy of two years before I received one. The vast majority of people die before a kidney is offered.
I know how fortunate I am to have had so many people pulling for me. Even if you don't believe in God or some universal force, you have to realize that maybe a hundred people concentrating their thoughts, their energy, and their visualizations on my healing is powerful. The concentrated intention of one person is a force to reckon with, but if you multiply that a hundredfold, you've got something unstoppable. I am so grateful for this assistance.
After about five minutes of weeping, I got up and resumed my putzing. That release was cleansing and complete. No need to dwell on it or overanalyze it. It simply was for five minutes, and then it was gone without leaving any residue.
Post-op Miscellany
A few observations and experiences that don't necessarily warrant individual posts:
* In the week following surgery, I had a lot of dark dreams. I hesitate to call them nightmares because I wasn't scared, but their content was potentially frightening. Shadowy presences, demons, malevolent entities, darkened rooms. Other dreams were lucid, perhaps even astral travel. They were like waking life with no sudden shifts from venue to venue.On reflection, this makes sense that the subconscious should be stirred up following surgery. The surgeons cut deep into my physical core, and so the core of my psyche would also be disrupted. Gunk like blood, tissue, and fluids drained from the body post-op, so no doubt psychic gunk also was released. I don't interpret this as unacknowledged fears on my part, as I am really good at soul-searching, and not a whole lot about my inner workings escapes my scrutiny and contemplation. I was very calm going into surgery, prepared for wherever it took me, even into death. Once you reconcile with the prospect of death, you can face just about anything.
* I have managed the pain exceedingly well. Post-op I had morphine only twice, one dose a half dose, and one Tylenol. Then nothing until I got home. One day the pain was so bad I took two Tylenol. Other than those four times, I have had nothing. The incisions are generally on the level of discomfort, not pain, so there isn't really any justification for pain meds, which I feel are more trouble than they're worth.
* I started driving one day shy of two weeks post-op. Though six weeks is the recommended resumption of driving, I didn't see any reason why I should wait that long, since I wasn't taking pain meds and didn't feel impaired.
* Have been very careful about staying away from people with colds. Diana had invited me over to her mom's house for Christmas, but then called today to tell me she was coming down with something. I thought it best to stay home with Rasputin. Pinky is doing so well that I don't want to do anything to disturb her.
I canceled the annual holiday tradition of caroling for brandy this year in order to avoid infections. Sure missed caroling from one stranger's door to another and brightening the hearts of many and confusing and/or embarrassing a few others. To view past years' posts on caroling for brandy, see 2009, 2008, and 2007.http://heidisheart.blogspot.com/2007/12/caroling-in-carol-park.html
I canceled the annual holiday tradition of caroling for brandy this year in order to avoid infections. Sure missed caroling from one stranger's door to another and brightening the hearts of many and confusing and/or embarrassing a few others. To view past years' posts on caroling for brandy, see 2009, 2008, and 2007.http://heidisheart.blogspot.com/2007/12/caroling-in-carol-park.html
* Before surgery, I had bought a foot-high living tree from the market because I didn't know how long I'd be in the hospital. When I got home only four days following surgery, I really wanted a tree, and damn if we didn't get the best tree we've ever had. Enough room to put up all the ornaments.
* Pictured here with snowflake sunglasses--Elton John, step aside!--and a bird whistle from Georgette, a pixie of a gal who lives in Florida and each birthday and Christmas sends me gifts that make me giggle. Also a cashmere scarf from my neighbor Annie. I've always loved cashmere but have never owned any until now. A generous gift.
Sunday, December 19, 2010
More Hospital Photos
Here are a few photos from the morning after surgery. The woman with the mask is Janet, my friend and neighbor. The woman in bed is Brandie, the woman who gave me her kidney. The guy on the cell phone is Constantine, one of my favorite nurses, who hailed from Romania. Look how I'm beaming!
Weight Loss, Bruising, Increased Pain
One of the most remarkable things post-surgery has been the tremendous loss of water weight. I went from 151 the day of surgery to 136 four days following surgery. That loss of excess fluids in itself has so improved my energy. The fluids were constricting my lungs and my heart, wearying me, exhausting me. With those fluids gone, I'm so much lighter and without constriction.
I truly have been struggling with excess fluids for about a dozen years. A lot of this manifested as cardiac symptoms, but the root cause was the buildup of fluids. That's why I have been telling people that this is the best I've felt in 12 years. And, of course, the healing process is far from over. Three months from now, I may just feel like a teenager again.
The bruising of my belly has expanded. Much of my tummy is now black and blue.
And this morning I took two Tylenol because the incision was not just uncomfortable but painful. This is only the fourth time I have taken pain meds post-op and the first time since leaving the hospital.
Tomorrow is another clinic visit at UCLA. Up at 4:20 a.m., leave the apartment by 5, so that I can get to the lab when it opens at 6. Whew!
I truly have been struggling with excess fluids for about a dozen years. A lot of this manifested as cardiac symptoms, but the root cause was the buildup of fluids. That's why I have been telling people that this is the best I've felt in 12 years. And, of course, the healing process is far from over. Three months from now, I may just feel like a teenager again.
The bruising of my belly has expanded. Much of my tummy is now black and blue.
And this morning I took two Tylenol because the incision was not just uncomfortable but painful. This is only the fourth time I have taken pain meds post-op and the first time since leaving the hospital.
Tomorrow is another clinic visit at UCLA. Up at 4:20 a.m., leave the apartment by 5, so that I can get to the lab when it opens at 6. Whew!
Friday, December 17, 2010
The Drain Bag is Draining on Me!
During transplant surgery, my peritoneal dialysis tubing was removed. For almost two years I had had a foot-long tube protruding from my abdomen through which I hooked up to tubing from my dialysis machine every night. Since Pinkie, my new kidney, was off to a fantastic start even in the OR, the surgeon removed all this unsightly mess. But he put something similar on the other side of my belly--a length of tubing attached to an avocado-sized plastic bulb to catch blood and fluids post-op, known as the Jackson-Pratt surgical drain, named, I suppose, for the inventors.
For the first week after surgery, I could never go more than two hours without emptying it. Sometimes only an hour. That meant very little sleep.
For the first week after surgery, I could never go more than two hours without emptying it. Sometimes only an hour. That meant very little sleep.
In the last few days, it has leaked at the exit site, soaking the bandage and wetting my shirt and pants. Some days I have had to change my clothes four or five times.
Plus, pieces of tissue make their way down the tubing and into the bulb, but often they are so thick and large that they block the flow, again causing leakage at the exit site.
Today during my clinic visit, the surgeon said that I should no longer create a vacuum in the bulb by squeezing it tight after emptying. He said that, at this point, healing needs to take place, and a vacuum might be pulling out more fluid and tissue than is conducive to healing. But if there isn't a vacuum, then excess fluid can't escape through the tube and must instead leak into the bandage.
I got the bright idea to use Depends. I figured that I could pull them past the bandage covering the exit site. Even though the bandage may get soaked, my clothes will not get wet because the fluids will be absorbed by the Depends.
Well, so far that's working better than nothing, but not that great. After all, Depends were made for urine, and the exit site at my waist is a long way from that area. There isn't a lot of absorbant material in the waist band because generally that's not where it's needed.
Oh, well, this too will pass, though one cheery friend told me his father-in-law wore a Jackson-Pratt for three months! Even if that turns out to be the case, it'll all be worth it for Pinkie.
Thursday, December 16, 2010
My Poem for Janet
Below is a poem I wrote for my next-door neighbor Janet prior to our surgeries. I hoped that in some small measure this shows my deep gratitude.
For those of you who are good Catholics or perhaps religious studies majors, let me make it very clear that I know the difference between the Feast of the Immaculate Conception (Dec. 8, the day on which I had transplant surgery) and the Annunciation of the Blessed Virgin Mary (March 25). The former entails the conception of Mary without sin, i.e. her parents actually had sex but it was really clean sex and so she was born without sin and remained without sin so that she could be a pure vessel for the baby Jesus. In contrast, the annunciation is when the angel visited Mary and she became "with child" without having sex. But I have taken poetic liberty to intertwine these two in my poem.
Conception and Rebirth
(for Janet)
My mother gave birth to me,
but on this Feast of the Immaculate Conception,
you have given me a second life.
Without you, I would be chained
to a dialysis machine every night until I die,
becoming ever weaker, hardly able to cross the room.
Like Mary, who was touched by an angel
and felt the stirrings of baby Jesus within her loins, Like Mary, who was touched by an angel
I too sense the beginnings of a new life within me,
awakened through the gift of your kidney,
one link in an eight-person cross-country chain.
This newness in me and in three other patients
Immaculately conceived through the kidneys of four strangers.
Now freed of tubing, tape, and gauze,
without holes in our arms and our bellies,
we will once more hike, swim, lounge in Jacuzzis,
canoe, camp, surf, take baths,
drink as much water as we like,
travel the world with ease,
and get a good night’s sleep.
As a Buddhist, you might see this transformation in a different light,
as a part of you reborn in another.
Because a man outside Philadelphia gave his kidney to a man in L.A.,
I received his wife’s kidney
and you gave one of yours to someone in Virginia,
whose friend completed the chain,
giving to a patient with a rare blood type in San Francisco.
Four rebirths without four deaths.
A miracle in any religion,
in any way of conceiving the world.
Don't Ever Sell the Kindness of Strangers Short
Pictured here is my next-door neighbor Janet the morning after donating one of her kidneys on my behalf. By her side is her equally compassionate husband, Dana. She's wearing a scarf and hat handmade by Susie, the friend who donated one of her kidneys to her best friend's husband in the summer of 2009.
Though I've posted previously about the miracle of strangers stepping forward, this message bears repeating.
In late June of 2009, I moved into the apartment at which I currently reside. I had been walking in the neighborhood when I spied a FOR RENT sign that included the line "pet friendly." Exactly what I had been looking for, since I really wanted to get a dog. During that summer, I had several paramedic dramas and hospitalizations. Janet came to the rescue, scooping up a very protective Rasputin who would not let the paramedics near me. When I was home, we also went for afternoon walks with our dogs. So basically we were friendly neighbors but not yet friends when, six weeks after I'd moved in, she said she wanted to be my donor.
That was back in August of 2009, but I did not get on the transplant list until June 16 of this year. I had to fight and scratch to get there, having triple bypass surgery in November 2009 and then going through the long recovery process following a hip fracture in March of this year. Once I had graduated from a walker to a cane to my own unaided two legs, I started an aggressive cardiac rehab program to get my heart in good enough shape to pass the necessary tests. Finally after I was on the list, Janet could begin her testing to see if she was sufficiently healthy and blood type-compatible.
