Les Donates a Kidney

Finished

2011-06-30T11:06:00.000-06:00

My incision is superglued closed, and as the superglue flakes off, it itches. But the wounds look gruesomely cool. I went to see my surgeon yesterday, who declared everything to be healing well and looking good. I feel good, if a little sleepy. So, I guess that's it. I'm done with this project. It seems odd to have it over, I've been working on it so intently. Since I can't repeat this project unless I'm killed suddenly, what next? I'm sure I'll think of something.

Recovering

2011-06-25T13:49:00.001-06:00

I was warned by multiple people that the day after surgery is the worst for organ donors. Boy, they weren't kidding. I thought I was going to die, and that didn't seem like a bad idea. Painful, queasy, general feeling crappy. Taking a deep breath hurt enough to literally make me cry. And they made me get up and take a walk, which hurt more than I expected.

Luckily, it's only one day. I feel much, much better today. After 5 days in the hospital, I'm finally home. I couldn't eat for two days, then a day on clear liquids only, then a day of full liquids.

Yeah, I didn't know what full liquids meant, either. It means they put everything in the blender. Corn chowder with no whole corn kernals in it. Cream of Wheat. Luckily, it also includes things like pudding and snow cones.

Today I can finally eat normal food again. I just have a tiny appetite. Partly because I'm just not hungry. Partly because the thought of eating more than my stomach wants and throwing up with this incision is my idea of Hell. Mostly because I'm simply too tired to chew. I still can't keep my eyes open.

Tuesday, the Big Day

2011-06-24T22:17:00.001-06:00

I met my recipient Tuesday morning. Actually, the clinic accidentally left his name on a piece of paperwork they gave me, so I Googled him. I couldn't find any social online presence, but I did find his business website, including his picture. As I was walking into the surgical center, I saw a man that looked remarkably like my recipient. So I went to talk to him. "Are you Mr. D?" He looked at me like I was some kind of nutjob, but confirmed his identity. I said, "I'm your donor," and he immediatlely became a warm, charming man. His wife hugged me--she's probably a hugger all the time--and he was charming. I was glad for the timing, so there was no need for a long, awkward conversation. How long does it take to exchange "Thank you" and "I'm happy I can do this for you"? About 3 minutes? Then I had to check in for surgery and the fun began.

I don't remember any of the surgery, obviously. Kerry said it took about 200 hours, but according to the clock, it took a little over 4 hours. I came out of anesthesia just as they were wheeling me to recovery. I handle anesthesia easily, so I woke up pretty easy. Groggy and sleepy, but awake enough to identify my surroundings and ask for my glasses.

I was sore that day, but not unbearably so. I was grateful for the morphine pump and the little green button. And that kept me groggy and sleepy all day long. I was sore enough not to worry about dignity, and I was even grateful for the catheter, that meant I could sleep all day long without having to get up to go to the bathroom.

As soon as I saw my surgeon again, I asked how my recipient was doing. I got the good news that his new kidney is working well for him. Yay! I'd hate to go through all this and have it not work. I have been careful to think and talk of it as his kidney, not mine. I have no control over it, I willingly gave it to him, it's not like I can take it back. It's his now.

And that's how it goes they day of donation. Holden, if you decide to donate when you're a grown-up, you'll know what to expect.

Faith

2011-06-19T12:43:00.000-06:00

Many people have promised to pray for me this week. I am so grateful. There is power in prayer and faith. Prayers are heard. Prayers are answered.
While you are praying, please pray for my recipient. Pray that his surgery will also go well, that he will recover quickly and most importantly, that the kidney will work well for him and allow him to live a long and happy life.
I have faith that all will go according to Heavenly Father's plan for me and for my recipient. I look forward to a positive outcome for everyone. I'll take all the prayers I can get.

