When Your Kidney Wants to Be a Free Agent: 25+ Things I Learned From Donating Mine.
On July 22, 2014 Mom and I put on hospital gowns, surrendered consciousness and got wheeled into our respective operating rooms at Robert Wood Johnson Hospital in New Jersey for kidney transplant surgery. In my operating theater, Dr. Osband and team removed my left kidney. Someone walked the kidney over to Dr. Laskow and team in a nearby operating room, and they installed the critter into Mom.
Spoiler Alert! Despite the missing needle, we both survived and are doing very well. Thanks for asking! And for a few, shining moments, my kidney was FREE! In the World! Flopping around, squinting in the harsh fluorescent light, basking in its out of body experience. More about weird transplant themed dreams later. For now, a picture of me and my mother, 5 days after surgery. We are out for our prescribed walk around the block.
How it started. Early detection of kidney disease
How did Mom get kidney disease? We can’t be sure. She only noticed it because she has high blood pressure. It was during a routine blood test ordered by her cardiologist to keep track of said blood pressure that the kidney problem came to light. Her creatinine and B.U.N. numbers were going up.
Health Takeaway: Keep track of your vitals
The upside of the high blood pressure was mom’s vigilance, and an early warning of the disease. For those of you who don’t keep tabs on your health, you might not be aware you have a kidney problem until it’s too late. Kidney decline can easily go undetected. They say it’s like jumping off a hundred story building with a blindfold on. You feel fine most of the way, until you hit the ground.
But the doctors, using indicators in your blood, (creatinine, BUN) can see how well your kidney is working and know when you’ve only got a few “floors” left to kidney failure. That’s when they insist on doing something.
If they don’t get you hooked up with peritoneal dialysis or hemodialysis or a new kidney in time, you will suffer kidney failure. At this point, your options will be death, or an emergency dialysis catheter, which is “placed by puncturing the internal jugular vein in the neck (most often on the right side), and… then advanced downwards toward the chest.”
Yikes. Once again, a resounding endorsement for prevention.
So there we were, watching the decline of kidney function in the regular visits to Mom’s nephrologist. The early warning bought her time. She was able to make some adjustments to her diet and lifestyle to extend the functioning of the kidneys for a while. But the numbers kept getting higher, and by the end of 2013 she was at 10% or less function. Mom’s nephrologist sent her over to the dialysis and transplant team at Robert Wood Johnson (RWJ) to discuss her options.
First Visit to RWJ
During the first visit to the doctor, introductions were made. Mom said she was there to get started with dialysis. I said I was there to see what the steps are to become a donor. This took Mom by surprise. She said “whaaa?”
The doctor, however, immediately introduced me to the next person to come into the office as “the donor” or words to that effect. He’s a pro.
More about transplant t’Arof later. At this point, Mom dismissed my offer, but in the discussion with the doctor we decided it wouldn’t hurt to go through the tests to see if it was even an option. Not everyone qualifies to be a donor, or a recipient for that matter. Both have to take a series of tests to qualify as being healthy and sane enough for the process. The tests took several months to complete. It was an obstacle course. When you clear one hurdle they send you on to the next. A lot of nail-biting is involved, and scheduling. Blood tests, urine samples, EKGs, MRIs? In all this, your pride is on the line. Am I fit enough to donate?
Had I been fit enough to donate, but not a match, this would not have been the end of it. It would have complicated things somewhat because they would then look for other kidneys in the system that would match Mom, and other people who needed a kidney that would match me. We would then have become part of a donation chain.
Spoiler alert, Mom and I both went through the tests, passed with flying colors, and we were a match. But it did take some time. We got the last result from mom’s last test in late Spring.
And while all that was happening, Mom started on dialysis.
Do or Dialysis
In which we segway through dialysis options:
If your kidneys fail, they can no longer do their job of filtering waste from your blood and regulating other functions of your body. This can rapidly lead to death unless you find something to replace the work your kidneys normally perform. Ideally, that would be a new kidney. Failing that, you outsource the work to an artificial blood cleaning mechanism, known as dialysis.
