Just a few days ago, my friend Susie donated one of her kidneys to her long-time friend's husband, Ron. Besides some severe pain caused by the pumping of gas into her system, Susie is fine. Ron, as I just heard from Susie's mom, is looking the best he's looked in 10 years. He now has some color, and his lab markers are normal. The transplant seems to have been a big success.
After I hung up the phone, I began weeping. Not just a little wet in the eyes but sobbing. I can't really say what these tears from outer space are about. Vicarious joy that someone I've never met has been given the gift of life? Is it because no one has said to me, "Heidi, once you get on that transplant list, I want to be tested as a possible donor"? Or is it that, the longer this process of getting on the waitlist drags on, the more I feel I'll be tied to a dialysis machine for the rest of my days?
I am happy for Ron, no question. It's the same sort of happiness I have often felt when I've seen people in love. I think that any love in the world makes love for others all the more possible. Though I may not be with someone, here in front of me is evidence that love and romance and passion are possible. Possible for me. So it is the same with Ron. Someone stepped up for him, so it is possible that someone will step up for me. He received a kidney, so it is possible that I may receive a kidney too.
But it is exhausting sometimes to remain positive, day after day, decade after decade, that healing and good health are coming my way. And it's a lot of energy to maintain the archetype of the happy person with health challenges.
Saturday, June 13, 2009
Wednesday, June 10, 2009
Still Waiting
I sent an email to Fe, the Kaiser transplant coordinator for the Bellflower facility, asking when the UCLA transplant team would make its decision. I noted that Dr. Van Herle, the UCLA cardiologist, had told Dr. Phan, my Kaiser cardiologist, a week ago that she was recommending that I be waitlisted.
Fe wrote back today, saying that Dr. Van Herle has requested the results of my angiogram from November 2006 and the results of the stress test I took last month. Fe said she requested the former two weeks from the Sunset facility, where I had the stent surgery, but so far Sunset has not responded.
This is so typical of the mixed messages from Kaiser. Dr. Phan told me Dr. Van Herle said "yes," but Fe tells me Dr. Van Herle is waiting for additional information before she can make a decision. Which is it?
So in short, I'm facing more waiting: Sunset sending the records to Fe, Fe sending the records to Van Herle, Van Herle reviewing the records and making a recommendation, the transplant team making its recommendation, and UCLA sending out a letter of affirmation or denial. I had thought I'd get an answer this week, but it doesn't look like that's going to happen.
Fe wrote back today, saying that Dr. Van Herle has requested the results of my angiogram from November 2006 and the results of the stress test I took last month. Fe said she requested the former two weeks from the Sunset facility, where I had the stent surgery, but so far Sunset has not responded.
This is so typical of the mixed messages from Kaiser. Dr. Phan told me Dr. Van Herle said "yes," but Fe tells me Dr. Van Herle is waiting for additional information before she can make a decision. Which is it?
So in short, I'm facing more waiting: Sunset sending the records to Fe, Fe sending the records to Van Herle, Van Herle reviewing the records and making a recommendation, the transplant team making its recommendation, and UCLA sending out a letter of affirmation or denial. I had thought I'd get an answer this week, but it doesn't look like that's going to happen.
Thursday, June 04, 2009
Another Move, A New Friend
I will be moving to a new abode as of the middle of this month. I found the place on one of my walks. It's the back half of a craftsman-style house about 10 blocks from where I'm currently living. It has more floor space than this place, though it too is a one-bedroom. It has a sunny extra room, though, that could be used as a dining room or an office. It has a shared back yard and an assigned parking place. That is one of three things I have long wanted in a residence: off-street parking, some dirt for a garden, and a place that will accept a dog.
That brings me to the big selling point: It's pet-friendly! As soon as I move in, I'm going to start looking for the dog of my dreams. I want the kind of dog I had as a child, one that will look at me with its big, loving eyes and pound its tail and wiggle its butt with joy when I come home. A dog that is smart and can be trained to sit up and shake its paw. A dog that is not high-strung, that only barks when it feels it needs to protect me. Not a sissy lap dog. A real dog. A mutt. Ideally, with some golden retriever in its genes to give it that beautiful honey coloring.
I told Aaron that I was much more excited about looking for a dog than looking for a man. He responded, "There are a lot more choices." A lot more good choices! About once every three or four years, I meet a man about whom I think, "Oh, hot damn! I could really go for him!" But I meet three or four dogs a week about whom I think, "Oh, what a cutie! I could sure live with you!"
That brings me to the big selling point: It's pet-friendly! As soon as I move in, I'm going to start looking for the dog of my dreams. I want the kind of dog I had as a child, one that will look at me with its big, loving eyes and pound its tail and wiggle its butt with joy when I come home. A dog that is smart and can be trained to sit up and shake its paw. A dog that is not high-strung, that only barks when it feels it needs to protect me. Not a sissy lap dog. A real dog. A mutt. Ideally, with some golden retriever in its genes to give it that beautiful honey coloring.
I told Aaron that I was much more excited about looking for a dog than looking for a man. He responded, "There are a lot more choices." A lot more good choices! About once every three or four years, I meet a man about whom I think, "Oh, hot damn! I could really go for him!" But I meet three or four dogs a week about whom I think, "Oh, what a cutie! I could sure live with you!"
UCLA Cardiologist Gives Her OK
I received some good news this week: The UCLA cardiologist is recommending to the transplant team that I be placed on the wait list. Since I had been told by the transplant surgeon and the head of the kidney-pancreas transplant team that they needed to hear from the cardiologist before making a decision, I am under the impression that they will go with her recommendation. Let's hope so.
In fact, just from a collegiality standpoint, I would think that the transplant team would have to go with her recommendation. If they said they needed to hear her opinion and then they disregard her opinion, that's a bit of a slap in her professional face. They wouldn't appreciate it if another doctor did the same to them. So I have a good feeling about this.
I had written several emails to my Kaiser nephrologist and cardiologist this week about the nuclear scan of my heart that was taken last week. In part, I asked that they ask their UCLA colleagues to stop "looking at the damn lab results and start looking at the person who is standing in front of them." I said that it is like looking at a student's failing grades and, on that basis, labeling him stupid, when all the while he's writing Nobel Prize-winning novels and findig a cure for cancer. This is analogous to my situation: The lab results paint a discouraging picture, but I feel great. I wrote that on Monday evening I walked two hours without stopping, without chest pain, without shortness of breath, whereas my walking companion, who is supposedly without health problems, was near-panting. I feel that I am in better shape than most of the women my age who don't have kidney disease. Certainly I am a better, healthier transplant candidate than someone who is 50+ pounds overweight and doesn't exercise!
In fact, just from a collegiality standpoint, I would think that the transplant team would have to go with her recommendation. If they said they needed to hear her opinion and then they disregard her opinion, that's a bit of a slap in her professional face. They wouldn't appreciate it if another doctor did the same to them. So I have a good feeling about this.
