Before my hospital stay in Brooklyn, I had, with only two exceptions, encountered Jews who thought of themselves as victims, and I had always thought of Jamaicans as easy-going, optimistic, friendly people. My 10 days in a Brooklyn hospital showed me Jews and Jamaicans who did not fit these molds at all.
First off, there was Robby. What a fantastic guy! In the hours we spent talking, he did not bring up victimhood once. What a relief! Also Robby has a sense of humor, he's compassionate toward all people, and he struck me as kind of sexy, especially in a sports coat when he was filming his You Tube video.
Except for Heidi Dorman, a friend in high school, who was a playful, funny kid, and Dennis Garfinkle, my son's hard-drinking, crazy friend from Azerbaijan, the other Jews I have met in my life were so into feeling sorry for themselves. They had gone to the best schools, their parents were well-off, they had been successful in business or in their profession, they had really big houses and drove nice cars, and their kids were going to prestigious schools, but somehow they thought they were oppressed. I thought, "Hey, if this is oppression, bring it on. I could sure use some."
So Robby was the first pleasant surprise. Then there was Dr. Fein, the hospital's chief nephrologist, who took such good care of me. He personally saw to it that I had the supplies I needed to do nightly dialysis. He was such a cutie, forever with a sweet smile on his lips. He wore a yamaka, which served to make him look even more gnome-like than he already did. Truly, if you were going to cast someone in the role of a gnome, you could do no better than this portly bundle of twinkling eyes and sunny disposition.
Then there was the yamaka-beclad orderly who rolled me into the ER. I was beginning to tear up because no one I knew was there to see me into surgery. He held my hand and provided such a loving, compassionate presence, assuring me that there were a bunch of people who were going to take very good care of me.
Then there were the awfully nice people that Robby arranged to visit me. Naomi and her son Avishai. The wonderfully deligtful rabbi. And Robby's roommate, Gavin, who took off a full morning from work to see me. So very thoughtful.
And last but not least, the Silversteins. Helen was my roommote, and I realy was taken with her 90-year-old husband, Lou. He had such a sweet air about him, but you could also tell he was capable of being a tough guy, as he had been the assistant managing editor at the New York Times. And their daughter, Anne, was so kind to me, as was their attendant, Lydia.
So I am very grateful for having met a number of Jews who not only did not think of themselves as victims but were actually having fun with life.
Which brings us to the Jamaicans, who were definitely not having fun. I have to say I have never received such terrible care in a hospital than I received from the Jamaican nurses' aides at Long Island College Hospital in Brooklyn. Virtually all the nurses' aides were Jamaican. All of them had big attitude problems and were extremely inconvenienced when I asked for their help. Aaron said that they got upset if you interrupted their chatting with one another. And they were rude and sour-faced when doing any aspect of their job. Part of the reason why I fell the second time was because I did not want to ask one of these unhappy women to help me.
My friend Ken said that they're probably unhappy because New York City is such a shock to their systems, it's so different from their homeland. Sure, that's true, but they made the decision to leave their islands. They need to regroup and find happiness here. In other words, they need to stop thinking of themselves as victims!
Wednesday, March 31, 2010
Thank God for Long Arms
So often during the past few weeks since I broke my hip I have been just able to reach some object. Had my arms been a little less long, these many, many objects would have been just slightly out of reach. Consequently, so many times during the past few weeks I have sighed a big "thank you" to God or whomever is listening, thank you, thank you, thank you for my long arms.
Tuesday, March 30, 2010
I Overdid It!
I had my first on-site physical therapy appointment this morning. Celia, the therapist, said I was doing so well, so she gave me a bunch of new exercises to do at home.
About 3 o'clock I took 500mg of niacin and a capsule of cayenne pepper. I had read that niacin is good for the heart, and my cardiologist recommended that I take it, saying he does too. And the cayenne is for the intense pain in my feet, a consequence of nerve damage due to diabetes. This was my first time taking both these supplements, and my body had an intense reaction. I was struck with nausea and eventually vomiting. I was dizzy and light-headed. Add to this severe pain upon any movement, which was probably due to my vigorous undertaking of the PT exercises this afternoon.
I tried to lie down and relax, but the pain was so intense. I was crying and moaning and on the verge of screaming. I eventually sat up and reached my cell phone to call Janet, my next-door neighbor. The call went to voice mail.
I struggled to take a few steps. I wanted to take some Tylenol, but the bottle was no longer on the kitchen counter. I'd have to walk as far as the hall closet, and I didn't think I could make it. Just then, Janet came to the door. What a relief!
Janet was so wonderful, rubbing my back as I vomited up lunch and the vicodin she found for me. After that bout, I was able to keep another vicodin down. She helped me hobble back to the bed and lie down. Each movement brought sharp pain. I also applied ice to my incisions and groin, where the pain was most intense. Janet brought over a heating pad that I used on my knee and neck. Heat is so comforting, so loving.
Before Janet left, she brought me the book I've been reading, Kurt Vonnegut's "Bluebeard." I read a chapter, then dropped off to sleep. Now I'm feeling so much better.
I'm so grateful for Janet and her tending of my needs. I'm just going to have to take those exercises a little less heartily when I do them tomorrow. I had been off all pain meds for almost a week; this was my first dose. I want to do everything in my power to avoid them altogether.
About 3 o'clock I took 500mg of niacin and a capsule of cayenne pepper. I had read that niacin is good for the heart, and my cardiologist recommended that I take it, saying he does too. And the cayenne is for the intense pain in my feet, a consequence of nerve damage due to diabetes. This was my first time taking both these supplements, and my body had an intense reaction. I was struck with nausea and eventually vomiting. I was dizzy and light-headed. Add to this severe pain upon any movement, which was probably due to my vigorous undertaking of the PT exercises this afternoon.
I tried to lie down and relax, but the pain was so intense. I was crying and moaning and on the verge of screaming. I eventually sat up and reached my cell phone to call Janet, my next-door neighbor. The call went to voice mail.
I struggled to take a few steps. I wanted to take some Tylenol, but the bottle was no longer on the kitchen counter. I'd have to walk as far as the hall closet, and I didn't think I could make it. Just then, Janet came to the door. What a relief!
Janet was so wonderful, rubbing my back as I vomited up lunch and the vicodin she found for me. After that bout, I was able to keep another vicodin down. She helped me hobble back to the bed and lie down. Each movement brought sharp pain. I also applied ice to my incisions and groin, where the pain was most intense. Janet brought over a heating pad that I used on my knee and neck. Heat is so comforting, so loving.
Before Janet left, she brought me the book I've been reading, Kurt Vonnegut's "Bluebeard." I read a chapter, then dropped off to sleep. Now I'm feeling so much better.
I'm so grateful for Janet and her tending of my needs. I'm just going to have to take those exercises a little less heartily when I do them tomorrow. I had been off all pain meds for almost a week; this was my first dose. I want to do everything in my power to avoid them altogether.
Monday, March 29, 2010
Back Behind the Wheel
Instead of asking friends for rides to the doctor, I thought I'd try driving myself. I figured it was my left hip that was broken, and it's the right foot that does the driving. Except for the inconvenience of folding and unfolding the walker and getting it in and out of the car, driving was no problem. So a little more than two weeks following surgery, I now am again enjoying the freedom of life behind the wheel.
Sunday, March 28, 2010
A Glimpse at What my Career Might Have Been
During the few hours I was with the HBO film crew, I had such a wonderful feeling. Working with intelligent, vivacious, creative people in a collaborative setting. Wow! Something I always wanted to experience in my working life but never did. For the moments of brainstorming we had together, I am so grateful. I felt as if I were really using my smarts.