Dialysis means “separating parts in a liquid based on their different ability to pass through a membrane”. There are several dialysis options to choose from that fall into two main categories: hemodialysis and peritoneal dialysis.
With Hemodialysis, you work directly with the blood (“hemo”). You get a “fistula” surgically placed in your forearm and head over to a dialysis center 3 or 4 times a week. You hang out for the better part of the day with the fistula hooked up to the hemodialysis machine. Your dirty blood goes out, through the machine where the impurities are removed, and the clean blood is pumped back in. You go home tired. There is a way to do hemodialysis at home, but it requires a helper who gets to stick you with a needle.
That’s as much as we listened to on the hemodialysis options before yelling out, “NEXT OPTION!”
With Peritoneal dialysis, you come at the blood through the abdominal cavity. “A mixture of minerals and sugar dissolved in water, called dialysis solution, travels through a catheter into your belly. The sugar—called dextrose—draws wastes, chemicals, and extra water from the tiny blood vessels in your peritoneal membrane into the dialysis solution.” The catheter in question has to be surgically placed into your abdomen. It sticks out near your belly button, and has a valve to open and close and attach to the dialysis machine. You can do it yourself at home, but it requires training. This video will give you an idea of how.
It is a sad option, but less sad than being at the dialysis center hooked up to those bigger machines. Mom went with peritoneal dialysis for the convenience of doing it at home and because you can take trips. The dialysis machine fits in a suitcase, and then you lug along the dialysis fluid (it comes in plastic bags in a box). You can also call ahead and the company will deliver the boxes to your travel destination. Cruise lines are very accommodating.
FYI, the peritoneal dialysis approach Mom went with was designed by Dea Kamen, the same guy who designed the Segway. Kamen “led DEKA’s development of the HomeChoice™ peritoneal dialysis system for Baxter International Inc.” It’s a remarkable feat of engineering.
It is not nearly as remarkable as the kidney itself.
To Donate or not to Donate
It’s amazing what a healthy 4 ounces of meat - your kidney - does. Dialysis with all those bells and whistles doesn’t fully replace kidney function. Dialysis wears on you. On average, a person on dialysis lives for 5 years. 20% of people die in the first year of dialysis. Some live longer, which brings the average up to 5 years. A donated kidney improves your odds dramatically.
Longer Life with a Transplant
On the other hand, patients who receive a kidney transplant typically live longer than those who stay on dialysis. A living donor kidney functions, on average, 12 to 20 years, and a deceased donor kidney from 8 to 12 years.
Patients who get a kidney transplant before dialysis live an average of 10 to 15 years longer than if they stayed on dialysis. Younger adults benefit the most from a kidney transplant, but even adults as old as 75 gain an average of four more years after a transplant than if they had stayed on dialysis.
- See more at bidmc.org
Note: These are averages and statistics. Your numbers may vary.
If you don’t have other options (and many people don’t - kidneys are in short supply. See sidebar), dialysis does let you keep going with a decent enough quality of life. But nothing beats a kidney. And if you’re going to get a kidney, nothing beats a kidney from a living donor. This is the gold standard in kidney care. Better quality, longer life.
Mom wanted nothing to do with my kidney. She was prepared to make the best of dialysis. How hard could it be? Turns out, pretty hard. It entails endless daily busywork and extreme obsessive compulsive cleanliness. It’s easy to get infections at the site where the tube comes out, which Mom did. It’s a pain. No wonder that 1 in 5 people die on dialysis the first year. It gets old fast. The more I saw Mom struggle with dialysis, the more convinced I was that living donation is the way to go. I was just nervous that I wouldn’t qualify as a donor or they wouldn’t approve her as a recipient. We continued the tests.
Family and Futility Concern
During this time, some friends and family members tried to dissuade me from donating, out of concern for my health or fear that it wouldn’t make a difference. This concern was echoed by the psychiatric evaluator on the transplant team. She asked some tough questions such as: “What if you go through all of this and it doesn’t work? What if she dies during the surgery? What if you suffer debilitating complications during the surgery?” To which I answered, “I’ll be very depressed.”
