Heidi's Heart

Sunday, December 19, 2010

More Hospital Photos

Here are a few photos from the morning after surgery. The woman with the mask is Janet, my friend and neighbor. The woman in bed is Brandie, the woman who gave me her kidney. The guy on the cell phone is Constantine, one of my favorite nurses, who hailed from Romania. Look how I'm beaming!

Weight Loss, Bruising, Increased Pain

One of the most remarkable things post-surgery has been the tremendous loss of water weight. I went from 151 the day of surgery to 136 four days following surgery. That loss of excess fluids in itself has so improved my energy. The fluids were constricting my lungs and my heart, wearying me, exhausting me. With those fluids gone, I'm so much lighter and without constriction.

I truly have been struggling with excess fluids for about a dozen years. A lot of this manifested as cardiac symptoms, but the root cause was the buildup of fluids. That's why I have been telling people that this is the best I've felt in 12 years. And, of course, the healing process is far from over. Three months from now, I may just feel like a teenager again.

The bruising of my belly has expanded. Much of my tummy is now black and blue.

And this morning I took two Tylenol because the incision was not just uncomfortable but painful. This is only the fourth time I have taken pain meds post-op and the first time since leaving the hospital.

Tomorrow is another clinic visit at UCLA. Up at 4:20 a.m., leave the apartment by 5, so that I can get to the lab when it opens at 6. Whew!

Friday, December 17, 2010

The Drain Bag is Draining on Me!

During transplant surgery, my peritoneal dialysis tubing was removed. For almost two years I had had a foot-long tube protruding from my abdomen through which I hooked up to tubing from my dialysis machine every night. Since Pinkie, my new kidney, was off to a fantastic start even in the OR, the surgeon removed all this unsightly mess. But he put something similar on the other side of my belly--a length of tubing attached to an avocado-sized plastic bulb to catch blood and fluids post-op, known as the Jackson-Pratt surgical drain, named, I suppose, for the inventors.

For the first week after surgery, I could never go more than two hours without emptying it. Sometimes only an hour. That meant very little sleep.

In the last few days, it has leaked at the exit site, soaking the bandage and wetting my shirt and pants. Some days I have had to change my clothes four or five times.

Plus, pieces of tissue make their way down the tubing and into the bulb, but often they are so thick and large that they block the flow, again causing leakage at the exit site.

Today during my clinic visit, the surgeon said that I should no longer create a vacuum in the bulb by squeezing it tight after emptying. He said that, at this point, healing needs to take place, and a vacuum might be pulling out more fluid and tissue than is conducive to healing. But if there isn't a vacuum, then excess fluid can't escape through the tube and must instead leak into the bandage.

I got the bright idea to use Depends. I figured that I could pull them past the bandage covering the exit site. Even though the bandage may get soaked, my clothes will not get wet because the fluids will be absorbed by the Depends.

Well, so far that's working better than nothing, but not that great. After all, Depends were made for urine, and the exit site at my waist is a long way from that area. There isn't a lot of absorbant material in the waist band because generally that's not where it's needed.

Oh, well, this too will pass, though one cheery friend told me his father-in-law wore a Jackson-Pratt for three months! Even if that turns out to be the case, it'll all be worth it for Pinkie.

Thursday, December 16, 2010

My Poem for Janet

Below is a poem I wrote for my next-door neighbor Janet prior to our surgeries. I hoped that in some small measure this shows my deep gratitude.

For those of you who are good Catholics or perhaps religious studies majors, let me make it very clear that I know the difference between the Feast of the Immaculate Conception (Dec. 8, the day on which I had transplant surgery) and the Annunciation of the Blessed Virgin Mary (March 25). The former entails the conception of Mary without sin, i.e. her parents actually had sex but it was really clean sex and so she was born without sin and remained without sin so that she could be a pure vessel for the baby Jesus. In contrast, the annunciation is when the angel visited Mary and she became "with child" without having sex. But I have taken poetic liberty to intertwine these two in my poem.

Conception and Rebirth

(for Janet)

My mother gave birth to me,

but on this Feast of the Immaculate Conception,

you have given me a second life.

Without you, I would be chained

to a dialysis machine every night until I die,

becoming ever weaker, hardly able to cross the room.

Like Mary, who was touched by an angel

and felt the stirrings of baby Jesus within her loins,
I too sense the beginnings of a new life within me,
awakened through the gift of your kidney,
one link in an eight-person cross-country chain.
This newness in me and in three other patients
Immaculately conceived through the kidneys of four strangers.

