Kidney donation

 Kidney donation looks so easy on TV. The long lost or estranged sibling shows up in the last seven minutes of the medical drama and it's off to the operating room.

Kidney donation sounds so easy in urban legend. Just book a holiday at a low-budget  Central American resort, go to the bar that night, and wake up the next morning in a bathtub full of ice cubes and blood.

When my wife was diagnosed with polycystic kidney disease a couple of decades ago, I thought that donation required a very high degree of genetic compatibility. Researchers she was working with said that it wasn't that difficult. Blood type matters, and mumble mumble something didn't quite catch that, but we were years away from having to know. Overall, it seemed like anyone with two kidneys and generally good health should just scoop one out and toss it to someone who needs it.

On the advice of her nephrologist, my wife started looking for a live donor several years ago, when her GFR dropped into the mid teens. Another nephrologist I had consulted after I discovered I had kidney stones by passing one during a long, wild night at home had said that he didn't think I should donate to my wife. Because the situation at the time wasn't acute yet, I did not follow up to ask him what he meant. He retired a couple of years after that, so his notes and memory of my case had been overwritten by other priorities in his life by the time I followed up.

My wife and I have the same blood type, O+. That blood type is a universal donor: anyone can receive our blood. But we can only receive blood or transplants from someone who is also type O. As a starting point, my general appearance of good health and blood type match demanded that I investigate further.

The kidney folks had made the surgery sound pretty low key, at least as far as surrendering a vital organ goes. The preferred method is laparoscopic: the surgical team makes small incisions to insert viewing equipment and the extraction tools themselves, and just slurp that bad daddio right out of ya. In certain circumstances they might have to make an old-fashioned large incision, but most of the time they get away with minimal cutting. That was my general impression.

Recovery calls for a few days in the hospital, a couple of weeks of very limited activity, and then six more weeks or so of increased but still restricted activity, including a weight limit on lifting. This could seriously impact my job, especially now in the age of e-bikes. I put in a block and tackle to hoist them into the work stand, but some of them still need a few good shoves and some extra support to clamp them securely. And the two week initial period includes no driving or travel.

My wife is registered at Penn, the center nearest to where she works during the school year. Our permanent residence is in New Hampshire, where my job is. If I went down to slip her the ol' organ, I would be there for the entire two-week initial recovery. If there were any complications, I would be away from work for even longer. Then on my return to work I would not be at full strength for at least another six weeks. When it's all theoretical, being somewhat breezily described by an expert who knows that it's not imminent and has probably given the talk hundreds of times, it sounds very manageable. When it actually looms, with everyone two decades older (more or less), with a regime in power that threatens even the flimsy social safety nets that our country already put up with before they started swinging a wrecking ball, the prospect seems more precarious.

The transplant folks continue to be encouraging, but as you become more of an actual prospect for them they have to start getting seriously detailed about what you would actually be doing. The basic outline holds, but now you need to consider every ramification: financial, social, mental, emotional, as well as physical. You might have trouble getting health insurance in our system driven by corporate profits. You might have long-shot complications from any point after anaesthesia is administered, all the way down to years later. You get preferred placement on the transplant list should your remaining kidney fail, but the donor pool is far from adequate as it is. Cloning research proceeds way too slowly.

Of course my wife is screwed without a donation, whether live or deceased. Live donation has the best outcomes. If not a transplant, the alternatives are dialysis or death. So my risks as a donor are still far less than the risks to her, even if the transplant is successful. Survival rates are above 90 percent on average for one year, dropping to high 80s to low 90s at the five-year mark. Some recipients have lasted more than 50 years. One recipient told her that the return of vitality was stunning after she got her transplant. It seemed well worth it to see if I could help her feel that way.

So then the real process began. I had to formally register. Then I got the first set of lab tests, just basic blood and urinalysis. Clearing those gates, I had a couple of phone interviews. There is a National Kidney Registry, but no national screening of individual donors. Recipients and donors must register with individual centers. I could have done a remote donation through Brigham and Women's Hospital in Boston, but that would have meant that the organ would have to travel swiftly to Philadelphia, and that I would not be right there with my intended recipient. I would have had to go through the lengthy screening process at Brigham, and be tied to them for every aspect of the procedure. Being "across the hall" in Philly seemed like a better plan.