Evidently that was the right answer, or the evaluator was late for lunch because she checked her list, gave me a hearty handshake and left. I got the impression they only need to make sure you are aware of the risks and emotionally prepared for a range of outcomes.
On that note, once we decided on the surgery, Mom and I both forgave each other in advance for anything terrible that might happen. We also filled in those lovely “Do not resuscitate” aka “Advanced Directive for health care” forms. (Have you filled on out? That’s Health Tip #3)
Transplant t’Arof endgame
Dire possibilities aside, I told the family that I wanted the best for Mom, it was worth a shot, and I was fine with giving up a kidney. It’s always been on my list of things to do, especially since having met Rick Antosh of GOLD. To prove to Mom that this readiness to donate was a pre-existing condition, I showed her my blog post written in 2009 Qorbun-e jigaret (well, actually, “koli-e-et”).
She was still reluctant so I said if she didn’t want it, I would donate it to someone else. One way or another, this kidney was burning a hole in me. But who better to donate to than Mom? It’s not altruism because Mom has suffered worse for me. I was a cesarian baby. This is the least I could do.
In the end, Mom said OK, but only after she heard that if you donate a kidney, in the event you need one down the line, they put you first on the list.
So many good reasons to donate. I had a spare kidney. She needed a kidney. Let’s be practical. And who wants all that dialysis clutter around the house anyway? The big Baxter truck comes once a month to unload the supply of dialysis fluid, drainage bags, gauze, clips, whatnot - there goes half your living room. And all that non recyclable medical waste. Doesn’t it make more sense to transfer one small 4 oz object across bodies?
This may be a personality thing. Some people I meet are horrified by the idea of donating a kidney and think I have been coerced. Others seem drawn to it, confess they’ve thought about donating, exhibit a perverse delight in the idea of taking a knife for someone. We’ve watched “bodyguard” and love the scene where the guy dives for the bullet yelling “nooooooooooo!!!”
Donor Advocate v. Coercion
In case you are worried about coercion, you should know that as part of the process you meet separately and confidentially with a donor advocate who is there to make sure you aren’t being coerced and to help you exit the process if need be. They ask questions like, “are you being abused?”
Bonus Health Tip: Are you being abused?
Are you? Or someone you love? Quick, get a copy of “Why does he DO that?” - an amazing, enlightening book that may save your life or the life of a loved one at the hands of an abuser - and spare you enormous grief. But I digress.
Advocate and the Alibi. Even if you aren’t being abused, what if you change your mind about donating? After you already stepped up? Are you stuck? In this case, your advocate will help you with an alibi. There is a good chance you wouldn’t have been a suitable donor anyway. You’re always one urine test away from being rejected as a donor, so it isn’t that hard to arrange an alibi. The alibi option should be available to everyone, although it seems it is not yet standardized in some donor consent forms:
In addition, the Yale researchers found that only 17% of transplant centers’ evaluation consent forms offer an alibi to potential donors. An alibi is a statement of unsuitability for donation that a transplant center can provide to an individual who decides that he or she does not want to donate. The OPTN guidelines for living liver donors endorse the use of alibis to help ensure that individuals are free from undue pressure to donate.
Leave a Kidney Take a Kidney
One more statistic helped Mom agree to the donation. As a donor, you earn kidney karma points. Should the situation arise in which you need a kidney, you have priority on the wait list. Of course, heaven forbid it should come to that. If you are a kidney donor, the odds of needing a kidney in the future are low. This is what the tests are for, to check if you are at risk.
But in the event that you do end up needing a kidney, you’re at the front of the line. That’s a good thing considering how long the line is. 100,000+ people in the US are on the list right now, waiting for a transplant. A very sad waiting list to be on. If you’re reading this and have a spare kidney - consider helping someone get off that list today.
Some people expressed ageism. Shouldn’t I donate my kidney to a younger person? To which I say, I’m not the only one here with a spare kidney! If you have a younger person in mind, donate! Make their day! Their year, their decades. Younger recipients are a great bet. The boost in longevity they get is, in fact, more than older people. And it’s not just about length of life, but quality. This act makes a huge difference.