I had written several emails to my Kaiser nephrologist and cardiologist this week about the nuclear scan of my heart that was taken last week. In part, I asked that they ask their UCLA colleagues to stop "looking at the damn lab results and start looking at the person who is standing in front of them." I said that it is like looking at a student's failing grades and, on that basis, labeling him stupid, when all the while he's writing Nobel Prize-winning novels and findig a cure for cancer. This is analogous to my situation: The lab results paint a discouraging picture, but I feel great. I wrote that on Monday evening I walked two hours without stopping, without chest pain, without shortness of breath, whereas my walking companion, who is supposedly without health problems, was near-panting. I feel that I am in better shape than most of the women my age who don't have kidney disease. Certainly I am a better, healthier transplant candidate than someone who is 50+ pounds overweight and doesn't exercise!
Tuesday, May 26, 2009
Three Blind Dates
Last month marked 19 years ago that I left my husband. In those almost-two decades, I have often asked friends, acquaintances, business associates, and students to set me up with someone. In all that time, I have only had three blind dates.
One had just gotten out of rehab. We met at a coffeehouse, but he didn't have money for coffee. Besides, as coffee is a drug, he wasn't going down that path. A second one lived in someone's garage. He had not eaten for a few days, so I made him a tunafish sandwich. The third was on house arrest, though it took a half-hour phone conversation to figure that out. He kept suggesting that I come over to his place for a first date. I kept saying that, that was not my policy--to meet men at their apartments on a first date. At first he said he was on call and could not leave his house. Finally, he admitted that his bracelet would alert authorities if he did. I turned down this third gentleman, so in truth I've only had two blind dates in 19 years.
Why is this? So many people I've met over the years have told me of how their friends or co-workers introduced them to their future boyfriend, girlfriend, lover, or spouse. Don't my friends know any interesting, eligible men? Do they not believe me when I tell them I'd sure appreciate a recommendation?
And perhaps a more interesting question: Why did they send me these men? Do I look like a woman who wants a "project"? Do I present myself as a woman who wants to carry a man? That's sure not the way I see myself.
Or were they just having a good joke at my expense? I mean, in retrospect, there is certainly a laugh or two to be had here, but then perhaps they could have followed up with a viable option.
It's a mystery.
One had just gotten out of rehab. We met at a coffeehouse, but he didn't have money for coffee. Besides, as coffee is a drug, he wasn't going down that path. A second one lived in someone's garage. He had not eaten for a few days, so I made him a tunafish sandwich. The third was on house arrest, though it took a half-hour phone conversation to figure that out. He kept suggesting that I come over to his place for a first date. I kept saying that, that was not my policy--to meet men at their apartments on a first date. At first he said he was on call and could not leave his house. Finally, he admitted that his bracelet would alert authorities if he did. I turned down this third gentleman, so in truth I've only had two blind dates in 19 years.
Why is this? So many people I've met over the years have told me of how their friends or co-workers introduced them to their future boyfriend, girlfriend, lover, or spouse. Don't my friends know any interesting, eligible men? Do they not believe me when I tell them I'd sure appreciate a recommendation?
And perhaps a more interesting question: Why did they send me these men? Do I look like a woman who wants a "project"? Do I present myself as a woman who wants to carry a man? That's sure not the way I see myself.
Or were they just having a good joke at my expense? I mean, in retrospect, there is certainly a laugh or two to be had here, but then perhaps they could have followed up with a viable option.
It's a mystery.
Friday, May 22, 2009
Chick Cabin Hug
This photo says chick cabin like no other (see May 17 post for more on chick cabin). Here I was among these wonderful women. What better place to break down and cry. And here are Lisa, Loriann, and Kim, giving me all kinds of love. Wow!
Wednesday, May 20, 2009
Goodbye, Cal State
On Monday the journalism department gave me a send-off party. After years of slights and shoddy treatment, the department rallied. Interesting how that is, isn't it! I guess people figure, She's out the door. Why not be nice?
And the send-off was very sweet. About 15 people stopped by. They were all very kind. They gave me a $100 Visa card, orchids, balloons, and a card. Four students also gave me heartfelt cards.
Here is the thank-you email I sent out just moments ago:
Thanks so much to everyone who attended my send-off party. Thanks, too, to all who contributed to my day at the spa--what I plan to do with my Visa card. And the orchids are lovely, still looking good atop my kitchen table. As always, thanks to Teri and Carolyn, the force behind so much kindness that issues from the department.
When I first learned that something was being planned for me, I felt my eyes get a little watery. You can't imagine how challenging the last decade has been, and especially the past six months. Acts of kindness--often from unexpected quarters--have done so much to boost my spirits--a neighbor helping me lift some boxes, my son's friends stopping by to say hello, a smile from a passing stranger.
Perhaps you already know this, and practice this on a daily basis, but perhaps, too, it bears iteration: Every day each one of you touches the lives of many. You choose whether your interactions will be ego- or other-centered. You chose whether you will treat each individual as a valuable human being, someone richly deserving of respect and consideration, or whether you will only treat others as vehicles to further your own goals. Ironically, it is when you choose the former path that beautiful things begin to happen, not only for the person to whom you show kindness, but to your own self as well.
The ancient Greeks spoke of a golden light that dwells within every soul and how it is each individual's moral duty to allow that light to shine forth to the world. If one has artistic talent, for example, he would be morally bankrupt if he instead became an accountant--for the money--and never picked up a paintbrush again. And someone who has a knack for numbers would be equally culpible should he waste years engaged in so-so art projects when he could be assisting hundreds of people with their financial woes. So, too, the best teachers have a golden light that they bring forth to their students; they reveal their excellence to the world through their work, and their students see this in their passion for their subject and their concern for their students' advancement and well being.
There is a golden light of kindness as well, a deep knowledge that everyone is a valuable human being deserving of the very best that life can give. I felt this golden light at my send-off party. For this I am grateful.
May this find you in good health and in good spirits,
Heidi
Sunday, May 17, 2009
Earthquake--And I'm Alone and Hooked up to a Dialysis Machine!
A 5.0 earthquake just rattled my apartment. I could hear things falling and breaking in the kitchen and living room, but as I'm on a 12-foot leash, I can't investigate. In years gone by when a temblor struck, I would brace myself in a doorless door frame or scoot under my bed. But the only doors within 12 feet of the dialysis machine have doors, and the underside of my bed is loaded to the hilt with dialysis supplies.
So all I could do was sit still. When there's nothing that can be done, why get upset? I realize I'm in an extremely vulnerable situation, being hooked up for 10 hours every night, when it comes to quakes, fires, and any criminal who might enter my living quarters.
This evening's experience reminded me of a bicycle accident I had over a decade ago. I was making a left turn, and a car came racing around a corner into my path. The thought went through my head, "I'm going to hit that car." This acceptance brought with it a great sense of peace and surrender. I completely relaxed, which doubtless saved my life.
I felt that same kind of acceptance just now. In such a situation, I know I have only two not-such-great options--remain hooked up and vulnerable to injury or quickly disconnect in a dusty environment that would most likely cause a site infection or internal contamination. Since nothing big was falling, I simply took the experience calmly and waited for it to pass.
So all I could do was sit still. When there's nothing that can be done, why get upset? I realize I'm in an extremely vulnerable situation, being hooked up for 10 hours every night, when it comes to quakes, fires, and any criminal who might enter my living quarters.