To Whomever Gets the Kidney

2011-06-16T20:12:00.000-06:00

Dear Recipient,
I am grateful and humbled to have the opportunity to make your life a little healthier. I feel honored to be able to donate my spare parts. Thank you for allowing me to serve you. I am counting on blessings from Heaven in return.
There are a few things I'd like you to know; an owner's manual for your new kidney, if you will.
Your new kidney has never been exposed to alcohol, tobacco, or illegal drugs. It has been flushed with copious amounts of Diet Coke over the years. It prefers life in a body that will treat it well, take care of it, and take steps to be healthy. I hope you will do continue to do that.
Your new kidney has been in a body that believes in God, family, and patriotism. It's previous host was devout and active in her church. It's previous host loved her wide circle of extended family, and welcomed "family by choice" from all walks of life. It's previous host paid attention to the political climate and was conscientious about voting in all local and national elections. I hope you will continue in these things.
Your new kidney comes to you with the hope it will improve your health and give you more time to do the things that matter to you. It comes with no expectations of anything in return. But sometimes, perhaps often, you will have the opportunity to do something nice for someone. I ask that you take advantage of these opportunities. Small kindnesses, given with love and compassion, make life worth the ride on this crazy earth.
Good luck. God bless you.
Les

IMC Organ Transplant Program

2011-06-15T21:47:00.000-06:00

I have been very impressed with the transplant program at IMC. That's the huge hospital on 54th and State in Murray, for anyone who doesn't know. Everyone I've met has been very good to treat me as a person, not a machine to keep a kidney alive. Today I met the donor coordinator for my recipient. I think it's good that there are different coordinators. That just helps to avoid any conflicting interests, and helps keep anyone from thinking of me as an extra-efficient dialysis machine.
My husband is impressed that, of the three transplant surgeons in this program, the one doing my surgery has the smallest hands. He figures the smaller the hands, the less bruising I'll have. I'm beginning to see his point, actually. If a hand must reach from my navel to the back of my ribs, I prefer that hand to be delicate and small.
T minus 6 days, and counting.

T Minus Seven Days

2011-06-14T19:15:00.000-06:00

With only one week left before surgery, I'm feeling almost every emotion in the world.
Happy that I have this opportunity.
Nervous about surgery.
Scared that I'll be a big weenie.
Dreading the loss of dignity necessary to recovery.
Angry that the waiting list for a transplant is so long.
Hopeful that I will make a difference for one person and his/her family.
Excited to have a "get out of housework free" pass for a few weeks.
Sad that my Mom can't be with me for the entire six weeks.
Worried about my granddaughter being left in the care of my sister-in-law.
Content with my decision.
Puzzled at the people who think I'm a hero.
Secure that my angel husband will be available to pamper me and take care of me.
A little slap-happy and punch-drunk from feeling all of this at once.

Someone want to go out for ice cream and some distraction from all this?

Regret

2011-06-12T22:07:00.000-06:00

There are 75 thousand people on the national transplant waiting list. There are over 10 thousand Utahns on that list. Today I regret that I can only give one kidney and change one life. Next summer, I plan to speak, write and, I hope, help other families make the difficult decision to allow their loved ones' organs to save lives. Donating your old clunker car, encouraging your boy scout to team up with Intermountain Donor Services for an Eagle Scout project--surely I can find another way to make a difference to more than one person.

Recovery Reading List

2011-06-06T11:23:00.000-06:00

Dead Witch Walking by Kim Harrison
The Heart is a Lonely Hunter by Carson McCullers
Tara Road by Maeve Binchy
Second Sight Dating by Marianne Stephens
Room by Emma Donaghue
The Girl with the Dragon Tatoo by Stieg Larsson
The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

Any other suggestions? I'll have lots of time to read. As you can see from the list, I don't limit myself to any particular genre.

Surgeon

2011-06-03T15:30:00.000-06:00

Today I met the surgeon who will remove my kidney. I saw the results of all of my tests--apparently my kidneys work extremely well. The CT scan looks just like the pictures in an anatomy book. All tests well within normal range. No worries whatsoever.
So the surgery is tentatively scheduled for June 21. They'll try to find a recipient who matches my blood, with a relative who wants to donate but doesn't match. Then that donor can donate to another patient on the waiting list on the same day that I donate. Two lives saved for the price of one (sort of).
The following Saturday, June 25, is Kerry's family reunion. If anyone is free that day and wants to come hang out with me while I sleep and read, that'd be great. Then he could go to his reunion.
Three weeks away. I'll let you know if that changes. Pray for me and my recipient.