When we found out that Janet was A blood type and I'm O, we started looking into paired donations. To hedge my bet, Susie wrote a solicitation letter on my behalf. A former student of mine saw it and forwarded it to his friend Cindy in Phoenix, a 26-year-old who up until the end said that she would be my backup if this transplant didn't pan out.
One of the big messages of all this is that you never know from whom help will come. We tend to think that friends and family will step up to the plate, but that isn't necessarily true. They may have fears or hesitations or they may feel that they can help in other ways, such as my son who has been ever-ready to help all along. Had he been my donor, who would have done all the things he has currently been doing? Everyone has his or her role, even if that role seems to be no role. They perhaps are silent, do not send emails or cards, do not call, but are perhaps saying prayers or lighting candles or visualizing positive outcomes. Or they help out afterwards with shopping or cooking or, as I had this morning, a fantastic massage.
The fact that I moved next door to the woman who would donate on my behalf--what are the chances! That two strangers would want to save my life is something that continues to amaze me. The beauty of Janet's gift and Cindy's unflinching offer are miracles in themselves. Of course, add to this the miracle of me even getting on the list--the initial Kaiser transplant panel and the initial consulting UCLA surgeon wanted to nix me, but I was persistent, making my way through about a dozen paramedic dramas, a half dozen hospitalizations, bypass surgery, a broken hip, months of rehab for my heart and my leg, and an unending barrage of doctor visits, nightly dialysis, tests, tests, and more tests. And then to think I survived the last couple months when I was in such dire fluid overload and dialysis just wasn't working any more that I struggled to do the simplest tasks, like walking across the room or getting dressed, all the while doing my best to keep this from everyone. It sure seems as if the forces of the universe were in alignment for me to make this happen.
So thank you, thank you, thank you to Janet for the gift of her kidney to a man in Virginia so that I could receive one from Brandie, my actual donor. Thanks to Brandie for literally giving me life. And thanks to Cindy for faithfully standing in the wings, ever ready to give of herself should other options fail. The kindness of strangers. Don't ever sell that short.
Though I've posted previously about the miracle of strangers stepping forward, this message bears repeating.
In late June of 2009, I moved into the apartment at which I currently reside. I had been walking in the neighborhood when I spied a FOR RENT sign that included the line "pet friendly." Exactly what I had been looking for, since I really wanted to get a dog. During that summer, I had several paramedic dramas and hospitalizations. Janet came to the rescue, scooping up a very protective Rasputin who would not let the paramedics near me. When I was home, we also went for afternoon walks with our dogs. So basically we were friendly neighbors but not yet friends when, six weeks after I'd moved in, she said she wanted to be my donor.
That was back in August of 2009, but I did not get on the transplant list until June 16 of this year. I had to fight and scratch to get there, having triple bypass surgery in November 2009 and then going through the long recovery process following a hip fracture in March of this year. Once I had graduated from a walker to a cane to my own unaided two legs, I started an aggressive cardiac rehab program to get my heart in good enough shape to pass the necessary tests. Finally after I was on the list, Janet could begin her testing to see if she was sufficiently healthy and blood type-compatible.
When we found out that Janet was A blood type and I'm O, we started looking into paired donations. To hedge my bet, Susie wrote a solicitation letter on my behalf. A former student of mine saw it and forwarded it to his friend Cindy in Phoenix, a 26-year-old who up until the end said that she would be my backup if this transplant didn't pan out.
One of the big messages of all this is that you never know from whom help will come. We tend to think that friends and family will step up to the plate, but that isn't necessarily true. They may have fears or hesitations or they may feel that they can help in other ways, such as my son who has been ever-ready to help all along. Had he been my donor, who would have done all the things he has currently been doing? Everyone has his or her role, even if that role seems to be no role. They perhaps are silent, do not send emails or cards, do not call, but are perhaps saying prayers or lighting candles or visualizing positive outcomes. Or they help out afterwards with shopping or cooking or, as I had this morning, a fantastic massage.
The fact that I moved next door to the woman who would donate on my behalf--what are the chances! That two strangers would want to save my life is something that continues to amaze me. The beauty of Janet's gift and Cindy's unflinching offer are miracles in themselves. Of course, add to this the miracle of me even getting on the list--the initial Kaiser transplant panel and the initial consulting UCLA surgeon wanted to nix me, but I was persistent, making my way through about a dozen paramedic dramas, a half dozen hospitalizations, bypass surgery, a broken hip, months of rehab for my heart and my leg, and an unending barrage of doctor visits, nightly dialysis, tests, tests, and more tests. And then to think I survived the last couple months when I was in such dire fluid overload and dialysis just wasn't working any more that I struggled to do the simplest tasks, like walking across the room or getting dressed, all the while doing my best to keep this from everyone. It sure seems as if the forces of the universe were in alignment for me to make this happen.And then that I should feel so fantastic so shortly after surgery. Several nurses said they had never seen a recipient get up and walk the halls the morning after surgery or seen someone been released in four days, five days being the absolute minimum.
But I feel better than I've felt in more than a dozen years. In the decade prior to the onset of dialysis, my heart was dragging on me. For years I didn't lie down but rather slept sitting up because the weight of my own body on my chest was too constrictive. Everything from walking a few feet to climbing a flight of stairs to doing the laundry was a personal challenge. And yet I was often working 60 hours a week at several jobs, including teaching, freelance editing and writing, and massage therapy. Plus taking care of my mother for two years. It is a miracle I made it through this without keeling over.
Wednesday, December 15, 2010
Government Waste, an Up-Close Look
As irony would have it, on the same day that I opened the letter from the IRS, I called Kaiser's peritoneal dialysis clinic to see if I could have Aaron return the unopened supplies so that someone else could use them or so they could be used for training new patients. I was told that I would have to destroy the supplies, that they could not be used by others. I called Baxter, the supply company, and was told the same thing. Baxter said that a driver could pick up the boxes on Jan. 6, but that Baxter would not reroute them. I told the clerk to forget it, I wanted to get rid of the stuff ASAP so that I could be done with my bedroom as a warehouse and get back to my bedroom as a bedroom.
The reason this is ironic is that every dialysis patient in the country, as of 1984, is on Medicare, regardless of age. If you're 2 years old and are on dialysis, you receive Medicare. Here one arm of the government is attempting to take my money, and another arm of the government refuses to allow me to save it money.
And we're not talking about chump change here. Every night for the past 22 months, I used three bags of dialysate at $75 a pop, or $225 in solution alone. I had approximately 30 unopened solution boxes, approximately $4,500! Add to that the fancy, single-use cassettes with tubing to each bag, to me, and to the drain jug, and the unopened extension lines that allowed me to move more than 12 feet from my machine, and the unopened box of 100 iodine-tipped mini-caps that seal the end of the transfer set each morning, and you can see we're approaching five grand, stuffed under my bed and stacked high against the walls of my bedroom.
The only saving grace is that Ed, the friend who came over to help with the destruction, is a resourceful guy who could use some of the tubing, the drain jug, and a few of the very sturdy dialysate boxes. Also, the Baxter rep said the dialysate makes excellent fertilizer, so Aaron emptied a half dozen bags on my neighbor Janet's garden. The rest of the boxes, cassettes, and extension lines were recycled, but four large trash bags with the empty dialysate bags were tossed in the garbage.
What's more unbelievable is that with budget cuts, we could easily see a tightening of access to healthcare. Dialysis is an extremely expensive venture, one of the most expensive, if not the most expensive, Medicare costs. Costs driven up by this kind of waste. But when the Government Accounting Office (GAO) or Congress looks at the numbers, they won't see this ridiculous situation. They'll only see that dialysis patients are costing the country an arm and a leg, and that perhaps we should go the way of South Africa or Australia. The former has death panels as was once the case in this country, at which patients must prove their social worth in order to receive dialysis. Otherwise, they're left to die. In Australia, patients over 65 are not given dialysis, but are rather told by their physicians that they are too old to be viable.
What a crazy, mixed-up country we live in! How did things get so incredibly out of whack?
The reason this is ironic is that every dialysis patient in the country, as of 1984, is on Medicare, regardless of age. If you're 2 years old and are on dialysis, you receive Medicare. Here one arm of the government is attempting to take my money, and another arm of the government refuses to allow me to save it money.
And we're not talking about chump change here. Every night for the past 22 months, I used three bags of dialysate at $75 a pop, or $225 in solution alone. I had approximately 30 unopened solution boxes, approximately $4,500! Add to that the fancy, single-use cassettes with tubing to each bag, to me, and to the drain jug, and the unopened extension lines that allowed me to move more than 12 feet from my machine, and the unopened box of 100 iodine-tipped mini-caps that seal the end of the transfer set each morning, and you can see we're approaching five grand, stuffed under my bed and stacked high against the walls of my bedroom.
The only saving grace is that Ed, the friend who came over to help with the destruction, is a resourceful guy who could use some of the tubing, the drain jug, and a few of the very sturdy dialysate boxes. Also, the Baxter rep said the dialysate makes excellent fertilizer, so Aaron emptied a half dozen bags on my neighbor Janet's garden. The rest of the boxes, cassettes, and extension lines were recycled, but four large trash bags with the empty dialysate bags were tossed in the garbage.
I'm sure it all comes down to liability. Seems that's the case in 95 percent of decisions made in this country. Even though the dialysate did not expire for at least another year, even though it had been kept at a consistent temperature that was well within the established guidelines for safe keeping, even though I was willing to have Aaron and Ed do the heavy lifting and return the supplies at no charge to Medicare or the dialysis clinic, I suppose there is the FEAR that I would have opened the boxes, injected some dire substance into the bags, and resealed them again in an evil scheme to take down some luckless souls. Unbelievable.
What's more unbelievable is that with budget cuts, we could easily see a tightening of access to healthcare. Dialysis is an extremely expensive venture, one of the most expensive, if not the most expensive, Medicare costs. Costs driven up by this kind of waste. But when the Government Accounting Office (GAO) or Congress looks at the numbers, they won't see this ridiculous situation. They'll only see that dialysis patients are costing the country an arm and a leg, and that perhaps we should go the way of South Africa or Australia. The former has death panels as was once the case in this country, at which patients must prove their social worth in order to receive dialysis. Otherwise, they're left to die. In Australia, patients over 65 are not given dialysis, but are rather told by their physicians that they are too old to be viable.
What a crazy, mixed-up country we live in! How did things get so incredibly out of whack?
The IRS Can't Take my Kidney!
When I returned home from the hospital late Sunday night, I saw the pile of mail on my desk, but did not begin to tackle it until the next day. There among the cable company promotions (they still don't believe I don't have a TV) and charity solicitations was a thick packet from the IRS.
The IRS contends that my mother's taxes were incorrectly filed in 2008, and her estate--that's me--owes $18,419. A full $4,094 are penalties and interest. My goodness, you can get much better rates from the mob!
