Ray Mueller

I was a little disappointed this month to learn that the chain my kidney began is not resuming in July as had originally been planned.

As you may recall, four transplants resulted from my donation.   Each kidney recipient had a donor who didn’t match them but their donor “paid it forward” to a different recipient who also had such a donor, and so on.  Apparently, there is no match at this time for the person willing to donate on behalf of the fourth recipient.  Often a match looks good until the final testing days before the scheduled surgery.  There may or may not be a match for this donor in the future.

My disappointment is very human and understandable, I suppose.  Who wouldn’t want one’s donation chain to keep going and going?  But why do I want this?  Again I see mixed motives in myself.  I want as many people as possible to be helped, of course.  But I also enjoy bragging rights.  The bigger “my” chain, the better for me too, right?

Well, I’m trying (and it takes conscious effort) to put this all in perspective.  To base my reality less on my feelings and more on real things:

The chain is a group endeavor of the National Kidney Registry, all the donors and recipients, and all the people of the health care profession involved in it.  It isn’t just “my” chain.

The important thing about kidney chains is not how long any particular chain ends up being, but that kidney exchanges are happening, and happening more and more.

These chains work.  They allow persons who qualify as donors to help their loved ones even when they do not match.  Chains allow recipients with such willing donors to reduce their waiting time from several years, which they might not have, to a matter of months.

Kidney chains allow folks like me, who are willing to donate to anyone, to make the most of our donation, whatever that might be.

I remind myself that I’ve always felt my donation would be worthwhile if it helped just one person.  In fact, it would be worthwhile even if the transplant were not successful, because I still would be doing what I was called to do.  As is often said, God doesn’t call us to be successful but faithful.

If you are considering being a non-directed living kidney donor, I encourage you to check out the National Kidney Registry.  You can begin the process of donation by following the steps right on their website, as I did.

Last week NKR completed their 500^th transplant, more than all other kidney exchange programs combined!  And as an article in ScienceNews suggests, the larger the pool for coordinated transplant efforts, the better.  NKR is the largest.

I believe this registry can make the most of your kidney donation, whatever that might be.  They did for me.

A fellow alumnus of my college is donating a kidney to her dad tomorrow.

A friend’s family members are being tested to see who might be able to donate a kidney needed by one of them.

Two people whom I work with each have brothers afflicted with kidney disease.

I was not aware before how prevalent kidney disease is.  If I hadn’t donated, I probably still wouldn’t know, as these are stories shared with me in response to my story.

I’ve heard quite a bit lately about kidney disease and transplantation.  One man, upon hearing I was down to one kidney, assured me that his own experience living with only one has been fine.  His other kidney had not been working and was removed seven years ago.

Another explained that she knows what dialysis patients go through since she works with them.  She invited me to visit her unit at her hospital, which I hope to do before long.

Two stories were especially encouraging to me.  A colleague related how deeply disappointed he had been when he didn’t match someone he knew who needed a kidney.  He also shared his excitement that perhaps he would now become a non-directed donor.

Also, a young man told me of his consideration of kidney donation, in thankfulness for what he experienced.  A few years ago he needed a stem cell transplant which required an extremely difficult match.  There might have been only two possible donors on earth.  One was found, and the transplant cured his cancer and saved his life.

The saddest story was from an elderly woman.  Her husband had been on the waiting list for a kidney for five years, and was now too sick to get a transplant.  She expressed appreciation for my donation.  I said I would pray for them.

To me, these stories and others like them have affirmed my decision to donate.  More than that, they have deepened my gratitude for my good health.  I am thankful, too, that as a result, God afforded me the privilege of becoming a donor, and adding my story to theirs.

Terry’s husband needs a kidney.  Terry is a friend of my sister-in-law, and she is beginning the search for a living donor.  Read her comments to my blog posts of April 21 and May 25 to learn more.

This is not for everyone.  I believe it is a calling from God.  Is it possible that one of you reading this is being called to consider donating a kidney for Terry’s husband?

