A Tale of Two Kidneys

Part 1: Sister, Can You Spare a Bean?

Almost three years ago a dear friend posted on FB that her sister would be needing a new kidney. They had already lost family members to a hereditary kidney disease; my friend and her children didn’t inherit that gene, but her sister did.

So Micky put out the call asking if anyone would consider donating a kidney. My first thought was, “I can’t let Micky lose her sister!” I messaged her right away to say, “I’m in!”

She put me in touch with the donor coordinator at University of California in San Francisco (UCSF), which was where the procedure would be performed…eventually. I had an intake interview about my own health, and my family history of cancer and kidney disease. And for the first of many times, I was asked if anyone had offered money or had in any other way coerced me into donating my kidney.

The Donor Coordinator sent a packet of info. It included an outline of the process of qualifying to donate, what to expect from surgery and recovery, how the donor’s health might be impacted, and the safeguards and benefits which would accrue to the donor (that’s me!).

I read all the brochures, filled in all the forms and sent them back.

I should mention I did skip one wee step: I forgot to speak with my wife before I jumped in, kidney first. Don’t get me wrong: she’s been 100% supportive. But, yeah, a person should discuss a little project like this with their life partner before making a commitment.

But, hey, we got a new running joke out of it called: “List Of Things To Talk About Before We Do Them”. So, I guess it worked out okay. (Thanks, partner!)

Next up: Testing, Testing, One Two Three Hundred

Part 2: Home is Where the Tests Are

After I filled out the first batch of forms I was assigned a Coordinator (Elizabeth) and an online Patient Portal was created. With this, I could link all of my new records with that of my other medical facilities, including my GP. The portal also allowed me to review the results of every test that would be done, read the notes created by every specialist I spoke with, and track upcoming appointment.

I have to say I was impressed by the whole process.

I live 1000 miles from UCSF. The portal streamlined things, as did the use of video chats for interviews. And all of the preliminary blood and urine tests were done near my home. UCSF mailed me kits along with authorization, which meant the lab would bill UCSF and not my usual insurance.

Surgery is typically done where the recipient lives. There are several reasons for this. By definition, the recipient is in ill health, so you wouldn’t want to add travel to that. Conversely, also by definition, the donor is in good health. Which is good, because the process of having a kidney removed is more involved than having one implanted.* There was no travel involved for me until everything that could be done remotely was completed.

So! An intake interview with Elizabeth, starting with my relationship to my Intended Recipient (IR). We discussed my family history of cancer, kidney disease, substance abuse, and depression, and my reasons for wanting to do this. (“If I saw someone who’d been in a car wreck, I’d run to help them,” I said. “This is just a slow-motion accident.”)

And once more for auld lang syne: had I been offered any remuneration for donating my kidney? I was ready for it this time. “No, I’ve made it clear the first one is free. But if anyone wants the other one…”

*All things being equal for the donor, the surgeon usually takes the left kidney because it’s easier to implant. The recipient is placed under general anesthesia, and the new kidney gets implanted below the diseased one, which is tied off. This is all done laparoscopically, so the surgery itself causes minimal shock to the body.

Next up: We Want Your Blood

Part 3: “You’ll Feel a Little Pinch”

After the intake interview (via video) and having filled out all the online forms promising my first-born child…no, wait: that was a different transaction.

Having provided all the info on my family medical history, and signed the forms allowing my doctors to share info with the UCSF donor program, it was time for the first round of testing.

UCSF Fed Exed instructions. First up was taking my blood pressure at home and uploading it to My Portal. This was easy, since the BP monitor I bought had a built-in program. All I had to do was take my BP twice, 20 minutes apart, plug the monitor into my laptop and follow the prompts.

Next, it was time to visit Labcorp. I had the list of necessary blood and urine tests (and all the tubes, pre-labeled!) and the authorization for payment from UCSF.

