Recovery: Waking Up

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.

________________________________________________________________

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.”

Posted in Uncategorized | Leave a comment

Anticipation: The Hours Before Surgery

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.

Posted in Uncategorized | 4 Comments

Success: Thank God!

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.

Posted in Uncategorized | 1 Comment

Testing and Trusting: Preparing for the Surgery

For the most part I’ve enjoyed the medical preparations for kidney donation.  I’m not sick.  I wasn’t in an accident.  I don’t have to worry about the cost.  I have a good excuse to take time off from work.  I can relax, and when I do, I find much of the testing process interesting.  A notable exception:  the second 24-hour urine collection!

Another notable exception:  my colonoscopy, or rather, the preparation for it.  At first I thought I’d get out of it because I’d had one within five years.  But then the five years expired.  My second one gave me a chance to see what being put to sleep was like, but other than that my first colonoscopy was more interesting.  I had the first one without any anesthesia.  It was a little painful for a few seconds when the scope had to navigate a couple bends in my colon.  But being a video guy, I enjoyed watching the whole thing on screen as the doctor gave me a live tour of my large intestine!

Another time, for that pesky microscopic blood in the urine issue years ago, a cystoscopy was done and the doctor showed me a video image of the inside of my bladder.  I couldn’t really make out what I was seeing but I remember the doctor saying “Here are the two holes.”  I didn’t ask him what I was thinking:  there are two drains in my bladder??  Only later did I realize one was the input and one the output.

Anyway, it’s good I don’t mind these tests too much because some are repeated.  For the preadmission testing I had a second EKG and chest x-ray.  Again, blood was drawn, this time 22 vials of it!  Eight were shipped off to the recipient’s hospital.  The nurses did admit that some of them were spares.

I suppose a lot of my tolerance and interest in all this testing is excited anticipation of making the donation.  So tomorrow it will happen, by the grace of God.  It will be the first time I’ve been a hospital inpatient since the week I was born.

We’ll see how much I enjoy this experience after the surgery.  I’ll be given two anesthetics, one of which will be propofol (yes, the one made famous by Michael Jackson’s demise), to both put me to sleep and paralyze my body.  I’ll be connected to a respirator to monitor my brain, heart, breathing, etc.

Only one of the four laparoscopes will have a camera (my March 21 blog mistakenly suggested that this would be a multi-camera production).  The other laparoscopes will include harmonic scalpels that cut through tissue via vibration, using high frequency sound waves.

At the operation will be the surgeon, an assistant surgeon, two anesthesiologists, two nurses and an assistant.  It should take about two hours, and when I wake up, I’ll have an IV for food intake and a catheter for urine output.

I have been warned to expect pain.  This weekend I read material online listing dozens of questions to ask the surgeon and other hospital staff prior to this surgery, and encouraging me to develop in advance a pain management plan.

Well, that was written a decade ago.  From what the doctor said, pain management has advanced enormously in recent years, especially since ultrasound will be used to guide a “TAP block” to target a local anesthetic to the nerves of the two-inch incision.  In the recovery room I’ll be given morphine, and thereafter the doctor said to not hesitate to ask for pain medicine.

Perhaps I will regret not asking more questions, but all my impressions of the doctor and medical center are positive and reassuring to me.  The doctor is a nephrologist – a kidney doctor.  I have yet to meet the surgeon, but my confidence in this team and the surgeon’s reputation is such that I am okay with that.

Nevertheless, I woke up this morning worrying that I haven’t done a living will and haven’t make a listing of where all our important financial documents are located.  I had meant to have these done by now.  Instead I’ve been focusing on what brings in income, getting enough of my video work done so that I can leave it for the next couple weeks.

I concluded that I need to have faith and not be concerned that these things aren’t done, at least not any more than usual.  They do need to be done, but anything could happen any day.  Tomorrow isn’t that much more of a risk.  This is in my mind.  But my emotions are something else.  I find myself wondering how bad it would be if I didn’t make it through and these things were not done – as if that were to be the worst of it.

Doubts are real, but faith must prevail, by the grace of God.

Posted in Uncategorized | Leave a comment

Getting Support: Help Along the Way

Back in September, I had to meet with a “donor advocate,” someone not affiliated with the transplant center.  But why?   I could understand those that were giving to a loved one needing someone to make sure they were not feeling overly pressured to donate a kidney.  But my donation was my idea.

By the end of the meeting, however, I was glad for it.  It was encouraging to review with someone independent my motivations, understanding of the risks and benefits, and implications for my family.  When I summarized my reason for doing this with “Why not?” she understood because she had heard it many times before.