This evening's experience reminded me of a bicycle accident I had over a decade ago. I was making a left turn, and a car came racing around a corner into my path. The thought went through my head, "I'm going to hit that car." This acceptance brought with it a great sense of peace and surrender. I completely relaxed, which doubtless saved my life.
I felt that same kind of acceptance just now. In such a situation, I know I have only two not-such-great options--remain hooked up and vulnerable to injury or quickly disconnect in a dusty environment that would most likely cause a site infection or internal contamination. Since nothing big was falling, I simply took the experience calmly and waited for it to pass.
11th Annual Chick Cabin Weekend
Last weekend, as every third weekend of May for the past 11 years, was chick cabin weekend. An annual event in Green Valley Lake, near Big Bear, at the cabin owned by Heather's mom. Mostly it's women who knew Heather in high school or even since early elementary school. But thrown into the mix are a few gals like me who know Heather via different routes. There is a core group--Heather, the two Lisas, Dre, Kim, Debbie, and Diane. This year, Lori Ann, a firefighter in Albequeque; Kristin, whom I met as I was leaving; and Susie, who has been so encouraging in regards to me being kidney-wait listed, were also present.
Though I rarely see or talk with these gals any time except chick cabin, I feel so close to them. They are the only group of female friends I have ever known. In fact, I really haven't had too many female friends over the years, so the CCW gals are that much more special.
Last year--the big 10th annual extravaganza--I couldn't go. I was attempting a 30-day, all-liquid fast and cleanse to bring my body into health and avert dialysis. That didn't last, as I gained seven pounds of water weight in one day and became ill. Besides, my heart was taxed at sea level. I was concerned I would be unable to breathe at the cabin's 5,000-foot elevation.
So attending this year was a big deal for me. I left Long Beach around 2 on Friday afternoon. This was to be my first night away from home since beginning dialysis on Feb. 2. This was also my first experience with CAPD (continuous ambulatory peritoneal dialysis), in which I performed dialysis every six to eight hours. This didn't allow for much sleep, plus the dialysis bags were cold, so there was a bit of cramping during the fill. But it all went fine nonetheless.
About eight years ago, the Lisa who had been a professional dancer was pregnant and asked Heather and me to photograph her nude on the boulders that are scattered about this forested area. That was quite lovely, her breasts and big belly echoed in the roundness of the rocks. This began a tradition of nude photography. Some years it's only Lisa and me who photograph each other. Other years Heather joins in and perhaps Rachel, if she's around.
This year it was important for me to be photographed. Following the placement of the catheter, it took weeks for me to feel comfortable about looking in the mirror. I felt that stipping down would help my body image.
Lisa had brought scarves and a loose shirt for partial covering, but in some photos I opted to take everything off, everything, of course, but the tubing, dressing, transfer set, PD belt, and insulin pump! I guess it's impossible for me to get completely nude!
These photo sessions are so much fun! I enjoy being the photographer as much as I enjoy being the model. Of course, as Lisa is a dancer, she is adept at using her body to create sculpture-like poses.
Shown here are only a few of the tamest shots, as I'm not interested in having my breasts, my sex, and my behind for all the world to see.
Friday, May 15, 2009
Tomorrow You Will be Executed--Whoops!
Yesterday I received this curt, poorly proofed letter from UCLA Transplant Services:
"The patient was seen in Kidney/Pancreas Evaluation Clinic on 4/16/09. Patient current status is: Inactive. The patient is not a candidate at this time and will not be placed on the UNOS Wait List. Patient was seen as a consult only. Patient was seen as a consultation only. The patient is not a candidate for kidney & pancreas transplantation at this time due to inoperative, 3-vessel coronary artery disease. Pleasae see the dictation for detail. Other: Patient was hypertensive at the time of evaluation(170/100 bpm). Please follow-up with your physician."
I immediately got on the phone. I wasn't crying; I was angry. I didn't raise my voice, and I didn't use foul or offensive language. I was firm and direct, not accepting any PC, bullshit answers.
I had seen the UCLA cardiologist last Friday, and she had ordered another test, which I have scheduled for May 26 and 27. "I have a new heart," I told her, as I have told at least five other doctors. "Please don't judge me on the basis of an angiogram done years before I started dialysis." I also asked her not to judge me on the basis of my clinical blood pressure, as my twice-daily, at-home readings are in the neighborhood of 100/60. She said that patients are often nervous about these visits, and consequently, their BP shoots up. Nervous? My God, who wouldn't be! These people are deciding whether I'll live or die!
First I talked with the in-take nurse. How could UCLA send out a letter like this when I had been told by the cardiologist that her decision was dependent upon the results of a test I have not yet taken? She couldn't answer this question and went off to find someone who could. This meant quite a long time on hold. When she got back, I asked to speak with the cardiologist. Of course, one can rarely speak directly to a doctor! Oh, my God, we couldn't have patients talking directly to doctors outside of office visits! The whole system of elitism might come tumbling down. The nurse said the head nurse, Melissa Forest, would review my records and call me.
Melissa said the letter had been sent out prematurely. It had been based on the transplant surgeon and the director of the transplant program's recommendation--even though these two had referred me to the cardiologist. They had told me they would base their decision on the cardiologist's recommendation. Why, I demanded, had this letter been sent out? "Is this part of the psychological testing?" I asked. "Do you mess with patients and see how they handle it?" That question shocked her, and she didn't answer it. I persisted: "Because if messing with patients is part of the workup, then I've passed because I'm not crying and I'm not taking this sitting down."
I explained how I was feeling: "I'm on Death Row. I get a letter saying that my execution is tomorrow. 'But my lawyer has my case in appeal,' I say. 'How can you go ahead with the execution when my case is in appeal?'" She said she understood. I countered with: "So you've been a transplant patient?" She didn't answer. I asked again. "No, I haven't," she said. "Well, then you don't understand," I said.
I said that I am just starting out with UCLA, and if this lack of attention to detail is present at the onset, I'm concerned that such carelessness may pervade the entire process. I am concerned about the carelessness that seems to have gone into sending out this letter, without concern for accuracy or the patient's feelings. I said I worked as an editor and alluded to the carelessness with the language of the letter. Though I didn't specifically cite the errors, here they are--"pleasae," "follow-up" (no hyphen when used as a verb), two cases of redundancy, and the switch from third to second person. "If there is carelessness in the little things, it makes me wonder if there will be carelessness with the big things." I repeated this to help it sink in. Yes, the big things--making sure the organ is a good match and making sure the surgery is successful.
Melissa apologized, but I wanted to know what she was going to do to correct this problem. I asked if this matter would be taken up at a staff meeting. Perhaps people should think before sending out such letters. She assured me she would bring it up. Who knows if that will actually happen.
Now, I must attend to some important business--getting a match and burning the letter.
"The patient was seen in Kidney/Pancreas Evaluation Clinic on 4/16/09. Patient current status is: Inactive. The patient is not a candidate at this time and will not be placed on the UNOS Wait List. Patient was seen as a consult only. Patient was seen as a consultation only. The patient is not a candidate for kidney & pancreas transplantation at this time due to inoperative, 3-vessel coronary artery disease. Pleasae see the dictation for detail. Other: Patient was hypertensive at the time of evaluation(170/100 bpm). Please follow-up with your physician."
