Friday, June 21

I Donated A Kidney OR She Who Smelt It, Dealt... A Kidney

I donated a kidney to someone.  I don’t know whom. Everyone asks how the hell I decided to do such a risky thing for a stranger.  A few years ago, one of my friends who moved to the west coast had a friend back east looking for a kidney donor.  Without much hesitation, I volunteered to at least get checked to see whether I would be a match. It didn’t end up that I was contacted for consideration, but after that I got to thinking… I happened to hear this one mother’s request for someone to help save her dying son, but thousands of people need kidneys for their failing health.  There are thousands of other cries I just never encounter; if I was willing to donate for one stranger, why not another? Years passed and I continued to think about donating. Learn a lot about my body and kidneys, after the jump!

This project got rolling because of one of my annual goals for 2018, if you're curious how I light fires to actually take steps to do things and not just put them off or act with all talk.
I learned that there are more than 100,000 people in the United States on the waitlist to get a kidney transplant and about 3,000 more are added every month making the wait time for a kidney to be about 4 years.  Many people die or become ineligible (usually due to their continued failing health) for a transplant during that wait time. Only about 1% of the organs from deceased donors end up being usable for transplant. Of the organs which are transplanted, organs from living donors have a higher success and acceptance rate for the recipient and function better, longer for the recipient.  Organ transplant isn’t exactly routine surgery, but nephrectomy, removing a kidney, is a common surgery with minimal risk.  I read the research about long-term effects of donation; most long-term evaluations of donors have found that living donors live longer  than non-donors.  It’s hypothesized these people live longer because only the most healthy are allowed to donate and then they monitor their health and remain invested in their health more than non-donors.  Transplant centers are required to disclose data of death, hospital admissions, successful transplant rates to potential donors. It’s pretty good! Nationally, between 2012 and 2016, 10 people died within a year of donating; 1 suicide, 1 overdose, 7 homicides or accidents, 1 unknown, and 3 medically.  Of the 231 living donors at Brigham and Women’s between 2014 to 2018, only 1 was readmitted to a hospital during the year following donation. That’s pretty good! I don’t want to alarm you, but close to 2,000 people die from falling down stairs every year-- twice as many as Hepatitis. I live on the second floor of a building.  I work on the second floor of a building. The risk of donation is low. Within a year after donation most people have their remaining kidney grow and go from 50% kidney function after donation up to about 70%. The National Kidney Registry is even piloting a program which allows one to designate immediate family members who will be given priority for transplant, if needed, because I have already donated my extra.
Life after kidney donation doesn’t have to change much.  Limited alcohol intake, really not more than one drink per 24 hours.  No protein shakes. No high contact sports. Drink a lot of water. Can’t lift more than 15lbs for 12 weeks after surgery.  Those things are whatever. Small price to pay to bring life to someone else, very minimal impact to my life. What gave me the most pause was that one can never take NSAIDs ever again.  No Advil or Motrin (ibuprofen), Aleve (naproxen), Aspirin. No miracle drugs for aches, pains, and headaches. It’s only Tylenol (acetaminophen). NSAIDs reduce inflammation and Tylenol does not, so aches and pains from things like athletic strain are treated with NSAIDs because it reduces inflammation and swelling, but only managed with Tylenol.  The transplant nurse told me to buy some Tylenol now and see if it works for me-- it doesn’t relieve pain for a lot of people.  Tylenol works for me! Headaches went away and I found that aches and pains returned, but the ache would go away with medication. I decided to jump through the hoops to see whether I could donate.

