Good News!

I spoke with Fe, the transplant coordinator at Kaiser, and she said that Janet and Bob are compatible and that Maria and I are compatible. So that means that we can do a paired donation!

So strange that I had to make a bunch of calls in order to get this information. You would have thought that the coordinator would have called me as soon as she knew. Or that the donors' coordinator would have called them. This is big news for us recipients and donors, but I guess it's just another case to handle for the coordinators. This is so typical of the medical profession. Why people were sitting on this information is beyond me.

Maria, Bob, and I are all cleared to go. We're just waiting for Janet to complete and pass her round of tests on June 16 and 17. If all goes smoothly, I could have a new kidney--Maria's kidney--by my birthday. The best birthday present ever.

So the timing of my trip to France is perfect. I leave the evening of June 1 and return the evening of June 15, the day before Janet begins her tests. Everything seems to be falling into place. Amen!

Thank God for Heartburn!

Since my hospital stay in Fontana a little over a week ago, I have continued to experience chest constriction and tightness, especially while lying prone. On Monday morning, I couldn't take the stress of this anymore, so I drove to the ER. I was worried that I was having cardiac problems and that these would prevent me from getting a kidney transplant. This was all that I could think about, so I wanted some answers. What was going on with me?

The docs at Harbor City Kaiser did a bunch of EKGs and tested my troponin levels every four hours to see if there were any signs of a heart attack. Then on Tuesday I was given a radioactive dye, underwent a resting and a stressed heart test, and had images taken of my heart. I experienced fairly intense chest pain during the stressed portion and had difficulty breathing. This really worried me.

A few hours later I got the results: no sign of any new damage to the heart! The docs felt I was experiencing intense heartburn or perhaps gastoparesis, the latter of which diabetics often succumb to. Right now, I am taking an antacid for 14 days and avoiding acidic foods and beverages. Gastoparesis can become quite serious and entail surgery, but I'm going to see that it doesn't get to that point.

I am so incredibly grateful that I have no more heart damage. I was going down such a negative road in my mind, while simultaneously praying for good news. I'm so glad the latter approach triumphed.

I am also glad that I did not listen to the doctors last weekend. I was getting the message from my cardiologist, the hospital cardiologist, and the hospital nephrologist that I should just take the blood transfusion and get the stress test immediately or get an angiogram. But I decided to wait until my hemoglobin had improved, then take the stress test. I am so glad I stood up for what I felt was right. Otherwise, I would have either had a blood transfusiont that could have jeopardized my chances of accepting a kidney or underwent an angiogram that is fraught with risks.

So, hooray, hooray, hooray!

Medical Emergency at 7,200 Feet

This past weekend was the 12th annual chick cabin getaway weekend. I arrived at about 11 a.m. on Saturday and was immediately in trouble.

Green Valley Lake, located in the San Bernardino Mountains west of LA, is at 7,200 feet. No one had cautioned me about high elevations, and it didn't cross my mind that attending chick cabin only six months after triple-bypass surgery might pose a problem. Well, it did. Immediately upon my arrival, I was struck by severe chest pain and constriction. I laid down, but that didn't help because lying prone put even more strain on my heart.



When Susie arrived about 20 minutes later, I told her I'd have to drive down the mountain. She didn't think I should do that on my own and took me to the GVL fire station, where I received oxygen.

I knew my blood sugar was high and suspected that my insulin pump's infusion site was not delivering insulin to my body, but I was in no shape to change my site. Unfortunately, I did not receive an insulin injection until five or more hours later in the ER at St. Bernadine's in San Bernardino. By that time, my blood sugar was over 500.

The GVL station was not equipped to handle me, so an ambulance took me down the mountain. Some of the chick cabin gals followed in my my truck and in Susie's vehicle. Laurianna, a firefighter in New Mexico, helped by getting a list of my meds. The paramedics were such nice guys. Aren't they always! Scott tried to get an IV in my left arm while we were twisting down a winding mountain road and failed. He then asked me if I'd ever had an IV in my neck, and I told him that for sure we're pulling over if he's thinking of doing that!

Next came three sublingual doses of nitrogylcerin and an infusion of morphine. That got the chest pain under control for a while. By the time we got to the ER, I was feeling much better, so my friends left without me asking them to get my blood monitor and insulin supplies from my truck. I could have kicked myself for that, since my blood sugar was not regulated until noon the next day. If I had been able to get my insulin pump working, I would have been in much better shape much sooner and would have prevented much of the chest pain.