I immediately got on the phone. I wasn't crying; I was angry. I didn't raise my voice, and I didn't use foul or offensive language. I was firm and direct, not accepting any PC, bullshit answers.
I had seen the UCLA cardiologist last Friday, and she had ordered another test, which I have scheduled for May 26 and 27. "I have a new heart," I told her, as I have told at least five other doctors. "Please don't judge me on the basis of an angiogram done years before I started dialysis." I also asked her not to judge me on the basis of my clinical blood pressure, as my twice-daily, at-home readings are in the neighborhood of 100/60. She said that patients are often nervous about these visits, and consequently, their BP shoots up. Nervous? My God, who wouldn't be! These people are deciding whether I'll live or die!
First I talked with the in-take nurse. How could UCLA send out a letter like this when I had been told by the cardiologist that her decision was dependent upon the results of a test I have not yet taken? She couldn't answer this question and went off to find someone who could. This meant quite a long time on hold. When she got back, I asked to speak with the cardiologist. Of course, one can rarely speak directly to a doctor! Oh, my God, we couldn't have patients talking directly to doctors outside of office visits! The whole system of elitism might come tumbling down. The nurse said the head nurse, Melissa Forest, would review my records and call me.
Melissa said the letter had been sent out prematurely. It had been based on the transplant surgeon and the director of the transplant program's recommendation--even though these two had referred me to the cardiologist. They had told me they would base their decision on the cardiologist's recommendation. Why, I demanded, had this letter been sent out? "Is this part of the psychological testing?" I asked. "Do you mess with patients and see how they handle it?" That question shocked her, and she didn't answer it. I persisted: "Because if messing with patients is part of the workup, then I've passed because I'm not crying and I'm not taking this sitting down."
I explained how I was feeling: "I'm on Death Row. I get a letter saying that my execution is tomorrow. 'But my lawyer has my case in appeal,' I say. 'How can you go ahead with the execution when my case is in appeal?'" She said she understood. I countered with: "So you've been a transplant patient?" She didn't answer. I asked again. "No, I haven't," she said. "Well, then you don't understand," I said.
I said that I am just starting out with UCLA, and if this lack of attention to detail is present at the onset, I'm concerned that such carelessness may pervade the entire process. I am concerned about the carelessness that seems to have gone into sending out this letter, without concern for accuracy or the patient's feelings. I said I worked as an editor and alluded to the carelessness with the language of the letter. Though I didn't specifically cite the errors, here they are--"pleasae," "follow-up" (no hyphen when used as a verb), two cases of redundancy, and the switch from third to second person. "If there is carelessness in the little things, it makes me wonder if there will be carelessness with the big things." I repeated this to help it sink in. Yes, the big things--making sure the organ is a good match and making sure the surgery is successful.
Melissa apologized, but I wanted to know what she was going to do to correct this problem. I asked if this matter would be taken up at a staff meeting. Perhaps people should think before sending out such letters. She assured me she would bring it up. Who knows if that will actually happen.
Now, I must attend to some important business--getting a match and burning the letter.
Sunday, May 10, 2009
Yet Another Step in the Kidney Appeals Process
I met with the UCLA cardiologist on Friday. She is charged with determining my suitability as a transplant candidate. I was hoping and praying for a decision, but that has now been delayed. She wants me to undergo another stress test to assess my heart function. This is probably the best news I could have expected at this point, as she did not deny my request and she did not insist on an angiogram, which uses dye that is harmful to the kidneys. So it's yet another step in this long, involved, emotionally exhausting process.
I greatly appreciate all those who have been praying on my behalf, and I ask that you continue to do so. I know that prayer is very powerful, and it touches me deeply to know that so many people have my best interests in mind and in heart.
I greatly appreciate all those who have been praying on my behalf, and I ask that you continue to do so. I know that prayer is very powerful, and it touches me deeply to know that so many people have my best interests in mind and in heart.
Saturday, May 02, 2009
The One Word That Says it All
"Proswayed," a female student in one of my classes wrote. When I pointed this mistake out to her, she was befuddled. "It's spelled 'persuade,'" I said. "Oh," she replied.
This one word sums up much of what is wrong with education these days: carelessness, inattention, lack of pride in a job well done, unconcern about one's own language, rushing to finish one project in order to hurry through another.
The flip side is that my fellow educators seem unconcerned about the deterioration of standards. Over the years, I have seen such a steady decline, and this has been disheartening for me. I wonder how sloppy we will eventually become, how much further into the mud we will sink.
And that's one reason why I am glad to be leaving Cal State. Professors who don't care and students who care even less. I will certainly not miss either one.
This one word sums up much of what is wrong with education these days: carelessness, inattention, lack of pride in a job well done, unconcern about one's own language, rushing to finish one project in order to hurry through another.
The flip side is that my fellow educators seem unconcerned about the deterioration of standards. Over the years, I have seen such a steady decline, and this has been disheartening for me. I wonder how sloppy we will eventually become, how much further into the mud we will sink.
And that's one reason why I am glad to be leaving Cal State. Professors who don't care and students who care even less. I will certainly not miss either one.
The Mikes in my Life
A few days ago, it hit me that Mikes have figured prominently in my life. Mike Riek was the love of my life. Mike Cincola was my favorite massage client. (We had such a smashing repoire that his wife was jealous, and Mike abruptly ended our weekly massages with a $700 tip.) Mike Phan is my compassionate cardiologist, and Mike Butman is my dear nephrologist. (Perhaps doctors don't mean that much to you, dear reader, but for someone in my position, having doctors I trust and can relate to means the world.) And most importantly, Archangel Michael.
When this notion of the noteworthy Mikes entered my head, I wondered if this has been the archangel's way of telling me he's watching over me. Sending me Mikes to take care of me on Earth. Certainly Mike Cincola took care of me financially, and of course it did me a whole bunch of good to see a man once a week who I really liked and who really liked to see me. And I've written previously about how Drs. Phan and Butman are rooting for me, doing their damnest to get me on the transplant list, taking care of me physically and medically, as well as boosting my spirits.
But what about Mike Riek? In so many ways, Mike was a huge detriment. Psychologically and mentally abusive, neglectful, self-centered, self-absorbed, filled with rage, self-deprecating, self-destructive. But he certainly took care of me sexually for four years. So, sure, Mike too could have functioned as the archangel's emissary.
And now one more Mike has been added to the mix--Mike Leon, Aaron's artist friend whom I've commissioned to render the archangel as I saw him on that April day in 2000. Mike said he's long been interested in Archangel Michael. I hope to sit down with Mike soon and work on a sketch of that experience. Something like an artist who sketches a suspect from a witness's memory. A little more muscle. Hair a bit more tussled. Blinding light of his minions to either side and to infinity in back of him. I can see him so clearly, but I want so much to have the likeness rendered so that I can gaze upon it many times a day.
When this notion of the noteworthy Mikes entered my head, I wondered if this has been the archangel's way of telling me he's watching over me. Sending me Mikes to take care of me on Earth. Certainly Mike Cincola took care of me financially, and of course it did me a whole bunch of good to see a man once a week who I really liked and who really liked to see me. And I've written previously about how Drs. Phan and Butman are rooting for me, doing their damnest to get me on the transplant list, taking care of me physically and medically, as well as boosting my spirits.
