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.

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.

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.

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.

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.

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!

Is That You, Mom?

Last night, while Aaron and I were watching a movie on my laptop, the radio came on several times of its own accord. Each time Aaron turned the radio off, only to have it turn on again.

"Maybe it's Grandma," I said to him, then to the empty air, "Is that you, Mom? What would you like to tell us?"

No response. Hmmmmm....

One More Hoop to Jump Through

Yesterday I underwent the echocardiogram that is to decide my fate. The technician would not tell me anything, saying I had to wait to see the cardiologist on Monday. Whether I get on the kidney transplant wait list depends on the results of this test. I know that I did well because I've been doing so well at cardiac rehab. Thirty-five minutes on the treadmill at a 3.5 percent elevation and 3.8 mph. Then I lift weights and ride the stationary bike.

My appointment with my Kaiser cardiologist, Dr. Phan, is 1 p.m. Monday. He has to write a letter approving me for the list. Then on Tuesday at 9:20 a.m., I see the UCLA cardiologist, Dr. Le, who must also approve me.

The next step is one I had not realized was necessary until I spoke with Angie, the assistant transplant coordinator, late last week. She said my initial round of appointments with UCLA had been consultations only. In order to get on the list, I first must be approved by the Kaiser transplant board, which meets this coming Friday. Ugh! One more step in this protracted, Kafkaesque process!

Once I get the go-ahead from the Kaiser board, then Angie can make an appointment for me to see the UCLA transplant surgeon. If he's OK with me, then my case goes before the UCLA transplant team, which has the final say.

So, there are still a minimum of six steps left:
* Dr. Phan's OK
* Dr. Le's OK
* Kaiser board's OK
* Angie securing an appt. with the surgeon
* surgeon's OK
* UCLA transplant team's OK

In my worst moments, this entire business reminds me of Kafka's "The Trial," in which a poor soul tries to find his way through a system that is mysterious, frustrating, and forever putting more obstacles in his path.

But for the most part, I realize that this, too, will pass. Once I get through this, it will be over, and I will no longer think about it. Of course, the end is really the beginning. Once I am on the list, the search for the right donor begins.

So, once again, I ask anyone who is of O blood type to please consider giving me the gift of life.

And even if you are of another blood type or if you are not interested in becoming a living donor, please register to donate your organs upon your death. According to a spokesperson I interviewed at Donate Life California, only 6 million California drivers are designated organ donors out of a total of 27 million drivers. That's shameful! It's so easy: Just go to the web site and register today. You can even designate a recipient if you wish. (If you don't, your organs, if usable, go to the patients at the top of the wait list.) If you live outside of California, your state has a similar web site. If you just have the pink donor sticker on your driver's license, you are NOT registered, so please take a minute and do so.

Aren't a few clicks on your keyboard worth saving eight lives?

A Week of Friends

This week has been richly blessed with friends. Usually I do not see a one friend all week, sometimes not for weeks on end. But this past week, I had more events and more invitations than I could accept.

It all began last Friday with Othman. He and I attended a rally at Wilson High School. More than 2,000 people, mostly students, served as a counter-protest to a half dozen "Christians" from Kansas. The notable signs on the "Christian" side were "God Hates Fags" and "You Eat Your Babies." The funniest signs of the students were "Jesus Had 2 Dads," "Dog Hates Flags," and "If God Hates Us, Why Are We So Cute?" Ozzie and I both felt that it was a good exercise in free speech and the right to assemble for the kids, but that we didn't want them to think that just because they outnumbered the Christians that their point of view was necessarily right because there will be a lot of times in their lives when the majority is not in the right. Ozzie and I manuevered so that we could ask one of the Christians a few questions. She was extremely angry at first, but we remained calm and told her we did not wish to anger her, only hear her point of view. I said later that I was not very happy with how most people had treated these Christians, like wild dogs that they were poking, tormenting, with sticks. Other people would just rush up to them and begin shouting at them, not listening to what they had to say. Ozzie and I really wanted to hear her, though she called me a slut from the get-go and said other very un-Christian-like things. I calmly told her that I really wanted to understand the connection that she saw between Jews and homosexuality. She referred to some passage in the Bible that I had never heard of in which Jesus is surrounded by wild dogs and that the dogs are obviously Jews and homosexuals. I didn't argue with her, just listened. Ozzie asked if she was there to save souls. She said no, that the people here were already damned, she was just there to let them know God had already judged them.