The day I donated my spare was one of the happiest days of my life.  To say that sharing a kidney is a rewarding experience is an understatement.  You know how when you experience something great, you want to share it with others?  Well, I want to share this experience with one (or more) of you.

And I want Terry’s husband to get the kidney he needs.  Not to have to go through years of dialysis.  Years he might not have.

You would need to qualify medically.  Are you a fairly healthy adult, particularly in regard to weight and blood pressure?  You can learn more online here about the donor approval process.

You would need to be patient and accepting.  The steps involved take time, and you might find that you are not eligible to donate.

You would not need to be a direct match to help this family.  If you’d be willing to simply donate on behalf of the recipient, then he can join a registry like the National Kidney Registry.  The registry would find a matching recipient for you, and in exchange for your donation, they would find a matching donor for him, as part of a kidney chain.  Being in NKR would reduce his waiting time from several years to an average of eight months.

You would not need to travel to Tampa or wherever a kidney chain recipient is.  Only your kidney would need to fly there.  You could donate at any of the participating medical centers in the registry.  If you’d prefer a different transplant center, perhaps it would be willing to work with NKR to accommodate your donation.

You would need to take a few days off from work, if you work, for medical tests, and at least a couple weeks off for recovery.  If you would have to take leave without pay, you would not get reimbursed.  Travel expenses would probably not be reimbursed.  Virtually all other expenses would be covered for you.

You would need to educate yourself and acknowledge the risks.  There are risks to any surgery.  But consider the risk of childbirth.  The day you were born, you endured a medical procedure that is about twenty times more risky than kidney donation.  Life is not without risks.

You would need to see the risks as being outweighed by the potential benefits, blessings that would accrue mainly to someone else.

But believe me, you would benefit too.

I believe that there are many called to donate their spare kidney who simply haven’t yet recognized it.  But as I experienced, every future donor goes through some experience that leads them to see it, to “get it, ” to wonder “Why not?” – something they read, something they see, someone they hear about, something they come across that may seem like happenstance but is really the call.

It has been nearly two months since my surgery, and life has largely returned to normal.  I’m aware of just a couple physical consequences of my operation.

I should still not lift things too heavy (although the definition of “too heavy” gets heavier each week).  Also, I still like to take afternoon naps when I have the opportunity, but it’s now more a desire than a need.  I’ve come to enjoy them, but don’t often find the time.

The psychological vestiges of the donation are more complicated to sort out.  I do feel a bit of a let-down that the excitement of the adventure has passed.  On the other hand,  I think having done this has improved my self-esteem, and I’ll take all I can get.  If this has helped me be more forgiving and accepting of myself and others, I’ll take that too.

It’s been nearly four weeks since my last blog entry.  Why so long?

I’m aware of at least some of the reasons.

There’s no urgency.  There’s less to write about and plenty of time to write it, so it’s easy to put off.

Also, I’ve been busy catching up with work.  I’m thankful that my clients didn’t need me during the few weeks of recovery, and even more thankful that they do need me now.

Perhaps most of all I feel ambivalent about the future of my blog.  How and why should it continue?

Maybe I won’t add much more to it.

Maybe I’ll set a new goal or two for the blog, now that a couple old goals have been met.

I had hoped to get more experience writing.  I did.  It became easier to write than when I first started it.  In fact, my first blog entry went through eleven drafts over seven months!  Meanwhile, I was noting in a diary things I’d want to write about once I finally got the blog started.  And once I did, the writing sped up.  But now that the anticipation and immediate aftermath of the donation are over, it’s been more difficult again to resume this writing.

Another goal was that my story might encourage others to consider making such a donation, and a couple people have told me that they are now considering it.  Two may not seem like a lot, but consider this:  there are only a few hundred altruistic kidney donors each year in the entire country, an average of less than a dozen per state.

How can more who are called to do this recognize that call and take action?  Suggestions are welcome.  I really do wonder why more people aren’t doing this, especially after my donation, because now I know what a wonderful experience it is.  As many donors have said, I would love to give away another spare kidney – if only I had one.

Three weeks after the donation, I resumed the monthly part of my work that takes me to a client’s video editing suite.  Along with afternoon naps, I had gradually done more work during these past weeks of recovery, but always in my home office.