I was transferred to Kaiser Fontana on Saturday evening and stayed there until Monday evening, when Aaron and Rasputin picked me up. (Heather had driven my truck back to Long Beach as I hadn't known if I would be transferred to Downey, and I didn't want to have to worry about the truck.)

Heather called and left a message on Saturday night. Unfortunately, I was talking with a doctor and didn't take the call. Heather said that the only phone that worked at the cabin was Susie's, so I called Susie back. Unfortunately, I called her home number, not her cell. I must have left a dozen messges on Susie's home phone--all messages that she didn't retrieve until she got back to LA! I also left a bunch of messages on Heather's cell, just in case she got to a place in the mountains where she could retrieve them. I was alone and lonely, and I really wanted the support of the chick cabin girls.

Early Sunday afternoon, a doctor told me that my triponin level had continued to increase and was now in the borderline region between questionable and probable heart attack. This set me over the edge. I simply could not face the possibility of being on dialysis for the rest of my life because of a cardiac event.

The docs wanted to either perform a nuclear-medicine stress test or an angiogram to see if there had been any new damage to the heart. I was against the former as it would require a blood transfusion, which means the possibility of antibody formation, which would complicate or preclude a kidney transplant. I was anemic, with my hemoglobin at 9.6. In order to safely perform the stress test, I'd have to be at least a 10.

The angiogram is far more invasive and carries the risks of heart attack, stroke, or death. Besides, the dye can damage the kidneys.

After much hand-wringing, crying, and consulting with doctors, I opted to leave the hospital, up my procrit injections to stimulate blood-cell formation, test my hemoglobin in a week or so to see if it is 10or more, and if so, take the stress test. Getting all this done before leaving for France on June 1 is another matter.

My belief--and I'm holding to this--is that this was a perfect storm of high altitude, high blood sugar, and anemia, any of which taken alone can cause chest pain and constriction. I am holding to the belief that this was not a heart attack or anything else that might jeopardize my placement on the list. I will get on the list, stay on the list, and receive a successful kidney transplant.

How Much is My Life Worth?

My friend Daphne sent me a link to a CNN story about California's new living-donor registry and New York's interest in an opt-out organ-donation program. Instead of people having to explicitly state that they wish to donate their organs upon their death, the state would assume that you do unless you opt out.

The comments on this story were fierce--on both sides. It's amazing to me how many people are concerned about what happens to their bodies after they're dead. As one sarcastic commenter wrote, if you need to be buried with your organs, maybe you should also be buried with all your wives and your slaves. That was pretty funny, but some of the comments weren't. One that especially disturbed me was someone who wrote that transplants should not be performed because they're too expensive. The father of a young boy who had been on dialysis for eight years before receiving a kidney transplant shot back that dialysis is far more expensive than a transplant. The first commenter didn't respond, but I can imagine him saying, "Well, then dialysis is also too expensive, so we shouldn't allow that either."

This made me wonder: How many people would vote to turn off my dialysis machine? How many people would prefer that I was dead? Am I wasting taxpayer money (since all dialysis patients are on Medicare)? Is my life worth the money that is being spent on keeping me alive? Do healthy people think of sick people as useless or as too expensive to keep going or as better off dead? What would I have to do in order to make myself valuable enough to be considered worth saving?

I don't have answers for these questions, but the pondering of them made me very sad. This general dismissiveness of the world was coupled with dismissive comments earlier in the day from someone who let me know I had disrupted his day by calling him. Perhaps part of the inconvenience or discomfort he felt was due to me being a dialysis patient or a diabetic or a heart patient or someone with a broken hip. One of those people who, in the opinion of some or many in our society, is wasting money that could be better spent elsewhere. Perhaps on buying more killer drones for use on Pakistani civilians or giving more money to Wall Street bankers or building even more prisons. Yes, there are so many ways to facilitate death.

Officers' Club in Ruins

Aaron had to work until 4 on Mother's Day at Parkers Lighthouse, where he now waits two or three days a week, so Rasputin and I checked out the Great Park in Irvine.



You are really setting yourself up for criticism when you name something "great," and the Great Park in Irvine is no exception. I had not heard much about it, except my friend Bev's disparaging words. I wanted to see for myself.



A Turkish festival was being held Mother's Day weekend at the Great Park, and initially I had thought of attending. But upon walking up to the venue and seeing that it was primarily a carnival and that I'd have to pay $12 for admission beyond the $5 I had already paid for parking, I thought better of it. Instead, Rasputin and I explored the ruins of El Toro Marine Corps Air Station, the approximately 4,700 acres on which the Great Park is situated. Officially closed in 1999, the base had initially been considered for a new airport or a housing development. After much back-room wrangling, a park was born.