Now freed of tubing, tape, and gauze,
without holes in our arms and our bellies,
we will once more hike, swim, lounge in Jacuzzis,
canoe, camp, surf, take baths,
drink as much water as we like,
travel the world with ease,
and get a good night’s sleep.

As a Buddhist, you might see this transformation in a different light,
as a part of you reborn in another.
Because a man outside Philadelphia gave his kidney to a man in L.A.,
I received his wife’s kidney
and you gave one of yours to someone in Virginia,
whose friend completed the chain,
giving to a patient with a rare blood type in San Francisco.

Four rebirths without four deaths.
A miracle in any religion,
in any way of conceiving the world.

Don't Ever Sell the Kindness of Strangers Short

Pictured here is my next-door neighbor Janet the morning after donating one of her kidneys on my behalf. By her side is her equally compassionate husband, Dana. She's wearing a scarf and hat handmade by Susie, the friend who donated one of her kidneys to her best friend's husband in the summer of 2009.

Though I've posted previously about the miracle of strangers stepping forward, this message bears repeating.

In late June of 2009, I moved into the apartment at which I currently reside. I had been walking in the neighborhood when I spied a FOR RENT sign that included the line "pet friendly." Exactly what I had been looking for, since I really wanted to get a dog. During that summer, I had several paramedic dramas and hospitalizations. Janet came to the rescue, scooping up a very protective Rasputin who would not let the paramedics near me. When I was home, we also went for afternoon walks with our dogs. So basically we were friendly neighbors but not yet friends when, six weeks after I'd moved in, she said she wanted to be my donor.

That was back in August of 2009, but I did not get on the transplant list until June 16 of this year. I had to fight and scratch to get there, having triple bypass surgery in November 2009 and then going through the long recovery process following a hip fracture in March of this year. Once I had graduated from a walker to a cane to my own unaided two legs, I started an aggressive cardiac rehab program to get my heart in good enough shape to pass the necessary tests. Finally after I was on the list, Janet could begin her testing to see if she was sufficiently healthy and blood type-compatible.

When we found out that Janet was A blood type and I'm O, we started looking into paired donations. To hedge my bet, Susie wrote a solicitation letter on my behalf. A former student of mine saw it and forwarded it to his friend Cindy in Phoenix, a 26-year-old who up until the end said that she would be my backup if this transplant didn't pan out.

One of the big messages of all this is that you never know from whom help will come. We tend to think that friends and family will step up to the plate, but that isn't necessarily true. They may have fears or hesitations or they may feel that they can help in other ways, such as my son who has been ever-ready to help all along. Had he been my donor, who would have done all the things he has currently been doing? Everyone has his or her role, even if that role seems to be no role. They perhaps are silent, do not send emails or cards, do not call, but are perhaps saying prayers or lighting candles or visualizing positive outcomes. Or they help out afterwards with shopping or cooking or, as I had this morning, a fantastic massage.

The fact that I moved next door to the woman who would donate on my behalf--what are the chances! That two strangers would want to save my life is something that continues to amaze me. The beauty of Janet's gift and Cindy's unflinching offer are miracles in themselves. Of course, add to this the miracle of me even getting on the list--the initial Kaiser transplant panel and the initial consulting UCLA surgeon wanted to nix me, but I was persistent, making my way through about a dozen paramedic dramas, a half dozen hospitalizations, bypass surgery, a broken hip, months of rehab for my heart and my leg, and an unending barrage of doctor visits, nightly dialysis, tests, tests, and more tests. And then to think I survived the last couple months when I was in such dire fluid overload and dialysis just wasn't working any more that I struggled to do the simplest tasks, like walking across the room or getting dressed, all the while doing my best to keep this from everyone. It sure seems as if the forces of the universe were in alignment for me to make this happen.

And then that I should feel so fantastic so shortly after surgery. Several nurses said they had never seen a recipient get up and walk the halls the morning after surgery or seen someone been released in four days, five days being the absolute minimum.

But I feel better than I've felt in more than a dozen years. In the decade prior to the onset of dialysis, my heart was dragging on me. For years I didn't lie down but rather slept sitting up because the weight of my own body on my chest was too constrictive. Everything from walking a few feet to climbing a flight of stairs to doing the laundry was a personal challenge. And yet I was often working 60 hours a week at several jobs, including teaching, freelance editing and writing, and massage therapy. Plus taking care of my mother for two years. It is a miracle I made it through this without keeling over.