I remember my friend Heather saying of one of the positions she held in PR that she was using all her smarts. At the time, I knew that had never been the case in my career. The work had often not been sufficiently challenging, or the people I was working with were not open to new ideas or were dullards or were not that smart, or the way the organization was structured did not allow for creative input.
Of course, writing an article is intellectually challenging, but it's a solitary business. I do the research, the interviewing, the writing, the rewriting. The experience I always wanted, however, and one that I even prayed to have, was working with a team of intelligent, happy, enthusiastic, creative people with whom I would bounce off ideas and see my ideas put into action. That's what I really missed in my work life. I never felt as if my talents were being used, much less appreciated or compensated.
So for a few moments I saw what might have been. I suppose it still could be, if staying alive didn't require so much of my time!
I remember my friend Heather saying of one of the positions she held in PR that she was using all her smarts. At the time, I knew that had never been the case in my career. The work had often not been sufficiently challenging, or the people I was working with were not open to new ideas or were dullards or were not that smart, or the way the organization was structured did not allow for creative input.
Of course, writing an article is intellectually challenging, but it's a solitary business. I do the research, the interviewing, the writing, the rewriting. The experience I always wanted, however, and one that I even prayed to have, was working with a team of intelligent, happy, enthusiastic, creative people with whom I would bounce off ideas and see my ideas put into action. That's what I really missed in my work life. I never felt as if my talents were being used, much less appreciated or compensated.
So for a few moments I saw what might have been. I suppose it still could be, if staying alive didn't require so much of my time!
Thank God I Didn't Go Skydiving!
A few days after my hip surgery I thought, "Oh, my God! What would have happened had I gone skydiving!"
A few weeks before I went to New York, my friend Othman asked me to join him and his friends for skydiving. I gave it serious thought, attempting to find information online about dialysis patients who skydived. I found nothing. My cardiologist and nephrologist advised against it on general grounds--the folly of anyone jumping from an airplane--but had nothing specifically to advice against it on the grounds of my heart or kidney. Dr. Butman said that I should probably jump dry (without dialysis solution in my peritoneum) in case the force of the landing should push the fluid into my lungs. Other than that, it appeared it would be no bigger problem than for anyone else.
In the end, though, I didn't go. I just had a feeling it might not be the right thing for me at this time.
Now I am so glad I didn't jump. If my bones are so brittle that I can break my hip from a standing position with no velocity, just think what might have happened from thousands of feet up. Besides one of the New York surgeons said that the mere impact of the parachute unfurling could have broken my shoulders.
A few weeks before I went to New York, my friend Othman asked me to join him and his friends for skydiving. I gave it serious thought, attempting to find information online about dialysis patients who skydived. I found nothing. My cardiologist and nephrologist advised against it on general grounds--the folly of anyone jumping from an airplane--but had nothing specifically to advice against it on the grounds of my heart or kidney. Dr. Butman said that I should probably jump dry (without dialysis solution in my peritoneum) in case the force of the landing should push the fluid into my lungs. Other than that, it appeared it would be no bigger problem than for anyone else.
In the end, though, I didn't go. I just had a feeling it might not be the right thing for me at this time.
Now I am so glad I didn't jump. If my bones are so brittle that I can break my hip from a standing position with no velocity, just think what might have happened from thousands of feet up. Besides one of the New York surgeons said that the mere impact of the parachute unfurling could have broken my shoulders.
Empathy for Those in Fear of Falling
Like many young and middle-aged people, I'm sure, I often wondered how an elderly person could die of a broken hip. I completely understand it now.
A broken hip is extremely painful, and if someone were already compromised by other illnesses or in a weak condition, I don't know as if she or he would have the wherewithall to get out of bed again. And with lack of movement comes the possibility of infection that could do one in.
So now I completely understand why the elderly are afraid of falling. I, too, do not want to fall again.
A broken hip is extremely painful, and if someone were already compromised by other illnesses or in a weak condition, I don't know as if she or he would have the wherewithall to get out of bed again. And with lack of movement comes the possibility of infection that could do one in.
So now I completely understand why the elderly are afraid of falling. I, too, do not want to fall again.
Thursday, March 25, 2010
The Days After Surgery
Sunday, March 14--A great deal of pain whenever I tried to move. A doctor helped me walk from the bed to the guest chair, a distance of about two feet. He held me on one side and I used a crutch on the other. This was the limit of my pain tolerance. I waited a long time before attempting the trip back to bed. Naomi and her son, Avishi (sp? pronounced AH vee shy), stopped by to visit. They are friends of Robby.
Monday, March 15--A very friendly rabbi visited me. He said he was Robby's sister's rabbi. A beautiful bouquet arrived from Tim Howard in Sacramento. A reporter and a photographer from the New York Daily News interviewed me about my ordeal and my cause. That went very well. I made an attempt at physical therapy, but it was much too painful. I couldn't help but scream. I was moved to the third floor to be near rehab. At first I had the room to myself, but Helen Silverstein, who broke her ankle, arrived at about 1 a.m.
Tuesday, March 16--Went around the "gym" four times with a walker. Much improved over the previous days. Aaron arrived around 7:30 p.m. So good to see him! HBO put him up at a B&B about seven blocks away. Met Helen's husband, Lou Silverstein, former asst. managing editor of the New York Times, and their daughter, Anne, who is the editor of a union newspaper. Helen and Lou hired two women to take 12-hour shifts so that Helen would never be unattended. Aaron was such a help, setting up the dialysis machine and fetching things for me. Yet one more night of poor sleep.
Wednesday, March 17--Walked with walker without a spotter. Walked between my room and the rehab center. Aaron slept until 3 p.m.. came over afterwards. Moved to a private room. PT personnel very professional, compassionate. Especially liked James, the PT attendant, and Grace, the chief physical therapist.
Miss Brockman, a former UN interpreter and the wife of one of the hospital's psychiatrists, was a real fighter. She had been doing yoga previous to her hip fracture, and she believed that was responsible for her underlying good condition. I, too, was thankful for all the work I had done in cardiac rehab. Without those weeks of beefing up, this would have been much more difficult, I'm sure. Miss Brockman and I were the overachievers. We wanted to get better and get out of there. That was not typical of most patients I saw. Many refued to leave their beds or they refused to do anything once they got to rehab. One woman stood by the parallel bars and said, "I can't. I can't." Grace encouraged her, but she persisted in her naysaying. Finally, Grace said, "You've been in bed for six months. If you go back to the nursing home like this and say 'I can't' more than twice, they're going to leave you in bed, and you're going to stay there."
Thursday, March 18--While attempting to negotiate the mess of tubing and cables around my bed in the early morning, I lost my balance and fell. I screamed, "Help me! Help me!" Nurses came running. Such excrutiating pain. Even more than the original break. They lifted me onto a guest chair, where I sat until a stretcher came to take me to x-ray. For some reason, this was not a stretcher that went up and down, so getting onto it was torture, as was moving from the stretcher to the x-ray table and back to the stretcher. Once I was finally back in my bed, I stayed there. Waited to hear all day whether this would mean more surgery. Finally, at 6 p.m., a doctor told me that this was a splinter off the original break that could not be fixed surgically. I would have to allow it to heal on its own. So good to have Aaron with me all day today.
Friday, March 19--Fairly easy to move in the morning, but extremely painful in the afternoon. It's a matter of timing the pain meds just right so that they're at their peak effectiveness when I'm in physical therapy. Aaron explored the Met, Grand Center Park, and Times Square.