One thing I had heard of the Great Park were the free balloon rides. Though it didn't seem as if anything was going on in that department, Rasputin and I walked over just to make sure. The balloon was tethered to the ground, and no one was waiting in line for a ride. Would like to try that some time, but Mother's Day was not the time.



I had heard of high hopes for the park, but what I saw was a bunch of dead and dying grass and buildings in various states of decay. Some structures were fairly intact; others were nothing more than cement foundations and a few concrete steps. No playground equipment, no lakes, no hiking or bike trails, no picnic tables. Just a bunch of grass and a few parking lots.



The first and biggest building I checked out was some kind of huge warehouse. I didn't go inside, as I couldn't find an unlocked access. That would have been quite surreal walk about in a warehouse the size of several football fields.



Near the park's entrance was the former officers' club. Though the main entrance was chained and locked, a side door was not only unlocked but open. Rasputin and I entered. Though most of the walls had been stripped down to the framing and the carpet had been removed, I was amazed to see that so many chairs remained, that the glass ceiling had not been damaged, and that a few framed pictures still hung on the walls. Especially since I did not see any NO TRESPASSING signs or warnings that it was a federal crime to destroy former military property. Also, I saw absolutely zero security personnel, unless you include the young guys at the gate directing traffic.



I love to explore ruins, and this was a bunch of fun for me. I especially enjoyed standing in the relatively intact bar and thinking that a little over a decade ago, this had been a hopping spot. This was so much more fun than a crowded festival or an overpriced, hurried Mother's Day brunch.

Dialysis Invades my Dreams

Last night for the first time that I can recall, dialysis entered my dreams. I had two dreams in which I had to explain to a humanitarian aid coordinator why I had not reported to a remote third-world site to help with relief efforts. I explained that I was a dialysis patient and that travel to such an area under conditions without electricity for my machine and a source of clean water was dangerous for me.

Over the decades, diabetes has often figured in my dreams. I am offered a piece of candy, say, and immediately the thought comes to me that if I eat it, my blood sugar level will rise. Or perhaps I eat the candy in my dream, but all the while I'm fretting that I will pay for this in high blood sugar. Whenever I'd awake and recall these dreams, I'd realize how deeply embedded in my consciousness this disease is. Even in sleep, there is no escaping it.

Then I had a dream about 11 years ago in which I slowly and almost sexually consumed a fine chocolate. The experience was luxurious, extravagant, and completely devoid of any pangs of guilt or worries about blood sugar. Simply the delicious pleasure of delighting in the texture and flavor of this morsel. I took this dream as a sign that I would soon be healed, that my inner self no longer knew me as a diabetic and that very soon my physical form would respond in kind.

That did not happen, of course, though I believed it with all my heart and soul.

Thanks to All the Childless Women

On this Mother's Day, I would like to say a big thank you to all the women who have not had children. If you had, the world would be much more crowded and a much uglier place.

For the record, I love being a mom and I love my son. I am very happy I am a mom. And I'm sure a lot of moms out there are happy they're moms too. But that's not the point of this post.

I know it is hard for you sometimes when people ask if you have children or when they wish you a happy Mother's Day, not knowing your situation. I'm sorry too for all the people who have asked you over the years when you're going to have children or why you didn't have children--as if it's any of their business. And I know that this holiday for some of you or sometimes for all of you is as much of a downer as Valentine's Day has so often been for me.

If I were the dictator of the world, I would perhaps allow everyone to have replacement children--that is, two for every couple. Anything beyond that would result in penalties or huge tax disencentives. In fact, I would give women who choose not to have children a tax break for every year they are childless.

If you look at my ex-husband, his new wife, the love of my life, and me, Aaron is the only progeny. So we're at only 25 percent replacement rate.

If there were far fewer people on this planet, so many problems would disappear or be greatly diminished. Pollution, consumption of resources, unemployment, racial and ethnic tension, overcrowding, poverty, illiteracy, starvation and malnutrition, erosion, deforestation, street crime, subjugation of women, child labor, drug and alcohol abuse, spousal and child abuse, and war all stem, at least in part, from too many people sharing too small a space.

So thank you to all the women who have not contributed to these problems by adding more mouths to feed.