But what about Mike Riek? In so many ways, Mike was a huge detriment. Psychologically and mentally abusive, neglectful, self-centered, self-absorbed, filled with rage, self-deprecating, self-destructive. But he certainly took care of me sexually for four years. So, sure, Mike too could have functioned as the archangel's emissary.
And now one more Mike has been added to the mix--Mike Leon, Aaron's artist friend whom I've commissioned to render the archangel as I saw him on that April day in 2000. Mike said he's long been interested in Archangel Michael. I hope to sit down with Mike soon and work on a sketch of that experience. Something like an artist who sketches a suspect from a witness's memory. A little more muscle. Hair a bit more tussled. Blinding light of his minions to either side and to infinity in back of him. I can see him so clearly, but I want so much to have the likeness rendered so that I can gaze upon it many times a day.
Good Energy for May 8
Round three in the transplant fight: a May 8 meeting with a UCLA cardiologist. The director of the program and the surgeon, with whom I met on April 16, will bow to her decision regarding my suitability as a transplant candidate.
The possible outcomes of this meeting:
* overturning the director and surgeon's decision to keep me off the pancreas list
* giving me her blessing for placement on the kidney-only list
* requiring me to undergo more tests before she can make a decision
* refusing to put me on the kidney list
The first is highly unlikely. The second is also a real long shot, according to Dr. Butman, who told me yesterday that patients who had no history of heart disease are often required to undergo an angiogram, so someone like me surely will have to do so.
The last outcome is the one that haunts me. I try to stay focused on 2 and 3, but 4 keeps creeping in.
If she hits me with 4, I will offer her this analogy: The doctors' hesitancy to put me on the list because of an angiogram done in 2006 seems analogous to a 35-year-old who applies for a job and is told he is not a candidate because he was arrested for shoplifting when he was in junior high. He tells HR that he's radically changed since then and is now an upstanding citizen--and he has church membership and community-service awards to prove it.
This seems to be the situation I'm facing. Why are the UCLA docs focused on my "arrest record" rather than on the miraculous transformation my heart has made since the onset of dialysis? (For the past month, I've been lifting weights and walking two to three miles four days a week.) Am I missing something? Are there flaws in my analogy? What more can be done to get them to see the "upstanding citizen" and not the "troubled youth"?
Literary devices worked wonders for Socrates and Jesus. Maybe this analogy will do the trick for me.
The possible outcomes of this meeting:
* overturning the director and surgeon's decision to keep me off the pancreas list
* giving me her blessing for placement on the kidney-only list
* requiring me to undergo more tests before she can make a decision
* refusing to put me on the kidney list
The first is highly unlikely. The second is also a real long shot, according to Dr. Butman, who told me yesterday that patients who had no history of heart disease are often required to undergo an angiogram, so someone like me surely will have to do so.
The last outcome is the one that haunts me. I try to stay focused on 2 and 3, but 4 keeps creeping in.
If she hits me with 4, I will offer her this analogy: The doctors' hesitancy to put me on the list because of an angiogram done in 2006 seems analogous to a 35-year-old who applies for a job and is told he is not a candidate because he was arrested for shoplifting when he was in junior high. He tells HR that he's radically changed since then and is now an upstanding citizen--and he has church membership and community-service awards to prove it.
This seems to be the situation I'm facing. Why are the UCLA docs focused on my "arrest record" rather than on the miraculous transformation my heart has made since the onset of dialysis? (For the past month, I've been lifting weights and walking two to three miles four days a week.) Am I missing something? Are there flaws in my analogy? What more can be done to get them to see the "upstanding citizen" and not the "troubled youth"?
Literary devices worked wonders for Socrates and Jesus. Maybe this analogy will do the trick for me.
Monday, April 27, 2009
Culling the Herd?
I've been reading about the so-called "swine" flu that has hit Mexico, the U.S. and now Spain, New Zealand, and a few more places. As reported in the press, the responsible virus has components from three continents and from three types of animals--human, bird, and pig. To my thinking, it seems highly unlikely that something like this would develop on its own, without the assistance of government and pharmaceutical-company labs.
Now before you stop reading, consider that not too long ago, Baxter International had shipped out flu vaccine containing avain-flu virus. A simple matter of sloppy work as is often seen in food processing when components used in one food product inadvertently contaminate a batch of some other food product? That might be a plausible explanation, if only that a pharmaceutical company is not supposed to be in the business of manufacturing pandemics.
The Baxter story was not covered in this country, though it was widely reported in Europe and Canada. Once again, the U.S. is in a news bubble.
And guess what, folks--Baxter is working on a vaccine for this latest "swine" flu. Oh, great, the same company that tried to start a pandemic less than a year ago by manufacturing tainted vaccine now has the contract to make a second go of it.
Though this story is disconcerting for anyone, it is especially so for me, as Baxter is also the manufacturer of my dialysis supplies. Everything from the solution to the tubing. What I've wondered since discovering all this: Is Baxter "culling the herd" by adding something toxic to the dialysis solution, something that wouldn't kill a patient outright--she needs to be kept alive for some time to generate income for the pharmaceutical giant--but would slowly work against the body over time?
This whole notion of culling the herd has been around for quite some time. My first exposure to it was about 20 years ago. On one level, it makes sense. The world has way too many people, and a whole lot more are coming. Our resources are finite; no new timber, oil, or land to grow crops are entering our world from some other planet. What we've got here and now is all there is. The only solution is to cull the herd. Of course, the more benign approach would be to prevent births in the first place, take care of the problem on the front end. This could be done through tax disincentives for having more than one or two children or incentives for voluntary sterilization. I mean, seriously, why are the tax laws still designed to reward big families? That might have been a fine idea 150 years ago when this was a young country and lots of kids were needed to do farm chores. But that's not the nation we are currently living in.
The really spooky thing about Baxter is that, every time I would call the company to place an order or check on the status of an order or get tech support, this awful, sappy music would play while I was on hold. Always the same annoying song. I complained several times, but nothing happened. Then I started telling the rep that if I were shooting a horror film about forced euthenesia, I would use this song as background music. "It's music to kill by" was the message I left on a supervisor's answer machine. That must have struck a chord with Baxter because about a week ago--before the outbreak in Mexico--I was informed the company is changing the music.
Now before you stop reading, consider that not too long ago, Baxter International had shipped out flu vaccine containing avain-flu virus. A simple matter of sloppy work as is often seen in food processing when components used in one food product inadvertently contaminate a batch of some other food product? That might be a plausible explanation, if only that a pharmaceutical company is not supposed to be in the business of manufacturing pandemics.
The Baxter story was not covered in this country, though it was widely reported in Europe and Canada. Once again, the U.S. is in a news bubble.
And guess what, folks--Baxter is working on a vaccine for this latest "swine" flu. Oh, great, the same company that tried to start a pandemic less than a year ago by manufacturing tainted vaccine now has the contract to make a second go of it.