    I got to collect my pee in a big orange jug for a full 24 hours.  I spoke with the transplant nurse at our local transplant center, Brigham and Women’s Hospital in Boston, MA.  My weight was too high; donors need to have their body mass index under a certain number because increased weight comes with increased risk of diseases which could impact kidney function, such as diabetes.  I lost 15 pounds and contacted the center again. I got collect my pee in a big orange jug for another 24 hours! I got to have my blood drawn! I got to give a urine sample! My pee passed muster. I got to collect my pee in a big orange jug for another 24 hours!  I got to have my blood drawn (and the dude SUCKED at it and bruised me to hell)! The lab lost my pee and missed that I had to give a urine sample (0/10 Clear Choice MD). I got to collect my pee in a big orange jug for another 24 hours! I got to have my blood drawn!  I got to give a urine sample! I got to give a medical history and my family medical history to the transplant nurse. My pee didn’t quite pass muster. My creatinine levels were just under the acceptable level.  Creatinine is essentially the poop of your muscle cells and it gets filtered from your body by your kidneys.  It’s important that your kidneys are doing a good job filtering this cell poop from your body or you can get sick because you get too much cell poop in the systems of your body, which as you might imagine, can make one sick.  I got to collect my pee in a big orange jug for another 24 hours! By the way, these jugs have to be refrigerated and so I casually had to just keep my pee in the fridge and bless my boyfriend for being pretty chill with it. I got to have my blood drawn!  I got to give a urine sample! My pee passed muster, by a solid margin. My creatinine levels were about what the first sample had been and the dip seemed to just be a fluke.
    Here’s a thing I never expected.  Over these four times I had to collect my pee for 24 hours in a big orange jug, I was self-conscious about the amount of pee I had.  I wondered whether it was too much or too little or just the right amount. Would the lab tech take my jug and privately think, “Jeez, that’s a pretty underachieving pee-er, that woman should really be drinking more water!” or “Oh my god, what the hell is wrong with this woman that she’s peeing the volume of a lake in a single day?!”  These are just not life experiences one expects to have. Nor is worrying that the boyfriend you recently moved in with would end the relationship because you have to keep putting a plastic pan, often called a pilgrim hat, over the toilet and keep a jug of your pee next to the eggs in the fridge.
All this costs money. The way that non-directed donation works, to the best of my understanding, is that the bills I incurred were paid for by the transplant fund at the hospital. I was not responsible for any of the work testing whether I was able to donate, the surgery, the follow up, etc. Then, once the recipient was found and received the kidney, the recipient's health insurance then pays back the transplant fund for my expenses. Ultimately, it's the recipient and their health insurance which is responsible for the bills for services rendered to me. With the exception of the the same Clear Choice MD who lost my pee, everything went well and any bills I got, I just forwarded on to an account manager at Brigham and Women's. Clear Choice MD continues to generate bills from 6 months ago which has already been paid. After it was paid, they generated a bill through their lab, Quest, and after 2 months passed, they sent the account to collections. That was a pain in the ass. Again, fuck you Clear Choice MD and thank you to the fabulous account manager at the hospital who is still dealing with them.

 After all this I went down to Brigham and Women’s for a complete health check.  I had more tubes of my blood drawn that I ever have before. I gave a urine sample.  I had a CT scan of my abdomen. I had a chest x-ray, an EKG, I met with a social worker for a psycho/social evaluation, and met with a donor advocate.  The donor advocate is a person, in my case it was a doctor, who is completely separate from everything at the hospital to do with you and a donation or a recipient.  They have the job of standing up for your best interest with absolutely no bias. I met with a nephrologist for the most thorough health history I’ve ever given. I met with one of the transplant surgeons who explained the procedure and recovery.  I walked a lot of Brigham and Women’s hospital… very many departments.  I’ve been fortunate that since being an adult I’ve been generally healthy and I haven’t had extensive tests or procedures and I found this all fun because it wasn’t in the midst of diagnosis and disease.  As a result of the CT scan, I now have pictures of my kidneys and the measurements and what my renal system looked like. How many people can say that!?