Step up to donate
But young or old, between many of us, there are enough spare kidneys to go around. If every day more people came forward to offer a kidney to a friend, family member or stranger - what a wonderful world this would be.
There are 100,000+ people in the USA waiting for a kidney at this very moment.
Last year, 4,453 people died waiting for a kidney.
That’s 12 people a day, dying. With another 100,000 suffering dialysis.
These numbers are increasing due to the obesity/diabetes epidemic caused by our addiction to sugar. See sidebar for action to take
Deceased donors: Last year, 16,896 transplants took place. 11,163 of the kidneys came from deceased donors. That’s ~30 people a day who had the presence of mind to fill in a donor card before passing away. Have you filled in yours?
Living Donors: 5733 of the kidneys came from living donors who volunteered for the transplant operation. FRESH kidney! The best kind. That means every day on average 16 people step forward to offer their fresh kidney to a friend, family member or stranger.
What about the risks?
I know what you’re saying. Sure, it’s a nice thing to do, but the RISK! It turns out the risks are quite low. Allegedly, it’s as dangerous to drive to the surgery as it is to have it.
Q. What risks are there to kidney donors?
A. Once a living donor candidate has been completely evaluated and cleared, the chance of the donation affecting his/her lifespan or lifestyle is extremely low. With any surgery and anesthesia, however, there are risks. Nationally, the risk of having a life-threatening problem with donating a kidney is 1 in 3,000. The risk of minor complications such as a minor wound infection is about 2-4%.
Donors Live Longer
Not only is the risk of death and complication low; statistics indicate that kidney donors live longer than the average population. There are several reasons why this may be so. The first is that we’re a healthier group to begin with - they screen out unhealthy people. The second is that the decision to donate makes you more health conscious, so you start to take better care of yourself. This is true in my case. I had been neglecting my health and it was starting to wear on me. Now I’m more alert to my own health. I exercise regularly and eat more fiber.
There’s no guarantee, of course. Donor lifespan varies. I could still keel over at any moment from anything, so many ways to die. But statistically - I’m in good company.
No going back
There are a few things you might want to consider before surgery.
As the Recipient
If you are the kidney recipient (Mom) - after surgery, YOU CAN’T HAVE ANY ALCOHOL EVER AGAIN. No alcohol, no grapefruit and no POMEGRANATE!!!! Alcohol apparently irritates the liver, which will cause it to flush out the anti rejection medication.
Grapefruit interacts negatively with some medications.
Pomegranate has the same effect as grapefruit. This is sad because we love pomegranates. When the nutritionist gave us the news about Mom not being able to eat pomegranate he was surprised by our strenuous “Nooooooooooo!” Our last meal before surgery was xoresh-e fessenjAn - the last pomegranate stew for Mom to enjoy.
Of course, the recipient’s alternatives are dialysis or death. That has a bearing on the landscape.
As the donor,
Donors have a few things to watch out for as well.
Bonus Health Tip: Apparently, anyone can trigger kidney failure by simply taking too much advil. Is your pain killer killing you? They’re not kidding about a maxium dose. Careful, athletes! Who knew.
If I need a painkiller, Acetomenophin is OK to use.
So what if I’ll have one less kidney?
For a healthy human, the one kidney is enough to keep your blood clean. Apparently, the work load is pretty light for two healthy kidneys. When one goes away, the other one picks up the slack. If this were an office, the kidneys would have been goofing off a lot at the water cooler and surfing the web. Then one would be redistributed, and the remaining worker would grumble a bit, but still not have to work much harder.
However, in certain situations, having a second kidney could become an issue. With one less kidney, I don’t have a backup. Sometimes you need that backup. It could come to pass that the remaining kidney gets blocked, as with kidney stones. Or I could get stabbed, shot or otherwise injured in an accident that damages my kidney. If I had two, the shot would have spared the other one, and I would be OK. It’s like Spock with his second pair of eyelids. Knowing this, I am now going to be extra careful around people with guns and knives.