Just before Ozzie picked me up for the rally, Heather called. She was in town, visiting her mom, and said she would be in my area in the next few minutes, could I meet her. I had not known she was around. Otherwise, I would have set some time aside for her.

On Saturday Bev and I were to attend a meeting about 2012, government spooky business, and everything in between. I had to cancel as I needed to take care of my plane tickets for LA to Halifax, where I am to fly to Paris in June with Helene.

Saturday night I was at Othman's birthday party. A good mix of people. Ozzie gets along with everyone, from an ex-Marine and an LAPD cop who works Skid Row to an aspiring CIA intelligence agent, activists, and school teachers.

On Sunday, Daphne was passing through the area so we met for tea. Daphne is such a wonderful gal. I met her about 10 years ago when I was working at UCI Medical Center. She's a web master.

Monday evening I met Kevin Malinowski, a former student, for dinner at Kamal Palace. Kevin is working for a PR firm whose clients are lawyers. He has aspirations to become a political advisor.

Tuesday was the knitting group, which I enjoy so much. I am learning so much from those ladies. Tuesday night I attended a writers networking meeting in LA with Tom.

Yesterday I saw Katherine for an hour-and-a-half facial. Last night I saw the Bolshoi Ballet perform "Don Quixote" at the OC Performing Arts Center. My friend Diana is cellist, and her siblings and their spouses play in orchestras, including the one that played at the ballet last night, so Diana got tickets. She and I have attended many gratis performances. It's been a long time since I've seen ballet, though I've seen a few modern dance productions in recent years. Last night was a real treat. Breathtaking.

This morning I met Jose for breakfast. He gave me a beautiful amber and silver bracelet as a belated Christmas gift. Tonight I'm meeting Terri, a man who I had completely forgotten. He says we met in November of 2007. He had wanted to call, but just recently came across my mislaid number. I am always open to strange meetings like this. We'll see.

It's been fantastic having a social life. I so enjoy this. Can't remember ever having a week like the one that's just passed. Maybe it's not an anomaly but the sign of things to come.

The Ups and Downs of Kidney Transplantation

Yesterday, when Janet said she would be a donor despite the fact that her blood does not match mine, I was so happy. Janet's willingness to be a paired donor (she gives her kidney to a stranger who also has a mismatched donor, and I receive a kidney from the stranger's donor) gave me so much hope.

Later in the evening, however, I started to think about things a bit differently. O blood type is the universal donor: O can donate to O, A, B, or AB. But O can only receive blood from another O. A can receive from A or O. B can receive from B or O. AB is the universal recipient, as it can receive from A, B, AB, or O. So, basically, if Kidney Patient X has blood type A (Janet's an A) and has an O donor (I'm an O), X would take the kidney from the O donor. In short, X doesn't need me. I need X's donor, as I'm type O, but X doesn't need me. So, I couldn't see a reason why anyone would want to be a paired donor with an O. If an A, B, AB, or O kidney patient has an O donor, why not just use him or her? A trade isn't necessary. This realization certainly sobered my mood.