This past Tuesday, instead of no commuting time at all, I had a commute more than two hours each way in and out of New York City, on trains and buses.  This did give me time to rest, if not actually nap.

Instead of walking the last half-mile in Manhattan as I had always done, I took the bus.  That helped conserve my energy.  It felt good to be working again within the energy of the city.

Of course I was plenty tired upon my return home.  More than that, I found myself irritable.

I had returned to the clutter in my house.  If my bad attitude was set off by a messy kitchen table left by other family members, that was, upon reflection, merely a stand-in for my irritation with the clutter in my life.  It’s the clutter and discontent, described in my first blog entry, which I had hoped the donation might help me transcend.

The donation is done.  Clutter remains, like my stacks of unsorted papers that I had thought of cleaning up during my recovery time.

But in recalling my writing that maybe the donation would remind me to be grateful, I thought, yes, I do have a lot to be thankful for.  The satisfaction of having donated did help me put in perspective the lesser significance of what was irritating me.

The next day that I returned home from the city, the same thing occurred – irritation, followed more or less by gratitude.  A negative attitude became a positive one, or at least one that was easier to live with, for both my family and myself.

I shared some of these thoughts this Saturday morning with my wife, before we arose for the day.  It was a conversation that would remind me of the one we had a year ago, also described in my initial blog, in which I first told her of my interest in donating.

“I’m glad you donated your kidney,” Mary Beth said.

I asked if she still thought I was crazy.

“A little.  But I love that about you.”

I told her how I loved that she had given me a book she had read, Hymn of the Universe by Pierre Teilhard de Chardin.  In a cosmological, mystical mood yesterday while commuting, I had begun reading it.  I don’t know how far I’ll get, as it isn’t light reading.  But I like it.

Then Mary Beth told me something I was not expecting at all.  She had been thinking lately of donating her body to medical science upon her death.  Although like many, my driver’s license indicates my willingness to be an organ donor at that time, giving one’s entire body is not something I’d considered.  It not even something I particularly wanted to think about, especially in regard to my wife.

But I remembered how gracious and accepting she had been when I had surprised her with my kidney idea.  I responded in kind.

“Well, dear, if this is something you’d really like to do, I won’t stand in your way.”

As Diane of the National Kidney Registry suggested, my wife and I had a pillow in the car for my return home the day after the surgery.  Placing it between my abdomen and the seat belt helped smooth out the bumps.

In fact, over the months leading up to this, Diane’s checking in with me and offering advice and info on what to expect has helped smooth out much of this whole process.

It was great to get home and see the kids again, assure them in person that I was fine, and show off my four little bandaged scars.  I was also eager to post at least a short update on my blog.  Looking back on my April 4 entry, I see it was a little too short.  I had neglected to include thanks to everyone here for your prayers, support and encouragement.  Can I blame my state of still being a bit drugged up?  Anyway, thanks are certainly in order.

Even writing a short blog entry was a big effort for me that day.  Naps, rest, and taking it easy was the main agenda, along with an occasional Percocet, as prescribed for the pain.  I took my last one the next day, and then took Extra Strength Tylenol for a couple days after that.

This handled the pain, which was especially in my shoulders.  I had been told to expect this, which for some reason was a consequence of the gas that had been injected into my abdomen to enlarge it and give the surgeon room to work.

There was one time when apparently I didn’t take the medicine soon enough and experienced so much shoulder pain that I didn’t think I’d be able to lay down.  But after a lot of maneuvering, I managed to.  And then, just as quickly, the pain left.

The days before and after surgery I also took Milk of Magnesia.  This was to minimize constipation from the pain meds, which actually continued until the fourth day after surgery.

What I never took was aspirin.  My discharge instructions emphasized that, after kidney donation, one should avoid aspirin and all “non-steroidal anti-inflammatory drugs” such as ibuprofen.  An exception can be made once in a while if nothing else is available, but generally I am to stick with Tylenol (acetaminophen) for the rest of my life.