What a Shirtless Man Can Do to Me

Yesterday morning before I left for work at the spa, I rang my neighbors' door to see if they would care to have Rasputin for the day, since Aaron was also working Saturday. It was a little before 9, and the husband answered the door shirtless, in sweat pants, and with rumpled hair. He's good-looking, good guy who is trim, intelligent, and has a sense of humor. After he said yes and we exchanged some pleasantries, I went off to work with a tear in my eye.

It's not my neighbor per se. Sure, he's a great guy, but it's more the overwhelming sadness that I felt seeing him standing there, knowing it's been more than 10 years since I loved a man who really seemed to love me, that it's been that long since I woke up to a man's bare chest. And even more than that, I thought that I'll never have that again in my life. That's really hard to take. That because of my diabetes or my kidney disease or the dialysis or the heart surgery, I'll keep being rejected or not even considered. And of course, once I have the transplant, I'll have so many scars on my body that I'll look like a hacked piece of meat.

As I was doing my first massage of the day, I thought, Once I get the kidney transplant, I'll be free of the dialysis tubing. Then I can get a bunch of tatooes, maybe intersecting vines that connect and cover the bypass scar down my chest, the scar from the vein they took from my right thigh, and the huge gash that comes along with a kidney transplant (for the recipient, not the donor). That made me feel much better. I thought there still might be a chance at love in this lifetime.

Later that day, however, I remembered: With a compromised immune system from taking the immune-suppressant drugs that prevent organ rejection, I will not be able to have tatooes. The possibility of infection from the needles is too great.

So I guess there will always be a reason for a man to reject me. The best I can do is do a much better job of avoiding the countless prompts that might remind me of my aloneness--love songs, couples holding hands or kissing, people talking about nice things their significant other does, groups in which I'm the only single person, any references to or images of sex, and, of course, bare-chested men.

Life Sharers

Half the people who receive organs in this country are not organ donors themselves. LifeSharers is a nonprofit organization that contends that just is not right. If you are asking for an organ, shouldn't you be willing to donate your organs upon your own death? It only seems fair.

Now you might say, "Who would want the organs of a person who is in such bad shape that she needs organs?" Well, my heart, pancreas, and kidneys may not be quite up to snuff, but my liver and lungs are fine. Also, my eyes could give sight to the blind, and my bone marrow, tendons, and sinews could be used to help so many others. So don't ever think you're too old or too sick to be an organ donor. You never know whose life you might save or whose living conditions you might greatly improve. Anyone can become an organ donor.

LifeSharers is an organ registry for organ donors. Members agree to donate their organs to other LifeSharer members (family members take precedence over LS members). This is a much more equitable system, plus for people like me who are awaiting an organ, it greatly enhances my chances of getting an organ before my time is up.

At present, there are nearly 1,400 members and only 84 members who are in need of an organ.

If you care about me and if you care about making the organ procurement system more equitable, please become a LifeSharer member at lifesharers.org.

Forty Years Ago Today

Today is the 40th anniversary of the Kent State massacre in which four unarmed students were shot and killed by Ohio National Guardsmen and another nine were wounded. The students were protesting Nixon's illegal and immoral bombing of Cambodia and had set fire to an ROTC building. The students were told to disperse and were inundated with tear gas. Then the soldiers opened fire. As a witness says 40years later, it's still an unsolved murder.

I remember being at Kent State only a short time after the shootings. My mother, oblivious to the hundred thousand activists who were heading to Washington, D.C., for protest marches, decided to go ahead with a trip to the capital that she had planned for my brother's and my spring break. As we drove from Wisconsin to Washington, we encountered young people and hippies at every truck stop. When we got to the capital, it had been virtually shut down, as the activists had taken over the entire Mall.

We did not get to visit the Washington Memorial or many of the sites around D.C., but my brother and I received a valuable lesson in history, as we saw so many people spontaneously petitioning their government to end the violence overseas, as this violence had so dramatically spilled over into violence against our own people here at home.

On the way back to Wisconsin, my mother detoured to Kent State. It was a chilling experience to be on the campus where students had died just a few days before.

Despite the public outrage regarding Kent State, the violence did not end there. Just 10 days later, at Jackson State University in Jackson, Miss., another two unarmed student protesters were murdered, this time by local law enforcement.

Let us never forget Kent State. In 1989, when Chinese troops opened fire on protesting students in Beijing's Tianamen Square, Americans were justifiably outraged and simultaneously awed by the courage of a lone student defying the tanks. But even at the time, I reminded those who would listen that our government would do the same under similar conditions and in fact it had at Kent State. Let us never forget what our government is capable of doing and very willing to do to silence protest.