One test was for fasting blood sugar: nothing but water from midnight until the blood draw and urine sample in the morning. Then I got to drink that delightful glucose cocktail and come back in four hours so they could measure how much sugar had been processed by my kidneys.

Finally, coffee and breakfast! And a week later, every woman’s favorite: what we refer to in my house as “titty squishy and a rump-ba-bum-bum.”

I, um, “passed” both.

Next up: It’s a Match, Almost…

Part 4: Two for One!

My next partner in the process was the Transplant Nurse. We spoke via video, and she explained all of my test results and how they related to my eligibility as a donor. She also gave a preview of the tests still needed. (Those would be done at UCSF after the rest of the interviews.)

Alas, I was not a direct match for my Intended Recipient. This wasn’t a big surprise because it only works out that way in a minimum of pairings, and I had been forewarned. But I could still donate.

A few days later, I had a conversation with a Donation Coordinator. She asked basic questions about my Intended Recipient. How did I know her, and did I understand we were not a direct match? This meant I would be donating to a stranger. Did I still want to proceed, and if so, why?

Well, to my way of thinking, not being a direct match made the prospect even more attractive. My kidney would go to someone who was on the transplant list already—and probably on dialysis. (Dialysis keeps people whose kidneys are already failing alive. It’s a miserable existence: six hours a day, three days a week. And feeling horribly sick and weak on the days in between. Not to mention knowing they are actively dying, and odds are they will die before a kidney is found.)

Not a direct match, you say? That meant my kidney would go to a stranger who needed it now. AND my friend’s sister would get a “voucher,” making her eligible for a kidney as soon as they found a match. Wow, my donation just became a two-fer! What’s not to love about that? Sign me up, please!

Next up: A Peek Inside My Head

Part 5: Never Have I Ever

Only one conversation to go, and it would be time to fly to SF for the final medical tests.

This one was with a Social Worker (Diane) and if you thought the process was thorough before, you ain’t heard nothin’ yet. Because they weren’t just screening for physical health.

Diane asked me to describe my childhood: how many siblings (6), my place in the line-up (smack dab in the middle), and what my parents’ relationship was like. After 16 years with the same therapist, I felt I had a good handle on that.

Was there substance abuse? (Yes.) Physical or sexual violence? (No. Unless you count the time one of my sisters threw a forkful of mashed potatoes at me from across the table…because I was happy—Okay, I may have tattled on her earlier in the day, but still…) Was there fighting between my parents? (Yes, in the form of yelling. Then divorce.)

We talked about my history as a lesbian. When did I first realize I liked girls “that way”? (Before kindergarten, although I didn’t have a word for it yet). The first time I fell in love, and subsequently had my heart broken (8th grade). And what is was like having to hide my true self from my family and closest friends (crazy-making and depressing).

And then my life as an adult. Had I ever been in an abusive relationship? Yes, seven years with a woman who sneered at me and put me down constantly. In my next relationship, my partner physically assaulted me - once. Bye, Felicia.

When she asked about sexual assault, my first reaction was “I’m a woman - duh!” The first time was when I was 14, and three male “friends” jumped me on a secluded beach. I managed to fight them off, but only because one of them really didn’t have his heart in it. And there was another incident when I was 24. (Remember the partner who sneered at me? Yeah; she thought I was “paranoid” for wanting the sliding-glass door closed and locked at night.) Again, I managed to fight him off. But it certainly took a toll on my psyche.

Her final question was about self-harm. Had I ever thought about - or attempted - suicide? Yes, I had thought about it; several times. But I’d never tried to do it. Having discussed this with my therapist, I was pretty clear that my bouts of “suicidal ideation” hadn’t come very close to the real thing. (Example: when I lived in Florida, I was very depressed and would fantasize about driving off a cliff. If you know that all of Florida is at sea level - and sometimes below it - well, it wasn’t a particularly realistic fantasy, was it?)