It just so happened that today I had my monthly dialysis clinic visit. I asked my nephrologist if there would be any reason why an A kidney patient with an O donor would agree to a trade. He said I was right, it's unlikely, but not impossible. The matter of antigens comes into play. Kidney transplantation looks at six antigens in the blood. When donor and recipient match in all six antigens, they're a perfect match. The more matches, the better the long-term viability of the transplanted kidney. But that has changed somewhat in recent years with improved immune suppressants. Even a zero match with a living donor has good prospects. (Actually, having a living donor, rather than a deceased donor, seems to be the biggest advantage in survivability of the recipient and viability of the kidney.) So, if Janet and the type A kidney patient were a six-point match, then there may be an incentive to do a trade. Otherwise, probably not. So, I left Dr. Butman's office a bit bummed.

Later in the afternoon I spoke with Angie, the assistant transplant coordinator. I asked her if Dr. Butman and I were correct in our concerns. She said yes, then added that Kaiser Downey's first paired donor surgery had occurred today at UCLA. I asked about the pairing. She checked her files. The Kaiser patient is an O! Wow, this again gave me hope. If it can happen once, it can happen for me too.

I've Got a Donor!

I've got a donor! I just can't convey how hopeful this makes me. A week ago I was so discouraged, so incredibly fed up with dialysis that I was seriously considering having the tubing removed, halting dialysis, and having a month or so of life without dialysis before I died of organ failure. I just felt I couldn't stand it any longer. I was so tired, so incredibly tired of being sick. Sick all my life, and so incredibly weary that I didn't think I could stand one more day of it, one more moment.

I railed at God or Archangel Michael or whomever may have been listening that I was tired, that I was either going to see some movement or I was exiting. Well, I got some movement today.

My nextdoor neighbor Janet had volunteered to be a donor back in July of last year, after knowing me for only a month, perhaps not even that long. I had been touched by her offer, as I had been touched by my friends Tim, Helene, and Roger, who had also offered but who were not suitable candidates--Tim and Helene because of blood type and Roger because he smokes.

At the time of Janet's offer, she didn't know her blood type, and I was a long ways from getting on the transplant list. I'm still not on it, but I am doing so well in cardiac rehab that I just can't see any reason why my echocardiogram at the end of the month won't just be perfect. Since the condition of my heart was the only thing that was holding me back, if that's in good shape, I should be a shoe-in.

Well, Janet got her blood tested last week, and she got the results today. She's A+, and I'm O+, so we're not a match. But she is willing to be a paired donor. That means that I will be paired with a donor who wants to give to someone he/she cares for but is O+, and the person he/she wanted to donate to will receive Janet's kidney. The surgeries are done simultaneously to prevent someone from receiving a kidney from a stranger and then the other donor backing out of giving his/her kidney to the designated stranger.

Since Janet is a teacher, she wants to have the surgery performed in July so that she would be recovered and ready to return to classes in the fall. One would think that would be completely doable, given that it's five months away. But the way things drag along with the transplant process, the coordinator said that's cutting it close. Here are the steps that must be taken to make this come together (not necessarily in this order):

* UCLA finds an O+ donor for me and an A+ recipient for Janet.
* I pass the echocardiogram on Feb. 26 with flying colors.
* Janet spends two days at UCLA having tests done on her--cancer screenings, HIV testing, psychological workup. She passes all the tests.
* I get a mammogram and a PAP smear. They're fine.
* I meet with my Kaiser cardiologist, and he approves me, based on the echocardiogram.
* I meet with the UCLA cardiologist on March 2, and he approves he.
* The UCLA transplant team puts me on the wait list. (I have to be on the wait list even though I have a designated donor.)
* Janet and I both go to UCLA to be evaluated by a social worker, who basically wants to make sure that Janet is doing this of her own free will and is not being paid to donate her kidney.
* Everyone agrees on a transplant date.

So, there's not all that much that needs to be done, it's just that I have to be asseertive at moving things along. Last year, for example, I was told that I would have to wait five months for an initial appointment with UCLA. I said that was unacceptable and so was granted an appointment a week later!

Please keep this entire process in your prayers. See me getting a perfectly matched donor and see the surgery date in July being agreeable to all. See everything progressing smoothly.