So thank you, thank you, thank you to Janet for the gift of her kidney to a man in Virginia so that I could receive one from Brandie, my actual donor. Thanks to Brandie for literally giving me life. And thanks to Cindy for faithfully standing in the wings, ever ready to give of herself should other options fail. The kindness of strangers. Don't ever sell that short.

Wednesday, December 15, 2010

Government Waste, an Up-Close Look

As irony would have it, on the same day that I opened the letter from the IRS, I called Kaiser's peritoneal dialysis clinic to see if I could have Aaron return the unopened supplies so that someone else could use them or so they could be used for training new patients. I was told that I would have to destroy the supplies, that they could not be used by others. I called Baxter, the supply company, and was told the same thing. Baxter said that a driver could pick up the boxes on Jan. 6, but that Baxter would not reroute them. I told the clerk to forget it, I wanted to get rid of the stuff ASAP so that I could be done with my bedroom as a warehouse and get back to my bedroom as a bedroom.

The reason this is ironic is that every dialysis patient in the country, as of 1984, is on Medicare, regardless of age. If you're 2 years old and are on dialysis, you receive Medicare. Here one arm of the government is attempting to take my money, and another arm of the government refuses to allow me to save it money.

And we're not talking about chump change here. Every night for the past 22 months, I used three bags of dialysate at $75 a pop, or $225 in solution alone. I had approximately 30 unopened solution boxes, approximately $4,500! Add to that the fancy, single-use cassettes with tubing to each bag, to me, and to the drain jug, and the unopened extension lines that allowed me to move more than 12 feet from my machine, and the unopened box of 100 iodine-tipped mini-caps that seal the end of the transfer set each morning, and you can see we're approaching five grand, stuffed under my bed and stacked high against the walls of my bedroom.

The only saving grace is that Ed, the friend who came over to help with the destruction, is a resourceful guy who could use some of the tubing, the drain jug, and a few of the very sturdy dialysate boxes. Also, the Baxter rep said the dialysate makes excellent fertilizer, so Aaron emptied a half dozen bags on my neighbor Janet's garden. The rest of the boxes, cassettes, and extension lines were recycled, but four large trash bags with the empty dialysate bags were tossed in the garbage.

I'm sure it all comes down to liability. Seems that's the case in 95 percent of decisions made in this country. Even though the dialysate did not expire for at least another year, even though it had been kept at a consistent temperature that was well within the established guidelines for safe keeping, even though I was willing to have Aaron and Ed do the heavy lifting and return the supplies at no charge to Medicare or the dialysis clinic, I suppose there is the FEAR that I would have opened the boxes, injected some dire substance into the bags, and resealed them again in an evil scheme to take down some luckless souls. Unbelievable.

What's more unbelievable is that with budget cuts, we could easily see a tightening of access to healthcare. Dialysis is an extremely expensive venture, one of the most expensive, if not the most expensive, Medicare costs. Costs driven up by this kind of waste. But when the Government Accounting Office (GAO) or Congress looks at the numbers, they won't see this ridiculous situation. They'll only see that dialysis patients are costing the country an arm and a leg, and that perhaps we should go the way of South Africa or Australia. The former has death panels as was once the case in this country, at which patients must prove their social worth in order to receive dialysis. Otherwise, they're left to die. In Australia, patients over 65 are not given dialysis, but are rather told by their physicians that they are too old to be viable.

What a crazy, mixed-up country we live in! How did things get so incredibly out of whack?

The IRS Can't Take my Kidney!

When I returned home from the hospital late Sunday night, I saw the pile of mail on my desk, but did not begin to tackle it until the next day. There among the cable company promotions (they still don't believe I don't have a TV) and charity solicitations was a thick packet from the IRS.

The IRS contends that my mother's taxes were incorrectly filed in 2008, and her estate--that's me--owes $18,419. A full $4,094 are penalties and interest. My goodness, you can get much better rates from the mob!

This is an ungodly amount, to be sure. A lot of years in the past decade, I haven't even netted $18K after business expenses were deducted.

But I looked at this letter with the same detachment as I did the cable company promos. I have a new kidney, I'm alive and feeling so much better than I have for a very long time, and at least for now, the IRS cannot take my kidney. Either the matter will be resolved and I'll pay nothing or a lot less, or I'll have to pay it off slowly over the course of my remaining years. But in either case, I am thankful to be alive. The bastards can't take that from me, though I believe that's the course down which we're heading.