Why was Diane the Social Worker asking all these questions, when I was volunteering for a medical procedure? Because transplant professionals have learned that a significant percentage of people suffer depression after donating. Sometimes it’s mild and temporary, but occasionally it’s severe and long-lasting. It’s PTSD, folks, and a lot of us have it.

And guess what? I flunked.

I was devastated. Diane was kind; she was empathetic as she explained the things that concerned her. And she told me this was not the end of the road: if I was willing to return to therapy and do more work in one particular area, I could reapply in six months.

I called my therapist the next day.

Next up: If you thought this was “TMI”, just wait…

Part 6: A Professional Detour

At the time of my application to become a kidney donor, I had been seeing the same mental health therapist off and on for 16 years. We started working together when my physical issues, chiefly hearing loss and fibromyalgia, became so severe I had to stop working.

This was one of the lowest points of my adult life. I knew I had done my best to stay employed. I moved from working with preschoolers (my true vocation) to school-age children, because most of them didn’t require lifting (except the special needs kids), and I could hear them better. Then I became supervisor of a program for school-age children (5-10 years old). In a sense, this was a step up, career-wise. But it was also an accommodation to my physical limitations, both of which were getting progressively worse. As a supervisor, I had less direct contact with the children and more with their parents, as well as the teachers I hired and trained.

Surprisingly, I found that I enjoyed supervisory work very much, and I put together a program that included children with disabilities and those who were typically-developing. Our program was also bilingual in spoken English and American Sign Language (ASL). We had teachers who were Deaf and fluent in ASL; teachers who were hearing and not afraid to look silly learning to sign, and hearing teachers who were students of an Interpreter Training Program.

It was a very cool program.

But after a scant three years my hearing loss had worsened to the point that I was finding it difficult to converse with adults in that setting. Then an incident with one of our special-needs children sent me out on worker’s comp for the third time for the same injury: soft-tissue damage to my shoulders and elbows.

It was time to stop working with children and find less physical employment.

I found a position as administrative assistant in the same community service organization that had been funding the childcare center. My new duties included processing payroll and completing the paperwork with new hires.

Eventually I began leading training sessions for the people doing the work I had been doing: providing childcare for school-age children. That was extremely fulfilling work. I was working for an organization whose mission I believed in, and my supervisors - in addition to being lovely human beings - were very supportive of me. At one point, my hearing worsened to the degree that it became inappropriate for me to conduct new-hire interviews in the open-plan office. (It just wasn’t right to expect people to speak loudly while answering questions like, “Have you ever been arrested?”) I was given a private office - not something afforded most administrative assistants.

But there were only so many accommodations that could be made. The fibromyalgia kept getting worse, causing pain in my arms and legs. Migraine headaches became more frequent, and I was sleeping poorly as a result. Not surprisingly, my work suffered. I forgot things, lost paperwork, and missed deadlines, causing a lot of trouble and embarrassment for the executives whose work I was supposed to be supporting.

I hadn’t realized until it happened to me, but one doesn’t qualify for long-term disability by becoming disabled; one qualifies by becoming unemployable. You can’t go to the Social Security office and say, “My work has been slipping because of X, Y, and Z, and next year is going to be even worse. May I please have some help?” No, you have to screw up first, proving that you can no longer do the job you have, and that no one will hire you to do a different one.

Due to the kindness of my supervisors I was “allowed to resign”. I began the process of applying for Social Security Disability. And I crashed. And fell into a deep, dark hole of depression. Who was I if I couldn’t work? Where would I find a replacement for the community of lovely people I had just lost? And what good was I in the world if I had no way to do good in it?

It was one of the few times in my life that I seriously considered suicide.

Next Up: Deprived on Accounta Being Depraved

Part 7: An Ode to Psychotherapy

Dear Reader: When last we met I had been disqualified from kidney donation on mental health grounds. I had passed all of the physical tests, but there were concerns about repeated bouts of depression throughout my life, as well as occasional thoughts of suicide. And although my last such event was 15 years in the past (when I had to stop working), I was still considered “at-risk”, because some organ donors who have pre-existing PTSD experience depression after surgery.