Oh, God, when you know there's an end in sight, almost anything is tolerable. What wasn't acceptable was dialysis until the end of my days. But now I see a path and an end to all this that has been weighing so heavily on me.

Dogs Truly Have No Shame: The Case of Rasputin the Poop-Eater

Rasputin ate poop! I was walking him last night when he stopped, as he often does. I thought he was sniffing around or maybe munching on some grass as dogs sometimes do. But no, he was eating a turd!

As soon as we got home and I washed my hands, I googled "Why do dogs eat poop?" An enlightening article popped up. It appears that there are a great many reasons why dogs eat poop, though, unlike Rasputin, it is generally their own poop.

First off, the condition is known as coprophagia. Some of the more endearing reasons are that the dog is trying to keep its environs tidy or that it is mimicking the behavior of its owner--she picks up poop, so the dog wishes to do the same, only it does not have a plastic poop bag or a pooper skooper to do the job, only its mouth. The latter is known as allelomimetic behavior. Another cute reason: Dogs are just naturally curious and will put pretty much anything in their mouths, including poop, just to see what it's like.

More practical reasons include hunger or getting only one meal a day rather than having it split over two meals. Also, the dog may be eating cheap dog food that does not contain the minerals it needs. Sometimes dogs eat poop because they're bored, lonely, stressed, or wanting attention (bad behavior gets their owners' attention). The following reason makes me think dogs are sometimes smarter than we think: If they are punished for pooping inside the house, they may eat their poop to destroy the evidence. Some young ones are just experimenting, like teenagers with booze and cigarettes. And just like teenagers who see their peers engaging in aberrant behavior and feel they should too, some dogs observe other dogs eating poop and so want to give it a whirl. Some dogs mistake poop for low-quality food. In short, they think they've just found more of the same of stuff they just ate from their food bowl.

And my favorite reason: Some dogs just like the taste of it.

Really not sure which of these reasons applies to my pooch. It sure can't be that he's lacking attention. And he gets high-quality food.

My theory: He's a little queen, and queens need some sort of psychological problem.

After 30 Years Without a Valentine, I've Finally Got One!

Today marks 30 years since a man with whom I was romantically involved remembered me on Valentaine's Day. In short, it's been three full decades since I had a valentine.





















Well, this year breaks that long dry spell for love. I am head over heels in love with a male, and he's head over back paws in love with me. He happens to be only 10 1/2 inches tall and weighs a mere 13 pounds, but he brings me more joy than any man I've ever dated. He doesn't judge me or criticize me or try to control me, unlike the men with whom I have had relationships. I feel completely relaxed with him, again unlike the tension I always felt in these relationships, my body and my mind bracing for the next emotional blow, the next put-down. And when I have cried in front of Rasputin, he looks at me with such deep compassion, a look that I am not sure I have ever seen in a human being. He doesn't look away or at his watch, he doesn't fidget or give me some "shut up" message. He listens with all his heart and soul, and then gives my hand a sweet, little lick of love. What a sensitive guy!



Here's a photo taken today of Rasputin eating a pupcake, a teeny non-sweet, made-especially-for-dogs cupcake. How silly is that!




This past Thursday was a rather typical date for me. Joe and I met for our first--and only--date at a crowded bar with live music. Not the best venue for engaging conversation. Joe was angry, as almost every Republican I've ever met tends to be. He yelled in my ear about how he's perfectly fine with our government imprisoning without charge, torturing, and killing innocent people as long as it keeps him safe. (He didn't explain how doing this keeps him safe.) And he went on and on about how the Bible says women are to be subservient to their men. He also spent a good deal of time telling me I should have worn high heels and a much shorter skirt, trying to control me from the get-go. And for an hour and a half, I remained calm and poised, sipping on my club soda. (Yes, one club soda. Interesting that when he got out his money to pay the $6 bill--he had club soda too--I could have sworn he laid down a ten. But I remember thinking, "He's going to say it was a twenty." Sure enough, when the change came, he was even angrier than he had been. Strangely, he said that he had been gipped out of $5. Hmmmm...He bullied the waitress into giving him another ten. As Aaron said later, "Boy, he made money on that date!") He then wanted to sit in my truck and "talk." In other words, Joe wanted to make out in the parking lot and figured I would be thrilled at this prospect because he had been such a delight all evening and had wowed me with his big spending! I just smiled and said, "No, thanks, I better get going." He repeated his suggestion, grabbing my ass, and I repeated my refusal and drove off.