Saturday, March 20-Monday, March 22--Continued to progress in PT. Learned how to walk up and down the stairs with a walker. Left for the airport at 3 p.m. Left NYC on a United flight at 8:30 p.m. Arrived in LA a little before midnight. So good to be home.
Monday, March 15--A very friendly rabbi visited me. He said he was Robby's sister's rabbi. A beautiful bouquet arrived from Tim Howard in Sacramento. A reporter and a photographer from the New York Daily News interviewed me about my ordeal and my cause. That went very well. I made an attempt at physical therapy, but it was much too painful. I couldn't help but scream. I was moved to the third floor to be near rehab. At first I had the room to myself, but Helen Silverstein, who broke her ankle, arrived at about 1 a.m.
Tuesday, March 16--Went around the "gym" four times with a walker. Much improved over the previous days. Aaron arrived around 7:30 p.m. So good to see him! HBO put him up at a B&B about seven blocks away. Met Helen's husband, Lou Silverstein, former asst. managing editor of the New York Times, and their daughter, Anne, who is the editor of a union newspaper. Helen and Lou hired two women to take 12-hour shifts so that Helen would never be unattended. Aaron was such a help, setting up the dialysis machine and fetching things for me. Yet one more night of poor sleep.
Wednesday, March 17--Walked with walker without a spotter. Walked between my room and the rehab center. Aaron slept until 3 p.m.. came over afterwards. Moved to a private room. PT personnel very professional, compassionate. Especially liked James, the PT attendant, and Grace, the chief physical therapist.
Miss Brockman, a former UN interpreter and the wife of one of the hospital's psychiatrists, was a real fighter. She had been doing yoga previous to her hip fracture, and she believed that was responsible for her underlying good condition. I, too, was thankful for all the work I had done in cardiac rehab. Without those weeks of beefing up, this would have been much more difficult, I'm sure. Miss Brockman and I were the overachievers. We wanted to get better and get out of there. That was not typical of most patients I saw. Many refued to leave their beds or they refused to do anything once they got to rehab. One woman stood by the parallel bars and said, "I can't. I can't." Grace encouraged her, but she persisted in her naysaying. Finally, Grace said, "You've been in bed for six months. If you go back to the nursing home like this and say 'I can't' more than twice, they're going to leave you in bed, and you're going to stay there."
Thursday, March 18--While attempting to negotiate the mess of tubing and cables around my bed in the early morning, I lost my balance and fell. I screamed, "Help me! Help me!" Nurses came running. Such excrutiating pain. Even more than the original break. They lifted me onto a guest chair, where I sat until a stretcher came to take me to x-ray. For some reason, this was not a stretcher that went up and down, so getting onto it was torture, as was moving from the stretcher to the x-ray table and back to the stretcher. Once I was finally back in my bed, I stayed there. Waited to hear all day whether this would mean more surgery. Finally, at 6 p.m., a doctor told me that this was a splinter off the original break that could not be fixed surgically. I would have to allow it to heal on its own. So good to have Aaron with me all day today.
Friday, March 19--Fairly easy to move in the morning, but extremely painful in the afternoon. It's a matter of timing the pain meds just right so that they're at their peak effectiveness when I'm in physical therapy. Aaron explored the Met, Grand Center Park, and Times Square.
Saturday, March 20-Monday, March 22--Continued to progress in PT. Learned how to walk up and down the stairs with a walker. Left for the airport at 3 p.m. Left NYC on a United flight at 8:30 p.m. Arrived in LA a little before midnight. So good to be home.
Wednesday, March 24, 2010
Heidi, Daughter of Noah
On the stretcher on my way to surgery on Saturday morning, I fought back tears. Throughout this entire ordeal, I kept my spirits exceedingly high. But as I was being wheeled down to the OR, I suddenly felt lonely and sad. I wished Aaron were there. Or Felix or Robby. The attendant was such a nice guy. He held my hand and told me that there were a lot of people who were going to take good care of me.
Sure enough, about a dozen people were in the pre-op room, all for me. They'd opened the place up for my surgery, no one else's. Part of my celebrity status as HBO team member, I guess. This had been evident since Thursday, with introductions to the head of the ER department and Dr. Fein, the head of nephrology, who followed me throughout my stay, making sure my dialysis supplies were replenished. Also the PR gal had seen me in the ER.
Surgery was uneventful. Most importantly, I didn't feel the tube going into me or coming out, the latter of which was a traumatic experience after bypass surgery in November.
I got out of surgery at about 11 a.m. but didn't return to my room until about 9 p.m.--10 hours in recovery. Most of that time I dozed. Around 4, much to my surprise, Robby appeared. Felix had called the hospital earlier in the day to see how I was. When he couldn't reach me, he called the front desk and was told I was in surgery. Felix then called Robby, hoping he would pick up. Robby saw Felix's name displayed or recognized the number and so he picked up. He felt being with me was a higher calling than strictly observing the sabbath. I'm so glad he did. So good to see him! We talked easily about family and religion and what else I don't recall. There was just an easy, friendly flow to the conversation.
At some point, Robby had to leave to attend synagogue. Robby is making every effort to adhere to six months of thrice-daily prayers to honor the passing of his father, something that is often quite difficult to do, as the prayers are supposed to be said with other believers, not as a solitary ritual. What a beautiful, loving thing to have your child remember you in this way, through these acts of dedication and faith. Before he left, he asked if he could kiss me. Well, golly, sure, I said, or something like that. A sweet, little kiss, just what is needed following surgery. A hand hold before and a kiss afterwards. Perfect.
When Robby returned, he told me something that really warmed my heart--and still does now. At some point in the service, or whatever the synagogue time is called, the rabbi went around and asked if there were any prayer requests. Robby said that if I were a Jew, the rabbi would say this is a prayer request for the healing of Heidi, daughter of Moses. But since I'm not, the rabbi said this is for Heidi, daughter of Noah, as everyone is a son or daughter of Noah. I never thought of it like that, but, yes, that's how we're all related, all connected to one another.
Sure enough, about a dozen people were in the pre-op room, all for me. They'd opened the place up for my surgery, no one else's. Part of my celebrity status as HBO team member, I guess. This had been evident since Thursday, with introductions to the head of the ER department and Dr. Fein, the head of nephrology, who followed me throughout my stay, making sure my dialysis supplies were replenished. Also the PR gal had seen me in the ER.
Surgery was uneventful. Most importantly, I didn't feel the tube going into me or coming out, the latter of which was a traumatic experience after bypass surgery in November.
I got out of surgery at about 11 a.m. but didn't return to my room until about 9 p.m.--10 hours in recovery. Most of that time I dozed. Around 4, much to my surprise, Robby appeared. Felix had called the hospital earlier in the day to see how I was. When he couldn't reach me, he called the front desk and was told I was in surgery. Felix then called Robby, hoping he would pick up. Robby saw Felix's name displayed or recognized the number and so he picked up. He felt being with me was a higher calling than strictly observing the sabbath. I'm so glad he did. So good to see him! We talked easily about family and religion and what else I don't recall. There was just an easy, friendly flow to the conversation.
At some point, Robby had to leave to attend synagogue. Robby is making every effort to adhere to six months of thrice-daily prayers to honor the passing of his father, something that is often quite difficult to do, as the prayers are supposed to be said with other believers, not as a solitary ritual. What a beautiful, loving thing to have your child remember you in this way, through these acts of dedication and faith. Before he left, he asked if he could kiss me. Well, golly, sure, I said, or something like that. A sweet, little kiss, just what is needed following surgery. A hand hold before and a kiss afterwards. Perfect.