This is an ungodly amount, to be sure. A lot of years in the past decade, I haven't even netted $18K after business expenses were deducted.
But I looked at this letter with the same detachment as I did the cable company promos. I have a new kidney, I'm alive and feeling so much better than I have for a very long time, and at least for now, the IRS cannot take my kidney. Either the matter will be resolved and I'll pay nothing or a lot less, or I'll have to pay it off slowly over the course of my remaining years. But in either case, I am thankful to be alive. The bastards can't take that from me, though I believe that's the course down which we're heading.
Now that the super rich have gotten their tax cuts, the budget cuts will begin. More people will be made homeless, more people will starve, more people will receive inadequate education and therefore be stuck in low-end jobs, more people will die from lack of services. But it is so important that the rich get richer. That's what it's all about--reverse Darwinism, not survival of the fittest but survival of the most pampered and therefore the least strong.
The IRS contends that my mother's taxes were incorrectly filed in 2008, and her estate--that's me--owes $18,419. A full $4,094 are penalties and interest. My goodness, you can get much better rates from the mob!
This is an ungodly amount, to be sure. A lot of years in the past decade, I haven't even netted $18K after business expenses were deducted.
But I looked at this letter with the same detachment as I did the cable company promos. I have a new kidney, I'm alive and feeling so much better than I have for a very long time, and at least for now, the IRS cannot take my kidney. Either the matter will be resolved and I'll pay nothing or a lot less, or I'll have to pay it off slowly over the course of my remaining years. But in either case, I am thankful to be alive. The bastards can't take that from me, though I believe that's the course down which we're heading.
Now that the super rich have gotten their tax cuts, the budget cuts will begin. More people will be made homeless, more people will starve, more people will receive inadequate education and therefore be stuck in low-end jobs, more people will die from lack of services. But it is so important that the rich get richer. That's what it's all about--reverse Darwinism, not survival of the fittest but survival of the most pampered and therefore the least strong.
Sunday, December 12, 2010
I'm Blowing This Joint Tonight!
Just heard from a very good-looking surgeon that I am being released tonight. My blood sugars are in decent control. I'm peeing up a storm. My creatnine level is in the normal range. My neck shunt has been removed, and the IV will soon follow. All is good.
Aaron is cleaning up the apartment, as he told me "it's a real mess." Then he's driving to UCLA to take me home to my own bed.
Doubtless I'll stay with Susie at some point when I'm attending clinic visits, but right now she's been doing so much for so many people, that I don't want to put anything more on her.
Thanks to all who have sent their love, their support, and their prayers. And thanks especially to the inner circle in the greater Long Beach area who have volunteered to help with grocery shopping, cooking, cleaning, rides, and laundry. This means an awful lot.
Aaron is cleaning up the apartment, as he told me "it's a real mess." Then he's driving to UCLA to take me home to my own bed.
Doubtless I'll stay with Susie at some point when I'm attending clinic visits, but right now she's been doing so much for so many people, that I don't want to put anything more on her.
Thanks to all who have sent their love, their support, and their prayers. And thanks especially to the inner circle in the greater Long Beach area who have volunteered to help with grocery shopping, cooking, cleaning, rides, and laundry. This means an awful lot.
Saturday, December 11, 2010
Me in my Hospital Gown
Well, here are a few of the hospital photos. Not my cutest outfit, but look at that color in my face and the glow in my eyes! And these are taken on my first morning, post-op.
One with my wonderful surgeon, Dr. Veale.
Also Michelle, a former student of mine, who visited with me for a few hours this afternoon.
Not All Fun and Games at the Hospital
Another sleep-deprived night. The first night my vitals--blood pressure, blood sugar, temperature, oxygen--were checked every hour. The last two nights, every other hour. But that doesn't tell the whole story.
The insulin infusion is set to alarm every two hours to remind the nurse to check my blood sugar and then adjust the infusion setting. So sometimes the alarm rings for 20 minutes before she responds. I asked the charge nurse why the alarm can't ring on the nurse's watchband rather than in my ears. Oh, no, that's not possible, even though the nurse assigned to me only has one other patient--the kidney transplant patient next door to me.
Also, the damn heart monitor had to be changed out because it was constantly alarming for no reason. Then the replacement started alarming every 10 minutes. Finally someone had the bright idea to shut the alarm off.
Then the nurse had to clean my neck shunt of old blood at 4 in the morning. She took blood from the shunt at 5, but that was too early, so she had to take it again at 6. In between her checks of my blood sugar at midnight, 2, 4, and 6, the nurse's assistant came in on the off hours to check the rest of the vitals. Why couldn't these things be coordinated?
I have complained mightily to the doctors. Sleep deprivation is antithetical to health. It is during sleep that the body heals. A sleep-deprived person is open to stress, infection, and illness. And I am especially susceptible to all of these now that I'm on immune suppressants.
What's more, I have seen serious lapses in cleanliness, and I've called them out. I don't care if they think I'm a complaining bitch. The nurse comes into my room, washes her hand, puts on gloves, then begins touching the door, the cabinets, the computer, then wants to touch me. So I ask her to change her gloves before she does that. The worst was the gal who helped me wash up yesterday. I have so many lines and tubes attached to me that it's very hard to maneuver. She took a washcloth to my catheter and wiped around down there, then took the same washcloth to clean off the lead to my heart monitor, which was dangling at my knee, then to my horror, she puts the very same washcloth back inside me!
Yesterday I thoroughly cleaned my room, something I've taken to doing as soon as I feel up to it in the hospital. I got a canister of Chlorox beach wipes, put on gloves, and started wiping everything down--chairs, bed rails, cabinets, drawers, sinks, door knobs, light switches. I also picked garbage off the floor. You can't count on housekeeping to do any more than changing out the trash receptacles and taking away the dirty gowns.
Add to this, the bed is not at all comfortable. I was in it the first two nights and got a bad back ache. A nurse said this is partly due to the way a body is splayed during surgery. The arms are hooked above the head so that the surgeons don't have any loose skin or folds to deal with. On Thursday night I was more comfortable walking the hallways than lying in bed. Last night I tried the recliner. It was better, but still produced a back ache around 4. I could really use a good massage.
I finally got something by mouth yesterday night--two cups of beef broth. This morning, I had jello, grape juice, and chicken broth for breakfast. Such a treat after days of not eating or drinking.
One other thing: There was some thought that I might have had a heart attack while in surgery. Tests were run Thursday to check the level of a heart enzyme that is released during an attack. Thankfully, my level was normal.
The insulin infusion is set to alarm every two hours to remind the nurse to check my blood sugar and then adjust the infusion setting. So sometimes the alarm rings for 20 minutes before she responds. I asked the charge nurse why the alarm can't ring on the nurse's watchband rather than in my ears. Oh, no, that's not possible, even though the nurse assigned to me only has one other patient--the kidney transplant patient next door to me.
Also, the damn heart monitor had to be changed out because it was constantly alarming for no reason. Then the replacement started alarming every 10 minutes. Finally someone had the bright idea to shut the alarm off.
Then the nurse had to clean my neck shunt of old blood at 4 in the morning. She took blood from the shunt at 5, but that was too early, so she had to take it again at 6. In between her checks of my blood sugar at midnight, 2, 4, and 6, the nurse's assistant came in on the off hours to check the rest of the vitals. Why couldn't these things be coordinated?
I have complained mightily to the doctors. Sleep deprivation is antithetical to health. It is during sleep that the body heals. A sleep-deprived person is open to stress, infection, and illness. And I am especially susceptible to all of these now that I'm on immune suppressants.
What's more, I have seen serious lapses in cleanliness, and I've called them out. I don't care if they think I'm a complaining bitch. The nurse comes into my room, washes her hand, puts on gloves, then begins touching the door, the cabinets, the computer, then wants to touch me. So I ask her to change her gloves before she does that. The worst was the gal who helped me wash up yesterday. I have so many lines and tubes attached to me that it's very hard to maneuver. She took a washcloth to my catheter and wiped around down there, then took the same washcloth to clean off the lead to my heart monitor, which was dangling at my knee, then to my horror, she puts the very same washcloth back inside me!
Yesterday I thoroughly cleaned my room, something I've taken to doing as soon as I feel up to it in the hospital. I got a canister of Chlorox beach wipes, put on gloves, and started wiping everything down--chairs, bed rails, cabinets, drawers, sinks, door knobs, light switches. I also picked garbage off the floor. You can't count on housekeeping to do any more than changing out the trash receptacles and taking away the dirty gowns.
Add to this, the bed is not at all comfortable. I was in it the first two nights and got a bad back ache. A nurse said this is partly due to the way a body is splayed during surgery. The arms are hooked above the head so that the surgeons don't have any loose skin or folds to deal with. On Thursday night I was more comfortable walking the hallways than lying in bed. Last night I tried the recliner. It was better, but still produced a back ache around 4. I could really use a good massage.
I finally got something by mouth yesterday night--two cups of beef broth. This morning, I had jello, grape juice, and chicken broth for breakfast. Such a treat after days of not eating or drinking.
One other thing: There was some thought that I might have had a heart attack while in surgery. Tests were run Thursday to check the level of a heart enzyme that is released during an attack. Thankfully, my level was normal.
Friday, December 10, 2010
Post-Transplant Update
My exhausted, overworked son just drove up to UCLA to bring me the laptop and some other items. He didn't stay long because he has to work at 9 a.m. tomorrow at the restaurant, then work a banquet somewhere else tomorrow night. Then he's up early again on Sunday to wait again.
Today was Day Two Post-Transplant. One of the surgeons took off my bandages this morning. The incisions are fairly small. One for the removal of the peritoneal dialysis tubing that protruded from the left side of my belly button for 22 months. Another along my bikini line for the insertion of the new kidney. And a third as a drain line on the right side of my tummy that is currently attached to an orange-sized drain collector that's pinned to the inside of my hospital gown. Dr. Veale, the main surgeon and a real cutie, never uses staples, only dissolvable tape. Thank goodness. I had staples with my hip-femur surgery in March, and the aftermath of the staples still hurts. But the good news is: I have my cute, little belly back! No more gauze, tubing, or tape. No more transfer set to hide in my underwear or under my shirt. Yippee! No more dialysis!
Wednesday, the day of the surgery, Aaron drove me to UCLA and stayed with me until I was wheeled off to the OR. Though the anesthesiologist had promised me up and down the day before when I spoke with him on the phone that 1) they would put the shunt into my neck after I had gone asleep, and 2) that the breathing tube would be removed before I woke up, as I was taken to the OR, I got the real story: the former would occur when I was still awake, and I probably would still have the breathing tube in me when I woke up.
I had been pretty darn calm up until this point, but these two pieces of info really disturbed me. Following heart surgery last Novemeber, I had been so traumatized by the tube down my throat after I had woken up. I had frantically tried to pull it out, thinking that the hospital staff was set on suffocating me. Then I went through the trauma of having my mother intubated against her will when she was taken to the ER last December before I could intervene and then having to go through the anguishing process of having the tube removed.