I was in tears. I had been looking forward to donating a kidney - doubly so, once I learned that my not being a direct match with my intended recipient meant that my one kidney would help two people: the stranger who actually got mine, and my friend’s sister, who would also receive a kidney as soon as a match was found for her.

Now it would be back to square one for both of them.

The social worker was very kind. She let me cry, assured me it was not my fault and explained the reasons for her concern. And she gave me some hope: if i was willing to work on those issues with a therapist, I could reapply in six months.

So back to therapy I went.

I had started seeing a therapist 15 years prior, when i had to stop working due to disabilities - when i became not just unemployed, but unemployable. This was devastating for a person who started working at the age of five- folding pizza boxes at our family restaurant, at half a penny per box. I was so proud of myself!

I was already in a great deal of physical pain and suffering from chronic fatigue, adding to the isolation of increasing hearing loss and it all became exponentially difficult to bear. I’m a very social person; now I was home alone all day with nothing to focus on except what was wrong with my life.

The future did not look good—what did I have to live for if I was of no use to others? I knew from past experience that even the darkest times come to an end: I knew I had people who loved me, and I knew the pain I would cause them if I ended my life or “merely” attempted to do so. But the fact that the suicidal thoughts even occurred to me was not a good sign.

I’d seen therapists before. Sometimes we failed to “click”. But sometimes a connection was made, so I knew the right person could be helpful. Lori was the right person.

We ended up working together for the next six years. For the first couple of years we met every week; every other week for a few years after that, then once a month. Finally the day came and we agreed I was ready to ‘graduate’.

“I am healed!” I proclaimed as I left her office.

In the following decade I would return for “tune-ups" when I needed help sorting through something new, or revisiting something old from a new angle.

Here’s something I find interesting: about two years into our work together, I had a revelation: “Oh! I didn’t have a happy childhood!” I had always been conscious of aspects and events in my family life that were extremely painful. What I didn’t realize was that the degree of misery was outside the norm. I just thought everyone hurt like I did.

Anyway, short story even longer, I went back to Lori when I failed the 'kidney psych test’. We spent the next six months focusing on areas the social worker determined to be red flags. And I’m glad we did because I was able to clean up many lingering issues. For the first time in my life I was able to change self-destructive habits I’d never been able to control before.

The sense of relief - and pride - I got from that cannot be over-stated.

Five months later I contacted the social worker to let her know I’d soon be back. I filled out the forms that gave her and Lori permission to share information about my mental health. One month later I was re-interviewed for kidney donation - and I was back in the program!

Now all I had to do was repeat all the medical tests I’d done before, plus the ones I hadn’t gotten to. Whee!

Part 8: TMI - This Time for Sure…

In the course of telling this story, I’m sharing a lot of personal information - more, I know, than many people might feel comfortable sharing. I do it for two reasons.

First, because I hope this Tale of Two Kidneys will inspire others to consider organ donation. I figure the best way of doing that is by giving an accurate depiction of how much of the process is focused on the well-being of the potential donor (you). It would be a dry account - and much less useful - if I shared only the questions I was asked and not my answers to them.

The other reason? I can’t say it any better than the Indigo Girls did: “Whatever can happen to anyone else can happen to you or to me.” I’m not special. By sharing some of the events that have shaped my being and my life…well, maybe I can help others see that they’re not alone.

So here’s one more bit of insight I’ve reached during years of psychotherapy: the openness others sometimes find excessive is a product of having to hide my true self from family and friends. I spent my childhood wondering if the people who seemed to like me really did - or if they only liked who they thought I was. I came out of the closet the minute I left home at 17, and I’ve been unhiding ever since.

So if you’ve known me for a long time and wondered at my propensity toward “over-sharing”, now you know why. And if these pages are your first introduction, I hope my openness helps you feel less alone.

Next Up: Dang, I Test Well!