While family, friends, and the transplant team have been universally supportive of my doing this, there have been many other people who, like the donor advocate, have been of help during this process especially because of their personal experience with this issue.

Diane has been invaluable throughout, not only as my contact with the National Kidney Registry but also as a donor herself.  She recently talked with me about what to bring to the hospital (for example, loose-fitting clothes and a pillow for the ride home) and what to expect in the days and weeks afterwards (lots of fatigue, sleep, and gas).  She said NKR would pick up the cost of a hotel room near the hospital, which my wife gladly accepted.  As the doctor had emphasized, she mentioned the importance of my managing the pain afterwards with meds and not picking up anything heavy for weeks.

Online I’ve received support and encouragement through social media, including NKR’s group on LinkedIn and the Living Donors Online group on Facebook.  I’ve also come across items of interest to me through these groups that I hadn’t otherwise seen in my usual internet searches.

Reading through blogs of other donors, from their first posts onward, have helped me feel connected with others who also sense this calling to share a kidney.  One of my favorites is Angela Stimpson’s blog.

Contacts by phone and email with other donors have also been supportive.  Diane put me in contact with Barry in a neighboring state who is about my age and started a chain not long ago.  Here’s something from an email he sent me yesterday:

“No regrets.  None.  To this day.  The euphoric high of the experience does indeed wear off, so please work to minimize an emotional crash and burn from that.”

Barry’s point was well taken.  It reminded me of other comments from my reading online and from the transplant team social worker.  It sounds to me like a kind of “postpartum depression” can set in, after the excitement of the donation itself.  Perhaps knowing in advance that this is possible and normal will help.

In fact, that seems to be a big part of what all this kind of support provides:  knowing and accepting in advance what to expect.  There’s no substitute for getting help from those who have gone before.

 

Posted in Uncategorized | Leave a comment

Reflecting on Life: The Family Meeting

“Why do we have two kidneys?”

My son asked this of the doctor last Thursday at the meeting the transplant center planned, in which my children met the transplant team and learned about kidney donation, the operation, and follow-up care.

My doctor was so thorough that it was the only question any of my three children had, the oldest listening in by speakerphone from Vermont.  It was a good question.  I don’t remember a lot of the doctor’s answer, but I remember thinking about the topic and talking with Mary Beth about it Saturday morning before we got up.

The embryo grows in various ways, and two kidneys are a part of the design.  If we had two hearts, the doctor explained, that might cause heartbeat synchronization issues.  I could think of other organs which serve a controlling function.  It makes sense to not have two brains or pancreases competing with each other.  We tend to have two organs where work needs to be performed without controlling the body, such as the lungs, ovaries, testes – and kidneys.

My wife and I talked about how after the fertilized cell splits into two, some organs grow as pairs and some don’t.  There’s one heart but it has two chambers, one brain but both a left and right side.

It’s really all miraculous. Our very existence, our very consciousness, all miraculous!

Mary Beth brought up newer theories in physics – speculation that consciousness may be more real than the physical universe.  Whenever we talk of such things now, it brings back fond memories of our earliest dates – discussing questions of existence, time, space, God…

We don’t remember the very first time we came across each other, somewhere on the office floors at Covenant House, a large non-profit in New York City.  Our first specific memory is our puzzling over a diagram she had up in her office of an hourglass.  The point where the sand falls through the thinnest part is the present moment.  Above that is the future.  Below is the past.  But all of time, like all the sand, still exists.  Time is relative.  True reality, like God, is outside of time.  Or something like that.  God only knows.

Is it the imminent prospect of being put to sleep on the operating table that is causing me to ponder broader things?  To consider more deeply my relationship with my wife, with God, with existence in general?  Is it due to the time fast approaching when, under anesthesia, I will have no control over my body, having to trust entirely in another?  Is this not a reminder of how life itself is a gift, one that we don’t control?  A gift from some One else?

Anyway, the family meeting went well.  My kids enjoyed hearing what we hope will happen soon.  For example, the kidney, boxed in ice with a GPS tracker, will trigger the start of the operation on the recipient once it lands at the airport of its intended destination.

Meanwhile, if all goes as planned, the recipient’s donor’s kidney will fly off to a different city, a sequence of transplantation to be repeated three more times that week.

I started to tell the doctor I knew I couldn’t skydive afterwards, but could I – and then he interrupted.  Where did I learn that?  Don’t believe everything I read online.  I could still skydive, he said.