Thank goodness I remember precious little of the recovery room or the journey to my room. I was in a morphine dream. Susie was with me in my room until 11. Aaron had gone home as he was exhausted and not feeling well. Through my daze, Susie's coat kept changing texture, color, and design, with a preference for jiggling swirls.
Robby, who had been involved with me on the HBO documentary about kidney donation, was in the waiting room with Susie and Aaron when Dr. Veale came out to talk about my case. Aaron said he was my son, Robby said he was my cousin from New York (!), and Susie said, shucks, she was "just" a friend. Dr. Veale said the kidney upon placement had really "pinked up"--a good sign. He said, as he has said to me many times, that to look at me, you'd never know I had such a history and such calcified veins. But because I had had the CT scan done at Kaiser prior to surgery, he had a good idea of where my best veins were, so he didn't have to do a lot of cutting and hunting around. All looked good.
Robby also visited me the next morning before he flew back to New York. (Yes, that part of his story was accurate! Funny guy!) Of course, when I had eye surgery, Heather introduced herself and Tom as my sister and brother, so perhaps it's standard fare with my friends to want to be literally part of my family.
Susie also visited with me after work yesterday. She even donated blood in my name prior to surgery. She is an amazing woman. Remember, she donated one of her kidneys to her best friend's husband in the summer of 2009.
I was up and walking the floor yesterday. My nurse, Constantine from Romania, said that in his eight years working at UCLA, he had not seen a patient as active as me post-transplant. I feel so much better than I have felt the last few months. And it has been stressful keeping how awful I've felt from everyone--doctors, friends, family, Aaron. I was sleeping with my head elevated on four or five pillows. I had trouble crossing the room. Excess fluids were building up, despite me using strong dialysate. I really struggled doing the laundry, carrying my massage table, taking Rasputin for walks. I frequently had to lie down and nap. I really didn't want to say anything to my doctors because I was afraid of being taken off the transplant list. I didn't want friends and family to know because they might think I shouldn't get the transplant if I was in such bad shape. And I plain didn't want to worry Aaron. Now it feels so cleansing to tell the truth--even to the transplant team.
What a miracle: My skin tone has vastly improved. I have gone from pale and sallow to blushing teenager. And my energy level is so much better. I have walked farther in the past two days than I have walked in the last few weeks. And without fluid pushing on my lungs and heart, without chest pain.
I met Brandie, the 36-year-old from Newbury Park who wanted to give to her husband but was not compatible, so I received her kidney. Her husband, Conrad, was staying in the room next door to her. I have been over to their rooms many times in the past few days. Brandie was feeling poorly, just as Susie had felt post-donation, but Janet was in great shape. She left in the early afternoon yesterday in good spirits. UCLA has a nice hotel where she and her husband, Dana, were put up last night. They visited me today before they left for home. UCLA had presented Janet with a thank-you basked of goodies, including a pin that reads "Everyday Hero." Instead of keeping it, she said I should have it. She said she is just put out for a few weeks of her life, but I have gone through so much all my life and will continue to do so. That was really touching. As with so many minutes during the last few days, tears were very close, but somehow they didn't quite fall.
Received a lot of calls today--even from Marie in France. Sure like hearing from everyone.
A lot of changes in my life are yet to come. A lot of restrictions. Like I sure wish I would have known I can never have sushi again. I would have had a feast the night before surgery. Must be very very careful about infections. I have developed thrush in my mouth, something that is in everyone's mouth but rarely manifests as one's immune system attacks it. But mine is in hibernation so as not to attack the new kidney.
My immune suppressants were reduced today as the standard dose is too strong for me. That's a very good sign. The fewer immune suppressants I have to take and still be able to keep the kidney, the better.
I am still hooked up to three IV lines, down from five yesterday. Still have the catheter for my urine and a continuous heart monitor. A whole lot of spaghetti. And the neck shunt is staying in. It's how they draw my blood. They're a bunch of vampires here, for sure. I told Aaron people are admiring my crazy boot-slippers and dangly earrings when I walk down the hall. He said, "I think they're looking at the tube in your neck, Mom." I said, "You're probably right. It's so punk." (Pictures coming soon, watch out.)
Today was Day Two Post-Transplant. One of the surgeons took off my bandages this morning. The incisions are fairly small. One for the removal of the peritoneal dialysis tubing that protruded from the left side of my belly button for 22 months. Another along my bikini line for the insertion of the new kidney. And a third as a drain line on the right side of my tummy that is currently attached to an orange-sized drain collector that's pinned to the inside of my hospital gown. Dr. Veale, the main surgeon and a real cutie, never uses staples, only dissolvable tape. Thank goodness. I had staples with my hip-femur surgery in March, and the aftermath of the staples still hurts. But the good news is: I have my cute, little belly back! No more gauze, tubing, or tape. No more transfer set to hide in my underwear or under my shirt. Yippee! No more dialysis!
Wednesday, the day of the surgery, Aaron drove me to UCLA and stayed with me until I was wheeled off to the OR. Though the anesthesiologist had promised me up and down the day before when I spoke with him on the phone that 1) they would put the shunt into my neck after I had gone asleep, and 2) that the breathing tube would be removed before I woke up, as I was taken to the OR, I got the real story: the former would occur when I was still awake, and I probably would still have the breathing tube in me when I woke up.
I had been pretty darn calm up until this point, but these two pieces of info really disturbed me. Following heart surgery last Novemeber, I had been so traumatized by the tube down my throat after I had woken up. I had frantically tried to pull it out, thinking that the hospital staff was set on suffocating me. Then I went through the trauma of having my mother intubated against her will when she was taken to the ER last December before I could intervene and then having to go through the anguishing process of having the tube removed.
Thank goodness I remember precious little of the recovery room or the journey to my room. I was in a morphine dream. Susie was with me in my room until 11. Aaron had gone home as he was exhausted and not feeling well. Through my daze, Susie's coat kept changing texture, color, and design, with a preference for jiggling swirls.
Robby, who had been involved with me on the HBO documentary about kidney donation, was in the waiting room with Susie and Aaron when Dr. Veale came out to talk about my case. Aaron said he was my son, Robby said he was my cousin from New York (!), and Susie said, shucks, she was "just" a friend. Dr. Veale said the kidney upon placement had really "pinked up"--a good sign. He said, as he has said to me many times, that to look at me, you'd never know I had such a history and such calcified veins. But because I had had the CT scan done at Kaiser prior to surgery, he had a good idea of where my best veins were, so he didn't have to do a lot of cutting and hunting around. All looked good.
Robby also visited me the next morning before he flew back to New York. (Yes, that part of his story was accurate! Funny guy!) Of course, when I had eye surgery, Heather introduced herself and Tom as my sister and brother, so perhaps it's standard fare with my friends to want to be literally part of my family.
Susie also visited with me after work yesterday. She even donated blood in my name prior to surgery. She is an amazing woman. Remember, she donated one of her kidneys to her best friend's husband in the summer of 2009.
I was up and walking the floor yesterday. My nurse, Constantine from Romania, said that in his eight years working at UCLA, he had not seen a patient as active as me post-transplant. I feel so much better than I have felt the last few months. And it has been stressful keeping how awful I've felt from everyone--doctors, friends, family, Aaron. I was sleeping with my head elevated on four or five pillows. I had trouble crossing the room. Excess fluids were building up, despite me using strong dialysate. I really struggled doing the laundry, carrying my massage table, taking Rasputin for walks. I frequently had to lie down and nap. I really didn't want to say anything to my doctors because I was afraid of being taken off the transplant list. I didn't want friends and family to know because they might think I shouldn't get the transplant if I was in such bad shape. And I plain didn't want to worry Aaron. Now it feels so cleansing to tell the truth--even to the transplant team.
What a miracle: My skin tone has vastly improved. I have gone from pale and sallow to blushing teenager. And my energy level is so much better. I have walked farther in the past two days than I have walked in the last few weeks. And without fluid pushing on my lungs and heart, without chest pain.
I met Brandie, the 36-year-old from Newbury Park who wanted to give to her husband but was not compatible, so I received her kidney. Her husband, Conrad, was staying in the room next door to her. I have been over to their rooms many times in the past few days. Brandie was feeling poorly, just as Susie had felt post-donation, but Janet was in great shape. She left in the early afternoon yesterday in good spirits. UCLA has a nice hotel where she and her husband, Dana, were put up last night. They visited me today before they left for home. UCLA had presented Janet with a thank-you basked of goodies, including a pin that reads "Everyday Hero." Instead of keeping it, she said I should have it. She said she is just put out for a few weeks of her life, but I have gone through so much all my life and will continue to do so. That was really touching. As with so many minutes during the last few days, tears were very close, but somehow they didn't quite fall.
Received a lot of calls today--even from Marie in France. Sure like hearing from everyone.
A lot of changes in my life are yet to come. A lot of restrictions. Like I sure wish I would have known I can never have sushi again. I would have had a feast the night before surgery. Must be very very careful about infections. I have developed thrush in my mouth, something that is in everyone's mouth but rarely manifests as one's immune system attacks it. But mine is in hibernation so as not to attack the new kidney.
My immune suppressants were reduced today as the standard dose is too strong for me. That's a very good sign. The fewer immune suppressants I have to take and still be able to keep the kidney, the better.
I am still hooked up to three IV lines, down from five yesterday. Still have the catheter for my urine and a continuous heart monitor. A whole lot of spaghetti. And the neck shunt is staying in. It's how they draw my blood. They're a bunch of vampires here, for sure. I told Aaron people are admiring my crazy boot-slippers and dangly earrings when I walk down the hall. He said, "I think they're looking at the tube in your neck, Mom." I said, "You're probably right. It's so punk." (Pictures coming soon, watch out.)
Tuesday, December 07, 2010
High Noon
I heard from a UCLA scheduling nurse this afternoon: My surgery is scheduled for noon tomorrow.
I have been extremely calm up to this point, as there have been so many junctures at which the whole thing could have been called off. But now that it is this close, I have a very strong feeling it's going to happen.
My last night on dialysis! Yippee!
I have been extremely calm up to this point, as there have been so many junctures at which the whole thing could have been called off. But now that it is this close, I have a very strong feeling it's going to happen.
My last night on dialysis! Yippee!
Is Obama a Republican Lackey?