Now that the super rich have gotten their tax cuts, the budget cuts will begin. More people will be made homeless, more people will starve, more people will receive inadequate education and therefore be stuck in low-end jobs, more people will die from lack of services. But it is so important that the rich get richer. That's what it's all about--reverse Darwinism, not survival of the fittest but survival of the most pampered and therefore the least strong.

Sunday, December 12, 2010

I'm Blowing This Joint Tonight!

Just heard from a very good-looking surgeon that I am being released tonight. My blood sugars are in decent control. I'm peeing up a storm. My creatnine level is in the normal range. My neck shunt has been removed, and the IV will soon follow. All is good.

Aaron is cleaning up the apartment, as he told me "it's a real mess." Then he's driving to UCLA to take me home to my own bed.

Doubtless I'll stay with Susie at some point when I'm attending clinic visits, but right now she's been doing so much for so many people, that I don't want to put anything more on her.

Thanks to all who have sent their love, their support, and their prayers. And thanks especially to the inner circle in the greater Long Beach area who have volunteered to help with grocery shopping, cooking, cleaning, rides, and laundry. This means an awful lot.

Saturday, December 11, 2010

Me in my Hospital Gown

Well, here are a few of the hospital photos. Not my cutest outfit, but look at that color in my face and the glow in my eyes! And these are taken on my first morning, post-op.

One with my wonderful surgeon, Dr. Veale.

Also Michelle, a former student of mine, who visited with me for a few hours this afternoon.

Not All Fun and Games at the Hospital

Another sleep-deprived night. The first night my vitals--blood pressure, blood sugar, temperature, oxygen--were checked every hour. The last two nights, every other hour. But that doesn't tell the whole story.

The insulin infusion is set to alarm every two hours to remind the nurse to check my blood sugar and then adjust the infusion setting. So sometimes the alarm rings for 20 minutes before she responds. I asked the charge nurse why the alarm can't ring on the nurse's watchband rather than in my ears. Oh, no, that's not possible, even though the nurse assigned to me only has one other patient--the kidney transplant patient next door to me.

Also, the damn heart monitor had to be changed out because it was constantly alarming for no reason. Then the replacement started alarming every 10 minutes. Finally someone had the bright idea to shut the alarm off.

Then the nurse had to clean my neck shunt of old blood at 4 in the morning. She took blood from the shunt at 5, but that was too early, so she had to take it again at 6. In between her checks of my blood sugar at midnight, 2, 4, and 6, the nurse's assistant came in on the off hours to check the rest of the vitals. Why couldn't these things be coordinated?

I have complained mightily to the doctors. Sleep deprivation is antithetical to health. It is during sleep that the body heals. A sleep-deprived person is open to stress, infection, and illness. And I am especially susceptible to all of these now that I'm on immune suppressants.

What's more, I have seen serious lapses in cleanliness, and I've called them out. I don't care if they think I'm a complaining bitch. The nurse comes into my room, washes her hand, puts on gloves, then begins touching the door, the cabinets, the computer, then wants to touch me. So I ask her to change her gloves before she does that. The worst was the gal who helped me wash up yesterday. I have so many lines and tubes attached to me that it's very hard to maneuver. She took a washcloth to my catheter and wiped around down there, then took the same washcloth to clean off the lead to my heart monitor, which was dangling at my knee, then to my horror, she puts the very same washcloth back inside me!

Yesterday I thoroughly cleaned my room, something I've taken to doing as soon as I feel up to it in the hospital. I got a canister of Chlorox beach wipes, put on gloves, and started wiping everything down--chairs, bed rails, cabinets, drawers, sinks, door knobs, light switches. I also picked garbage off the floor. You can't count on housekeeping to do any more than changing out the trash receptacles and taking away the dirty gowns.

Add to this, the bed is not at all comfortable. I was in it the first two nights and got a bad back ache. A nurse said this is partly due to the way a body is splayed during surgery. The arms are hooked above the head so that the surgeons don't have any loose skin or folds to deal with. On Thursday night I was more comfortable walking the hallways than lying in bed. Last night I tried the recliner. It was better, but still produced a back ache around 4. I could really use a good massage.

I finally got something by mouth yesterday night--two cups of beef broth. This morning, I had jello, grape juice, and chicken broth for breakfast. Such a treat after days of not eating or drinking.

One other thing: There was some thought that I might have had a heart attack while in surgery. Tests were run Thursday to check the level of a heart enzyme that is released during an attack. Thankfully, my level was normal.