When Robby returned, he told me something that really warmed my heart--and still does now. At some point in the service, or whatever the synagogue time is called, the rabbi went around and asked if there were any prayer requests. Robby said that if I were a Jew, the rabbi would say this is a prayer request for the healing of Heidi, daughter of Moses. But since I'm not, the rabbi said this is for Heidi, daughter of Noah, as everyone is a son or daughter of Noah. I never thought of it like that, but, yes, that's how we're all related, all connected to one another.
Didn't Move for 48 Hours
Except for being moved on and off the x-ray table, spreading my legs to allow for the insertion of a catheter to collect my urine, and flinching in my sleep, I did not move one inch in the next 48 hours.
People who have never taken pain medication think that they kill the pain. Not true. At best they dull it so that it's bearable. Even with IV morphine, I was still feeling it, so I didn't move.
The doctors were concerned that I had been taking blood thinners and that surgery is not supposed to proceed until five to seven days after the halting of blood thinners. This would put my earliest possible surgery date as Tuesday, March 16. Five days and five nights lying in the exact same position. I just didn't think I could do that. Already my butt was sweaty and itchy and sore.
For the remainder of Thursday and all day Friday, the cardiologist, surgical team, osteopaths, nephrologists, pharmacist, and others I know not who they were kept entering my room, asking me questions, trying to determine what to do with me.
From ER, I was taken to a shared room with a woman who was playing her TV when I arrived at 11:30 p.m. After an hour or so, I politely said, "Excuse me, ma'am, but could you please turn it down just a bit?" No response. A half hour after that, I said the same thing, just as sweetly. She shot back, "Are you white?" I asked her if that was a problem and added, "Ma'am, I asked you as politely and kindly as possible. It's just been a very hard day, and I'd like to get some sleep." To that she gave an even angrier reply, "Well, then turn off your light and go to sleep." I told her I'd broken my hip and I couldn't move to shut off the light or reach the call button. I shared a room with Miss Winston for the next four nights. Often her
TV was going all night long--often while she slept!
Back home, I would never have been given a shared room, and I told the nursing staff I needed a private room to do peritoneal dialysis. The environment is supposed to be squeaky clean with anyone in the room wearing a surgical mask during hook-up and capping off. I was told that was not possible.
The crew got permission to film in the x-ray room on Thursday and in my hospital room on Friday. They got some good shots of me wincing with pain, then bravely regrouping to smile. They also got me adamently saying that this incident shored up my resolve to continue to attempt to change the law for compensating donors, not just for my own sake but for all the tens of thousands who are dying for a kidney. This fracture shows how my time is running out, and I have to work even harder to see that a law that is preventing donations is changed.
Felix planned to wait around to see me through surgery, if it were to occur on Saturday or Sunday. Bill and Ken were returning Friday night to Toronto. I kept talking to Felix throughout Friday. It sure looked like the docs wanted to wait until Tuesday. In that case, Felix would leave and come back by Tuesday, as the crew did not want me to be alone in the hospital. I thought this was so sweet but that they should do what they needed to do, since I had a lot of experience facing things alone.
Robby was a sweetie too. He said that he would break the sabbath to be with me, if my surgery were going to be tomorrow, but that he'd have to know by sunset Friday. Otherwise, he wouldn't answer a phone call until Sunday.
At about 5:30 Friday evening, I was told I had a definite answer: Surgery would be Tuesday morning. I called Felix and Robby. Felix said Jay, the research assistant in Toronto, was working on getting a ticket for Aaron to come to New York. He said several times, "Are you sure I should go?" I insisted he not wait around until Tuesday, so he left with the rest of the crew to fly home. Robby began his seder meal.
The sun set, while a doctor I had never seen before talked with me. He said he was more concerned about me lying around for five days and the risk of blood clots than he was about operating with blood thinners in my system. He felt the surgery should be done as soon as possible. This one dissenting voice turned the whole bunch of doctors around. Surgery was rescheduled for the next morning, Saturday, the sabbath, the morning after the film crew returned to Toronto.
People who have never taken pain medication think that they kill the pain. Not true. At best they dull it so that it's bearable. Even with IV morphine, I was still feeling it, so I didn't move.
The doctors were concerned that I had been taking blood thinners and that surgery is not supposed to proceed until five to seven days after the halting of blood thinners. This would put my earliest possible surgery date as Tuesday, March 16. Five days and five nights lying in the exact same position. I just didn't think I could do that. Already my butt was sweaty and itchy and sore.
For the remainder of Thursday and all day Friday, the cardiologist, surgical team, osteopaths, nephrologists, pharmacist, and others I know not who they were kept entering my room, asking me questions, trying to determine what to do with me.
From ER, I was taken to a shared room with a woman who was playing her TV when I arrived at 11:30 p.m. After an hour or so, I politely said, "Excuse me, ma'am, but could you please turn it down just a bit?" No response. A half hour after that, I said the same thing, just as sweetly. She shot back, "Are you white?" I asked her if that was a problem and added, "Ma'am, I asked you as politely and kindly as possible. It's just been a very hard day, and I'd like to get some sleep." To that she gave an even angrier reply, "Well, then turn off your light and go to sleep." I told her I'd broken my hip and I couldn't move to shut off the light or reach the call button. I shared a room with Miss Winston for the next four nights. Often her
TV was going all night long--often while she slept!
Back home, I would never have been given a shared room, and I told the nursing staff I needed a private room to do peritoneal dialysis. The environment is supposed to be squeaky clean with anyone in the room wearing a surgical mask during hook-up and capping off. I was told that was not possible.
The crew got permission to film in the x-ray room on Thursday and in my hospital room on Friday. They got some good shots of me wincing with pain, then bravely regrouping to smile. They also got me adamently saying that this incident shored up my resolve to continue to attempt to change the law for compensating donors, not just for my own sake but for all the tens of thousands who are dying for a kidney. This fracture shows how my time is running out, and I have to work even harder to see that a law that is preventing donations is changed.
Felix planned to wait around to see me through surgery, if it were to occur on Saturday or Sunday. Bill and Ken were returning Friday night to Toronto. I kept talking to Felix throughout Friday. It sure looked like the docs wanted to wait until Tuesday. In that case, Felix would leave and come back by Tuesday, as the crew did not want me to be alone in the hospital. I thought this was so sweet but that they should do what they needed to do, since I had a lot of experience facing things alone.
Robby was a sweetie too. He said that he would break the sabbath to be with me, if my surgery were going to be tomorrow, but that he'd have to know by sunset Friday. Otherwise, he wouldn't answer a phone call until Sunday.
At about 5:30 Friday evening, I was told I had a definite answer: Surgery would be Tuesday morning. I called Felix and Robby. Felix said Jay, the research assistant in Toronto, was working on getting a ticket for Aaron to come to New York. He said several times, "Are you sure I should go?" I insisted he not wait around until Tuesday, so he left with the rest of the crew to fly home. Robby began his seder meal.
The sun set, while a doctor I had never seen before talked with me. He said he was more concerned about me lying around for five days and the risk of blood clots than he was about operating with blood thinners in my system. He felt the surgery should be done as soon as possible. This one dissenting voice turned the whole bunch of doctors around. Surgery was rescheduled for the next morning, Saturday, the sabbath, the morning after the film crew returned to Toronto.
Pride Cometh Before the Fall
On Wednesday, March 10, I arrived in New York City at the Wellington Hotel in Manhattan. The cab ride from the airport was on a freeway that did not offer many views. I did see some horse-drawn buggies lined up on the perimeter of Central Park, but that's about it. This will be important to remember, once you find out what transpired the following morning.