I made arrangements for a full day of screening appointments at Penn. This included collecting my urine for 24 hours prior to the first appointment in the morning, as well as fasting for blood draws. The blood work included a glucose tolerance test because of some family history of relatives with diabetes, so I had to fast for two more hours. That left a small window in which I could have grabbed a quick breakfast and coffee before fasting for two hours prior to a CT scan. Instead, other appointments in the middle of the day closed out that opportunity. By the time I got to radiology in the late afternoon I was about ready to have mystic visions.

In addition to the medical screening, I met with a financial counselor and a social worker about those social and financial factors. I also had to get blood drawn for infectious disease analysis because I had lived in south Texas as a small child and might still be harboring one fungal infection and one parasite known to lie dormant for decades, but that might hop over in the kidney to the immune-suppressed recipient. It's a deep, deep dive into your entire life and as much of the lives of your forebears as you can dig up.

The results started popping up on my patient portal by the next day. They mostly indicated that I am in good health, but the CT scan disclosed that I have cooked up another little stone in the left kidney. The one I passed about seven years ago was 3mm. The pain ramped up from back spasms around 5 p.m. to side pain, abdominal pain, wave upon wave stronger and stronger to a crescendo that made me think I might puke, shit, and pass out all at once. That was the transit through the ureter to the bladder. After that, the urethra was almost casual. I managed to catch the stone -- if indeed there was only one -- in the bottom of the toilet. I hadn't been thinking about collecting it, only getting it the fck out of my body, but then I realized that it might have diagnostic and scientific value. I fished it out and put it in a little plastic vial.

The 2mm stone discovered by the CT scan was described as "non obstructive." Even so, I don't want the little bastard growing big and strong before it eventually decides that it wants to go see the world. I'd been drinking water like it was a second job for all the years since I'd passed the first stone, because my nephrologist friend had told me that stone formation goes down 85 percent if you can pass 1.8 liters of water a day, and down to ZERO if you can pass 2.5 liters a day. Sign me up! But sometimes it's not possible to drink -- and pee -- as much as you have to. Road trips, public events, or sweaty bike rides on hot days all cut into that target volume. I guess accreting a 2mm stone over seven or eight years isn't too bad. But now I'm back to really watching my sodium and oxalate intake.

That little 2mm piece of crap also figured in the transplant board's decision to decline me as a donor. I got that word yesterday. There were other factors, including my isolated lifestyle up here. Also some other family history elements that don't present an immediate threat, but too much of one for them to advise a guy nearly 70 years old to yank out a kidney.

An altruistic donor with the wrong blood type had already offered a kidney to my wife as I began the screening process. I just believe that I couldn't ask anyone to do something that I wasn't willing to do myself, and if my O+ kidney turned out to be the bestest match ever, then it was hers for the asking. So now the other donor can pursue the paired or voucher donation option, and my wife might just get a few more years feeling more like her old self. She's still working, because that's where health insurance comes from in our capitalist hellscape, and because she really does like her work (even when her job pisses her off).

The Rat Maze of American Health Care

In January 2017, I passed a kidney stone. I self-diagnosed, and got through the long night of pain with only profanity, lots of water, and a little bit of beer -- taken medicinally for its diuretic qualities -- to get me ready for work the next day.

After several months, I thought it might be a good idea to inform what passes for my primary care physician that I had suffered this misfortune. I used to go to an actual doctor, but he took advantage of his superior financial decisions to leave the practice and go adventuring. He was a bright guy who laughed at my jokes, but he was also really good at keeping the clinical wall between us. The practice has not provided a consistent replacement practitioner since his departure. The nominal MD at the head of it has never seen me as a patient.  The people I have seen have been delightful, but the place seems to be the last stop before imminent retirement for all of them. Or, if it's a young PA or someone like that, it's just a stepping stone on the way to greater things. There's no continuity and little sense of any more than formulaic care for the person rather than the customer.

As an uninsured American -- or even as one with the typical overpriced, under-insuring policy -- I was reluctant to get into the investigation at all, because of the bureaucratic rat maze and unclear pricing of health care services. Because there is no uniform standard for charges and service quality, people travel a long distance to find either providers "in their network" or self-pay prices that they can afford for diagnostic services that their insurance company's accountants have deemed unnecessary to cover.