The first night at home, even though I still could not sleep on my stomach, I did get a good night’s sleep.  I slept in so late the next morning that Mary Beth said she would have brought me the paper but figured I should at least get up and eat breakfast.

It was our 26^th wedding anniversary.  I told her how much I appreciated how she had dealt with my desire to do this donation:  her honesty in expressing her reservations and yet her acceptance of it, and most of all, her support for me.

As the days went by, I gradually did more work in my home office, including blogging and finishing my tax returns.  I felt a little stronger, a little more my usual self, each day.

On April 11, I enjoyed getting out of the house, driving myself the seven miles to my local hospital in Hackettstown for blood tests.  They were needed in preparation for my follow-up visit with the surgeon on April 16.

Since the surgeon was at Saint Barnabas, 30 miles away, Mary Beth insisted on driving me.  My test results were fine.  My creatinine level which measures kidney function was up to 1.5, but should come down in coming days.  Dr. Geffner removed the bandage strips and proclaimed my scars healing well.  The sutures are internal and will dissolve automatically.  He explained no contact sports for me now.  No problem.  I can still zipline.

I could finally see the actual size of the incisions.  Sure enough, the longest is only two and a quarter inches!  The other three are between three-eights and three-fourths of an inch in length.

Follow up care beyond this visit can be with my usual local doctor.  The transplant center will monitor test results and doctor visits at six months, one year, and two years.

So this might have been my last visit to Saint Barnabas, a total of eight visits in all since last September, plus three visits for testing at my local hospital and one to the donor advocate.  Many if not most transplant centers concentrate the tests over fewer days, requiring fewer visits.  It was fine with me however, to spread this process out.

One thing I continue to maintain is daily afternoon naps.  Diane had emphasized how much fatigue I might experience, even for many weeks afterwards.  Becoming tired in the afternoon is now about the only consequence of the lingering recovery that I feel.

Last Thursday was the one day so far I didn’t happen to take a nap.  I got through that day well enough that it encouraged me for this coming week.  Tuesday and Thursday will be the days that I need to resume the part of my work that is done in New York City.  It involves commuting by train and bus more than two hours each way.  But naps on the train are possible.

I’ll try to remember Diane’s advice as much as possible:  go slow and take it easy.

My recovery is going so well that my wife is hinting that my pass on doing household chores is fast coming to an end.  Last night was a night I would normally have done the dishes.  She loaded the dishwasher for me, but didn’t start it, to see if I would at least do that much.  Of course, nothing was farther from my mind.  I guess that’s why she felt she had to mention it.

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After the time in the recovery room following my surgery on April 3, the time in my hospital room was quite pleasant.  In fact, I felt great.  This was probably a combination of relief that the worst was over and the result of the drugs having their full effect.

Because of renovation on the transplant floor, I ended up in a private room, and appreciated this enormously.  I didn’t have to overhear someone else’s TV, or have them endure overhearing my phone calls.

My kids let me know later how much they enjoyed my drugged-up phone conversations that day, listening to me explain, as if they didn’t know, that morphine might be contributing to my good feelings and that it is sometimes misused as a recreational drug.

Eventually I checked out the scars on my belly.  Three were very small, used only for the laparoscopic instruments.  The other had been lengthened to a two and a half inch incision for the kidney removal.

There were five things now attached to me.  Liquid dripped from a bag overhead into my arm through an IV, providing both food and pain medicine (Dilaudid).  Oxygen entered my nose.  A catheter drained urine as soon as my remaining kidney made it, into a jug that was always measured.  Since the urine never built up in my bladder, I never had to give any thought to “going,” allowing me to stay in bed the rest of the day.  This was good, since I sure didn’t want to get up.

The other two things attached to me were bags that surrounded my legs to keep the circulation going.  The bags would periodically inflate and deflate, their motion reminding me of our cats at home when they would nestle at my feet while I slept.

The nurses provided a lot of meds, including anti-nausea and anti-constipation drugs (to counteract the pain medicine), something to keep my red blood cell count up, and a blood thinner to prevent clots.