After settling in, I had tea with Bill, the director, and Felix, the producer. We went over the general plan for the following days. They wanted to film me hooking up to the dialysis machine and capping off from it, and Robby and me meeting with a lawyer to discuss a strategy for changing the law that prohibits compensating donors. They also wanted to film an interview of me while in a cab and stage my entry to the hotel with all my gear. Tomorrow morning they planned to film Robby filming his You Tube video on the immorality of not compensating donors. (Plot synopsis of Robby's video: People standing around a burning building, horrified that a young child is on the roof. Mother screaming for someone to rescue her child, to save his life. No one steps forward. She offers $1,000. A man steps forward, saying he'll do it. Another man gets in the first man's way, saying it's against the law to be compensated for saving someone's life. Hence the parallel with the prohibition against compensating kidney donors, who are also saving someone's life.)
That night, Bill, Felix, Robby, and I went out for Israeli food, similar to Lebanese, which I've had many times before. (Ken the cameraman was doing something else.) There was a hand-washing cubicle near our table for Orthodox Jews who wash before eating bread. Really enjoyed talking with these three intelligent men, brainstorming and feeling a part of the process.
A lot of fun to see how a documentary is made. It's certainly not just letting the camera roll.
My Baxter boxes had been delivered to Robby's apartment. The crew was amazed how much gear is required to keep me alive for six days.
The next morning, a local sound man met us at the hotel. During the cab ride to Brooklyn, where Robby was filming the YouTube piece, Bill interviewed me. The driver's GPS or dispatch kept interfering, so Bill had to ask the same questions up to four times, and I had to give the same impassioned answers up to four times. He said he'd snip it together so that it sounded right.
I spoke of how Robby was eager to work with me, as very few dialysis patients have as much energy and enthusiasm as I do. Most are very sick and very tired, many are depressed. "Dialysis patients are an invisible population," I said. "Unless you know someone on dialysis, you don't think about it. I want to do for kidney disease what was done for AIDS: Put a face on it. Dialysis is something that can happen to anyone, young or old. And with so many people overweight and obese in this country, many are bound to develop diabetes and hypertension, which are the two leading causes of end-stage renal disease."
Robby had said the same: I was chosen for this documentary because I am pretty, intelligent, and full of life. A perfect spokesperson. I felt good about my answers and my presence, and later the crew said I came off very well on camera.
I teased the crew: "Where's the hair and makeup gal? I was counting on her."
During the hour-long cab ride, I only had a few moments to look out the window; the rest of the time my eyes were on the interviewer. Remember this for later. Ken filmed me getting out of the cab and walking briskly down the street. Actually he filmed this three times.
For the next hour or so, I watched the filming on a street of beautiful brownstones. At one point, I leaned against a wrought-iron gate that I had thought was a fence. The gate gave way, and I fell onto a cement step. I was in a great deal of pain. Felix and Bill helped me to a stair so that I could sit down. Bill and Felix kept asking if I wanted to go to the ER, but I didn't want them to make a fuss. Bill figured that if I had broken anything, I'd be screaming, and since I wasn't, I should feel better soon.
When I attempted to stand, I could not, so Bill and Felix made a chair with their arms and carried me to the car. When they lifted me inside, I was on the verge of screaming. I was taken to an ER a few blocks away, where a bear of a paramedic said he'd have to get fresh with me in order to get me onto a stretcher. I put my arms around his neck and commenced screaming. Later I apologized for screaming in his ear. In typical New York fashion, he quipped, "That's OK. I've got another one."
Interesting side note: The paramedic's partner's photograph appeared in the NY Times the next day in an article about accidents caused by emergency response personnel.
The ER was absolutely crazy, like nothing I've ever seen anywhere but in a movie. All the curtained rooms were full, and stretchers were lined up as tight as possible in the aisles. Surprisingly, the personnel were some of the best I've ever seen. I received pain killers, which were much needed, as any movement set off sharp pangs. Felix stayed with me in the ER. I suggested he see if he could get permission to film in here. He insisted that we needed to focus on me, but he appreciated my concern for the film. I said that I have a video function on my camera, so after much insistence, he filmed and took a few still shots.
I absolutely knew, even in those moments of excruciating pain, that this would make for better film making, as it shows how vulnerable dialysis patients are. Many doctors told me over the next 12 days that, had I not been a dialysis patient, I would have fallen and been bruised, but that's it. Because of the brittle nature of dialysis patients' bones, however, my left hip was broken.
After settling in, I had tea with Bill, the director, and Felix, the producer. We went over the general plan for the following days. They wanted to film me hooking up to the dialysis machine and capping off from it, and Robby and me meeting with a lawyer to discuss a strategy for changing the law that prohibits compensating donors. They also wanted to film an interview of me while in a cab and stage my entry to the hotel with all my gear. Tomorrow morning they planned to film Robby filming his You Tube video on the immorality of not compensating donors. (Plot synopsis of Robby's video: People standing around a burning building, horrified that a young child is on the roof. Mother screaming for someone to rescue her child, to save his life. No one steps forward. She offers $1,000. A man steps forward, saying he'll do it. Another man gets in the first man's way, saying it's against the law to be compensated for saving someone's life. Hence the parallel with the prohibition against compensating kidney donors, who are also saving someone's life.)
That night, Bill, Felix, Robby, and I went out for Israeli food, similar to Lebanese, which I've had many times before. (Ken the cameraman was doing something else.) There was a hand-washing cubicle near our table for Orthodox Jews who wash before eating bread. Really enjoyed talking with these three intelligent men, brainstorming and feeling a part of the process.
A lot of fun to see how a documentary is made. It's certainly not just letting the camera roll.
My Baxter boxes had been delivered to Robby's apartment. The crew was amazed how much gear is required to keep me alive for six days.
The next morning, a local sound man met us at the hotel. During the cab ride to Brooklyn, where Robby was filming the YouTube piece, Bill interviewed me. The driver's GPS or dispatch kept interfering, so Bill had to ask the same questions up to four times, and I had to give the same impassioned answers up to four times. He said he'd snip it together so that it sounded right.
I spoke of how Robby was eager to work with me, as very few dialysis patients have as much energy and enthusiasm as I do. Most are very sick and very tired, many are depressed. "Dialysis patients are an invisible population," I said. "Unless you know someone on dialysis, you don't think about it. I want to do for kidney disease what was done for AIDS: Put a face on it. Dialysis is something that can happen to anyone, young or old. And with so many people overweight and obese in this country, many are bound to develop diabetes and hypertension, which are the two leading causes of end-stage renal disease."
Robby had said the same: I was chosen for this documentary because I am pretty, intelligent, and full of life. A perfect spokesperson. I felt good about my answers and my presence, and later the crew said I came off very well on camera.
I teased the crew: "Where's the hair and makeup gal? I was counting on her."
During the hour-long cab ride, I only had a few moments to look out the window; the rest of the time my eyes were on the interviewer. Remember this for later. Ken filmed me getting out of the cab and walking briskly down the street. Actually he filmed this three times.
For the next hour or so, I watched the filming on a street of beautiful brownstones. At one point, I leaned against a wrought-iron gate that I had thought was a fence. The gate gave way, and I fell onto a cement step. I was in a great deal of pain. Felix and Bill helped me to a stair so that I could sit down. Bill and Felix kept asking if I wanted to go to the ER, but I didn't want them to make a fuss. Bill figured that if I had broken anything, I'd be screaming, and since I wasn't, I should feel better soon.
When I attempted to stand, I could not, so Bill and Felix made a chair with their arms and carried me to the car. When they lifted me inside, I was on the verge of screaming. I was taken to an ER a few blocks away, where a bear of a paramedic said he'd have to get fresh with me in order to get me onto a stretcher. I put my arms around his neck and commenced screaming. Later I apologized for screaming in his ear. In typical New York fashion, he quipped, "That's OK. I've got another one."