To Meet, or Not To Meet

2011-06-02T22:04:00.000-06:00

People keep asking me if I want to meet the recipient of my kidney. I don't know. What would I expect from such a meeting? The scenario in my head is rather pleasant, where we like each other right away, the recipient is gracious and grateful, I am gracious and kind, and everyone loves everyone. But really, what are the chances of a group of real people doing exactly what I imagine them doing?
Realistically, I'm not sure what I can expect. I think I can expect to see a sick person who wants to get well. But they could resent me for having a choice about donation, where they have no choice. They could feel angry if I don't measure up to their expectations. A child could be simply too terrified to care anything about a donor at all. Spouses or parents of the recipient could be upset that have to watch their loved one suffer, and see me only as a walking kidney machine. So much could go wrong.
But so much could go right. A donor could be happy to have a chance at a more normal life. They could be genuinely appreciative of the risk I'm taking. They could be delightful, funny, brilliant, and charming.
What do you think? If it were you, what would you do? Please post comments or send me a message with opinions and thoughts.

Glow-in-the-Dark

2011-06-02T14:17:00.000-06:00

This morning I had a CT scan of my kidneys. In order to get a clear picture of the blood supply, I got an iv injection of a radioactive dye. So far I don't glow, but there's always hope.
A CT scan is pretty benign. The machine looks like a very large donut, if donuts had flashing lights and spinning lasers and cool stuff like that. The bed slides through the machine while the laser spins, giving a 360 degree picture of my insides. It doesn't feel claustrophobic or scary, and it's surprisingly fast. I was only in the same room with the machine for about 45 minutes.
The weird part is the dye. It's injected through an iv port in an arm. They warned me first that I would feel very, very hot all over, and that I'd feel like I was urinating. (My brother warned me of the same thing) About 10 seconds after the injection, I felt heat starting in the back of my throat and spreading all over. I didn't actually feel like I was urinating, but I could definitely tell when the sensation reached my bladder. Another 10 seconds, and the feeling is gone. After that, there's nothing weird at all.
Now I'm just waiting for the nephrologist to see the pictures. Presuming I have two healthy kidneys, then we can move forward.
Tomorrow, surgeon. June 16, mammogram.

Busy, Busy

2011-05-31T23:23:00.000-06:00

Today's Schedule:
Donor Coordinator, 10:00: Her job is to keep everyone on the same page. She double checks all forms and paperwork, faxes all lab orders, tracks test results and appointments, answers all the million questions I come up with, and keeps everything running as smoothly as possible. She has a masters' degree in nursing.
Dietician, 10:30: Obviously, her job is to make sure I eat well enough to be healthy now and after surgery. I'm low on protein, so she reccomended eating more almonds, which I love. This seems like the perfect excuse to make sure I always have almonds in the house. She also reccomends that I take a multi-vitamin with calcium, since I dislike dairy products of all kinds. Other than that, no dietary changes need to be made. Evidently one can live on one kidney, almonds, chocolate, and whatever-the-boys-are-cooking.
Social Worker, 11:00: Her job is to make sure I'm mentally and emotionally capable of making the decision to donate. She tries to ensure I'm not being coerced or pressured in any way. She informed me of possible emotional ramifications, including PTSD and increased symptoms of depression. Not all patients experience these issues, but it is not unheard of, and forewarned is forearmed, right?
AnnMarie, 11:30: Her job is to eat lunch with me, remember being kids at Grandma's, talk about our kids, and generally do all the things a girlfriend/cousin does in my life.
Nephrologist, 2:30: Nephrology is the study and treatment of kidneys. He confirmed that I'm boringly healthy. I've been tested for every disease, disorder, and syndrome possible, and all came up negative. Unfortunately, all tests for super powers also came back negative. Dang it.
Family Doctor, 4:00: General health check, medication management, and chatting about books and motorcycles. He's been my doctor for a long, long time and we have found a few common interests over the years. Discuss plans for medication after surgery in case I need to change anti-depressants.

Tomorrow I see a Donor Advocate, Thursday I have a CT scan, Friday I meet the surgeon. I'll be so sick of doctors by the time this is over!

