Busy, Busy

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

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

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

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

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

• 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!

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

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

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

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 . . .

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

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

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

I believe his concerns center around three things:

1. 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.
2. 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.

3. 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.

Today's Test

24 Hour Urine Specimen Collection

1. It is recommended to start the collection in the morning.
2. Refrigerate urine throughout the entire collection period.
3.Avoid alcoholic beverages and vitamins for 24 hours prior to collection.
4. Do not change your eating habits unless instructed by your physician.
5. Do not drink more or less liquid than usual unless instructed by your physician.
6. Medications can be administered unless instructed differently by the physician.  Medications taken during the collection period should be listed on the requisition slip.

Collecting the Specimen
1. Obtain a specimen container from the laboratory or physician.
2.Write down the time and date you begin.
3. Urinate the first specimen into the toilet.  DO NOT include this specimen in the rest of the collection.
4. Collect all urine you pass for the next 24 hours into the specimen container obtained from the laboratory or your physician.  Make sure all urine is collected.  Come to the lab if another container is needed.
Note: if unable to urinate directly into the specimen container, you may first urinate into another clean container and then transfer it to the specimen container.
5. At the end of the 24-hour period, stop collecting urine. Make sure you consult initial starting time (from Step 2, above) to ensure a complete 24 hour collection.  Do not collect urine for more than 24 hours.
6. Label the specimen container (not the lid) with your name, birth date and the date and time you began the collection.
7. Deliver the specimen to the laboratory as soon as possible.  (Check with the laboratory personnel to see if a blood sample is required with the 24-hour urine before leaving the lab.)

In short, if you come to my house today or tomorrow, Do Not Drink the Lemonade!!

Laparoscopy

Removing a kidney used to involve a foot long incision extending from the side around the back, the removal of a rib, and very lengthy recovery times.  Now it's usually done by laparoscope.  It's not quite like removing a gall bladder or an appendix, when they are removing an infected organ and don't care if it is removed damaged.  A donated organ must be removed carefully and undamaged. 

A few tiny incisions are made below the bikini line for a camera and instruments.  A larger incision is made through the navel that the surgeon can reach his hand into, carefully extracting the kidney by hand so as to minimize the risk of damage.

The idea of someone making a tiny hole and cutting out a major organ by camera view is scary.  What if he cuts the wrong thing?  What if, somehow, the lack of sightline creates unforeseen complications.  Worse, what if the lack of sight means no one notices the mistake until days or weeks later, when my body is not healing and eventually they have to make a big hole and look around. 

My tubal ligation was a laparoscopic surgery, and I didn't worry as much at the time.  But once my baby got older and I started sleeping more regularly, I was retro-actively terrified--what if he had cut a urinary tract instead of a Fallopian tube? among other fears.

I'd almost rather have a giant hole the surgeon can see through.  I realize this is an irrational fear, but I'm not censoring my thoughts and fears here.  (I am censoring spelling and grammar, I hope.)

Hooray for the World Wide Web

Like everyone, I spend countless hours playing online.  I play games, visit social network sites, randomly surf, search for pictures of adorable cats, and a whole host of other silly things.  The internet is a great source for things to play.  It's also a great source for information.  I have visited many websites with mountains of useful information about kidney donation, kidney disease, living with only one kidney, dialisis and anything else you'd care to know.
Some of the most helpful sites I've found are
http://www.transplantliving.org/
http://www.unos.org/
http://www.yesutah.org/
If you are curious about organ donation, or want to know how you can help people lead better, richer lives, these are the sites to visit.  Donating your own organs is not required, there are lots of ways to help.

I also looked at my church's official website for any doctrine or counsel about organ donation.  It says organ donation is life-saving and the decision to donate should be made after careful consideration and consultation with healthcare professionals.  I look to my Heavenly Father in most major decisions in my life.  I am glad to know that He approves of this procedure.

Serious Thought, and the Morbid Humor Takes Over

I have spent many days in hospitals as a visitor, advocating for people I love who are too sick and weak to advocate for themselves.  In most cases, the patient returned to health and came home to resume a normal life.  In the case of my mother-in-law, a very elderly woman with rather advanced dementia, her children decided to bring her home on hospice care and let her go.  We all felt at peace with this decision, as if this were the choice she would have made for herself.

In all of this, I've been impressed with the level of care in hospitals, and none of it looks unbearable.  I am aware that incisions hurt, and that losing an organ will probably affect the way I feel after surgery, but I'm a pretty tough cookie.  I deal well with pain, I heal quickly, and I handle anesthesia easily.  I am prepared to accept pain and discomfort from this procedure.

I also understand there is a rather extended follow-up care period.  Even if I feel great and have no complications from surgery, follow-up matters.  Donating time for scientific research and study in the hope of improving the procedure and tracking possible risks and benefits of living donation is part of the process.  I don't have time to add silly things into my schedule, but this is important and worth spending time on.

I have a whole list of silly ideas to post here.  Is silliness and morbid humor appropriate here?  Vote in the comments section if you think dark humor will add to or detract from the nature of this blog.

The Decision

I had no trouble making the decision to be an organ donor.  I automatically chose to donate my son's organs when he died.  He was very tiny, and only his heart valves were useful, but I was happy to have someone's life improved from this small gift.  It didn't feel like a sacrifice to me--nothing would bring my baby back.  It was no further sacrifice to allow someone else to live.

Once I'm dead, I won't need my organs anymore.  If there is someone who can use them to prolong or increase quality of life, they should have the leftover meat of my body.  Heart, corneas, lungs, liver--anything that can bless another life should be used to promote health.

 However, there is very little chance I will die in an accident.  I don't live a risky life, I don't drive dangerously (usually) or participate in risky sports or activities.  Because of family history, there is a more than good chance that I will die at a very old age of cancer or heart attack.  In either event, my organs would not be suitable for donation. 

Today, I have a pretty boring medical profile.  Some depression well-controlled by medication, the occasional headache, and an aching knee joint.  I also have an extra kidney.  My kidney function has never been threatened, so my guess is that they are pretty healthy, and are likely to last a long, long time performing their intended function. 

If I am truly serious about donating organs to help someone else, I should do so while my organs are healthy.  That means I would have to be a living donor.  I don't know anyone now who needs an organ donation, but if I did, I would certainly hope to help that person.  Just because I don't know anyone who needs an organ doesn't take away my desire to give.  All people deserve to live, all deserve life at the highest quality possible.  Life tied to a dialysis machine, sick and weak, waiting for someone to die whose kidney would be an appropriate match, is not a high quality of life.  I want to help if I can.