My policy for many years has been to say yes to any first date because 1) I am so infrequently asked out on a date, and 2) I want to stay in the land of the living. But Joe has done me a great service. He has made it clear that I need to say no to a great many first dates, perhaps all of them. It's one thing when a date isn't fun, but when it's downright painful, it's time to reassess. Actually, the way Joe was talking, if it were up to him, people like me would be imprisoned without charge, tortured, and killed.

And from Joe's perspective, I was no doubt a tremendous waste of his time. So from my point of view and from the guy's, I've got to change my policy. From now on, if someone from a dating site asks me out, I will ask him during our initial phone conversation, "When was the last time you had a good belly laugh? Tell me about the last playful or silly thing you did." Because I want a man who is in love with life, not angry with everything under the sun. I told a massage client this, and she quipped, "Why don't you just ask him if he's a Republican?"

My Intuitions About Haiti

Ever since the early 1980s, when I began to look closely at our government's actions throughout the world, I have been skeptical of official stories. Implausible tales such as the USG having nothing to do with the death squads that tortured, murdered, and "disappeared" tens of thousands of Central Americans in the 1970s and 1980s, despite the School of the Americas at Fort Benning, Georgia, that trained--and continues to train--the torturers of petty dictators in Guatamala, El Salvador, and beyond; that we invaded Panama and killed thousands of its people to put the drug-dealing head of state Manuel Noriega in prison and not to keep him from talking about CIA spooky business; that we invaded Grenada to rescue some U.S. medical students and not to distract the public from Iran-Contra; that the CIA couldn't possibly be in league with drug traffickers in Laos, Columbia, Nicaragua, and Afghanistan; that the Federal Building in Oklahoma City blew up because of a few bags of fertilizer; and, of course, the ridiculous official story of 9/11. Our history is littered with false flag incidents (where killings are staged to look like the work of another country) and supposed humanitarian gestures that are really covers for takeovers by our multinational corporate buddies (read the history of Central America from the perspective of the American Fruit Company, from which derives the pejorative term "banana republic") and excuses for the military to stay well beyond its welcome.

So when I heard about the earthquake in Haiti, I was skeptical. For decades I have read and heard about USG technology that allows for the creation of earthquakes. (If you're interested in going down this rabbit hole, just start googling HAARP.) An underwater detonation could easily have set off the faults around the island. But even if the USG did not orchestrate the quake, it sure fits our government's plans like a glove.

Take a look at a map, folks. If you had plans to invade Cuba or Venezuela, what better place to launch an attack than from Haiit!

Cuba has been a thorn in our side for decades. It shouldn't be because it poses no threat, but we just can't stand it that there's an adamantly Socialist country just a few miles off the tip of Florida. But that isn't the real reason why we would invade Cuba. As usual, it would be to pave a way for unbridled capitalism. Remember the scene in "Godfather II" when the mob is thinking of moving some operations to Havana? Well, the revolution put that plan on hold. This tropical island is ripe for capitalist exploitation. Just send in the Marines, kill a few thousand, and give those left standing the "freedom" to buy McDonald's hamburgers and Tacomas and big-screen TVs.

Venezuela is also ripe for invasion. It has some of the largest oil reserves in the world. And Hugo Chavez has been very outspoken about American imperialism. The mainstream American media, of course, just calls him crazy, but if you actually read the text of his speeches before the UN General Assembly, you see he's far from crazy. He's dead on right.