Nervous

2011-05-30T11:38:00.000-06:00

This weekend I'm feeling nervous. It's getting close enough to feel real, almost. It's scary. I'm not backing out, but I think I'd be crazy if I didn't feel a little apprehensive.
I'll be glad to talk to specialists in all sorts of fields on Tuesday. I always feel better with more information and knowledge. If I know exactly what to expect, I'll be less nervous. What I can imagine is always worse that reality.

Go and Do Something Today

2011-05-28T16:24:00.002-06:00

I am not a hero, nor am I doing anything spectacular. I have found a way to serve that will improve the life of someone who needs help. I am a student taking the summer off, so work scheduling is not a concern for me right now. My kids are older and can physically take care of themselves. I can worry while I lay around recovering just as easily as I can worry while I sweep the floor. I am healthy and young, so recovery should be relatively easy. I want to make a difference for someone.

But organ donation is certainly not the only way to serve. Anyone can find something helpful to do. You can donate plasma or whole blood. You can donate time or money to your favorite cause. You can pray for advance in medical science. You can: take care of your children; call your mother; visit a friend; smile at a stranger; hold a door; be a foster parent; volunteer at your local school; recycle or reuse to reduce your carbon footprint; come over and scrub my kitchen floor; tie a shoe for a little kid or a pregnant woman; teach a class in your church; grow a vegetable garden and share your harvest with a neighbor; read to a child; help an elderly friend in the yard; kiss your spouse like you mean it; reach out to an acquaintance; keep your office neat for the cleaning staff; toss your trash in a trash can; mow the lawn next door when you mow your own; change a tire for someone you don’t know; attend a benefit concert; help a boy with his Eagle Scout project; join the Peace Corps; thank a soldier; be a soldier; donate a hospital wing or university building; take dinner when you go to visit a new baby; speak kindly to the cashier at the store; donate to the DI or Salvation Army; be a secret Santa; or any number of other ways.

We sometimes forget that service to immediate family is just as important as service to people we don’t live with. Right now, step away from your computer and go say something nice to someone you’re related to. There, you’ve started serving already.

Paperwork

2011-05-28T15:36:00.000-06:00

Today I went to donate blood plasma, which is used in making several medicines and in some kinds of research. It's so paperwork intensive! You would think that, if I'm healthy enough to donate an organ, plasma would be no big deal. But there are a million forms to fill out, including notes from my nephrologist and the lab where I have my blood drawn, just to let them stick a needle in my arm.

But someone, somewhere, is glad I filled out the papers and donated the liquid part of my blood.

Fantasy vs. Reality

2011-05-25T21:26:00.002-06:00

Today I feel frustrated.

Kerry objected to me donating a kidney from the very beginning. He said he has too much on his plate already, and he can’t deal with one more thing before the end of school. Perfectly understandable, as the last two weeks of school can be brutal for middle school teachers. I promised him he wouldn’t have to do anything. I said I could do it myself, I could do all the testing, talk to all the doctors, make all the decisions, etc. The only thing I need him to do, I said, is take care of me after the surgery. He graciously agreed.

But it turns out, I lied. I guess I hoped he would want to talk to the transplant team and go with me to testing appointments and stuff. I wanted him to be supportive of this decision in the same way I would. I wanted him to read up on the procedure, to look up details, to have questions for the surgeon. I wanted him to be like me.

Which isn’t fair. He’s not me. He shouldn’t have to respond the way I would, or act like I would, or find comfort in the same way I would. He doesn’t have my personality, and that’s okay.

Still, my fantasy does not match my reality, and that’s frustrating.

Things to Feel Hopeful About

2011-05-24T22:26:00.000-06:00

What if the surgery is easy and I recover great?
What if I really like my recipient and we become life long friends?
What if hospital food turns out to actually be good?
What if I don't need narcotics after the first day, and Advil works just fine?
What if my new hat successfully hides all signs of bedhead?
What if my husband finds a book to read that he absolutely loves and doesn't mind sitting with me in the hospital one bit?
What if my my friends come to see me I'm not too grumpy to enjoy the company?
What if my friends send flowers?
What if my grandchildren and nieces and nephews send enough pictures to paper the walls of my room?
What if my youngest friends do the same thing?
What if I have a spectacular looking scar that looks like a battle wound that I can show off to grandsons who will think it's awesome?
What if somebody's "Day of Service" includes giving hospital patients free manicures?
What if my kids stay safe and happy the entire time I'm recovering?
What if some stranger reads my blog and decides she wants to help save lives so she goes to donate blood at her local Red Cross?
What if nothing from my "things to worry about" list actually happens?