Once again, Obama has caved. This time it's extending tax cuts for the rich. I called this more than a month ago. I mean, you could have made a very good living betting against Obama's campaign promises and his beautiful-sounding rhetoric since he became prez. Let me mention but a few:
* repeal of the Patroit Act
* reinstatement of habeas corpus
* closing of Guantanamo Bay
* trying suspected terrorists in civilian court
* protecting the middle class
* preventing industry from moving overseas
* working on behalf of working people
* halting extraordinary rendition
* protection of citizens' constitutional rights
* supporting Main Street, not Wall Street
* Medicare for all
* protection of whistleblowers (like Bradley Manning and Julian Assange)
Oh, yes, Obama sounded great on the campaign trail, and he continues to snow his apologists both at home and abroad. But if you look at his record, it is one of caving, often before he even gets to the bargaining table. When he was running for president, he put forth a center left agenda, but as president, he is center right and often slipping into full-on right.
I was always skeptical of him, and I voted for the other African American candidate, Cynthia McKinney, former congresswoman from Georgia and a real fighter. I have the feeling that she would not have laid down and played dead every time the Republicans wanted something. After all, remember her skuttle with Capitol Police.
* repeal of the Patroit Act
* reinstatement of habeas corpus
* closing of Guantanamo Bay
* trying suspected terrorists in civilian court
* protecting the middle class
* preventing industry from moving overseas
* working on behalf of working people
* halting extraordinary rendition
* protection of citizens' constitutional rights
* supporting Main Street, not Wall Street
* Medicare for all
* protection of whistleblowers (like Bradley Manning and Julian Assange)
Oh, yes, Obama sounded great on the campaign trail, and he continues to snow his apologists both at home and abroad. But if you look at his record, it is one of caving, often before he even gets to the bargaining table. When he was running for president, he put forth a center left agenda, but as president, he is center right and often slipping into full-on right.
I was always skeptical of him, and I voted for the other African American candidate, Cynthia McKinney, former congresswoman from Georgia and a real fighter. I have the feeling that she would not have laid down and played dead every time the Republicans wanted something. After all, remember her skuttle with Capitol Police.
I know that many of you are skeptical of conspiracy theories, but I can find no other explanation for Democrats' willingness to give in to Republicans at every turn. A Democratic congress that didn't say "boo" to Bush's invasion of a country that had done nothing to harm us, to the Patriot Act, to torture, to the illegal detention of thousands of people post-9/11. Dems were in the majority but you would have thought they had no leverage whatsoever.
The same is true for extending tax cuts for the super-rich. Why didn't Obama hold out, let the tax cuts expire for everyone, then after the new congress takes their places, Dems could introduce tax cuts only for those making less than a quarter mil? That way, if the Republicans opposed, they'd be seen as the enemies of the middle class.
I often wonder if Obama and Clinton are in league with the Republicans while giving Democratic principles lip service. Look what happened on Clinton's watch: NAFTA, which put a nail in the coffin of America's manufacturing; further deregulation, including that of the banking industry, which brought about the crisis we're in today; and the 1996 Telecommunications Act, which buried the Fairness Doctrine forever, thereby finishing the work of the Reagan administration. I wonder if Democratic presidents are pulled aside on their first day by the powers that be--the IMF, World Bank, Federal Reserve, Trilateral Commission, big bankers, and multinational corporations--and told that they have to do what's in the best interest of world domination by the super-rich. That was nice, all that talk about helping the people, but now they're presidents and they have to tow the line.
Clinton at least made a bit more show of it, putting on a good front that he actually supported Democratic principles. But Obama just says progressive things, then immediately implements policy that further erodes the Constitution, destroys the American workforce, and funnels even more money to the super-rich. Obama is such a sell-out, yet a good many people still support him. This reminds me of a woman who is beaten by her husband, yet when someone points out to her how awful her situation is, she heartily defends the man.
I would love to see the Shepard Fairey poster of Obama changed from "HOPE" to "BETRAYAL." That would be far more accurate. Perhaps some entrepeneurial soul will do so when Obama runs in 2012.
Thursday, December 02, 2010
Green Light from UCLA!
While I was on my way to LAX this morning to pick up my friend Chris, who was returning from a trip to Singapore and Cambodia, I received a call from Suzanne, the transplant coordinator from UCLA. She said that all eight participants have received medical clearance for surgery. She said that there is always the possibility of a glitch, but that as of this writing, all systems are go. She said that my friends and I should pray that all goes smoothly.
Yes, please see all moving ahead smoothly. All four donors proceeding with their promises. And all four recipients receiving the kidneys that were promised. Please hold this vision. Yippee!
Yes, please see all moving ahead smoothly. All four donors proceeding with their promises. And all four recipients receiving the kidneys that were promised. Please hold this vision. Yippee!
Wednesday, December 01, 2010
Bring Them All Home
So much hand-wringing is going on in this country about the deficit. We can't give unemployment benefits to 2 million Americans because it would add to the deficit. And we have to cut Social Security and Medicare payments. But of course we have to continue to give tax cuts to the rich. This is all so incredibly ridiculous and cruel.
What we need to do is bring all our troops home. And let's include the contractors in that group too. Let's close the 170 some bases we maintain throughout the world. Let's end the wars in Afghanistan, Iraq, and Pakistan, and let's not start wars in Yemen, Iran, or North Korea. All our messing with the world's peoples makes us far less safe than if we would just mind our own business and stay home. The CIA itself said that the world is less safe because of our so-called war on terrorism. It has given would-be enemies of the U.S. a reason to become real enemies.
This would solve the budget deficit in one fell swoop. The military, after all, takes up more than 50 percent of our budget. Remember, folks, that the U.S. spends more on its military than all the other countries of the world combined. What are we so damn scared of!
Instead of these men and women killing people in other countries or messing with the affairs of other nations, they could be home building infrastructure, cleaning up toxic waste sites, policing the borders, and helping out in disasters. We could turn our military into a works projects corps. This would improve this country and make us safer since we wouldn't be prone to attacks from people seeking revenge for the wrongs done to them. Such a simple solution, but no politician has the guts to propose it.
What we need to do is bring all our troops home. And let's include the contractors in that group too. Let's close the 170 some bases we maintain throughout the world. Let's end the wars in Afghanistan, Iraq, and Pakistan, and let's not start wars in Yemen, Iran, or North Korea. All our messing with the world's peoples makes us far less safe than if we would just mind our own business and stay home. The CIA itself said that the world is less safe because of our so-called war on terrorism. It has given would-be enemies of the U.S. a reason to become real enemies.
This would solve the budget deficit in one fell swoop. The military, after all, takes up more than 50 percent of our budget. Remember, folks, that the U.S. spends more on its military than all the other countries of the world combined. What are we so damn scared of!
Instead of these men and women killing people in other countries or messing with the affairs of other nations, they could be home building infrastructure, cleaning up toxic waste sites, policing the borders, and helping out in disasters. We could turn our military into a works projects corps. This would improve this country and make us safer since we wouldn't be prone to attacks from people seeking revenge for the wrongs done to them. Such a simple solution, but no politician has the guts to propose it.
Dragging
Today was a day like so many in the last few months--wearying. All that I accomplished was taking Rasputin for two short walks and doing four loads of laundry. And this tuckered me out.
Again today I felt an upwelling of fluids into my chest whenever I'd do the slightest bit of exercise--like walking across the room. These fluids put pressure on my chest, making it difficult to breathe and giving me an overall feeling of constraint and constriction.
I would carry a load of laundry to the laundry room behind my apartment, stop and take a rest, load the laundry into the wash machine, take another rest, carry the dry laundry into the apartment, sort it and hang it up, then lie down to take a half-hour nap. That was my day. Rasputin, of course, is a big believer in naps, so he snuggled next to me.
I keep thinking that once I get a kidney transplant, I'll be able to walk across the room with ease, do simple tasks like the laundry with no sweat, and even have enough energy to hike and surf again. Wow, wouldn't that be something!
Again today I felt an upwelling of fluids into my chest whenever I'd do the slightest bit of exercise--like walking across the room. These fluids put pressure on my chest, making it difficult to breathe and giving me an overall feeling of constraint and constriction.
I would carry a load of laundry to the laundry room behind my apartment, stop and take a rest, load the laundry into the wash machine, take another rest, carry the dry laundry into the apartment, sort it and hang it up, then lie down to take a half-hour nap. That was my day. Rasputin, of course, is a big believer in naps, so he snuggled next to me.
I keep thinking that once I get a kidney transplant, I'll be able to walk across the room with ease, do simple tasks like the laundry with no sweat, and even have enough energy to hike and surf again. Wow, wouldn't that be something!
Tuesday, November 30, 2010
A Day of Waiting
Today was one of many, many days of waiting in the transplant process. Since I won't have a go-ahead for my own test results until Thursday and probably an overall go-ahead concerning all the participants in the transplant chain until Friday, there is not much for me to think about. Though I sent out a mass email that told friends things look good, there is still no definitive "yes" to surgery.
I had to make a few calls about the CT scan of my abdomen that UCLA requested. I have an appointment for 8 tomorrow morning. And I had an appointment with a pulmonologist, who prescribed a nasal spray to help dry up my mucous. He gave me a letter to fax to UCLA, stating that from a pulmonary standpoint, I am good to go.
Last night I lost another 2 pounds during dialysis treatment, but I must still have more to go. Though I can walk much farther than I could just two days ago, I still feel an upwelling of fluids and the resulting pressure on my chest upon exercise. I would feel so much better if I felt no fatigue or pressure upon walking. That would be the best way to enter surgery.
I had to make a few calls about the CT scan of my abdomen that UCLA requested. I have an appointment for 8 tomorrow morning. And I had an appointment with a pulmonologist, who prescribed a nasal spray to help dry up my mucous. He gave me a letter to fax to UCLA, stating that from a pulmonary standpoint, I am good to go.
Last night I lost another 2 pounds during dialysis treatment, but I must still have more to go. Though I can walk much farther than I could just two days ago, I still feel an upwelling of fluids and the resulting pressure on my chest upon exercise. I would feel so much better if I felt no fatigue or pressure upon walking. That would be the best way to enter surgery.
Gnomes Take on the TSA
A few nights ago, I finally got around to the filming of a promotional video I had roughed out a long time ago. Aaron is the camera man. I am the actress.
Perhaps now that the TSA is under justifiable attack for violating the Fourth Amendment to the Constitution by irradiating travelers and feeling them up, Gnomeland Security t-shirts will receive their due.
Sure would appreciate you accessing the following youtube link. I get a terrible case of the giggles at the beginning, so much so that you can see a tear in my left eye even once I finally settle down. But as I offer as an excuse in the video, "I haven't acted in a long time."
Have fun with this Gnomeland Security video and please make it viral.
http://www.youtube.com/watch?v=sT60tziiGRk
Perhaps now that the TSA is under justifiable attack for violating the Fourth Amendment to the Constitution by irradiating travelers and feeling them up, Gnomeland Security t-shirts will receive their due.
Sure would appreciate you accessing the following youtube link. I get a terrible case of the giggles at the beginning, so much so that you can see a tear in my left eye even once I finally settle down. But as I offer as an excuse in the video, "I haven't acted in a long time."