Though this story is disconcerting for anyone, it is especially so for me, as Baxter is also the manufacturer of my dialysis supplies. Everything from the solution to the tubing. What I've wondered since discovering all this: Is Baxter "culling the herd" by adding something toxic to the dialysis solution, something that wouldn't kill a patient outright--she needs to be kept alive for some time to generate income for the pharmaceutical giant--but would slowly work against the body over time?
This whole notion of culling the herd has been around for quite some time. My first exposure to it was about 20 years ago. On one level, it makes sense. The world has way too many people, and a whole lot more are coming. Our resources are finite; no new timber, oil, or land to grow crops are entering our world from some other planet. What we've got here and now is all there is. The only solution is to cull the herd. Of course, the more benign approach would be to prevent births in the first place, take care of the problem on the front end. This could be done through tax disincentives for having more than one or two children or incentives for voluntary sterilization. I mean, seriously, why are the tax laws still designed to reward big families? That might have been a fine idea 150 years ago when this was a young country and lots of kids were needed to do farm chores. But that's not the nation we are currently living in.
The really spooky thing about Baxter is that, every time I would call the company to place an order or check on the status of an order or get tech support, this awful, sappy music would play while I was on hold. Always the same annoying song. I complained several times, but nothing happened. Then I started telling the rep that if I were shooting a horror film about forced euthenesia, I would use this song as background music. "It's music to kill by" was the message I left on a supervisor's answer machine. That must have struck a chord with Baxter because about a week ago--before the outbreak in Mexico--I was informed the company is changing the music.
Sunday, April 19, 2009
Wow! Some of These People Look Like Stoners
Last night I attended my first ever laser light show. It is rare when an experience exceeds one's expectations. This was certainly one of those times.
This was Aaron's third Pink Floyd Laser Light Show, but even he said that this year's was so much better than anything he'd ever experienced previously.
Even before we entered the packed auditorium, I was giggling as if I were high. For the record, I was not, though I had been in close proximity to someone who had smoked. (No names will be divulged.) Aaron said that was great that all I needed to do was to watch someone else get high in order to get me going. Yes, it doesn't take much.
A lot of long hairs and spacey chicks. "Wow!" I remarked at my fellow audience members. "Some of these people look like stoners!" Aaron agreed that if you were looking for stoners, this would be the venue at which to find them.
I was awestruck throughout the two-hour performance. With the special glasses, light beams were pulsating, throbbing, undulating, and ricocheting across the stage and over our heads. Images from the classic science fiction film "Metropolis" and from "The Wall." One segment at the beginning of the production featured a black-and-white film of a man in a bed with wheels that just started moving of its own accord, down a hospital hallway and onto a runway. The man looked like a young version of Mike. So interesting because he died three years ago on April 16.
Watching all these colored images and light beams and even tunnels of light surround me, I was in an altered state. I was so spacey, but in a very good sense. I wondered if this is some of what I was oblivious to as a young adult, as I missed out on illicit drug use, rock concerts, and mindless sex when they were easy to come by and with few consequences. My youth was spent on other things: listening to "The Blue Danube" over and over again, collecting statuary pigs, weaving potholders, hanging out with my dog, writing poetry, hybridizing houseplants, gardening, reading about ancient civilizations and the occult, and entering trance-like states while gazing into the woods or the meadow. In fact, I attended my first ever rock concert about two years ago--The Who at the Long Beach Auditorium.
Saturday, April 18, 2009
Not So Good
Though yesterday I was feeling really good, delighting at the sunshine and the beauty of the world, interacting with those I met with a big smile, last night was a different story.
In the afternoon, I had consulted with a physical therapist. Now that I have so much more energy and so little chest pain and shortness of breath since beginning dialysis, I want to exercise to improve my blood circulation and heart function. But I have been doing as little exercise as possible for the last several years. So how am I to safely begin exercising again? I have been taking walks to the ocean, but wanted some guidance. The very friendly Alex gave me an exercise schedule and showed me how to lift weights. So yesterday evening I did as Alex had instructed and walked 48 minutes non-stop, no stairs. (He told me to build up to stairs.) That felt good, being out in the world, seeing the play of sunlight and shadows on buildings, the flowers, other walkers and their dogs, the wonder of the ocean.
Upon my return home, I had to hook up. This is when my mood changed. Aaron was having dinner with his dad and stayed overnight at his dad's. I was home alone with the dialysis machine, A.K.A. the cycler. As I have for thousands upon thousands of nights, I prepared to sleep alone. It's been almost 10 years since a man shared my bed. Not counting the Canadian who gave me a ride home when my van wasn't working and wouldn't leave my cabin in Nova Scotia until the morning, but I'm not counting him. Sure, there have been a few, a very few intrigues, but these have occurred in the daytime. Actually, I have only literally slept with four men in my entire life--Rod, though he always told me to get over on my side of the bed; Shizeng, though he was only with me a few weeks; Mark, a gay friend I visited for a week while he was a student in Texas, and this was simply sharing a bed, no touching; and Mike. And I was last with Mike in January of 2000.
Life is so difficult alone anyways, but add to this dialysis, and it's sometimes overwhelming. Last night I was overwhelmed. I cried myself to sleep, then woke up around 2, as I have been doing quite frequently since starting dialysis. I went through an hour-or-so round of crying, then dropped off again.
This morning I've been lethargic, still in my pajamas at 10 o'clock. I know this doesn't seem decadent to most people--lazing around on a Saturday--but I'm generally up and at 'em by 7 every day of the week. I took care of all the dialysis protocol--unhooking myself, putting a new iodine-laden mini-cap on my transfer set, draining the dialysis bag that still had some fluid in it, putting the used supplies in the garbage, carrying the collection jug to the toilet and dumping, weighing myself, taking my blood sugar and blood pressure, recording this data. Then I went back to bed and had another cry.
I know that when one is sad, one is supposed to isolate the problem, not allow a single event to spread out into everything wrong that's happened in one's life to date. That is, if your boss criticizes your work, you can be upset about her criticism, but don't start thinking about how your mother never thought you could do anything right and how your ex-husband was always nagging and on and on. Isolate the problem.
The problem is I have difficulty doing that. It all seems so inter-related. Mostly these cries have been about loneliness coupled with dialysis and the realization that now that I am not a kidney-pancreas transplant candidate, my wait time has more than doubled, provided I am approved for a kidney transplant. The wait for the former, as given at Thursday's orientation, is two to three years, since as long as a cadaver is giving up a kidney to a recipient, it makes sense to use the same cadaver's pancreas for the same recipient. But the wait for just a kidney for an O blood type, which I am, is seven to 10 years. (AB, four years; A, five to six; B, six to seven.) I've only been doing dialysis for two and a half months. Just the thought of a decade of doing this makes me numb.
All the kidney support materials speak of not giving up hope. As of now, here are the things I have to look forward to: 1) spending the rest of my life hooked up to the cycler every night and doing a mid-day exchange every day; or 2) waiting seven to 10 years for a cadaver, but probably dying before one becomes available, which means #2 is really #1. It seems as if my only real hope is to be run over by a bus as soon as possible.
But, of course, as always, I will eventually get dressed today and go out into the world smiling. Just as no one has ever seen me at my worst physically, no one sees me an my most anguished.