Other vulnerabilities: if I come down with a disease that affects kidneys, such as heart disease, high blood pressure or diabetes, I’ll burn through my remaining kidney quicker than if I had them both.
You know those tests to see if you are a match? They involve needles.
Did I say it wouldn’t hurt to go through some tests to see if you could be a donor? This whole process involves a lot of needles. If you can’t handle needles, run away. You get your blood drawn a lot, which is literally a pain. As for me, it also came to pass that I suffered a “lateral antebrachial cutaneous nerve injury induced by phlebotomy” - which means I got nerve damage in my arm from one of the needles. Nerves heal, so it went away after three weeks, but it scared me at the time. This type of thing is pretty rare, but it does happen. I didn’t mention it to the family at the time, just to the doctor.
Finally, the surgery itself is invasive, jumbles up your insides and takes a while to heal from. In my case, for the most part, things have gotten back to normal. I’ll let you know when I’m back to 100%. Wait, technically I can’t be, since I’m walking around with one less kidney.
The Surgery Itself.
Sign your Advance Directive
Have you filled in and signed your Advance Directive? Surgery forces you to think about it, deal with it, get it done. But don’t wait for surgery. Look into it now. Think about that end of life care and people pulling the plug on you. Stare into the face of your mortality. Laugh. Ditto the living consent form.
And now, the indignity of surgery.
What does kidney transplant surgery involve?
A. The surgical procedure to remove a kidney from the donor is called a donor nephrectomy and takes approximately 2-3 hours. Surgeons primarily use a minimally invasive technique, using 3 small incisions to insert instruments and a slightly larger incision (~8 cm in length) to remove the donor’s kidney. Typically donors spend 2-3 days in recovery before being discharged from the hospital.
In laymen’s terms: they will put me under and cut me open. One incision is for the camera to be inserted so they can see what they are doing. The second is for the instruments. The third, bigger one is so that some lady (my surgeon) can put her hand into my body and feel around for the kidney. Also, they inflate my body with air, cut away the large intestines from the side of my body, push aside the small intestines to create the necessary work space to extract the kidney. What kind of people are drawn to this kind of work? It makes you wonder.
Speaking of creepy medical professions,
Anesthesiologists. There’s a whole team of them. You meet the first one at his office before surgery. He asks you to say “ah”. What is he looking for? To see if you could be easily intubated. Yikes. Well, at least you’ll be unconscious for the trauma of intubation. They put you under before they do all of that. That brings me to the psycho anesthesiologist who put me under for the surgery. He took out a giant needle. He bragged about the size. “Yes, we’re going to give you maximum anesthesia. This kind of surgery requires that we paralyze your lungs and breathe for you. I will have total control of you. You will be like a doll to me. BWAHAHAHAHA…”
That’s the last thing I heard as I slipped away, and in my dimming field of vision they wheeled my mom by on her way to prep. That’s all I remember until…
I come to. There is motion around me, of me. They are moving parts of me, putting on a cuff? Lifting my arm, putting it down, other motions. The anesthesiologist was right, I am a rag doll. I hear people talking. Strangers, explaining something to my sister. Dad is there, too. They discuss the surgery, and wonder aloud if I am still unconscious. I try to speak but can’t. Indeed I can’t do anything but…wait! I can move my finger. I lift it in response to their chatter. Shirin (my sister) notices. She asks a few questions. I lift a finger in response. Communication! Shirin tells me Mom is OK and that there were some issues with me. But all is well now. And they wheel me off to recovery.
Apparently, there was a missing needle incident, so I was under for a bit longer. It happened when they were finishing up with the kidney. They had removed it and were closing me up. The curved needle they were using to sew broke. Half was in the hand of the surgeon, the other half of it disappeared. They looked around for it. Couldn’t find it. They wheeled me to another room and took an X ray. Still no needle. Then, “oh hey, it’s right there on her arm.” In breaking, it flew across my body and landed there. Great.