Interesting side note: The paramedic's partner's photograph appeared in the NY Times the next day in an article about accidents caused by emergency response personnel.
The ER was absolutely crazy, like nothing I've ever seen anywhere but in a movie. All the curtained rooms were full, and stretchers were lined up as tight as possible in the aisles. Surprisingly, the personnel were some of the best I've ever seen. I received pain killers, which were much needed, as any movement set off sharp pangs. Felix stayed with me in the ER. I suggested he see if he could get permission to film in here. He insisted that we needed to focus on me, but he appreciated my concern for the film. I said that I have a video function on my camera, so after much insistence, he filmed and took a few still shots.
I absolutely knew, even in those moments of excruciating pain, that this would make for better film making, as it shows how vulnerable dialysis patients are. Many doctors told me over the next 12 days that, had I not been a dialysis patient, I would have fallen and been bruised, but that's it. Because of the brittle nature of dialysis patients' bones, however, my left hip was broken.
Tuesday, March 09, 2010
No Such Thing as Traveling Light
I have taken these photographs so that people begin to understand what living with dialysis is all about. Pictured here are the dialysis and diabetic supplies I have to bring with me for my seven-day, six-night stay in NYC.
On the futon:
* cassettes (tubing) for nine days--always figure for some faulty set-ups
* blood pressure cuff--I take my BP at least twice a day to determine what kind of dialysis solution I should use.
* scissors for cutting holes in the frame delivery pads (see below) in order to customize them for my insulin pump infusion set
* Lysol for cleaning the room in which I will do dialysis. I Lysol everything down when I'm setting up each night and when I'm changing the bandaging every morning. Sure, they've got Lysol in NYC, but I wouldn't know where to get it when I step off the plane.
* patient extension lines--These are vital, as I don't know how far the toilet is from the dialysis machine.
* extra batteries for the insulin pump
* prescriptions for meds in case they are lost or don't arrive
* PD belt for holding the transfer set in place while doing dialysis; can also be worn during the day to secure the transfer set under my clothes
* all my meds, each breakfast and dinner compilation put into separate snack bags and then all the breakfast bags and all the dinner bags put into their respective sandwich bags
* ponytail ties for securing the baby socks on my transfer set when I don't want to wear the PD belt during the day
* salve to diminish the scars from my heart surgery
* blood monitor with lancets, lancet pen for delivering the stick, alcohol swabs, and test strips for determining my blood sugar level
* extra test strips
* hydrocortizone cream to attempt to combat the redness around my dialysis exit site
* antibacterial cream for daily use about the exit site
* surgical masks
* letter from my doctor explaining to airline personnel why I need to take my dialysis machine onboard
* paper toweling, which I use after I wash my hands, as bath towels tend to collect germs
* antibacterial soap
* transfer set pads--The needle for the insulin pump easily comes out of my skin when putting on and off clothes and such. These sticky pads help keep the needle secure, but I have to cut a hole in them to allow for the tube to slip out while taking a shower.
* insulin syringes in case my insulin pump fails and I have to switch over to shots
* mini-caps for putting over the transfer set during the day when I'm not doing dialysis
* medical tape
* baby socks for covering both my transfer set and my insulin pump (a new one every day)
* approx. 30 pages of my recent medical history in case I need medical attention while in NYC
* blank patient records for writing down my BP, blood sugar, amount of insulin taken, readings from the dialysis machine regarding my treatment, my weight
* sterile gauze
* sharps container for collecting used syringes, needles, and lancets, as it is against the law to put them in the trash
* gynecological wipes--During the dialysis set-up, I wash my hands three times with antibacterial soap, then use a gynecological wipe to get any residual dirt or germs off my hands
* infusion sets--These are the mechanisms that deliver the needle into my body for delivery of insulin from the insulin pump. They need to be changed at minimum every three days; however, because the infusion-site needle so frequently comes out, I have to bring plenty of extra infusion sets.
* syringe, which becomes the insulin cartridge; the catridge is full of insulin, enough to last approx. three days
* alcohol swabs
* clamp for opening dialysis-solution boxes and bags
* insulin plus an extra bottle
* CDX II, which assists in hooking up the dialysis bags to the tubing
There goes one full suitcase of stuff!
Then I have to carry on the 28-pound cycler, pictured here with the three bags of solution I use every night. To protect the cycler and also to muffle its gurgling and farting all night long, I wrap it in two small quilts. Thank goodness, Baxter, the dialysis supply company, delivers the boxes of solution. But still, I'll have to lug those boxes from the hotel where HBO is putting me up to the hotel where I'll be staying afterwards. Quite the workout!
My biggest concern is getting the machine onboard. Air Canada had me in tears this summer. The personnel refused to let me carry the machine onboard. American Airlines was just the opposite, very accommodating, very kind.
And so, folks, yes, it is possible to travel on PD (peritoneal dialysis), but it's a chore. Just don't ask me to bring you anything back from New York! It won't fit!
Ooops, I forgot the bleached hand towels that I also need to bring. I put a new one on my lap each night and each morning during set-up and capping-off so that the transfer set does not come in contact with my bed clothes, which, like everything else, are carrying germs. This is why I lay everything out, so that I don't forget something. So add seven hand towels to that pile.
On the futon:
* cassettes (tubing) for nine days--always figure for some faulty set-ups
* blood pressure cuff--I take my BP at least twice a day to determine what kind of dialysis solution I should use.
* scissors for cutting holes in the frame delivery pads (see below) in order to customize them for my insulin pump infusion set
* Lysol for cleaning the room in which I will do dialysis. I Lysol everything down when I'm setting up each night and when I'm changing the bandaging every morning. Sure, they've got Lysol in NYC, but I wouldn't know where to get it when I step off the plane.
* patient extension lines--These are vital, as I don't know how far the toilet is from the dialysis machine.
* extra batteries for the insulin pump
* prescriptions for meds in case they are lost or don't arrive
* PD belt for holding the transfer set in place while doing dialysis; can also be worn during the day to secure the transfer set under my clothes
* all my meds, each breakfast and dinner compilation put into separate snack bags and then all the breakfast bags and all the dinner bags put into their respective sandwich bags
* ponytail ties for securing the baby socks on my transfer set when I don't want to wear the PD belt during the day
* salve to diminish the scars from my heart surgery
* blood monitor with lancets, lancet pen for delivering the stick, alcohol swabs, and test strips for determining my blood sugar level
* extra test strips
* hydrocortizone cream to attempt to combat the redness around my dialysis exit site
* antibacterial cream for daily use about the exit site
* surgical masks
* letter from my doctor explaining to airline personnel why I need to take my dialysis machine onboard
* paper toweling, which I use after I wash my hands, as bath towels tend to collect germs
* antibacterial soap
* transfer set pads--The needle for the insulin pump easily comes out of my skin when putting on and off clothes and such. These sticky pads help keep the needle secure, but I have to cut a hole in them to allow for the tube to slip out while taking a shower.
* insulin syringes in case my insulin pump fails and I have to switch over to shots
* mini-caps for putting over the transfer set during the day when I'm not doing dialysis
* medical tape
* baby socks for covering both my transfer set and my insulin pump (a new one every day)
* approx. 30 pages of my recent medical history in case I need medical attention while in NYC
* blank patient records for writing down my BP, blood sugar, amount of insulin taken, readings from the dialysis machine regarding my treatment, my weight
* sterile gauze
* sharps container for collecting used syringes, needles, and lancets, as it is against the law to put them in the trash
* gynecological wipes--During the dialysis set-up, I wash my hands three times with antibacterial soap, then use a gynecological wipe to get any residual dirt or germs off my hands
* infusion sets--These are the mechanisms that deliver the needle into my body for delivery of insulin from the insulin pump. They need to be changed at minimum every three days; however, because the infusion-site needle so frequently comes out, I have to bring plenty of extra infusion sets.