Have fun with this Gnomeland Security video and please make it viral.
http://www.youtube.com/watch?v=sT60tziiGRk
Monday, November 29, 2010
Great Acts of Love
This afternoon I called Cindy, my potential donor in Phoenix, to report to her about my day at UCLA. Turns out, Suzanne, the paired-donation coordinator, had called her earlier to tell her that she and I are compatible. Cindy told Suzanne and she told me that she is still onboard, should something fall through with the proposed four-way exchange.
The kindness and selfless generosity of two strangers has gotten me this far, and I am very thankful to both Cindy and Janet. Of course, by now, Janet has become a friend, but her initial offer came when we barely knew each other. These two women speak loudly of the goodness that is inherent in the human species. Too often we focus on the awful things humans do, but we are also capable of great acts of love, even toward strangers.
I feel so blessed! Last June to have moved next door to Janet, the woman who would just two months after meeting me, say that she wanted to be my donor. And then, because Janet and I are not compatible, I solicited help to find another donor and Cindy stepped forward. Cindy, the friend of a former student of mine, but besides that tangental connection, a stranger.
Good News from UCLA
I was at UCLA most of the day, getting lab work done, taking an EKG, having chest x-rays, meeting with the transplant coordinator, the nephrologist, and the surgeon, and filling out admissions paperwork. I won't know the results of the final cross-match and the EKG until Thursday, but as of this writing, things look provisionally good.
There is still some concern about my heart. Due to fluid overload and perhaps due to a lingering infection and/or an allergy, I have had difficulty exercising, since excess water has made my abdominal cavity as tight as a drum, thereby putting a lot of pressure on my heart. Last night during dialysis, I was able to pull off 8 pounds of water weight, and yet I am still edemic. Dr. Wong, the UCLA nephrologist, said that I should continue to use strong dialysates in order to pull off more water, even below my so-called dry weight. Just having lost the 8 pounds last night, I feel a big difference. Walking across the room has been difficult for the last few days, but today I walked up stairs and much longer distances with little problem.
There is still some concern about my heart. Due to fluid overload and perhaps due to a lingering infection and/or an allergy, I have had difficulty exercising, since excess water has made my abdominal cavity as tight as a drum, thereby putting a lot of pressure on my heart. Last night during dialysis, I was able to pull off 8 pounds of water weight, and yet I am still edemic. Dr. Wong, the UCLA nephrologist, said that I should continue to use strong dialysates in order to pull off more water, even below my so-called dry weight. Just having lost the 8 pounds last night, I feel a big difference. Walking across the room has been difficult for the last few days, but today I walked up stairs and much longer distances with little problem.
My surgeon, Dr. Veale, wants to check with UCLA cardiology to get its go-ahead. I sure hope this is a hand-waving or a cursory appointment that would mean another trip to UCLA this week.
Interesting that both doctors checked my lungs. One found evidence of water on the lungs, the other didn't. The subjectivity of medicine.
Dr. Veale said I looked great, that he wasn't used to seeing patients look as good as I do, and that it was hard for him to believe that I am the person who has such a long, arduous, and complicated medical history. That was nice to hear.
I asked Dr. Veale if there was any way that he could minimize the cut he'd have to make. He said that, given my history, there is a strong possibility that he'll make a cut on one side but will be unable to find any good veins with which to connect the transplanted kidney. That will mean he'll have to make a cut on the other side, hoping to find good veins over there. I asked if there is any way he can find out where the good veins are prior to surgery. He said, yes, with a CAT scan. He said most of his patients are overweight and so aren't concerned about scarring, I guess because their fat covers up the scars. He said he would love it if every patient was given pre-op CAT scans, but they're around $3,000. I asked if he could write the request in such a way to highlight the medical necessity of knowing where the good veins are so as to minimize the risk of infection and excessive bleeding and to reduce the time in surgery. He said he'd give it a try. The fewer cuts on my cute, little belly, the better.
Found out that my donor is a 36-year-old woman who wished to donate to her husband but was incompatible with his blood type. So I'm getting a young kidney. More good news.
The most wonderful news Dr. Veale saved for the end of our visit. He said that recent research, soon to be published, shows that the transplantation of islets of Langerhans, the cells that are responsible for the insulin-producing function of the pancreas, is now just as successful as transplantation of the entire pancreas. Moreover, the former does not involve surgery, only an outpatient visit in which a syringe full of the cells is injected into the body. They adhere to the liver and begin functioning, producing insulin so that the patient can be free of shots or, in my case, an insulin pump! Transplantation of the pancreas, on the other hand, requires about six hours of surgery, plus the accompanying risk of injection and bleeding, in addition to weeks of recovery. Wow, to think that by this time next year, my body would be producing its own insulin for the first time in 40 years!
So as of this writing, all looks good. Should know for sure by Thursday. Thanks to all who have kept me in your thoughts and in your prayers. Please keep those good vibes coming.
Sunday, November 28, 2010
Feeling Confident
I'm feeling much more confident than I was just a few days ago that I will pass the pre-op tests.
I saw my acupuncturist, Dr. Mai, yesterday afternoon. He felt that my distended stomach, due to fluid overload, was putting pressure on my chest and giving me chest pain. He said that he did not feel that the problem was primarily cardiac, only secondarily because of the pressure. He gave me some herbs to help with fluid retention, and I have upped the strength of my dialysate to take off some water weight.
Since then, I no longer am struggling to breathe just from crossing the room. I am able to walk quite a bit farther before the symptoms arise. I am sure that by tomorrow morning when the tests are conducted that all will be in order.
This is a huge relief, taking a lot of emotional pressure off me. You see, if I don't pass my pre-ops, then everyone's surgery is off. So it's not just my life that I would be jeopardizing but three other people's as well. Having everything go smoothly from this point on not only saves my life but the lives of three strangers. We all need to be seen as healthy enough to undergo surgery, surrounded in white, divine light and blue, healing light.
I saw my acupuncturist, Dr. Mai, yesterday afternoon. He felt that my distended stomach, due to fluid overload, was putting pressure on my chest and giving me chest pain. He said that he did not feel that the problem was primarily cardiac, only secondarily because of the pressure. He gave me some herbs to help with fluid retention, and I have upped the strength of my dialysate to take off some water weight.
Since then, I no longer am struggling to breathe just from crossing the room. I am able to walk quite a bit farther before the symptoms arise. I am sure that by tomorrow morning when the tests are conducted that all will be in order.
This is a huge relief, taking a lot of emotional pressure off me. You see, if I don't pass my pre-ops, then everyone's surgery is off. So it's not just my life that I would be jeopardizing but three other people's as well. Having everything go smoothly from this point on not only saves my life but the lives of three strangers. We all need to be seen as healthy enough to undergo surgery, surrounded in white, divine light and blue, healing light.
Tuesday, November 23, 2010
Pre-op Tests Scheduled for Next Monday
I received a call from UCLA around 3 this afternoon. Suzanne said that my pre-op tests are scheduled for next Monday. These include blood tests, EKG, and observation of vital signs by a nephrologist. I will know if I passed by next Thursday.Also on Monday I will meet with the surgeon, who will give his provisional OK to surgery. His final approval is dependent upon the results of the pre-op tests.
If anyone has any practices, meditations, prayers, incantations, or healing modalities to suggest, this would be the time to do it. Please when you think of me during these next few days, and especially on Monday morning, see me as having a strong, vibrant heart that will pass the EKG with flying colors. My very life depends on this.
Monday, November 22, 2010
Surgery Scheduled for Dec. 8
I just heard from UCLA. The donor who was being difficult is now on board. Janet's and my surgeries have been tentatively scheduled for Dec. 8, a little over two weeks away.
A few hurdles still have to be cleared: final blood tests, EKGs, and surgeons' approvals. Suzanne, the UCLA transplant coordinator who works with paired donations, said she would try to get me in sometime this week for tests.
It's amazing to think that by Christmas I could be out of the hospital, have my cute little belly back (no tubing, gauze, or tape), and get an uninterrupted night's sleep (no more continual gurgling and chugging of the dialysis machine, no more of its alarms). This would also mean that I would again have some hope that I might someday be in a relationship. And that I can travel unencumbered (except for the insulin pump, blood glucose sensor, and diabetic supplies).
There will be no caroling for brandy this year. Perhaps those who have caroled with me in previous years will show up at my bedside and regale me. If not, I'm still looking forward to the best Christmas present yet--a new kidney.
A few hurdles still have to be cleared: final blood tests, EKGs, and surgeons' approvals. Suzanne, the UCLA transplant coordinator who works with paired donations, said she would try to get me in sometime this week for tests.
It's amazing to think that by Christmas I could be out of the hospital, have my cute little belly back (no tubing, gauze, or tape), and get an uninterrupted night's sleep (no more continual gurgling and chugging of the dialysis machine, no more of its alarms). This would also mean that I would again have some hope that I might someday be in a relationship. And that I can travel unencumbered (except for the insulin pump, blood glucose sensor, and diabetic supplies).
There will be no caroling for brandy this year. Perhaps those who have caroled with me in previous years will show up at my bedside and regale me. If not, I'm still looking forward to the best Christmas present yet--a new kidney.
Concert in a Private Residence's Music Hall
If you're like me, you've often wondered, "What do the rich do with all their money?" I have one answer: They build a music hall in their home, complete with a two-story pipe organ, a glass-cabineted library, and balcony seating. Yesterday my neighbor Janet and I beheld such an extravagance when I attended a fortepiano concert in Brentwood.
The fortepiano is the precursor of the modern piano. According to a musician I queried at length at the event, the fortepiano's strings are parallel, whereas the piano's are crossed, making for a clearer sound on the former and a more romantic sound on the latter. I heard Andrew Willis play pieces that included sonatas by Bach, Muzio Clementi, Mozart, Scarlotti, and Hayden.
The space is called the Contrapuntal Performances Recital Hall at 655 N. Bundy in Brentwood. It is an addition that producer-screenwriter Bonnie MacBird and computer scientist Alan Kay built onto their ranch-style house. Skylights in the balcony and nearly floor-to-ceiling windows in the main hall provide ample lighting. The hall also features a harpsichord and a piano.
I was once a member of the Southern California Early Music Society and have attended many of its medieval and baroque events over the years. I looked on its web site for venues and found this one. Turns out there are at least two series that allow aficionados to hear early music in private residences. After all, that was how the music was originally performed--in small, intimate settings in the homes of wealthy patrons and royalty.
The fortepiano is the precursor of the modern piano. According to a musician I queried at length at the event, the fortepiano's strings are parallel, whereas the piano's are crossed, making for a clearer sound on the former and a more romantic sound on the latter. I heard Andrew Willis play pieces that included sonatas by Bach, Muzio Clementi, Mozart, Scarlotti, and Hayden.