Friday, December 10, 2010

Post-Transplant Update

My exhausted, overworked son just drove up to UCLA to bring me the laptop and some other items. He didn't stay long because he has to work at 9 a.m. tomorrow at the restaurant, then work a banquet somewhere else tomorrow night. Then he's up early again on Sunday to wait again.

Today was Day Two Post-Transplant. One of the surgeons took off my bandages this morning. The incisions are fairly small. One for the removal of the peritoneal dialysis tubing that protruded from the left side of my belly button for 22 months. Another along my bikini line for the insertion of the new kidney. And a third as a drain line on the right side of my tummy that is currently attached to an orange-sized drain collector that's pinned to the inside of my hospital gown. Dr. Veale, the main surgeon and a real cutie, never uses staples, only dissolvable tape. Thank goodness. I had staples with my hip-femur surgery in March, and the aftermath of the staples still hurts. But the good news is: I have my cute, little belly back! No more gauze, tubing, or tape. No more transfer set to hide in my underwear or under my shirt. Yippee! No more dialysis!

Wednesday, the day of the surgery, Aaron drove me to UCLA and stayed with me until I was wheeled off to the OR. Though the anesthesiologist had promised me up and down the day before when I spoke with him on the phone that 1) they would put the shunt into my neck after I had gone asleep, and 2) that the breathing tube would be removed before I woke up, as I was taken to the OR, I got the real story: the former would occur when I was still awake, and I probably would still have the breathing tube in me when I woke up.

I had been pretty darn calm up until this point, but these two pieces of info really disturbed me. Following heart surgery last Novemeber, I had been so traumatized by the tube down my throat after I had woken up. I had frantically tried to pull it out, thinking that the hospital staff was set on suffocating me. Then I went through the trauma of having my mother intubated against her will when she was taken to the ER last December before I could intervene and then having to go through the anguishing process of having the tube removed.

Thank goodness I remember precious little of the recovery room or the journey to my room. I was in a morphine dream. Susie was with me in my room until 11. Aaron had gone home as he was exhausted and not feeling well. Through my daze, Susie's coat kept changing texture, color, and design, with a preference for jiggling swirls.

Robby, who had been involved with me on the HBO documentary about kidney donation, was in the waiting room with Susie and Aaron when Dr. Veale came out to talk about my case. Aaron said he was my son, Robby said he was my cousin from New York (!), and Susie said, shucks, she was "just" a friend. Dr. Veale said the kidney upon placement had really "pinked up"--a good sign. He said, as he has said to me many times, that to look at me, you'd never know I had such a history and such calcified veins. But because I had had the CT scan done at Kaiser prior to surgery, he had a good idea of where my best veins were, so he didn't have to do a lot of cutting and hunting around. All looked good.

Robby also visited me the next morning before he flew back to New York. (Yes, that part of his story was accurate! Funny guy!) Of course, when I had eye surgery, Heather introduced herself and Tom as my sister and brother, so perhaps it's standard fare with my friends to want to be literally part of my family.

Susie also visited with me after work yesterday. She even donated blood in my name prior to surgery. She is an amazing woman. Remember, she donated one of her kidneys to her best friend's husband in the summer of 2009.

I was up and walking the floor yesterday. My nurse, Constantine from Romania, said that in his eight years working at UCLA, he had not seen a patient as active as me post-transplant. I feel so much better than I have felt the last few months. And it has been stressful keeping how awful I've felt from everyone--doctors, friends, family, Aaron. I was sleeping with my head elevated on four or five pillows. I had trouble crossing the room. Excess fluids were building up, despite me using strong dialysate. I really struggled doing the laundry, carrying my massage table, taking Rasputin for walks. I frequently had to lie down and nap. I really didn't want to say anything to my doctors because I was afraid of being taken off the transplant list. I didn't want friends and family to know because they might think I shouldn't get the transplant if I was in such bad shape. And I plain didn't want to worry Aaron. Now it feels so cleansing to tell the truth--even to the transplant team.

What a miracle: My skin tone has vastly improved. I have gone from pale and sallow to blushing teenager. And my energy level is so much better. I have walked farther in the past two days than I have walked in the last few weeks. And without fluid pushing on my lungs and heart, without chest pain.

I met Brandie, the 36-year-old from Newbury Park who wanted to give to her husband but was not compatible, so I received her kidney. Her husband, Conrad, was staying in the room next door to her. I have been over to their rooms many times in the past few days. Brandie was feeling poorly, just as Susie had felt post-donation, but Janet was in great shape. She left in the early afternoon yesterday in good spirits. UCLA has a nice hotel where she and her husband, Dana, were put up last night. They visited me today before they left for home. UCLA had presented Janet with a thank-you basked of goodies, including a pin that reads "Everyday Hero." Instead of keeping it, she said I should have it. She said she is just put out for a few weeks of her life, but I have gone through so much all my life and will continue to do so. That was really touching. As with so many minutes during the last few days, tears were very close, but somehow they didn't quite fall.