Part 9: I Get With the Program

Live-organ donation professionals like to say whether a prospective donor ends up donating or not, they will have had the most complete physical of their lives. And it’s true. There have actually been cases where the process revealed undiagnosed conditions and has even saved lives!

And now, back to my saga. Take two.

Because it had been six months since the urine and blood tests, those had to be repeated. I also had to have another mammogram - but I didn’t have to revisit the proctologist, which was a…relief.

Things moved quickly after that. I was flown to UCSF* for several, more complex tests. There was the stress test - the one where they stick a bunch of electrodes on you and make you run on a treadmill until you fall down. (Not really: just until your heart reaches a certain rate for 60 seconds.) Then there was an MRI and electrocardiogram.

I went back home to await the results. the MRI showed I had a “lobulated liver” that needed further investigation. I was able to have another MRI near home, and was reassured by the finding that it was well in the “normal range”.

I had aced all the tests and I hardly studied at all!

Within two weeks, I was informed that they had found a match for my kidney - someone who not only had the same blood type, but who also shared several genetic markers required for a successful donation.

I was asked again if I was sure I wanted to go through with this, and reminded that I could ‘back out’ at any point in the process. If I did so, the recipient would simply be told that there was a problem with the match - not that I had changed my mind. No shame, no blame.

Three weeks later I was back in SF for the surgery.

*Because UCSF operates through the National Kidney Foundation, I paid none of the costs of travel. The airfare was covered, as were my nights in a hotel and a $50 per diem. And everything was arranged by UCSF: all I had to do was tell them which airport near my home I preferred.

Next Up: Take My Kidney, Please

Part 10: In Which I Am Treated Like Unto Royalty

Three weeks after a match was found, I was back in SF. I stayed one night in a hotel where I had a nice, fancy dinner with an elegant night of bowel prep. Mick picked me up the next morning and brought me to the hospital. (You remember Mick; she’s the friend whose sister needed the kidney.)

We spend an hour together in the waiting room, then were whisked upstairs where the medical magic would happen. Mick was allowed to stay with me until I was brought into the operating room.

But first, I got to change into one of those lovely hospital gowns and was visited by a succession of people: the surgery nurse, the surgeon, the butcher, the baker, the candlestick maker - and Elvis. They all asked to look at my abdomen. After the second visitor, I made it simple by lifting my gown the moment anyone new walked in. (Wouldn’t you know it? The next person was the anesthesiologist, who had no interest in my belly at all.)

The surgical process was explained, I was asked if I had any allergies (lactose; and nasal steroids prescribed for a migraine once tipped me into uncontrollable sobbing). And once more for luck: had anyone coerced me or offered me money for my kidney? I controlled myself, and did not ask the surgeon, “How much are you offering?”

And I was given one more chance to change my mind.

I declined the offer.

So, Mick and I waved goodbye and they rolled me into surgery, where the anesthesiologist did what they do. The next thing I knew I was waking up in recovery. This was a special section for organ donors with one nurse for every two patients. I ended up staying there for 12 hours because my blood pressure was low enough that they wanted to keep a close eye on me. I suggested they yell “Fire!” or “Free doughnuts!” but no one seemed to trust my medical expertise. Sheesh.

My blood pressure did finally cooperate and I graduated to “the kidney floor”. The nurse-to-patient ratio was higher than in recovery, but for the two nights and days I was there, someone responded lickety-split every time I hit that call button.

It’s the practice these days to get patients on their feet within 24 hours of surgery, and mine was no exception. With the aid of painkillers, a walker, and a nurse, I began taking short strolls up and down the hall. Gradually, I worked up to making a full circuit of the kidney ward, all on my own.

When I was leaving the hospital, they gave me a t-shirt. It had on it the UCSF logo, a picture of two kidneys, and the slogan: I walked the long mile! I said that if they’d told me there was a free t-shirt in it for me, I’d have donated years ago!