About being out for the surgery - it occurs to me I have no idea what actually happened while I was under. This could have been a placebo surgery for all I know. Blessed unconsciousness.
They warn you before about the pain. They’re not kidding. You have the device taped to your hand that you can click whenever you need more pain relief, but it has a limit, so you can’t click it more than once every 10 minutes. The first night I slept in 5 minute increments - awoken by the pain and having to wait for the next dose to kick in - then getting a merciful 5 minutes of sleep, then…awake with pain. And the clock in front of the bed maddeningly reporting that only 5 minutes had passed. On top of the pain, there is nausea.
They warn you before about extreme nausea. They’re not kidding. Anesthesia causes nausea, and of course you get your internal organs jumbled in the extraction - which causes nausea. Note that the donor feels much worse after surgery than the recipient, because your organs get scrambled, but theirs don’t. For the recipient, they make an incision below the abdomen and place the kidney near the surface. It’s less invasive. Mom was thus up and cheerfully eating fancy meals while I was roiling and bilious.
It was fortunate that the first nurse to care for me in recovery had a tip about sniffing isopropyl wipes to combat the nausea. It worked. Nothing else did. The anti-nausea medication this other nurse insisted on had no effect. None of the nurses afterward knew about the isopropyl trick. They seemed to think that I had a superstitious attraction to the alcohol wipes. Luckily, they indulged me and let me have some. This brings up another point. You are helpless in recovery. The nurses are your lifeline. They make a big difference.
There are many nurses. They change shifts every 4 or 6 hours. Only a few repeat, so it seems like a steady stream of nurses. Every changing of the nurse guard comes with them talking outside the door, explaining the status, handing your chart off. Each nurse has their own character. Doris was the best. Or was her name Dolores? I was on pain medication and may have forgotten her name. She’s the one that got me to stand up first.
Walking Against Clots:
Yes, tough love, you must stand and walk as soon as possible, even though you are in pain and nauseous. It’s to prevent blood clots that will travel to your brain, lungs or heart and cause a stroke. And it’s really difficult to do. My first walk was to a chair (where I collapsed). After a rest, my second walk was the two steps back to bed. Later that day I rallied. Walked all the way to the room window and back. Still later, down the short hallway. Soon I was doing laps around the ward, lugging the portable bag hanger to lean on.
Hospitals are awkward places:
In these walks around the ward, there were other people looking equally vulnerable in their rooms, and nurses moving about. And from time to time, the smell of jet fuel, which turned out to be from the heliport. Of course! There are many reasons for hospitals to have heliports. Organ donation is one of the biggest. A kidney donor contemporary of mine (kidney friends!) wanted to donate to her dad, but wasn’t a match. They ended up becoming part of a 7 person chain. Per Tania:
Surgery went well for my Father and I on Wednesday. My kidney flew to Massachusetts and his came from Wisconsin. There were 5 other matches in the chain so 7 pairs altogether!
Are most doctors benign sociopaths?
They make you better, but what kind of person sticks their hands into another one and takes out their kidney? (Great job, doc! Appreciate it!) And then is excited to show you creepy pictures of the inside of your body in glorious color? “There’s your kidney!” There is a reason I didn’t go to med school. And who was that other doctor who came around, looked at my chart and said cheerfully, “Oh yes, fine to eat whatever you want”- and there I am, in bilious agony.
Don’t overstay your welcome
After four days of agony in hospital, they get you to sign a stack of papers and acknowledge that you understand all the fine print and the instructions (you nod off and they shake you back awake). Then they kick you out. With orders to walk and do weird breathing exercises with this device - to prevent clots.
Back at Home: Recovery
Recovery takes a good couple of months. Have some reading material at the ready.
Who knew how useful abdominal muscles were. You’re not supposed to lift anything or do anything resembling a sit-up for 3 months - your incisions are healing and you don’t want a hernia. This makes it tricky to get out of bed. I developed a lot of rolling techniques.
You have false starts: the first few days I walked and thought, wow! I’m all better, this was easy. And then there are a few days of nausea and pain. Here’s a picture of me, Mom and Dad taking a walk just a few days after we got home.