In the afternoon, I had consulted with a physical therapist. Now that I have so much more energy and so little chest pain and shortness of breath since beginning dialysis, I want to exercise to improve my blood circulation and heart function. But I have been doing as little exercise as possible for the last several years. So how am I to safely begin exercising again? I have been taking walks to the ocean, but wanted some guidance. The very friendly Alex gave me an exercise schedule and showed me how to lift weights. So yesterday evening I did as Alex had instructed and walked 48 minutes non-stop, no stairs. (He told me to build up to stairs.) That felt good, being out in the world, seeing the play of sunlight and shadows on buildings, the flowers, other walkers and their dogs, the wonder of the ocean.
Upon my return home, I had to hook up. This is when my mood changed. Aaron was having dinner with his dad and stayed overnight at his dad's. I was home alone with the dialysis machine, A.K.A. the cycler. As I have for thousands upon thousands of nights, I prepared to sleep alone. It's been almost 10 years since a man shared my bed. Not counting the Canadian who gave me a ride home when my van wasn't working and wouldn't leave my cabin in Nova Scotia until the morning, but I'm not counting him. Sure, there have been a few, a very few intrigues, but these have occurred in the daytime. Actually, I have only literally slept with four men in my entire life--Rod, though he always told me to get over on my side of the bed; Shizeng, though he was only with me a few weeks; Mark, a gay friend I visited for a week while he was a student in Texas, and this was simply sharing a bed, no touching; and Mike. And I was last with Mike in January of 2000.
Life is so difficult alone anyways, but add to this dialysis, and it's sometimes overwhelming. Last night I was overwhelmed. I cried myself to sleep, then woke up around 2, as I have been doing quite frequently since starting dialysis. I went through an hour-or-so round of crying, then dropped off again.
This morning I've been lethargic, still in my pajamas at 10 o'clock. I know this doesn't seem decadent to most people--lazing around on a Saturday--but I'm generally up and at 'em by 7 every day of the week. I took care of all the dialysis protocol--unhooking myself, putting a new iodine-laden mini-cap on my transfer set, draining the dialysis bag that still had some fluid in it, putting the used supplies in the garbage, carrying the collection jug to the toilet and dumping, weighing myself, taking my blood sugar and blood pressure, recording this data. Then I went back to bed and had another cry.
I know that when one is sad, one is supposed to isolate the problem, not allow a single event to spread out into everything wrong that's happened in one's life to date. That is, if your boss criticizes your work, you can be upset about her criticism, but don't start thinking about how your mother never thought you could do anything right and how your ex-husband was always nagging and on and on. Isolate the problem.
The problem is I have difficulty doing that. It all seems so inter-related. Mostly these cries have been about loneliness coupled with dialysis and the realization that now that I am not a kidney-pancreas transplant candidate, my wait time has more than doubled, provided I am approved for a kidney transplant. The wait for the former, as given at Thursday's orientation, is two to three years, since as long as a cadaver is giving up a kidney to a recipient, it makes sense to use the same cadaver's pancreas for the same recipient. But the wait for just a kidney for an O blood type, which I am, is seven to 10 years. (AB, four years; A, five to six; B, six to seven.) I've only been doing dialysis for two and a half months. Just the thought of a decade of doing this makes me numb.
All the kidney support materials speak of not giving up hope. As of now, here are the things I have to look forward to: 1) spending the rest of my life hooked up to the cycler every night and doing a mid-day exchange every day; or 2) waiting seven to 10 years for a cadaver, but probably dying before one becomes available, which means #2 is really #1. It seems as if my only real hope is to be run over by a bus as soon as possible.
But, of course, as always, I will eventually get dressed today and go out into the world smiling. Just as no one has ever seen me at my worst physically, no one sees me an my most anguished.
Friday, April 17, 2009
A Little Cry, Then Back on Track
I had a few little cries yesterday after I got home from UCLA, but I slept well last night and felt better this morning. Dr. Butman gave me a call mid-morning and said that he knows Dr. Wilkinson, the director of the transplant program, and assured me that Wilkinson would not pass the buck, that if he thought I was not a viable candidate, he would have let me know yesterday. That was good to hear. So there still is hope.
After this call, all the sadness and disappointment of yesterday vanished. I was buoyant and happy all day. A temporary stumble, but now I'm back on track.
After this call, all the sadness and disappointment of yesterday vanished. I was buoyant and happy all day. A temporary stumble, but now I'm back on track.
Thursday, April 16, 2009
My Day at UCLA
Today was my big day at UCLA. I arrived early to a small conference room in which prospective transplant patients were already filling out paperwork. Aaron arrived a few minutes before the slide presentation by an RN and a social worker began. They spoke about the program and didn't pull any punches with survival rates, wait times, post-transplant medications and insurance coverage.
Afterward, I was given a room in which to preform my mid-day exchange, while Aaron went to get us some lunch. He had to leave before my clinic visit.
I've been putting so much into this meeting, asking everyone I know to pray. Even the atheists in my life said they'd give it a whirl. I wore a wool suit. I even printed out my resume and brought my best travel clips from glitzy lifestyle magazines in case I had to make a pitch for why I'm valuable. Aaron had teased me: "C'mon, Mom. This is LA. You better bring head shots and a movie script!"
The first person to see me was a kidney-pancreas transplant surgeon, Dr. Gerald Lipshutz. He listened to my breathing and to my heart, took my pulse, peeked at my PD setup and insulin pump. He asked me a bunch of questions about past surgeries, recent hospitalizations, blood transfusions. (It seems as if traces of the donor's blood stays in the recipient's system, thereby complicating blood typing. I had three transfusions in late 2006.) He must have spent 45 minutes with me. He was concerned about my heart history and the findings of an angiogram that was done in November of 2006 when I had the stent placed. I know he wanted to say "no" to the whole thing, but said that besides for my heart, I look great, my BMI is fantastic, I've got a great attitude. I showed him my home records, and he was impressed by my faithful record keeping. Basically, he connected with me, especially when I told him I was a professor of journalism at Cal State and also a writer-editor, and so he didn't want to be the one to nix it. He said he'd consult with the director of the kidney-pancreas transplant program.
Fifteen minutes later, the very kind Dr. Alan Wilkinson walked through the door. An Afrikaner I initially mistook for a German. He warmly told me the story of how he had met his German wife-to-be in South Africa and then proceeded to tell me the very complicated tale of her last name. A handsome older man with a cheery smile and bright eyes. He also voiced concerns about my heart, saying that kidney-pancreas would be too much surgery for me--eight hours rather than the two for kidney only. He, too, spent at least 45 minutes with me, discussing the risks I would face. Besides, 50 is generally the cut-off age for pancreas transplants. I said I could live with that decision, provided I'm put on the kidney transplant wait list.
After some pleasant chatting, the nephrologist agreed to let me see the cardiologist, provided Kaiser approves. I had thought that the Kaiser review board had said that I was to meet with the UCLA cardiologist today. That after s/he made a decision, it would follow suit. Oh well, it was a long day as it was. I can come back.
I'm wondering if these kind souls are merely passing the buck. They went from "no" to everything to "maybe" for kidney on the sheer force of my personality, conversational skills and smiles. But will that carry me to a "yes"?