The space is called the Contrapuntal Performances Recital Hall at 655 N. Bundy in Brentwood. It is an addition that producer-screenwriter Bonnie MacBird and computer scientist Alan Kay built onto their ranch-style house. Skylights in the balcony and nearly floor-to-ceiling windows in the main hall provide ample lighting. The hall also features a harpsichord and a piano.
I was once a member of the Southern California Early Music Society and have attended many of its medieval and baroque events over the years. I looked on its web site for venues and found this one. Turns out there are at least two series that allow aficionados to hear early music in private residences. After all, that was how the music was originally performed--in small, intimate settings in the homes of wealthy patrons and royalty.
Sunday, November 21, 2010
Frank Fairfield at the Museum of Jurassic Technology
Yesterday evening, Aaron and I attended a concert at the Museum of Jurassic Technology, an eccentric venue in Culver City that is more of a repository for curiosities than for facts. My absolute favorite place in Southern California.
Since Aaron is a Jurassic member, our tickets were only $12 each. A great deal, but non-members can attend for a mere $15. To think that some people pay hundreds of dollars for a concert in which they have to watch the performer on a screen because the stage is so far from where they're sitting and then think that I was close enough to touch Frank Fairfield last night. Aaron told me that the bottom-of-the-barrel Cher tickets are going for $240. You could see Frank 20 times for that price.
For a piece that NPR did on Frank, see http://www.npr.org/templates/story/story.php?storyId=128823639
Frank played banjo, guitar, and fiddle. He wore his shirt buttoned all the way up. He was clean-cut and smacked of another era. You could easily imagine that we were all back in the Great Depression, easing our minds from the cares of the day with Frank's music.
Held as all Jurassic concerts are in the museum's Russian tea room, seating is very limited. Perhaps no more than 35 people can jam into the space, which is lit by twisted menorahs and votive candles.
It's hard to convey how deeply Frank moved me. Granted, I projected a whole lot onto him--the resiliance of the American spirit, the honesty and integrity of the salt of the earth, an ineffable something that is inherent, though presently latent, in the American soul that cannot be killed by government intrusion, economic hard times, advertising, consumerism, facebook, and corporations. I had a clear vision that, as this country continues to become a second-rate power, that people across the nation will begin playing music with their neighbors at night, that they'll turn off their TVs and their Internet and begin to know each other again. One can only hope.
Since Aaron is a Jurassic member, our tickets were only $12 each. A great deal, but non-members can attend for a mere $15. To think that some people pay hundreds of dollars for a concert in which they have to watch the performer on a screen because the stage is so far from where they're sitting and then think that I was close enough to touch Frank Fairfield last night. Aaron told me that the bottom-of-the-barrel Cher tickets are going for $240. You could see Frank 20 times for that price.
For a piece that NPR did on Frank, see http://www.npr.org/templates/story/story.php?storyId=128823639
Frank played banjo, guitar, and fiddle. He wore his shirt buttoned all the way up. He was clean-cut and smacked of another era. You could easily imagine that we were all back in the Great Depression, easing our minds from the cares of the day with Frank's music.
Held as all Jurassic concerts are in the museum's Russian tea room, seating is very limited. Perhaps no more than 35 people can jam into the space, which is lit by twisted menorahs and votive candles.
It's hard to convey how deeply Frank moved me. Granted, I projected a whole lot onto him--the resiliance of the American spirit, the honesty and integrity of the salt of the earth, an ineffable something that is inherent, though presently latent, in the American soul that cannot be killed by government intrusion, economic hard times, advertising, consumerism, facebook, and corporations. I had a clear vision that, as this country continues to become a second-rate power, that people across the nation will begin playing music with their neighbors at night, that they'll turn off their TVs and their Internet and begin to know each other again. One can only hope.
Friday, November 19, 2010
A New Road to a New Kidney
So much has been going on during the last almost-three weeks that I have not been able to write about until now. Three weeks ago this coming Monday, I received a call from Suzanne, the paired-donor coordinator at UCLA. She said she had found a potential match for me in a four-way exchange. This means that four unmatched donor-recipient pairs are matched to others within the four pairs. So I will receive a kidney from a stranger, and Janet (she's an A and I'm an O) will give to someone in Virginia. So, too, with the other five people in the chain, which may in fact be a loop.
A chain is when an altruistic, or non-directed, donor (someone who is donating to a stranger) starts the chain. The recipient of the altruistic donor's kidney then has his or her friend or family member donate to some other stranger who also has an unmatched donor. The chain can conceivably go on forever, though it is generally broken at some point. A loop would be that Friend A (who is friends with Recipient A) donates to Recipient B. Friend B donates to Recipient C. Friend C donates to Recipient D. Friend D donates to Recipient A. The latter may be what's going on in this proposed four-way. I don't know because Suzanne is so harried trying to make arrangements between the four pairs, the surgeons, the four medical centers etc. that she can only give me broad brushstrokes when I speak with her.
This past summer, Janet and I were scheduled for surgery with another pair, but the other recipient turned out to be incompatible with Janet. That is known as a paired donation.
So three weeks ago this coming Tuesday, I went into UCLA for blood tests. Suzanne said that though the computer said I had a match, this needed to be confirmed. Last Friday, about a week and a half after taking the tests, I found out that, yes, I am compatible with my donor. Janet told me today that all four pairs are compatible.
During this wait for results, I didn't want to say anything to Cindy and then have to retract it, should I not be compatible with my donor or should any of the other pairs in the chain not be compatible. But this Monday I called Suzanne and asked her what I should say to Cindy. I didn't want to leave her hanging.
Suzanne told me to tell Cindy that this was not a sure thing, but if it did work out, it would mean that four people would get a new kidney. Suzanne said I could ask Cindy to be my back-up, should things fall apart in one way or another. I called Cindy on Monday and left a message, then left a Facebook message later in the week. Last night she called. She's gotten a promotion and is working a lot of overtime. She seemed happy at the prospect of four people receiving kidneys in this chain. I told her I'd let her know any news as soon as I knew.
Yesterday Suzanne was supposed to tell me if everything had the green light, but yesterday things were still up in the air. She said she'd know for sure by today. But she still doesn't know. The reasons for the delay, however, are becoming clearer: One of the donors farther up the chain (perhaps the person who donates to another UCLA patient whose friend donates to me) is "difficult to reach"--not a good sign. Also, he now wants to fly out to LA to have the transplant done at UCLA because he read that the recipient fares better if the kidney is harvested at the same medical center in which the transplant is taking place. Suzanne said he is looking at old data, that current stats show similar success rates for donor and recipient at the same medical center and for cases in which the two are separated by hundreds or even thousands of miles.
If the surgeon could talk frankly with this donor, he might tell him that four people's lives are held in the balance and that insisting on coming to LA will delay the process or even totally disrupt it as UCLA would then have to follow its own protocol, adding potentially months of retesting. But as the law is, the donor cannot in any way be coerced. So all the surgeon can do is give the potential donor educational information, perhaps email him studies that show similar success rates for same- and different-med center transplants. Suzanne said that if she hears anything over the weekend, she'll call me. Janet and I were scheduled to go into UCLA for final tests and surgeon consults on Monday, but that is on hold until or if Suzanne gets a go-ahead from this donor.
So things are moving in the right direction, but many hurdles still must be cleared. Not least of which is that everyone has to pass his or her EKG. If one person fails, the whole chain is null and void.
If you're a praying person, I sure would appreciate some prayers. Envision every step of the way from here on in going smoothly so that four people will have the best Christmas presents ever--new kidneys!
A chain is when an altruistic, or non-directed, donor (someone who is donating to a stranger) starts the chain. The recipient of the altruistic donor's kidney then has his or her friend or family member donate to some other stranger who also has an unmatched donor. The chain can conceivably go on forever, though it is generally broken at some point. A loop would be that Friend A (who is friends with Recipient A) donates to Recipient B. Friend B donates to Recipient C. Friend C donates to Recipient D. Friend D donates to Recipient A. The latter may be what's going on in this proposed four-way. I don't know because Suzanne is so harried trying to make arrangements between the four pairs, the surgeons, the four medical centers etc. that she can only give me broad brushstrokes when I speak with her.
This past summer, Janet and I were scheduled for surgery with another pair, but the other recipient turned out to be incompatible with Janet. That is known as a paired donation.
So three weeks ago this coming Tuesday, I went into UCLA for blood tests. Suzanne said that though the computer said I had a match, this needed to be confirmed. Last Friday, about a week and a half after taking the tests, I found out that, yes, I am compatible with my donor. Janet told me today that all four pairs are compatible.
During this wait for results, I didn't want to say anything to Cindy and then have to retract it, should I not be compatible with my donor or should any of the other pairs in the chain not be compatible. But this Monday I called Suzanne and asked her what I should say to Cindy. I didn't want to leave her hanging.
Suzanne told me to tell Cindy that this was not a sure thing, but if it did work out, it would mean that four people would get a new kidney. Suzanne said I could ask Cindy to be my back-up, should things fall apart in one way or another. I called Cindy on Monday and left a message, then left a Facebook message later in the week. Last night she called. She's gotten a promotion and is working a lot of overtime. She seemed happy at the prospect of four people receiving kidneys in this chain. I told her I'd let her know any news as soon as I knew.
Yesterday Suzanne was supposed to tell me if everything had the green light, but yesterday things were still up in the air. She said she'd know for sure by today. But she still doesn't know. The reasons for the delay, however, are becoming clearer: One of the donors farther up the chain (perhaps the person who donates to another UCLA patient whose friend donates to me) is "difficult to reach"--not a good sign. Also, he now wants to fly out to LA to have the transplant done at UCLA because he read that the recipient fares better if the kidney is harvested at the same medical center in which the transplant is taking place. Suzanne said he is looking at old data, that current stats show similar success rates for donor and recipient at the same medical center and for cases in which the two are separated by hundreds or even thousands of miles.
If the surgeon could talk frankly with this donor, he might tell him that four people's lives are held in the balance and that insisting on coming to LA will delay the process or even totally disrupt it as UCLA would then have to follow its own protocol, adding potentially months of retesting. But as the law is, the donor cannot in any way be coerced. So all the surgeon can do is give the potential donor educational information, perhaps email him studies that show similar success rates for same- and different-med center transplants. Suzanne said that if she hears anything over the weekend, she'll call me. Janet and I were scheduled to go into UCLA for final tests and surgeon consults on Monday, but that is on hold until or if Suzanne gets a go-ahead from this donor.
So things are moving in the right direction, but many hurdles still must be cleared. Not least of which is that everyone has to pass his or her EKG. If one person fails, the whole chain is null and void.
If you're a praying person, I sure would appreciate some prayers. Envision every step of the way from here on in going smoothly so that four people will have the best Christmas presents ever--new kidneys!