Received a lot of calls today--even from Marie in France. Sure like hearing from everyone.

A lot of changes in my life are yet to come. A lot of restrictions. Like I sure wish I would have known I can never have sushi again. I would have had a feast the night before surgery. Must be very very careful about infections. I have developed thrush in my mouth, something that is in everyone's mouth but rarely manifests as one's immune system attacks it. But mine is in hibernation so as not to attack the new kidney.

My immune suppressants were reduced today as the standard dose is too strong for me. That's a very good sign. The fewer immune suppressants I have to take and still be able to keep the kidney, the better.

I am still hooked up to three IV lines, down from five yesterday. Still have the catheter for my urine and a continuous heart monitor. A whole lot of spaghetti. And the neck shunt is staying in. It's how they draw my blood. They're a bunch of vampires here, for sure. I told Aaron people are admiring my crazy boot-slippers and dangly earrings when I walk down the hall. He said, "I think they're looking at the tube in your neck, Mom." I said, "You're probably right. It's so punk." (Pictures coming soon, watch out.)

Tuesday, December 07, 2010

High Noon

I heard from a UCLA scheduling nurse this afternoon: My surgery is scheduled for noon tomorrow.

I have been extremely calm up to this point, as there have been so many junctures at which the whole thing could have been called off. But now that it is this close, I have a very strong feeling it's going to happen.

My last night on dialysis! Yippee!

Is Obama a Republican Lackey?

Once again, Obama has caved. This time it's extending tax cuts for the rich. I called this more than a month ago. I mean, you could have made a very good living betting against Obama's campaign promises and his beautiful-sounding rhetoric since he became prez. Let me mention but a few:

* repeal of the Patroit Act
* reinstatement of habeas corpus
* closing of Guantanamo Bay
* trying suspected terrorists in civilian court
* protecting the middle class
* preventing industry from moving overseas
* working on behalf of working people
* halting extraordinary rendition
* protection of citizens' constitutional rights
* supporting Main Street, not Wall Street
* Medicare for all
* protection of whistleblowers (like Bradley Manning and Julian Assange)

Oh, yes, Obama sounded great on the campaign trail, and he continues to snow his apologists both at home and abroad. But if you look at his record, it is one of caving, often before he even gets to the bargaining table. When he was running for president, he put forth a center left agenda, but as president, he is center right and often slipping into full-on right.

I was always skeptical of him, and I voted for the other African American candidate, Cynthia McKinney, former congresswoman from Georgia and a real fighter. I have the feeling that she would not have laid down and played dead every time the Republicans wanted something. After all, remember her skuttle with Capitol Police.

I know that many of you are skeptical of conspiracy theories, but I can find no other explanation for Democrats' willingness to give in to Republicans at every turn. A Democratic congress that didn't say "boo" to Bush's invasion of a country that had done nothing to harm us, to the Patriot Act, to torture, to the illegal detention of thousands of people post-9/11. Dems were in the majority but you would have thought they had no leverage whatsoever.

The same is true for extending tax cuts for the super-rich. Why didn't Obama hold out, let the tax cuts expire for everyone, then after the new congress takes their places, Dems could introduce tax cuts only for those making less than a quarter mil? That way, if the Republicans opposed, they'd be seen as the enemies of the middle class.

I often wonder if Obama and Clinton are in league with the Republicans while giving Democratic principles lip service. Look what happened on Clinton's watch: NAFTA, which put a nail in the coffin of America's manufacturing; further deregulation, including that of the banking industry, which brought about the crisis we're in today; and the 1996 Telecommunications Act, which buried the Fairness Doctrine forever, thereby finishing the work of the Reagan administration. I wonder if Democratic presidents are pulled aside on their first day by the powers that be--the IMF, World Bank, Federal Reserve, Trilateral Commission, big bankers, and multinational corporations--and told that they have to do what's in the best interest of world domination by the super-rich. That was nice, all that talk about helping the people, but now they're presidents and they have to tow the line.

Clinton at least made a bit more show of it, putting on a good front that he actually supported Democratic principles. But Obama just says progressive things, then immediately implements policy that further erodes the Constitution, destroys the American workforce, and funnels even more money to the super-rich. Obama is such a sell-out, yet a good many people still support him. This reminds me of a woman who is beaten by her husband, yet when someone points out to her how awful her situation is, she heartily defends the man.