* syringe, which becomes the insulin cartridge; the catridge is full of insulin, enough to last approx. three days
* alcohol swabs
* clamp for opening dialysis-solution boxes and bags
* insulin plus an extra bottle
* CDX II, which assists in hooking up the dialysis bags to the tubing
There goes one full suitcase of stuff!
Then I have to carry on the 28-pound cycler, pictured here with the three bags of solution I use every night. To protect the cycler and also to muffle its gurgling and farting all night long, I wrap it in two small quilts. Thank goodness, Baxter, the dialysis supply company, delivers the boxes of solution. But still, I'll have to lug those boxes from the hotel where HBO is putting me up to the hotel where I'll be staying afterwards. Quite the workout!
My biggest concern is getting the machine onboard. Air Canada had me in tears this summer. The personnel refused to let me carry the machine onboard. American Airlines was just the opposite, very accommodating, very kind.
And so, folks, yes, it is possible to travel on PD (peritoneal dialysis), but it's a chore. Just don't ask me to bring you anything back from New York! It won't fit!
Ooops, I forgot the bleached hand towels that I also need to bring. I put a new one on my lap each night and each morning during set-up and capping-off so that the transfer set does not come in contact with my bed clothes, which, like everything else, are carrying germs. This is why I lay everything out, so that I don't forget something. So add seven hand towels to that pile.
Diabetes is Much More Than Taking Shots
When the UCLA cardiologist said no to a kidney-pancreas transplant (but yes to a kidney transplant), he said that the risk of blood clots during surgery far outweighs the inconvenience of having to take insulin shots. Wow, this shows how little understanding even doctors have of what diabetes entails.
Last night's medical emergency would never occur if I had a functioning pancreas. Neither would the effects of sky-high blood sugar, like kidney disease, blindness, amputation, etc. I want a new pancreas because I don't want any more paramedic visits, hospitalizations for diabetic complications. Sure, it would also be fantastic to never check my blood sugar again, to never wear an insulin pump or take shots, to travel anywhere and at any time at a moment's notice without having to concern myself about keeping my insulin cool and how many syringes or infusion sets I need to pack.
But that is water over the bridge. I was given a "no" to a pancreas, so I have to accept that. A kidney is certainly better than nothing.
Last night's medical emergency would never occur if I had a functioning pancreas. Neither would the effects of sky-high blood sugar, like kidney disease, blindness, amputation, etc. I want a new pancreas because I don't want any more paramedic visits, hospitalizations for diabetic complications. Sure, it would also be fantastic to never check my blood sugar again, to never wear an insulin pump or take shots, to travel anywhere and at any time at a moment's notice without having to concern myself about keeping my insulin cool and how many syringes or infusion sets I need to pack.
But that is water over the bridge. I was given a "no" to a pancreas, so I have to accept that. A kidney is certainly better than nothing.
Thank God This Happened Before I Left
Last night I experienced very low blood sugar. By the time I was aware of what was transpiring, I was way too far gone. I stumbled about the apartment, managing to get to the refrigerator for some juice. I drank some grapefruit juice out of the carton, but perhaps this wasn't sweet enough. I began to panic, evidently screaming for help, because Jason, my next-door neighbor in the front half of the house, came to my door. I must have said something frenetic and incoherent, so he called the paramedics.
The fact that I can scream so loud that neighbors hear me is something that surprises me, since I have never screamed in my normal state of existence. It's interesting to note these things about oneself--that there are regions within us that we can access when we need to. Certainly a life-threatening situation like low blood sugar level is one of those times that the body and the mind bring out all that lies hidden during our everyday life in a final effort to avoid death. Last night was just such a time.
By the time the paramedics arrived, I was flailing about on the floor next to Rasputin's kennel. (I had put him inside it and locked the door as I always do. He loves the security and privacy of this small space. He loves being incarcerated when he beds down for the night!) I was screaming, too, and Rasputin was probably getting scared. He barked vociferously at the paramedics, but couldn't reach them to bite.
About the time the paramedics arrived, Aaron arrived home from his restaurant job. The paramedics measured my blood sugar at 40, and it had no doubt been much lower, since I had already had the juice. They stuck me twice in my skinny, little left wrist in an attempt to find a good vein. I felt this pain, though usually when I am given an emergency IV of glucose I am so out of it that I don't feel anything. The glucose began to revive me, and I was able to tell them my name, address, age, and birth date--information that is beyond my reach when my blood sugar is dangerously low.
I signed a release indicating that I did not want to go to the hospital. I felt dizzy, exhausted, beat up, but I was coherent. My body and clothes were soaked in adrenaline sweat, the sweat of death, of fight or flight, the body's final effort to kick-start action. I took a shower to rinse this smell of death from me, but it remained, and I smelled it on my fresh clothes in the morning.
Yesterday I only tested my blood sugar five times. I will have to make a concerted effort to check it much more often when I am in New York. It's one thing being home, where I have concerned neighbors and a wonderful son. It's another thing being in a big city where no one knows me from Adam.
The fact that I can scream so loud that neighbors hear me is something that surprises me, since I have never screamed in my normal state of existence. It's interesting to note these things about oneself--that there are regions within us that we can access when we need to. Certainly a life-threatening situation like low blood sugar level is one of those times that the body and the mind bring out all that lies hidden during our everyday life in a final effort to avoid death. Last night was just such a time.
By the time the paramedics arrived, I was flailing about on the floor next to Rasputin's kennel. (I had put him inside it and locked the door as I always do. He loves the security and privacy of this small space. He loves being incarcerated when he beds down for the night!) I was screaming, too, and Rasputin was probably getting scared. He barked vociferously at the paramedics, but couldn't reach them to bite.
About the time the paramedics arrived, Aaron arrived home from his restaurant job. The paramedics measured my blood sugar at 40, and it had no doubt been much lower, since I had already had the juice. They stuck me twice in my skinny, little left wrist in an attempt to find a good vein. I felt this pain, though usually when I am given an emergency IV of glucose I am so out of it that I don't feel anything. The glucose began to revive me, and I was able to tell them my name, address, age, and birth date--information that is beyond my reach when my blood sugar is dangerously low.
I signed a release indicating that I did not want to go to the hospital. I felt dizzy, exhausted, beat up, but I was coherent. My body and clothes were soaked in adrenaline sweat, the sweat of death, of fight or flight, the body's final effort to kick-start action. I took a shower to rinse this smell of death from me, but it remained, and I smelled it on my fresh clothes in the morning.
Yesterday I only tested my blood sugar five times. I will have to make a concerted effort to check it much more often when I am in New York. It's one thing being home, where I have concerned neighbors and a wonderful son. It's another thing being in a big city where no one knows me from Adam.
Monday, March 08, 2010
I'm Off to New York!
I have long said that I should make a YouTube video about my life as a dialysis patient because the videos I have seen online don't give a very accurate picture. Besides, the technique I've seen displayed in these videos of hooking up to the dialysis machine is atrocious. Very unsanitary. No surgical masks, no hand washing. I wanted to set the record straight, as well as establish an online presence in case I need to solicit a donor.
Well, my vision is manifesting in a way that I never dreamed possible.