Thursday, November 18, 2010
A Year Ago Today
A year ago today I underwent triple-bypass surgery. I honestly can't say that it's made much of a difference. At the time, I begrudgingly submitted to it because I was told that if I did not have the heart surgery, I would be denied the transplant. Of course, as I found out under pressing the issue, just getting the bypass surgery was no guarantee that I would be approved for a transplant.
For about two months, around July and August of this year, I felt pretty good. I could exercise without getting winded or experiencing chest pain. Since then, I'm often tired, weak, and unable to walk very far without having symptoms. I sure wish I could have had the transplant surgery this summer when it was originally scheduled.
I am avoiding caffeine, exercising as much as I can, eating right, and getting plenty of sleep. And of course maintaining an amazingly positive attitude. Trying to stay as healthy as possible so that I can pass the EKG I will have to undergo before surgery is approved.
I can certainly see why the ideal time to receive a transplant is prior to the onset of dialysis. And if not then, at least in the first year of dialysis. Feb. 2 of next year will make two years for me. I sure hope things will happen sooner than later.
For about two months, around July and August of this year, I felt pretty good. I could exercise without getting winded or experiencing chest pain. Since then, I'm often tired, weak, and unable to walk very far without having symptoms. I sure wish I could have had the transplant surgery this summer when it was originally scheduled.
I am avoiding caffeine, exercising as much as I can, eating right, and getting plenty of sleep. And of course maintaining an amazingly positive attitude. Trying to stay as healthy as possible so that I can pass the EKG I will have to undergo before surgery is approved.
I can certainly see why the ideal time to receive a transplant is prior to the onset of dialysis. And if not then, at least in the first year of dialysis. Feb. 2 of next year will make two years for me. I sure hope things will happen sooner than later.
Tuesday, November 16, 2010
More from Mander
I absolutely cannot resist plucking a few morsels from the feast that is Jerry Mander's book "Four Arguments for the Elimination of Televsion." Granted, these morsels are taken out of context and they are often the conclusions of well-thought-out arguments he makes, but I offer them in the hopes of stimulating your thought and encouraging you to read the book yourself.
"People's minds seemed to be running in dogged, one-dimensional channels which reminded me of the freeways, office buildings and suburbs that were the physical manifestations of the same period....Could life within these new forms of physical confinement produce mental confinement?" (p. 23)
"America had become the first culture to have substituted secondary, mediated versions of experience for direct experience of the world." (p. 24)
"A new muddiness of mind was developing. People's patterns of discernment, discrimination and udnerstanding were taking a dive. They didn't seem able to make distinctions between information which was pre-processed and then filtered through a machine, and that which came to them whole, by actual experience." (p. 25)
"People's minds seemed to be running in dogged, one-dimensional channels which reminded me of the freeways, office buildings and suburbs that were the physical manifestations of the same period....Could life within these new forms of physical confinement produce mental confinement?" (p. 23)
"America had become the first culture to have substituted secondary, mediated versions of experience for direct experience of the world." (p. 24)
"A new muddiness of mind was developing. People's patterns of discernment, discrimination and udnerstanding were taking a dive. They didn't seem able to make distinctions between information which was pre-processed and then filtered through a machine, and that which came to them whole, by actual experience." (p. 25)
"I was chiled at the thought, realizing that these conditions of television viewing--confusion, unification, isolation, especially when combined with passivity and what I later learned of the effects of implanted imagery--were ideal preconditions for the imposition of autocracy." (p. 27)
"One movement became the same as the next one; one media action merged with the fictional program that followed; one revolutionary line was erased by the next commercial, leading to a new level of withdrawal, unconern and stasis. In the end, the sixties were revealed as the flash of light before hte bulb goes out." (p. 33)
"When a messaage is squeezed through a twenty-second news spot, so much can be lost that what is left will fail to move anyone enough to make them turn off the set and actually do something." (pp. 37-38)
[preceded by a discussion of the folly of attempting to convey the way of life of indigenous cultures on TV]
"Understanding Indian ways enough to care about them requies understanding a variety of dimensions of nuance and philosophy. You don't need any of that to understand a product, you do not have problems of subtlety, detail, time and space, historiccal context or organic form. Products are inherently communicable on television because of their static quality, sharp, clear, highly visible lines, and because they carry no informational meaning beyond what they themselves are. They contain no life at all and are therefore not capable of dimension. Nothing works better as telecommunications than images of products." (pp. 42-43)
"To speak of television as 'neutral' and therefore subject to change is as absurd as speaking of the reform of a technology such as guns." (p. 47)
"two unfortunate conditions of modern existence: Human beings no longerf trust peronal observation--even of the self-evident, until it is confirmed by scientific or technological institutions; human beings have lost insight into natural processes--how the world works, the human role as one of many interlocking parts of the worldwide ecosystem--because natural processes are now exceedingly difficult to observe." (p. 54)
"Virtually every experience is mediated in some way." (p. 55)
"In three generations since Edison, we have become creatures of light alone." (p. 58)
[To this I comment: Some of the most profound experiences of my life have been alone in the wilderness at night. Fifty or more miles from the nearest dirt town in the desert, standing on the shore of an interior lake on Isle Royal in Lake Superior while the howl of a wolf pack penetrated me to the bones, or being the sole camper on Santa Cruz Island off the coast of Ventura. But how many people in the modern world have had such encounters with absolute isolation and absolute darkness?]
"The moon's cycle affects the oceans, they [the experts] say, but it doesn't affect the body. Does that sound right to you? It doesn't to me. And yet, removed from any personal awareness of the moon, unable even to see it very well, let alone experience it, how are we to know what is right and what is wrong? Most of us cannot say if, this very evening, the moon will be out at all." (p. 59)
This takes us only to p. 59 of the book's 367 pages. This is only the beginning of the journey, as Mander frist sets the stage for television by showing how the world we have created is ideally suited for television's havoc.
Monday, November 15, 2010
Are the Images Inside Your Head Yours or TV's?
If you didn't read my previous post about "Four Arguments for the Elimination of Television," you must read that first to get some context.
One of many, many things about Jerry Mander's book that I found fascinating was a thought experiment he asks readers to take in order to prove that TV images are more powerful than those from the reader's actual experience. I'll give a shortened version of it here.
Bring each of these to mind:
* China
* Africa
* Borneo
* ancient Rome
* a Russian village
* Ben Franklin
* the Old West
* the FBI
* the Old South
* an American farm family
* the Crusades
* the war room at the Pentagon
* a preoperation conference of doctors
* dope smugglers
* the landing of the Pilgrims
* a Stone Age tribe
"Were you able to come up with images for any or all of them? It is extremely unlikely that you have experienced more than two or three of them personally. (Well, I count four.) Obviously the images wer either out of your own imagination or else they were from the media."
"Now let's go a step further.
"Please bring to mind a baseball game or football game. Have you got one? Hold it for a moment.
"If you are like most Americans, you have actually been to a game. You have seen one directly and probably participated in one personally. You have probably also watched at least one of them on television. Here's the question: Which one did you bring to mind? The television version or the one you experienced directly?"
(As I have only been to a half dozen or so games and have never seen a game on TV except in passing through the room in which one was being viewed, I am probably an exception to this confusion. I actually can tell the real games from the TV ones. But I bet this is not the case with most Americans.)
Mander then speaks about an experience that resonates more strongly with me. He asks if you have ever read a book before you've seen the movie. Of course. You make images in your mind as you're reading the book of the characters and the setting. But once you see the movie, you cannot recall the images you created. The movie images have usurped your own.
Mander writes, "Once images are inside your head, the mind doesn't really distinguish between the image that was gathered directly and the one that derived from television." YIKES!
"We are left with a very bizarre phenomenon. Television is capbable of dominating personally derived imagery--from books or imagination--and it is also capable, at least some of the time, of causing confusion as to what is real experience and what is television experience. The mind is very democratic about its image banks, all are equally available for our recall and use. And so when we call on our images for whatever purposes we may have for them, we are as likely to produce an implanted image as one which was originally our own.
"The root of this unfortunate problem lies with the fact that until very recently, human beings had no need to make distinctions between artificial images of distant events and life directly lived."
Mander makes quick business of the person who thinks she is too sophisticated or too savvy or too smart to be fooled by TV, the person who says, "I know the difference between reality and TV." Mander says that we're not discussing facts here, we're talking about images. Your mind may be able to tell fact from fiction, but it treats all images the same.
One of many, many things about Jerry Mander's book that I found fascinating was a thought experiment he asks readers to take in order to prove that TV images are more powerful than those from the reader's actual experience. I'll give a shortened version of it here.
Bring each of these to mind:
* China
* Africa
* Borneo
* ancient Rome
* a Russian village
* Ben Franklin
* the Old West
* the FBI
* the Old South
* an American farm family
* the Crusades
* the war room at the Pentagon
* a preoperation conference of doctors
* dope smugglers
* the landing of the Pilgrims
* a Stone Age tribe
"Were you able to come up with images for any or all of them? It is extremely unlikely that you have experienced more than two or three of them personally. (Well, I count four.) Obviously the images wer either out of your own imagination or else they were from the media."
"Now let's go a step further.
"Please bring to mind a baseball game or football game. Have you got one? Hold it for a moment.
"If you are like most Americans, you have actually been to a game. You have seen one directly and probably participated in one personally. You have probably also watched at least one of them on television. Here's the question: Which one did you bring to mind? The television version or the one you experienced directly?"
(As I have only been to a half dozen or so games and have never seen a game on TV except in passing through the room in which one was being viewed, I am probably an exception to this confusion. I actually can tell the real games from the TV ones. But I bet this is not the case with most Americans.)
Mander then speaks about an experience that resonates more strongly with me. He asks if you have ever read a book before you've seen the movie. Of course. You make images in your mind as you're reading the book of the characters and the setting. But once you see the movie, you cannot recall the images you created. The movie images have usurped your own.
Mander writes, "Once images are inside your head, the mind doesn't really distinguish between the image that was gathered directly and the one that derived from television." YIKES!
"We are left with a very bizarre phenomenon. Television is capbable of dominating personally derived imagery--from books or imagination--and it is also capable, at least some of the time, of causing confusion as to what is real experience and what is television experience. The mind is very democratic about its image banks, all are equally available for our recall and use. And so when we call on our images for whatever purposes we may have for them, we are as likely to produce an implanted image as one which was originally our own.
"The root of this unfortunate problem lies with the fact that until very recently, human beings had no need to make distinctions between artificial images of distant events and life directly lived."
Mander makes quick business of the person who thinks she is too sophisticated or too savvy or too smart to be fooled by TV, the person who says, "I know the difference between reality and TV." Mander says that we're not discussing facts here, we're talking about images. Your mind may be able to tell fact from fiction, but it treats all images the same.
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