And so the American people go on their merry way, feeling good that they have given money to relief efforts in Haiti, while not thinking that they are putting the Haitians under the boot of the American military with their tax dollars. We have been messing with Haiti since it gained its independence from France in 1804. It really bugged us to think that a nation of freed slaves could be in our backyard, especially since we did not liberate our slaves for another six decades. In recent decades we've supported the dictators Papa Doc and Baby Doc, and spirited out of the country against his will the democratically elected Bertrand Aristide. (The official story, of course, was that we did it for his own safety.)

There is so much blood on our hands, on the hands of every American who pays taxes to the federal government. And not just blood in Haiti. Our tax dollars are also responsible for the murder of tens of thousands upon tens of thousands of Afghans, Iraqis, Pakistanis, and Palestinians. Our hands are dripping with blood. Dripping.

A Day Without the Damn Insulin Pump

Last night I was woken up about a dozen times by alarms from my insulin pump. People now think of me as a dialysis patient and often forget that, besides the foot of tubing, the tape, the gauze, the transfer set, and the peritoneal dialysis belt, I also wear an insulin pump with another foot of its own tubing under my clothes. Last night the insulin pump was keeping me awake.

The pump first alarmed that the battery was low, so I changed the battery. Subsequent alarms either noted that the battery was low or that the pump wasn't primed. I primed and I primed and I wiggled the battery. Weary with all this fussing, I finally called the 24/7 tech support line. After much more fussing, the rep said she would send out a new pump that should arrive some time tomorrow. But that means I'm without a pump and back to taking shots for almost 48 hours.

The insulin pump I have is about the size of a cell phone. A little beefier.

Every three days at the latest--and often much more frequently--I must remove the insertion needle, refill the insulin cartridge, prime the machine, select a new insertion site, and place the new needle in one of my thighs or in what space there is on my abdomen (what isn't taken up with the dialysis exit-site bandaging and tubing).

One of the most frustrating things about the insulin pump is its failure rate. The mechanism that delivers the needle into my body doesn't cock properly or it hesitates in its delivery. This happens about one in three times. Then I have to start all over because this needle will not be correctly positioned to deliver the insulin. Sometimes I think the delivery is fine, and then a few hours later, I check my blood sugar, and it's sky high because no insulin has been entering my system.

Then there's the challenge of putting on and removing clothes--something that most people give very little thought to. But I must be very careful not to brush the clothes against the insertion site and risk pulling out the needle. So when I take down my underwear, for example, I have to pull the elastic around the top of the thigh a few inches away from my body, rather than just let it slide down my thigh and risk pulling out the needle.

When the insulin pump is working, it works great. I can dial in the grams of carbohydrates I'm consuming and enter my blood sugar, and the machine calculates the recommended amount of insulin. Also, through the pump's basal function, it delivers a steady, low-level stream of insulin around the clock, in much the same way a pancreas does. Even if you're not eating, you still need a small amount of insulin in your system. Then when you eat carbs, your pancreas releases a bolus of insulin to cover the meal. The insulin pump works in a similar way, only I must dial in the insulin that is then carried from the cartridge inside the pump, down the length of the tubing to the insertion site and into my body. The pump parses out the insulin in .05-unit increments, whereas the smallest measurement on an insulin syringe is .5 units.

One of the most frustrating things about the insulin pump is its failure rate. The mechanism that delivers the needle into my body often doesn't cock properly or it hesitates in its delivery. This happens about one in three times. Then I have to start all over because this needle will not be correctly positioned to deliver the insulin. Sometimes I think the delivery is fine, and then a few hours later, I check my blood sugar, and it's sky high because no insulin has been entering my system.