Fast!

2011-05-23T18:59:00.000-06:00

Today I talked to my transplant coordinator. So far, all lab results look great. I'm boringly healthy--no diseases or problems, but no super-powers either. Friday I'll have blood tests for glucose, cholesterol, and viruses such as hepatitis and HIV. Then next week, meeting with a dietician, social worker, nephrologist, donor advocate, surgeon, have a CAT scan to make sure I have two kidneys, and then . . .
And then that's it. Testing will be over. Assuming everything still looks good, I can schedule surgery for whenever I'm ready. It seems like it's been so fast. It's almost overwhelming to be a week and a half away from approval to donate. I'm excited to do this, and terrified.
Someone please tell me a joke. I could use a distraction.

A Partial List

2011-05-23T10:12:00.002-06:00

Things to Worry About

· What if they forget I’m a LIVING donor and they take all my organs instead of just one?

· What if the nephrologist and the nurse get in a fight and start throwing needles at each other and all of them get stuck in me?

· What if I’m a big baby about pain and I whine and whimper for two days?

· What if I really like narcotics and become addicted?

· What if none of my friends come to visit?

· What if my young friends come, and they jump up in my lap and land right on my incision and I use words that children shouldn’t hear?

· What if my husband can’t work out his schedule to take care of me when I need it?

· What if the anesthesiologist passes out at the sight of blood?

· What if they lose my glasses while I’m unconscious?

· What if all the bills get sent to my insurance instead of my recipients, and I end up in collections because my insurance won’t pay?

· What if my dogs forget who I am while I’m in the hospital?

· What if the recipient’s body rejects my kidney and doesn’t get better and still has to wait for another kidney?

· What if my Kindle gets stolen and I have nothing to read?

· What if the tests show something wrong, and I can’t donate at all?

· What if I chicken out at the last minute, and someone has to tell the recipient they don’t get a kidney after all?

· What if I obsess over every stupid thing that could possibly go wrong?

That's What Friends Are For

2011-05-22T13:53:00.000-06:00

I've noticed that nurses, CNAs, doctors, technicians, and anyone else who works in a hospital seem to get pretty accustomed to seeing naked human bodies. There is nothing they haven't seen, and very little they haven't touched. It's good to have medical personnel comfortable seeing bodies, since that's how they make their living.
I, however, am not accustomed to showing my naked body. I prefer to wrap my body in fashionable clothes and adorn with jewelry. At the very least, I prefer to cover up to the extent required by my religion. (more covered than nudists, less covered than Muslims, for anyone curious)
I know hospital gowns are designed to allow quick and easy access to whatever body part is malfunctioning. They certainly do the job. They also are designed to keep a patient reasonable well covered. They don't do that job because, in my experience, not once has any medical type person remembered to snap and tie and put it all back together when they're done checking whatever-it-is. This leaves bellies, butts, backs, and breasts exposed anytime the patient shrugs her shoulders.
Knowing this, my dear friend has agreed to check periodically, tying and snapping and adjusting as necessary until I'm well enough to make them let me wear my own pajamas. You know you have a real friend when you can ask them to perform this particular task, and trust them to do it conscientiously.
The problem is how to get my own pajamas on over and around iv's and monitors and whatever else I'm tethered to. Any nurses out there have any suggestions?

Misconceptions

2011-05-20T11:34:00.000-06:00

I've heard several misconceptions about organ donation. Let me clear up a few of them here.

TV medical shows will sometimes show a person getting a call in the middle of the night, asking them to come to the hospital immediately as an organ has just become available for transplant. That is the recipient, not the donor. And the donor whose organs are suddenly available are usually deceased. I will donate on my schedule, at a reasonable hour of the day. The recipient will adjust their schedule to mine, but will have plenty of advance notice as I am not dead. My organs will stay viable as long as I do.