About a month ago, I read a book written by Sally Satel, M.D., who received a living donor kidney transplant before starting dialysis. "When Altruism Isn't Enough: The Case for Compensating Kidney Donors" really made an impression on me. This all made so much sense. Everyone else--surgeons, nurses, hospitals, insurance companies, kidney patient--were being compensated, everyone except the donor. Why not give the donor a tax credit, Medicare coverage for a few years, a scholarship, or some other government-facilitated incentive! This would be a way of thanking the donor for his or her great gift, and this would help solve the dire organ shortage. I won't go into every single argument that Satel makes, but each one is sound. There is no good reason not to compensate donors. (As the law is now, a kidney patient who gives a donor any "valuable consideration"--how's that for vague!--can receive up to a five-year prison sentence. Can you believe it--five years for attempting to save your own life!)
I wrote to Satel c/o the American Enterprise Institute, at which she is a fellow. About two weeks ago, I received an email response. I said I was interested in working toward changing this law that is responsible for many thousands of deaths per year as kidney patients languish on The List, waiting for a deceased-donor kidney that never comes. She put me in touch with Robby Berman, a journalist, activist, and man who splits his time between Israel and the U.S., attempting to encourage Jews to donate their organs upon death and/or to become living donors.
I met with Robby for coffee a little over a week ago when he was in So Cal on business. I made it clear that I was very interested in helping him ease restrictions on compensating donors. Now remember, this is not some rich kidney patients giving cash to poor people for their kidneys. This is government-regulated compensation.
On Friday morning, Robby called to ask if I could come to New York for the filming of an HBO documentary on the sorry state of the U.S. organ supply. Later I heard from Jay, the HBO producer. HBO is flying me to NYC on Wednesday morning, putting me up in a hotel for two days of meetings and filming, then I'm staying on for five more days to see a few sights. Wow!
This is certainly manifestation at its best. My dreams had been rather modest--a home movie-quality YouTube video that would educate the non-dialysis public and would give me a presence in front of potential donors. This is quite a bit more than I requested. I am very grateful.
Well, my vision is manifesting in a way that I never dreamed possible.
About a month ago, I read a book written by Sally Satel, M.D., who received a living donor kidney transplant before starting dialysis. "When Altruism Isn't Enough: The Case for Compensating Kidney Donors" really made an impression on me. This all made so much sense. Everyone else--surgeons, nurses, hospitals, insurance companies, kidney patient--were being compensated, everyone except the donor. Why not give the donor a tax credit, Medicare coverage for a few years, a scholarship, or some other government-facilitated incentive! This would be a way of thanking the donor for his or her great gift, and this would help solve the dire organ shortage. I won't go into every single argument that Satel makes, but each one is sound. There is no good reason not to compensate donors. (As the law is now, a kidney patient who gives a donor any "valuable consideration"--how's that for vague!--can receive up to a five-year prison sentence. Can you believe it--five years for attempting to save your own life!)
I wrote to Satel c/o the American Enterprise Institute, at which she is a fellow. About two weeks ago, I received an email response. I said I was interested in working toward changing this law that is responsible for many thousands of deaths per year as kidney patients languish on The List, waiting for a deceased-donor kidney that never comes. She put me in touch with Robby Berman, a journalist, activist, and man who splits his time between Israel and the U.S., attempting to encourage Jews to donate their organs upon death and/or to become living donors.
I met with Robby for coffee a little over a week ago when he was in So Cal on business. I made it clear that I was very interested in helping him ease restrictions on compensating donors. Now remember, this is not some rich kidney patients giving cash to poor people for their kidneys. This is government-regulated compensation.
On Friday morning, Robby called to ask if I could come to New York for the filming of an HBO documentary on the sorry state of the U.S. organ supply. Later I heard from Jay, the HBO producer. HBO is flying me to NYC on Wednesday morning, putting me up in a hotel for two days of meetings and filming, then I'm staying on for five more days to see a few sights. Wow!
This is certainly manifestation at its best. My dreams had been rather modest--a home movie-quality YouTube video that would educate the non-dialysis public and would give me a presence in front of potential donors. This is quite a bit more than I requested. I am very grateful.
Kaiser Said "Yes"!
The Kaiser kidney transplant board met last Friday to decide my fate. Unfortunately, I was left wondering all weekend, as the transplant coordinator didn't get a fax with thumbs up or thumbs down until this morning. I was given the OK.
Now it's up to the UCLA transplant team to say yes. After that, I will receive an official letter in the mail telling me I'm on The List. Until then, I'm still not on the list, but I'm inching my way closer.
Now it's up to the UCLA transplant team to say yes. After that, I will receive an official letter in the mail telling me I'm on The List. Until then, I'm still not on the list, but I'm inching my way closer.
Tuesday, March 02, 2010
Earning the Privilege to Wait in Line
Yesterday I met with Dr. Phan, my Kaiser cardiologist. The echocardiogram I had on Friday was normal. Hooray! And the size of my heart has decreased to a normal size as well. He followed the lead of my nephrologist, Dr. Butman, and gave me the go-ahead for the kidney-pancreas transplant.
This morning I met with UCLA cardiologist Dr. Le, who approved me for the kidney only. He said that though my heart is much improved, there is still the chance of blood clots during such a complex and time-consuming surgery when you are working on a patient with congestive heart failure. He said it was too risky. He also said that a kidney-pancreas transplant is the most arduous surgery of all.
I asked Dr. Le if I should think of this process as negotiations, that it is better to ask for a kidney-pancreas transplant so that the transplant board can say no to that but then grant me the kidney. He said it doesn't work like that, that the transplant team had asked for his opinion and that his opinion was that I am cleared to go, so they'll accept his opinion. He said he would fight for me if there was any hesitancy. Oh, I was so happy, and so was Dr. Le. He said he had really been rooting for me, but Kaiser had dragged its feet about getting me the bypass surgery. This was news to me. He said that Kaiser is all about saving costs. But in the end the surgery was approved, and I am feeling so much better because of it.
So now that I have approval from Drs. Butman, Phan, and Le, the next step is the Kaiser transplant board's ruling on Friday. Then the final decision is made by the UCLA transplant team.
So though I will probably have to wait a month or so for an official letter of notification that I'm on the list, I absolutely know I'm already there.
It is so funny how happy I am to now have the privilege of standing in line. Can you believe that! Most people are annoyed and angered by waiting in line. I have been working my butt off now for 13 months to do just that!
This morning I met with UCLA cardiologist Dr. Le, who approved me for the kidney only. He said that though my heart is much improved, there is still the chance of blood clots during such a complex and time-consuming surgery when you are working on a patient with congestive heart failure. He said it was too risky. He also said that a kidney-pancreas transplant is the most arduous surgery of all.
I asked Dr. Le if I should think of this process as negotiations, that it is better to ask for a kidney-pancreas transplant so that the transplant board can say no to that but then grant me the kidney. He said it doesn't work like that, that the transplant team had asked for his opinion and that his opinion was that I am cleared to go, so they'll accept his opinion. He said he would fight for me if there was any hesitancy. Oh, I was so happy, and so was Dr. Le. He said he had really been rooting for me, but Kaiser had dragged its feet about getting me the bypass surgery. This was news to me. He said that Kaiser is all about saving costs. But in the end the surgery was approved, and I am feeling so much better because of it.
So now that I have approval from Drs. Butman, Phan, and Le, the next step is the Kaiser transplant board's ruling on Friday. Then the final decision is made by the UCLA transplant team.
So though I will probably have to wait a month or so for an official letter of notification that I'm on the list, I absolutely know I'm already there.
It is so funny how happy I am to now have the privilege of standing in line. Can you believe that! Most people are annoyed and angered by waiting in line. I have been working my butt off now for 13 months to do just that!
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