Mary Beth’s presence throughout was a big reason why resting there was so pleasant.  I had recently read that holding hands with a loved one reduces stress, and I made full use of that knowledge.

She took the National Kidney Registry up on their offer of a hotel room for her for that night.  Since we only live 40 minutes away, we wouldn’t have thought of this ourselves, but it was great for her to not have to travel.

That night, everything that was hooked up to me was removed, but I still could not sleep.  I was not allowed to sleep on my stomach, which is my habit.  Also, the regular checks of my vital signs continued all night, at least every two hours.  How does anyone sleep in a hospital?  Even a video channel showing nothing but waves upon an ocean shoreline didn’t help.

The next morning, with my wife’s help, I sat up.  Then I took my first steps.  It wasn’t bad, but I was soon ready to lay down again.  Later, Mary Beth and I walked all around the hospital floor.  I felt stronger by the hour.

My pain medicine was now Percocet, which includes oxycodone.  I was encouraged to ask for it before the pain got too bad and hard to control.  So I did, and this worked well for me.

Early that afternoon I was washing my face in the bathroom when Dr. Geffner stopped by.  He told me how well the surgery had gone, was satisfied with my recovery, and said I could be discharged that day.  That was exactly what Mary Beth wanted to hear.  I was okay with that too, as long as we took more of the day for me to rest up before we dealt with the move home.

That afternoon, five members of the medical center’s Living Donor Institute visited.  They had had concern about tornadoes which had closed a major airport in the state to which my kidney was headed.  But fortunately the airport where my organ was going did not close.

I also learned that in the chain my kidney began, the donors did not wait.  They paid forward their kidney to someone else even before the kidney for their loved one arrived.  That sped up the process.

So Marie Morgievich, Manager of the institute, gave me the news.

“Yesterday, four people all got kidneys due to your donation.”

All the recipients and donors were doing well.  I started to get a bit emotional.

But I didn’t let that get too far.  I could feel that any shaking in my midsection was causing the area of my incision to really hurt.

It is Easter morning.  He is risen – indeed!  I can’t remember another Easter in which I was not celebrating the resurrection of Christ in church with others.  Instead I am home, continuing to rest up.  Perhaps writing today about my recovery from being put to sleep for my surgery will give me a bit more insight into the meaning and joy of the true resurrection.

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I was confused.  I did not know where I was.  Most of all, I was in terrible pain.  I felt like a deep dream had turned into a horrible nightmare.

When I finally realized I was waking up from the surgery and laying in the recovery room, I felt alone, isolated.  The awful pain seemed to go on for ten minutes before a couple people showed up and quickly administered the “TAP block” anesthesia to the area of my incision.  The effect, it seemed, was immediate pain relief.

I was wrong about having been left alone.  I never was.  My sense of time was way off.  I had amnesia due to anesthetics, as Dr. Mulgaonkar explained later, and as my wife confirmed after I was home from the hospital, when she told me how out of it I had been.

After she and I had said goodbye about 8 that morning, right before I was wheeled into the operating room, she had breakfast and waited.  After a little more than two hours, Dr. Geffner visited her.  The surgery had gone fine, there were no complications, and the kidney looked good.  She could visit me in a little while.

The receptionist was surprised, saying Dr. Geffner hardly ever lets people into the recovery room.  But about an hour later, a little after 11 am, my wife was led into it.

I looked like a mummy, with blankets wrapped all around my head, only my face visible.  She, on the other hand, looked beautiful, and any lingering feelings of pain were gone as we began holding hands.

“My dream turned into a nightmare.”

“It was the worst pain I’d ever had in my life.  Seemed to last for ten minutes.”

“I woke up on my left side.” (I had expected my right side, away from the incision).

As I only learned later, I told her these things repeatedly.  Each time it was as if I were saying them for the first time.  Mary Beth’s only comparison was to someone with Alzheimer’s disease.

After about the third time I said that this was the worst pain of my life, she said, “Well, you’ve never had a baby.”  That I remember.  I responded that I didn’t know how anyone would do that more than once.