I was required to stay in the vicinity for two weeks after being released from the hospital. If I had needed a hotel, they would have paid for it - but I had Mick, who took me home to her place.

I also left the hospital with detailed instructions and “what ifs”, a prescription for painkillers, one for stool softeners, and a plastic gizmo to do breathing exercises into as a counter-balance to the tendency to avoid deep breaths after that kind of surgery. Best of all was a slightly elastic length of fabric with a Velcro closure. Wrapped around my abdomen, it provided support to that area, making it easier to be upright and walking.

I had four small incisions. Two, I believe, were for the robotic instruments; a third for the snippers; and the fourth for the little cup to catch the kidney. They didn’t cause me a lot of pain - but the muscle spasms that started in my back a few days later certainly did. They were excruciating. I’m told they were caused by the gas introduced during surgery to inflate my abdomen and help the surgeon visualize my organs. That gas dissipates slowly - but before it does, it can make the back muscles complain about being pushed out of place. I learned later that things like Gas-X can help. Wish I’d known that then! I got through it by repeating my mantra, “But my recipient is off dialysis and home for Thanksgiving!”

After two weeks of loving care by Mick, I met with a nurse at UCSF. She checked me over and told me what to expect from my body in the coming months. She then outlined the follow-up care I’d be receiving for the rest of my life. In six months I’d need to have my urine tested to make sure my remaining kidney was functioning well. That would be repeated annually - and paid for by the National Kidney Foundation.

Also, during routine physicals and when being prescribed a new medication, I would need to remind my doctor that I have only one kidney.

I flew back home - first class, because I requested it. I knew my fibromyalgia would be acting up (it already was), and it would help if I had room to recline my seat. So I had that experience for once in my life!

For some people, getting back to full strength can take 8 months or more. I was lucky: after 6 weeks I was able to spend one day a week with my youngest grandchild, who was just over one year old. And I was totally up to speed after 12 weeks.

Next Up: Reader, Can You Spare a Bean?

Part 11: Was It Worth It?

You bet it was! The human body functions just fine with just one kidney. A common concern is the what if: what if something happens to my remaining kidney? The Kidney Foundation has that covered! Regular testing to be sure my kidney is functioning well is paid for, for the rest of my life. And if I ever need one I go to the top of the list; the minute a donor is found, I’m in.

The entire process cost me nothing, financially. I was extremely well-cared for; I have the peace of mind knowing my innards are healthy (no sneaky conditions lurking about); and - back to the beginning - Mick’s sister will get a kidney when she needs one. Not after years of being on dialysis, wondering if she’s going to live long enough to move up the waiting list.

And that waiting list is long, folks. Over 50% of people on dialysis die in the first year. Those who don’t can spend 10 or more years undergoing treatment three times a week. And the longer a person stays on dialysis before they receive a transplant, the worse their recovery will be.

On average, 13 people die every day from kidney disease because no match is found. That’s sad - and unnecessary - it’s one of the few parts of our bodies we can give to help someone in need while we’re still alive and with minimal risk to ourselves. There just aren’t enough people donating. We can change that - hence this tome.

The benefits of donating are many: there’s the in-depth medical testing; the care and respect for emotional and mental health; and the lifelong after-care. Everything is paid for. And - get this - I was also able to designate two people who would receive preferential treatment if they ever need a kidney. This was a great incentive since one of my siblings was born with just one kidney - and has already been diagnosed with second-stage kidney disease.

And did I mention? Someone who had been on dialysis for who-knows-how-long; someone who was staring death in the face, and whose family was already grieving; got to go home for Thanksgiving!

If my Tale has piqued your interest - and how could it not - you can contact the National Kidney Foundation for information on donating. You won’t be pressured. You will be appreciated, respected and well-informed. You can go as far as you are comfortable and end the process at any time.

So, Dear Reader, if you are willing and able to donate a kidney, I encourage you to do so. Spare a bean - save a life. Maybe two. Not too shabby, eh?

From the Soapbox,

Sandy