Then there's the challenge of putting on and removing clothes--something that most people give very little thought to. But I must be very careful not to brush the clothes against the insertion site and risk pulling out the needle. So when I take down my underwear, for example, I have to pull the elastic at the top of the thigh a few inches away from my body, rather than just let it slide down my thigh and risk pulling out the needle.

And then, since I place my pump inside a baby sock and tuck it into my underwear, rather than clip it on the outside of my clothes, I have to remember to also hold the insulin pump under my arm as I'm pulling my clothes off. Otherwise, if the pump drops, the needle will pull out, since the tubing is not long enough for the pump to drop to the floor and remain intact.

So, at least for the next day and a half, I'm free of the pump. I can take off and put on my clothes as easily and unthinkingly as the next person. I can go to thebathroom without performing a juggling feat.

Of course, I am back to taking shots, which have their own challenges. I no longer have a long-lasting insulin, which functions like the basal rate does on the insulin pump, providing a steady flow throughout the day. The insulin pump only uses the short-acting insulin, since it parcels it out in 20 micro injections per hour. That means that my blood sugars will not be as well controlled as they usually are with the pump. But it is nice to be just a little less encumbered, a little more free, if only for a short while.

A Dubious Anniversary

Today, February 2, is my first dialysis anniversary. A year ago today, while still in the hospital following surgery to place a tube into my peritoneum, I started dialysis. I had put off surgery for so long and my condition had so deteriorated, that I could not wait a month for the incision to heal.

This also marks a year of attempting to get on the transplant wait list and still not there.

Statistically, it also means one year down, four to go, as the average life span for patients on dialysis is five years. Every 90 minutes somewhere in America a patient who is on the kidney wait list dies, waiting for a kidney that never came. Of course, I am always expecting a miracle, and I have outlived the statistics before. That said, this is a serious matter, and I don't want to be six feet under and my friends are saying, "Boy, I never knew dialysis was a problem for Heidi. She seemed to be doing just fine."



And so, once again, I ask you to consider the following:

* If you are not a donor, please visit organdonor.gov to find out how you can sign a donor card in your state.

* If you are a donor, make sure you talk with your spouse, children, and loved ones about your post-mortem wishes. Make sure your doctor knows your wishes. So often families do not allow hospitals to use desperately needed organs from their deceased loved ones, even though the deceased signed donor cards when they were alive.

* Consider giving the gift of life. Transplants have a much better chance of success if they are performed with kidneys from living donors. Four friends have stepped forward to say they would donate a kidney to me, but two have been eliminated for incompatible blood types and one for health reasons. The fourth does not know her blood type. So if you feel so moved, please let me know. Knowing that four people think so much of me to offer me this precious gift sure means a lot. Their offers have given me hope during this very difficult year.

* Ask your friends and family if they are organ donors. If not, encourage them to sign donor cards.

Thank you so much. My life and the lives of more than 100,000 kidney patients around the country depend on everyone realizing that people are dying needlessly every day. You can do something to change that.

Cardiac Rehab

This morning was my seventh day of cardiac rehab. A half hour on the treadmill and two five-minute spots on the bicycle. Sometimes I sweat a bit, but I never feel short of breath nor do I experience chest pain. What does ache are my knees, my calves, and my thighs, but I keep plugging away, too proud to call it quits before my alloted time is up.

Today I increased my treadmill pace to 3.8 miles/hour with a 1.5-percent grade. Each day I increase the pace and/or the grade. I'm really pleased with my progress.

I e-mailed my Kaiser cardiologist, who then e-mailed the UCLA cardiologist. All that the latter needs to see is a good echocardiogram. If I can do that, he'll recommend me to the transplant team. The charge nurse at the cardiac rehab unit said that from all indications she would expect me to do very well on an echocardiogram. I sure feel that way too.

I want to give the rehab another few weeks before I take the echo. That way, I should be in top shape.