I would love to see the Shepard Fairey poster of Obama changed from "HOPE" to "BETRAYAL." That would be far more accurate. Perhaps some entrepeneurial soul will do so when Obama runs in 2012.

Thursday, December 02, 2010

Green Light from UCLA!

While I was on my way to LAX this morning to pick up my friend Chris, who was returning from a trip to Singapore and Cambodia, I received a call from Suzanne, the transplant coordinator from UCLA. She said that all eight participants have received medical clearance for surgery. She said that there is always the possibility of a glitch, but that as of this writing, all systems are go. She said that my friends and I should pray that all goes smoothly.

Yes, please see all moving ahead smoothly. All four donors proceeding with their promises. And all four recipients receiving the kidneys that were promised. Please hold this vision. Yippee!

Wednesday, December 01, 2010

Bring Them All Home

So much hand-wringing is going on in this country about the deficit. We can't give unemployment benefits to 2 million Americans because it would add to the deficit. And we have to cut Social Security and Medicare payments. But of course we have to continue to give tax cuts to the rich. This is all so incredibly ridiculous and cruel.

What we need to do is bring all our troops home. And let's include the contractors in that group too. Let's close the 170 some bases we maintain throughout the world. Let's end the wars in Afghanistan, Iraq, and Pakistan, and let's not start wars in Yemen, Iran, or North Korea. All our messing with the world's peoples makes us far less safe than if we would just mind our own business and stay home. The CIA itself said that the world is less safe because of our so-called war on terrorism. It has given would-be enemies of the U.S. a reason to become real enemies.

This would solve the budget deficit in one fell swoop. The military, after all, takes up more than 50 percent of our budget. Remember, folks, that the U.S. spends more on its military than all the other countries of the world combined. What are we so damn scared of!

Instead of these men and women killing people in other countries or messing with the affairs of other nations, they could be home building infrastructure, cleaning up toxic waste sites, policing the borders, and helping out in disasters. We could turn our military into a works projects corps. This would improve this country and make us safer since we wouldn't be prone to attacks from people seeking revenge for the wrongs done to them. Such a simple solution, but no politician has the guts to propose it.

Dragging

Today was a day like so many in the last few months--wearying. All that I accomplished was taking Rasputin for two short walks and doing four loads of laundry. And this tuckered me out.

Again today I felt an upwelling of fluids into my chest whenever I'd do the slightest bit of exercise--like walking across the room. These fluids put pressure on my chest, making it difficult to breathe and giving me an overall feeling of constraint and constriction.

I would carry a load of laundry to the laundry room behind my apartment, stop and take a rest, load the laundry into the wash machine, take another rest, carry the dry laundry into the apartment, sort it and hang it up, then lie down to take a half-hour nap. That was my day. Rasputin, of course, is a big believer in naps, so he snuggled next to me.

I keep thinking that once I get a kidney transplant, I'll be able to walk across the room with ease, do simple tasks like the laundry with no sweat, and even have enough energy to hike and surf again. Wow, wouldn't that be something!

Tuesday, November 30, 2010

A Day of Waiting

Today was one of many, many days of waiting in the transplant process. Since I won't have a go-ahead for my own test results until Thursday and probably an overall go-ahead concerning all the participants in the transplant chain until Friday, there is not much for me to think about. Though I sent out a mass email that told friends things look good, there is still no definitive "yes" to surgery.

I had to make a few calls about the CT scan of my abdomen that UCLA requested. I have an appointment for 8 tomorrow morning. And I had an appointment with a pulmonologist, who prescribed a nasal spray to help dry up my mucous. He gave me a letter to fax to UCLA, stating that from a pulmonary standpoint, I am good to go.

Last night I lost another 2 pounds during dialysis treatment, but I must still have more to go. Though I can walk much farther than I could just two days ago, I still feel an upwelling of fluids and the resulting pressure on my chest upon exercise. I would feel so much better if I felt no fatigue or pressure upon walking. That would be the best way to enter surgery.

Gnomes Take on the TSA

A few nights ago, I finally got around to the filming of a promotional video I had roughed out a long time ago. Aaron is the camera man. I am the actress.

Perhaps now that the TSA is under justifiable attack for violating the Fourth Amendment to the Constitution by irradiating travelers and feeling them up, Gnomeland Security t-shirts will receive their due.