I really felt deep down inside that I would get the go-ahead. Now, instead it reminds me of my social life. Men are always telling me how fantastic I am, how good-looking. But why don't I have a date for Friday night? It's the same with the UCLA docs. I look great, wonderful compliance, fantastic hemoglobin A1C, beautiful PD home records, but no date!
I'm beginning to understand what death row inmates must go through--waiting, appeals, hope, setbacks, more appeals, more waiting. Well, I haven't yet run out of appeals. There's still hope.
Afterward, I was given a room in which to preform my mid-day exchange, while Aaron went to get us some lunch. He had to leave before my clinic visit.
I've been putting so much into this meeting, asking everyone I know to pray. Even the atheists in my life said they'd give it a whirl. I wore a wool suit. I even printed out my resume and brought my best travel clips from glitzy lifestyle magazines in case I had to make a pitch for why I'm valuable. Aaron had teased me: "C'mon, Mom. This is LA. You better bring head shots and a movie script!"
The first person to see me was a kidney-pancreas transplant surgeon, Dr. Gerald Lipshutz. He listened to my breathing and to my heart, took my pulse, peeked at my PD setup and insulin pump. He asked me a bunch of questions about past surgeries, recent hospitalizations, blood transfusions. (It seems as if traces of the donor's blood stays in the recipient's system, thereby complicating blood typing. I had three transfusions in late 2006.) He must have spent 45 minutes with me. He was concerned about my heart history and the findings of an angiogram that was done in November of 2006 when I had the stent placed. I know he wanted to say "no" to the whole thing, but said that besides for my heart, I look great, my BMI is fantastic, I've got a great attitude. I showed him my home records, and he was impressed by my faithful record keeping. Basically, he connected with me, especially when I told him I was a professor of journalism at Cal State and also a writer-editor, and so he didn't want to be the one to nix it. He said he'd consult with the director of the kidney-pancreas transplant program.
Fifteen minutes later, the very kind Dr. Alan Wilkinson walked through the door. An Afrikaner I initially mistook for a German. He warmly told me the story of how he had met his German wife-to-be in South Africa and then proceeded to tell me the very complicated tale of her last name. A handsome older man with a cheery smile and bright eyes. He also voiced concerns about my heart, saying that kidney-pancreas would be too much surgery for me--eight hours rather than the two for kidney only. He, too, spent at least 45 minutes with me, discussing the risks I would face. Besides, 50 is generally the cut-off age for pancreas transplants. I said I could live with that decision, provided I'm put on the kidney transplant wait list.
After some pleasant chatting, the nephrologist agreed to let me see the cardiologist, provided Kaiser approves. I had thought that the Kaiser review board had said that I was to meet with the UCLA cardiologist today. That after s/he made a decision, it would follow suit. Oh well, it was a long day as it was. I can come back.
I'm wondering if these kind souls are merely passing the buck. They went from "no" to everything to "maybe" for kidney on the sheer force of my personality, conversational skills and smiles. But will that carry me to a "yes"?
I really felt deep down inside that I would get the go-ahead. Now, instead it reminds me of my social life. Men are always telling me how fantastic I am, how good-looking. But why don't I have a date for Friday night? It's the same with the UCLA docs. I look great, wonderful compliance, fantastic hemoglobin A1C, beautiful PD home records, but no date!
I'm beginning to understand what death row inmates must go through--waiting, appeals, hope, setbacks, more appeals, more waiting. Well, I haven't yet run out of appeals. There's still hope.
Monday, April 13, 2009
I'm Good but Slow
"I'm good but slow." That's how I summed up what Dr. Butman told me today about the results of a two-day test I did last week. I had to collect my urine for 24 hours, hook up at 6 p.m. so I'd finish at 4 a.m., go into the PD clinic for the nurse to take samples of the fluid in my peritoneum and for me to conduct two manual exchanges. All that to find out if I am dialysizing (clearing toxins) well and how permeable my peritoneal membrane is (how quickly toxins are passing through the membrane).
On the first count, I'm excellent. The KT/V value is considered good if it's 1.8. Mine was 3.8. But as far as my membrane goes, it's "low average."
This is disappointing, since if I were high average, I could eliminate the mid-day exchange. I could go all day from morning to evening hookup on the cycler without having to concern myself with dialysis. Had this been the case, I would have switched to a different solution called Extraneal, which can sit in the peritoneal membrane all day and is not reabsorbed.
I asked Dr. Butman if my membrane might change, if I might in time become a high average. He said that it's just the way I am, like having blue eyes.
He did say that he might consider having me dry during the day, that is, being like a non-dialysis person, who does not have fluid sitting in the peritoneal membrane. You see, as it is now, when I get up in the morning, I have two liters of dialysis solution in me. I drain this during the mid-day exchange and put two liters of clean fluid back in, which are extracted when I hook up at night. The reason for doing a mid-day exchange is that the fluid cannot sit in the peritoneal membrane for more than eight hours. After that time, toxins and fluids start to get reabsorbed by the body, thereby defeating the whole purpose of dialysis.
There is controversy surrounding the dry-during-the-day approach. The membrane should be kept moist so that when it is used, it is more supple and flexible, thereby meaning that patients should keep fluid in them during the day. Dr. Butman counters that, if you're constantly using the membrane, it gets worn out, so why not keep it dry during the day, thereby not using it during the day. It's hard to say which strategy is better for the patient on a medical basis, though I sure can tell you that, from an emotional and social perspective, going without the mid-day would be so wonderful.
Dr. Butman said he would be thinking about me on Thursday, when I meet with the transplant surgeons at UCLA. "Keep your eys on the prize," he said.
On the first count, I'm excellent. The KT/V value is considered good if it's 1.8. Mine was 3.8. But as far as my membrane goes, it's "low average."
This is disappointing, since if I were high average, I could eliminate the mid-day exchange. I could go all day from morning to evening hookup on the cycler without having to concern myself with dialysis. Had this been the case, I would have switched to a different solution called Extraneal, which can sit in the peritoneal membrane all day and is not reabsorbed.
I asked Dr. Butman if my membrane might change, if I might in time become a high average. He said that it's just the way I am, like having blue eyes.
He did say that he might consider having me dry during the day, that is, being like a non-dialysis person, who does not have fluid sitting in the peritoneal membrane. You see, as it is now, when I get up in the morning, I have two liters of dialysis solution in me. I drain this during the mid-day exchange and put two liters of clean fluid back in, which are extracted when I hook up at night. The reason for doing a mid-day exchange is that the fluid cannot sit in the peritoneal membrane for more than eight hours. After that time, toxins and fluids start to get reabsorbed by the body, thereby defeating the whole purpose of dialysis.
There is controversy surrounding the dry-during-the-day approach. The membrane should be kept moist so that when it is used, it is more supple and flexible, thereby meaning that patients should keep fluid in them during the day. Dr. Butman counters that, if you're constantly using the membrane, it gets worn out, so why not keep it dry during the day, thereby not using it during the day. It's hard to say which strategy is better for the patient on a medical basis, though I sure can tell you that, from an emotional and social perspective, going without the mid-day would be so wonderful.
Dr. Butman said he would be thinking about me on Thursday, when I meet with the transplant surgeons at UCLA. "Keep your eys on the prize," he said.
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