I immediately reassured my wife I still had no intention of skydiving.  The upcoming operation will be (I think) nothing compared to my anxiety if I were to attempt that.  I was, however, glad to hear that I can zip line on a family trip we have planned for this summer.  The only restrictions from my doctor:  no boxing and no ice hockey.  No problem.

Prior to this meeting, my son had not wanted to attend.  My younger daughter hadn’t wanted to miss a day at high school.  But leaving the transplant center they both said they were glad they had been there.  I was glad they had indulged me.

Posted in Uncategorized | Leave a comment

Getting Real: Meeting the Transplant Team

Diane of the National Kidney Registry called me last Friday to see how I was doing.  Getting a little nervous, I admitted.  But also excited.  I couldn’t help asking about the kidney chain they are developing with their state-of-the-art transplant algorithms.  It is six deep and involves five states.  Plans are in the works to use a bridge donor to extend it to another cohort of donors and recipients.

I’ve always thought how this is worth doing for the sake of the recipient.  To start a whole chain?  Talk about icing on the cake!

________________________________________________________________

“I didn’t know it was this far along.”

I had just told Mary Beth that our meeting the next day, September 1, 2011, was described by the social worker as “a meet and greet with the transplant team.”  My wife knew we were going to the hospital to see a doctor, nurse and social worker, but apparently “transplant team” sounded a little presumptuous for her at that point.

“I thought they would want to know if the spouse agreed with this.”

The reality of what we might be in for hit me more deeply the next day, as we walked down that first long corridor in the medical center. This was now less virtual, more physical.

For the recipient’s confidentiality, the transplant center and their staff is not being identified here, though I would love to credit them.  They have been terrific.  The head doctor visited with us for 75 minutes.  He explained the need for patience, as they do not rush the process for live donors.  Mary Beth immediately expressed her support for this.

I was reassured when I heard the doctor talk about his working relationship with Garet Hil, head of the National Kidney Registry.  He had provided Garet with consultation and found him to be very selfless, generous, and open.  Until then I had an unfounded concern that the hospital might not have taken seriously my intent to go through NKR.  The doctor said once the workup was complete, they’d let NKR know they had a donor ready to go, and then NKR would work on the chain.

The doctor explained the procedure as he drew this diagram.

The little diamonds show where three or four pencil-sized laparoscopic instruments with miniature lights and cameras go into the abdomen, which is inflated with CO2 gas to provide room to work.

The short, tiny parallel lines show where the vein, artery, and ureter are stapled shut.  Since these tubes are longer on the left kidney, that is usually the one removed.  No knife is used.  It is a bloodless procedure. Once disconnected, the surgeon reaches in through a two-inch incision and pulls out the fist-sized kidney (that step I had read earlier online, another moment when the reality of this had sunk in deeper).

In the recipient, the old kidneys are left in place, and the new one is placed lower, near the intestines.

The doctor explained that of the hundreds of kidney donations they have handled, only a handful involved any complications.  From memory he explained each of these five that had a major issue.  None of them resulted in any lasting negative consequences.  That sounded good!

I asked a question my older daughter had once asked.  If she donated as a young woman when she did not have high blood pressure and was not overweight, and then had such issues later, would it be a problem that she only had one kidney?  It would not be, since she is Caucasian, he explained.  But as doctors tend to do, he added that she should in any event live a healthy lifestyle.

One of my brothers also had a question.  Would my family members, like myself, be put at the top of the waiting list if I donate and later a kidney is needed?  No, he said, it’s an example of how we can’t give our children everything.  If they need one later, we’ll see what can be done then.  Perhaps by then, stem cell progress might have resolved such needs.

After meeting with the nurse, signing releases, and getting a packet of information, we met at last with the social worker.  They no longer required a psychologist-administered psych evaluation.  However, the social worker asked so many questions about where I had lived and worked, what work I did, where I went to school, my early family, etc., that I wondered why she was so interested in such obscure things.

But I realized by the time she was done, she had my complete life story.  As Mary Beth confirmed later, that was the idea, and part of the evaluation.

The social worker emphasized my option to back out at any time.  I had known from donor blogs that we get told that a lot.  She asked what might cause me to change my mind.  I could only think of unforeseen events like a diagnosis of cancer or if my wife would start freaking out about this.

At this point, at the end of the day at the transplant center, Mary Beth said that she was fine with my doing this, and in fact a little proud of me.  Maybe she was no longer hoping I would fail the tests.

Posted in Uncategorized | 3 Comments