Sure would appreciate you accessing the following youtube link. I get a terrible case of the giggles at the beginning, so much so that you can see a tear in my left eye even once I finally settle down. But as I offer as an excuse in the video, "I haven't acted in a long time."

Have fun with this Gnomeland Security video and please make it viral.

http://www.youtube.com/watch?v=sT60tziiGRk

Monday, November 29, 2010

Great Acts of Love

This afternoon I called Cindy, my potential donor in Phoenix, to report to her about my day at UCLA. Turns out, Suzanne, the paired-donation coordinator, had called her earlier to tell her that she and I are compatible. Cindy told Suzanne and she told me that she is still onboard, should something fall through with the proposed four-way exchange.

I feel so blessed! Last June to have moved next door to Janet, the woman who would just two months after meeting me, say that she wanted to be my donor. And then, because Janet and I are not compatible, I solicited help to find another donor and Cindy stepped forward. Cindy, the friend of a former student of mine, but besides that tangental connection, a stranger.

The kindness and selfless generosity of two strangers has gotten me this far, and I am very thankful to both Cindy and Janet. Of course, by now, Janet has become a friend, but her initial offer came when we barely knew each other. These two women speak loudly of the goodness that is inherent in the human species. Too often we focus on the awful things humans do, but we are also capable of great acts of love, even toward strangers.

Good News from UCLA

I was at UCLA most of the day, getting lab work done, taking an EKG, having chest x-rays, meeting with the transplant coordinator, the nephrologist, and the surgeon, and filling out admissions paperwork. I won't know the results of the final cross-match and the EKG until Thursday, but as of this writing, things look provisionally good.

There is still some concern about my heart. Due to fluid overload and perhaps due to a lingering infection and/or an allergy, I have had difficulty exercising, since excess water has made my abdominal cavity as tight as a drum, thereby putting a lot of pressure on my heart. Last night during dialysis, I was able to pull off 8 pounds of water weight, and yet I am still edemic. Dr. Wong, the UCLA nephrologist, said that I should continue to use strong dialysates in order to pull off more water, even below my so-called dry weight. Just having lost the 8 pounds last night, I feel a big difference. Walking across the room has been difficult for the last few days, but today I walked up stairs and much longer distances with little problem.

My surgeon, Dr. Veale, wants to check with UCLA cardiology to get its go-ahead. I sure hope this is a hand-waving or a cursory appointment that would mean another trip to UCLA this week.

Interesting that both doctors checked my lungs. One found evidence of water on the lungs, the other didn't. The subjectivity of medicine.

Dr. Veale said I looked great, that he wasn't used to seeing patients look as good as I do, and that it was hard for him to believe that I am the person who has such a long, arduous, and complicated medical history. That was nice to hear.

I asked Dr. Veale if there was any way that he could minimize the cut he'd have to make. He said that, given my history, there is a strong possibility that he'll make a cut on one side but will be unable to find any good veins with which to connect the transplanted kidney. That will mean he'll have to make a cut on the other side, hoping to find good veins over there. I asked if there is any way he can find out where the good veins are prior to surgery. He said, yes, with a CAT scan. He said most of his patients are overweight and so aren't concerned about scarring, I guess because their fat covers up the scars. He said he would love it if every patient was given pre-op CAT scans, but they're around $3,000. I asked if he could write the request in such a way to highlight the medical necessity of knowing where the good veins are so as to minimize the risk of infection and excessive bleeding and to reduce the time in surgery. He said he'd give it a try. The fewer cuts on my cute, little belly, the better.

Found out that my donor is a 36-year-old woman who wished to donate to her husband but was incompatible with his blood type. So I'm getting a young kidney. More good news.

The most wonderful news Dr. Veale saved for the end of our visit. He said that recent research, soon to be published, shows that the transplantation of islets of Langerhans, the cells that are responsible for the insulin-producing function of the pancreas, is now just as successful as transplantation of the entire pancreas. Moreover, the former does not involve surgery, only an outpatient visit in which a syringe full of the cells is injected into the body. They adhere to the liver and begin functioning, producing insulin so that the patient can be free of shots or, in my case, an insulin pump! Transplantation of the pancreas, on the other hand, requires about six hours of surgery, plus the accompanying risk of injection and bleeding, in addition to weeks of recovery. Wow, to think that by this time next year, my body would be producing its own insulin for the first time in 40 years!

So as of this writing, all looks good. Should know for sure by Thursday. Thanks to all who have kept me in your thoughts and in your prayers. Please keep those good vibes coming.