The Scars: Mom’s scar is long. Mine are more unobtrusive. The biggest one looks like a question mark around my bellybutton. Not too big. I have no idea how the doctor fit her hand through that. One reason why I suspect the surgery of being a placebo effort.
Another interesting fact about surgery for the recipient: they don’t take your failed kidneys out. They add the new one in. So now Mom has 3 kidneys in her body, and I have one.
Glue and stitches. They glued the surface skin closed. I believe they used nylon-ish stitches deeper down in the muscle area. Prolene? If I was a journalist, I’d look it up. If I was interested, also. OK, OK. I looked it up. “What is a Prolene Suture”. But that’s it. There is a reason I didn’t go to medical school. In any case, the prolene stitches will allegedly remain in my body for ages.
Thanks so much to folks who visited and sent cards, gifts and flowers. Thanks also to the folks at Zarephath who came by with meals for the whole family. You guys rock!
Dreams of donation
they don’t tell you about the dreams you’re going to have. I’m writing this 6 months later, so they have faded, but at the time I recall my post surgical dreams were stupendously vivid, detailed, textured, rich.
Right after surgery, there was the dream of skimming over the surface of a bleak, post apocalyptic landscape with giant black brambles and barbed wire, going over and under, trying to dodge the barbs.
Dude, where’s my kidney?
Then I’m in a megacity. Lost. So many details, turns, signs, bits of architecture and urban detritus. And I don’t know where my car is. I need to find my car, or they might tow it. I race throughout the city (with many startling elements) and get to the place where the car had been. It’s not there. Oh no! They’ve towed it! They’ve left a cheap bit of particle board to cover up the patch. I don’t know where they’ve taken it and probably won’t be able to pay the fine or clear the lien to get it out.
Dude, where’s my kidney, II?
Can a dream get any more symbolic? Missing car, missing kidney? But then the dream doubles down. I don’t need my car! I have a spaceship. Dude, where’s my spaceship? So now I go hunting for where I parked the spaceship, and just as I reach it, it begins to disintegrate - breaking down into nano blocks and reassembling into other shapes, and then melting into the urban landscape.
When I got home, pain killers allowed me to sleep uninterrupted, but when I didn’t take the pain meds, the vivid dreams returned.
Organ City Mall
The theme of disintegration and fractal rearrangements continued. It was an endless stream of wandering in an infinite mall. Jello, shoes and purses. Escalators, display cases, objects. Mountains of material goods. Such a material dream and vivid architecture. As if my subconscious was cataloging everything that exists now or ever will. Things out of place, on temporary display, wanting to be bought and taken home?
King of the road
And then I had some anxiety dreams. I dreamed about a hobo, looking for a place to sleep, being driven out, room after room. He went and hid in some bushes. They found him. He went to an abandoned house - they called the cops. This went on for some time, and I think this may have been my fear that my kidney would not be welcome in its new environment.
I got the feeling all my cells are residents of the megacity that is my body, and they were traumatized by what happened, and miss their kidney. And the way they communicated this loss and readjustment to my conscious mind was through dreams.
Also, not a dream, but a meditation. While I was recovering, Israel was bombing Gaza, and I projected a transplant rejection story onto the unfolding news. But which entity is the organ, which is the host? The rejection is happening, but was any of these entities ever designed to serve the other? Is there some entity that can be seen as a whole over all of this, and each warring entity a transplant? What kind of whole could it be? And what is the metaphoric equivalent of an imunosuppressant that would work in that region?
Three Month Probation
The dreams faded away, and time passed. This brings us to the three (3) month anniversary of the surgery, an important milestone for the kidney recipient. When you first get your transplant, they put you on extra high doses of anti-rejection medication which suppresses your immune system. Because the doses are so high the first three months, your immune system is extra weak, and they want you to avoid crowds, in particular shopping centers, schools, churches and movie theaters. And so, Mom was stuck at home, doing jigsaw puzzles and reading. The three months did not pass quickly enough for her. She snuck out a few times to populated venues, exposing herself to life-threatening humans and their germs. For shame! Luckily, the probationary period ended without disaster.