The long, long waiting list for organs is for recipients. There are currently close to 75000 people on the national waiting list for a kidney. The only waiting time for donors is the time it takes to complete all the testing. Testing is complex and thorough. They don't want to take a kidney from anyone who isn't completely healthy. As soon as the testing is done, it will be easy to find a match who can use my kidney. Blood type is the most important factor. I don't know what other factors are tested for.

Planning to donate does not affect my ability to donate blood or blood plasma while I wait. My body will replenish the supply quickly and easily, and as long as I have a week or so between donating fluid and donating a kidney, I will have plenty of blood for surgery to be safe (or at least as safe as possible).

Any other questions? If I don't know the answer, I'll add it to my every-growing list of things to ask the transplant team. I call them every day with more questions, and they're always very gracious about giving answers.

What Has Been Seen . . .

2011-05-19T22:22:00.000-06:00

Remember the 24 hour kidney function test I told you about? No? Check back a few posts, read the rules--it's icky. Especially the part about keeping the samples cold, which means keep it in the refrigerator.
I put in on the very bottom (just in case it leaked) with a note saying, "Do Not Look In This Drawer," and, "You don't want to know." My son came home from work, checked the fridge, and asked, "What do I not want to know, and why is there something that says bio-hazard in our fridge?" I told him he was welcome to read the label if he really, really wanted to know, but warned him that he didn't want to know. A few minutes later he came back. "You were right, Mom. I didn't want to know. I kinda wish I hadn't looked." Really, he cannot say I didn't warn him. What has been seen cannot be unseen.

High Heels in Recovery

2011-05-19T10:47:00.000-06:00

I wonder how I'll feel during recovery. I know I'll feel tired and sore physically, but how will I feel emotionally? I feel good today, healthy and well-rested, so today I like the idea of having friends and family come to visit me, staying to chat, bringing card games or treats. But really, when I don't feel good, I prefer to be left alone. I prefer not to have anyone bugging me, asking for my attention. I wonder which way I'll feel when I'm a patient in a hospital?

Today, the fantasy is that Kerry will sit with me, chatting quietly or watching me sleep. Anything I need or want, someone will bring to me. I'll have clean hair, makeup properly done, wearing pretty pjs or sweats. I'll be charming and friendly to everyone who comes, I'll entertain visitors with a hilarious account of the surgery and recovery to that point.

In reality, what I really need will probably be very different. Modesty and dignity is important to me. I'll be picky about being modestly covered at all times. I'll insist on closed curtains. I'll be showered and clean as soon as possible, but probably not full make up. I'll probably prefer that Kerry bring a book, so I can sleep while he dozes over a book. If you love me enough to want to visit, call first to see if I can be polite. I may be too grouchy for anyone to want to see me at all.

But maybe I will take a pair of really fabulous shoes. Even if I'm not walking, there's no reason why my feet can't be pretty.

In Which I Pretend I Can Read His Mind

2011-05-18T16:00:00.002-06:00

Kerry is nervous about the possible risks of my donating a kidney.

I believe his concerns center around three things:

Financial concerns. I am a student, he is a teacher. We are not rich, and will never be rich. I think he feels the constant weight of being the sole financial provider in our home. This nagging worry makes him reluctant to take on additional stress or worries.
Task concerns. Our home needs work. We are about halfway through a total remodel/redesign of our house and yard. The back yard was destroyed by construction of a large addition. The original house needs work and money to be as nice as the new space. There is a lot to do with limited time, energy and money. He doesn't enjoy home improvement projects, and feels intimidated by the task load. Adding the tasks of taking care of me after surgery feels like one more thing on his To Do List.

Risk concerns. There is a risk of surgery of any kind, up to and including death. I could die during this procedure. There is also the risk of negative health consequences of losing an organ. Should my one remaining kidney fail, I would have no back-up. I will certainly feel less than optimal during the recovery period, and will require extra help and TLC from my family in order to heal. I don't think he deals well with my illnesses, and this will look much like an illness.

Kerry is cheerfully supporting my decision. He and I have talked (and talked, and talked) about this, and he understands how important it is to me. I love him for being reluctant, but supportive and encouraging in spite of his hesitation. I'm lucky to have him.