I resumed repeating these same things over and over, at least ten times during the twenty minutes or so that she was with me.  As I did, she recognized her recovery room experience for what it was:

“This wasn’t a conversation.  It was an act of mercy.”

One of the top five happiest days of my life was this past Tuesday, the day of my surgery.  It rates right after the day of my marriage and the days my three children were born.  My dream of sharing my spare kidney was fulfilled, and I learned that the recipient was doing well with it.

Furthermore, through the National Kidney Registry, the recipient had a donor willing to “pay it forward,” and this began a kidney chain that would result in three others getting a new kidney that week.

It happened at Saint Barnabas Medical Center in Livingston, NJ, through their Living Donor Institute.  After NKR gave me preliminary approval as a donor, they asked me to chose a transplant center from their online list of those in their network.  The choice of the one at Saint Barnabas was not difficult.  It was the closest (40 minutes away), the largest in the state (and second largest in the country), and very highly regarded.

I have never regretted the decision. Dr. Shamkant Mulgaonkar and everyone on his transplant team have been generous with their time, highly competent and caring, and I can’t imagine how the day of the surgery could have gone smoother.

It began about 3:45 am when Mary Beth and I woke to arrive at the hospital at 5:15 for the 7:30 operation.   Fearful of throwing everything off with a last-minute accident, I was extra careful driving that morning.  As we waited in the receptionist area watching the Three Stooges on TV, I was nervous but glad that I was not waiting to go skydiving.  For this operation, I would just have to lie there and trust in others.

Soon we were in the pre-op room and I changed into my hospital gown.  My vital signs were checked and the portal for inserting the anesthesia was installed in my left arm.

After a visit from the anesthesiologist, my surgeon, Dr.  Stuart Geffner, came in.  I told him how I had read in a Newark Star-Ledger series of articles from 2009 of the nice things he said about the care donors should get, and thought to myself that that’s the surgeon I want.  So I was glad he was the one.  He smiled and explained essentials of the upcoming procedure.

He said there was a chance that if complications arose, he would have to switch from the minimally invasive procedure to open surgery.  I appreciated his adding that in over 1,000 such operations, he has had to do this only twice.  I had heard that the open surgery, common before the current laparoscopic technique, left a huge “shark bite” scar.

Before he left, Dr. Geffner said we had to do the “yes.”  Using a marker, he wrote it on my stomach, about eight inches to the left of my belly button.

About 8 am the bed I was on in the pre-op room was wheeled into the operating room.  This seemed natural.  Only now as I think back do I wonder why this bed was needed.  I was not sick or injured.  Why not have me walk to the operating room and then hop up on to the operating table?  Because, I figure, that’s not the culture of the operating room.

I’d only been in an operating room once before.  That was 24 years earlier, to videotape open heart surgery at a hospital in Miraj, India (not far from Dr. Mulgaonkar’s home town).

There are about a half-dozen people in the OR, and I see two or three monitors with color bars on them.  As they have me slide myself over from the bed to the operating table, I ask about the lighting used by the laparoscopic camera, and how, as Dr. Geffner had explained, the camera and other instruments like scalpels are moved around as needed, using the four laparoscopic entry points.  Their answers are interesting, and I’m thinking how this is good.  It is taking my mind off what is to come.

On the table I see the anesthesia already start to drip into the tube connected to my arm.  For my recent colonoscopy, I was told when the anesthesia was beginning.  I lay down and started counting silently to myself from ten.  Before I got down to six, I was out.

But this time, my last memory is being in conversation about the cameras, talking about how I had first thought there would be four – a multi-camera production.

I wonder now if the OR staff thought it funny how my talking suddenly came to an end.

My recipient is doing well, I am doing well, and so are the other donors and recipients who participated through an NKR kidney chain in four transplants yesterday!  Mary Beth and I have just returned home, minus my left kidney, after spending less than 36 hours at the hospital.  That is how quickly it can happen due to medical progress in recent years.

“That looks a lot like work!” is my wife’s response to seeing me write this blog post.  I know, I know.  I need to cut this one short and resume my rest and recovery, now here at home.  But I look forward to writing more over the coming days about this awesome adventure.