Health Takeaway: Fist Bump
We interrupt this post to remind you that it’s best not to shake hands with people on immunosuppressants. Indeed, it’s best not to shake hands in general these days. The population is headed to 10Billion. That’s a lot of people, connected by the global economy, flying about in disease incubation tubes (also known as “airplanes”), not vaccinating their children and engaging in other high risks behaviors. Even if you’re not immunosuppressed - you’re at risk.
If we want to avoid global contagion awkwardness (Flu pandemic! Ebola! Zombie outbreak!) we all need to get in the habit of keeping physical contact simple, minimal. In lieu of a hug or handshake, go for the friendly fist bump. It’ll catch on. Save the hugs for someone you love and don’t mind getting diseases from.
Check out a Big Hero 6 fistbump video tutorial here.
Followup visits. For the first month, Mom had to go to the transplant center twice a week for tests and assessments. Then it got down to once a week. Each week, they drew and tested her blood and adjusted her medicine levels: dosages were reduced and some medications eliminated. By the third month, the medicine was pared down to maintenance levels: Going forward, she’ll be on 3 immunosuppressants for life. That’s par for the course in organ recipients.
Free at last. We are well past the probationary period. Mom is now free to go to church, with much rejoicing. She has resumed all her normal life functions. And as for being on immunosuppressants - it doesn’t seem to affect her health. I’m not on any such medications, and have come down with two colds since the surgery. Mom - nothing.
The first three months are the strictest, but as an organ recipient, you’re always going to be on higher alert after your transplant. You will be on immunosuppressants for life because a donated organ isn’t the same as your own kidney. Your body will always tend toward rejecting this foreign element.
It’s the standard immigrant story. You move to a new place, the locals are suspicious and resentful, even though you work hard to prop up the economy and pay taxes - but I digress.
In the end, was it worth it?
We made our peace with it either way. Fortunately, the payoff is pretty good:
Mom’s quality of life has improved. The dialysis is gone. She feels better. She sleeps better. Some things we didn’t expect: Her ankles have slimmed down. While she was on dialysis, she swelled up with extra fluid. Now, with my kidney, that’s taken care of.
My quality of life has improved. It’s great having a happier, more active Mom. Plus bragging rights. I’m bragging right now. For the most part, my body feels great. The innards are still settling, the scars still itch from time to time, and I have this weird bump in my belly button, but these are minor and fading away.
Clarity. An unexpected byproduct of this process is general life clarity. Going into surgery invites you to contemplate your demise. This motivates you to attend to things you may be neglecting, and to obtain closure on things. It’s a great incentive to reboot your life and let go of things that don’t matter anymore. The upshot is, I have a peaceful, easy feeling. A sense of possibility, order, connection. Clarity about my priorities. An appreciation for the things and people that have been there every day. The moments.
Family relations have improved: During the psychological evaluation, the psychologist warned me that if you’re expecting your relationship to change because of surgery, you may be disappointed. I don’t think my relationship with my mother changed, but our broader family relationships did improve. We had some crucial conversations we had been avoiding. This cleared up some family clutter and created movement in areas that had been blocked. We are all a bit more connected, things are a bit more resolved. It’s a nice feeling.
As they say “the conversation IS the relationship” - so technically, having good conversations means relationships improved.
Health and wellbeing tip: Don’t wait for life threatening surgeries to have conversations with your family. Resolve stuff now. Have those conversations today. Here’s a video about end of life conversations via Atul Gawande and Jon Stewart
Six Month update:
That brings us to today. It has been six months since I donated my kidney to Mom. Would I do it again if I had to do it over? Of course. I never realized what a lovely shade of green and grey my mom’s eyes were. Did they change color after surgery? Or am I just looking at them with greater clarity?
And now to enjoy the rest of our days.
Wow! Did you actually read all the way to the end? Leave a comment below to let me know. Also, questions, corrections, your thoughts welcome. Have you donated or received an organ? Send me a link to your story, I’ll add it here. Thanks!