I'm really enjoying rehab for the social aspect as well. The staff are very friendly, and I enjoy talking to the old guys because it's all old guys at my time slot. Today I spoke with Chuck, an 89-year-old man whose grandfather founded Farmers & Merchants Bank. Chuck smiled when he told me of his wife of 64 years and of his three children. Before he retired, he had been a lawyer in practice with his father. I told him that he really seems to have led a blessed life--a wonderful wife with whom he's still in love, three great kids, a meaningful career, and up until his heart-valve replacement, good health. He heartily agreed.

Rasputin is Such a Good Sport!

Rasputin is such a good sport. Case in point: I got a belated Christmas present from Diana. It was tied in a pink ribbon, which I first tied about Rasputin's waist. He loped about from room to room, his curly bows trailing behind him. Then I placed the assemblage on his head, and Aaron snapped pictures. Aaron then edited me out of the photo and touched it up with stars. What a silly boy!

A Whirl with the Wurlitzer Crowd

Bev, Diana, and I attended a Wurlitzer concert Sunday evening at the Old Time Music Hall in El Segundo. I was expecting a concert of old-fashioned music. I was not expecting an engineering marvel.

The organ has more than 2,000 pipes. The console controls a set of hand bells, cymbals, drums, a xylophone, hundreds of flaps and baubles and what-have-you. The organ is something straight out of "Willy Wonka and the Chocolate Factory." To think that the organist controls all that through buttons, pedals, and knobs! It takes up the entire stage, and as one affecionado told us, there's another room behind the stage where more of the organ is housed.

Well over 90 percent of those in attendance were men. This came as little surprise to me, as the organ is a mechanical wonder. Two men in the audience were thanked from the stage for their efforts to maintain this amazing piece of machinery.

Later, at the Purple Orchid, the tiki bar across the street, Diana said that joining this group of organ enthusiasts would be a great way to meet men. She also suggested car shows and gun shows. The only thing is that organ buffs, like train hobbyists, might tend to be wonks. But even if I don't connect with any men at these concerts, I sure would love to see more of the old-time organs of So Cal.

And the music hall is well worth a return visit, as a silent film has been shown there every Sunday since 1968--accompanied, of course, by the organ. Next up is "Charlie Chan in Shanghai" and after that, Gene Kelly "Singin' in the Rain." What fun!

Putting a Positive Spin on Rejection

I had a much longer and more involved post about Armen deciding that my tubing et. al was more than he could handle, but my attitude toward his rejection has shifted, so I deleted the original post.

Yes, of course, like anyone, it's not an exhilerating feeling to be rejected, especially by someone who thinks I'm fabulous in every other way besides dialysis tubing and insulin pump. But the way I'm looking at it now is that I had two decent dates. Not flutter-in-my-groin dates, not even flutter-in-my-tummy dates, but still much better than the usual reading-a-good-book or mopping-the-kitchen-floor dates (dates in which my time would have been better spent reading a good book or mopping the kitchen floor). Armen could hold up his end of the conversation, he was interested in my opinions, he certainly was flattering, and he treated me (rather than the usual guy who can't even spring for a cup of coffee). We went to a cute Italian restaurant in Hermosa Beach on the first date and to the Santa Anita horse races on the second--the latter being something I hadn't done for more than 20 years, and it was a bunch of fun. So I am very grateful for two nice dates and, as I always am, even on the dull dates, for meeting another human being, someone who adds to the rich tapestry of life.

And that's the right attitude. The time we shared was pleasant. There will be other men, and there's a high probability of more rejection, but there's also the possibility that I'll have fun on some of the dates and the possibility, albeit slim, that one of those men will say he's willing to explore getting close to me, despite the tubing. I mean, it is possible. I don't know if it's of the probability of being invited for dinner at the White House or of finding a $20 bill on the sidewalk. But it is a possibility. Probably a much stronger possibility is that I'll get on the kidney wait list, a living donor who matches me will offer me his or her kidney, and I'll be rid of the tubing forever. That would be far better than any date!