Does every community disparage its local hospital? Certainly the one around here has garnered its share of scathing reviews from former patients and the surviving family members of patients who didn't make it. Whatever the truth of the matter may be, local gossip describes it as a place to pay too much for too little when you have no other choice.

Because health care is a marketed commodity in this country, health care providers use advertising to communicate, rather than presenting information fully, completely, and readily accessibly. Hospitals are selling themselves. They want you to be happy with the result so that you will patronize them again and tell your friends that it was good, but if you're not happy they'd prefer that you shut up and stay out of sight, same as any other business would. A good business tries to learn from its dissatisfied customers, but dissatisfied customers do not feature as the lead element in any of their advertising.

By a stroke of pure chance, a customer at the bike shop where I work is a nephrologist in the Harvard Medical School system. He had offered many times to help any of us with medical issues. Indeed, as one of the leading researchers studying polycystic kidney disease, he had been very helpful and comforting to my wife and members of her family after they discovered that several of them had that genetic disease. So, when I had a kidney issue, I eventually turned to him. Because he had no commercial motive, and his credentials as a scientist are impeccable, I trusted his judgment.

Unfortunately, his ability to conduct examinations and treatment is limited by his contractual obligations to the hospital in Boston where he works. He can provide his time and knowledge, but no lab work or medical imaging. I have had to scrounge those up for myself, with as much guidance from him as he can provide.

The process of navigating the health care labyrinth is awkward enough without adding any confusion. I already felt unwelcome because of my inconvenient income level and the fact that I don't sport the brand logo of an insurance company. The health care industry in this country is geared toward extracting as much money as possible from reluctant third-party payers. They seem very accommodating to self-payers. But because the majority of participants in the system operate within the framework of the adversarial game between insurance companies and medical facilities, things are very compartmentalized. The seeker of services has to open every door and look in every room with few allies who don't have their own financial stake in the game.

When I go to the local hospital for a service requested by a Boston doctor, what will the local providers think...if anything? Will it occur to them that this is an outgrowth of the intimidating facade of commercialized medicine? Or will they just be resentful that I seem to consider myself "too good" for them? Conversely, will they automatically pigeonhole me as a charity case, uninsured because I am destitute, or a cheapass who simply refuses to fork over the coin for a real insurance policy?

When I was a kid, it was simple. If I got sick, my parents took me to the doctor. If I needed more than what the office could provide, it was arranged. Granted, my parents had the backing of the United States government through CHAMPUS. And I was a kid. Complexities were hidden from me. But health care on the whole seemed a lot more systematic, geared toward healing rather than cash flow.

As I read the history of CHAMPUS, and its transition to the current Tricare system, between the lines I infer that a growing population of people who don't die of their injuries and ailments puts increasing financial strain on any system of medical care. That would be true no matter who is paying, so it does not in the least justify our current American system based on profiting from fear and ill health. But it does explain how accounting departments looking to shift costs would entertain increasingly complex mechanisms to divert expenses onto someone -- anyone -- else. This burst forth in the 1980s and has mostly gotten worse as our country does anything it can to avoid settling down to create one coordinated system based entirely on patient outcomes rather than its own income.

Discouraged by the prospect that any pursuit of health services could metaphorically lead me down an alley where my pockets would be emptied, I have been very slow to follow up on my situation. Having an illness is bad enough. Feeling like an illness turns you into some corporation's cash crop makes it all the worse. I feel like a beggar, and a blind beggar at that. I dropped the ball last autumn after the first round of lab work ordered by my nephrologist friend because I still felt awkward taking him up on his offer, no matter how often he had repeated it. When he confirmed it this summer in person, I felt like I'd  let him down by taking so long to go further. But I still have to make the contract for services and pay whatever the bill turns out to be when the dice finish rolling and stare up at me.

In the end, looking for cost-contained, competent medical advice and treatment, I'm not sure if I merely made it much more complicated as I try to manage the interface between my doctor friend and the other service providers in the process. And my situation isn't the stereotypical nightmare of phone tag with higher and higher levels of corporate supervisors that a lot of really sick people have to go through. Imagine having a really serious illness and having to go through a process clearly designed to weed you out.

A genuine system of universal care is decades overdue in this country.