    The transplant committee, which is a group of doctors, professionals, and administrators with a range of specialties and knowledge, met to decide whether I was appropriate to accept an organ from based on all the data points they had on me.  I was with my best friends in Freeport, Maine waiting for the call on a yes or no. I was so excited to get an answer and celebrate or mourn with my friends. I got the call from the transplant nurse. They didn’t decide. There was a further question about one of my blood draws with low blood platelets, it was so low that it was likely a flub somewhere.  However, due to a health history on the maternal side of my family, the transplant committee had another question. I was able to immediately answer the question and then had another week of waiting for the transplant committee to meet again and decide. The waiting was hard. This had been a process going on for nearly six months. I wanted an answer and I was going to be sad if I was deemed not appropriate to give a donation, I wanted to give my life blood!
    In the end, getting the official word was not very climactic.  I was in the self-checkout at Wal-Mart and didn’t want to miss the call so I was frantically trying to finish ringing out my items, hear over the sounds, and hold my phone up to my head adequately so I could keep a conversation.  I guess I could have jumped and shouted in the Wal-Mart self-checkout, but I wasn’t comfortable doing that and so I just used my best excited but restrained therapist voice to say how excited I was. The nurse then e-mailed me some dates for the surgery-- apparently they were juggling some staff and were flexible but some dates were better than others.  I picked a date which was better than others, I did not want someone there who was subbing or was supposed to be in Tampa with their kids and blah blah, mild paranoia, blah blah.  I had to do a blood draw which got sent via a snazzy modern medical insulated pouch through UPS and was delivered to the National Kidney Registry where they would take my information and blood and find someone on the waitlist who would hopefully be the most successful recipient of my kidney.  I did one more meeting with the transplant nurse at Brigham and Women’s and an appointment with a surgeon to consent to the procedure. I had to do one more blood draw the week before because the donor hospital wanted to do their own tissue typing to ensure a good match.
    Because of the way my renal system looked, one kidney wasn’t better than another.  Typically, after looking at the chest x-ray and the CT images, the surgeons determine which kidney to take based on your blood vessels, location of the kidneys, your anatomy, your kidney size and function.  When someone gives up a kidney, the weaker one is taken because no one wants to see a donor come back in because their remaining kidney is failing. My kidneys were equal and equally accessible for surgery. When that happens, they just always take the left unless the donor has some strong opinion of one over another.  I didn’t, they would take the left.
April 4th.  It was all set.  But was still not in stone.  I could get sick, the recipient could get sick.  Someone else in the chain could get sick. Donor chains are wicked cool.  Here’s how they work: Let’s say that I need a kidney and my Mom is willing to donate to me, but her and I are not a compatible match for me to accept her kidney.  Then let’s say that Veronica is willing to donate a kidney to anyone and Veronica and I are a match! Veronica’s kidney would get transplanted to me and my mom would still donate her kidney, essentially on my behalf.  My Mom’s kidney might go to Joey who is a match to my Mom. Joey might have his sister donate on his behalf because she wasn’t a match to Joey…  These chains can get set up with planning and sometimes are only one other pair and sometimes more than a dozen. So for April 4th, we all had to be well.  I may have wigged out on a co-worker who came in and sat next to me on April 1st after she wasn’t feeling well and her husband and son had the influenza over the weekend.
I know it’s major surgery and stuff, but I really wasn’t worried.  I have always been of the belief that one could drop dead or be struck down from life at any moment (remember people who die falling down the stairs?), so the fact that death is a possible risk of surgery struck me as about as alarming as how death is a risk of staying alive any given day.  Plus, I knew that I had been given an extreme bill of health and many people had decided that it was overwhelmingly safe for me to donate an organ. I had one stress dream about how they were trying to get my kidney to someone in Wisconsin and it just wasn’t working out and my kidney went to waste.  I was more worried about someone dropping my kidney on the floor or sneezing on it than other complications. My Mom’s worry increased with time, I think.

Most of my friends had known about my plan to donate a kidney for a long time. They threw my kidney a going away party.  I hadn’t told my parents until I was officially cleared to donate because I didn’t want to bother with telling them unless it was going to be a real thing.  When I finally told them, my Dad gasped and asked, “Why? Just because it’s a nice thing to do?”
“Yeah,” I said.
My mom then told me how a relative had kidney cancer (not a blood relative! I didn’t withhold this information from my medical team!) and that a family member who had recently had a lung transplant was in some kind of weird coma.  And then she asked when the date of surgery was. It ended up being lackluster and frankly I expected more from them.
I had planned to go to the hospital alone on the 4th because I had to be there at 5.30am and no one needed to be with me, I wouldn’t be needing company until like, five hours later, so I was just going to take the T to the hospital in the morning by myself.  My mom then said that she would go down with me. Then a couple days before, she said that she booked us a place to stay the night before. Then while we were there the night before she was unusually stoic and frank, I think hiding some of her concern. It did relieve some of my friends to know that my Mom was going with me because generally people seemed to think it was ludicrous to go to surgery alone.  Again, people, it’s not like I was going to be hanging out with anyone other than the anesthesiologist and all my emergency contact information and healthcare proxy information was on file at the hospital. But my Mom went with me.
Arriving at the hospital for surgery did not change the fact that I hate mornings and everyone can suck it.  I did my check in with the staff, got another blood draw (one of the things I wish I knew is exactly how much of my blood was taken during this six month process) and then filled out the last of the consent paperwork.  Then I was whisked away to the prep area. I got my lovely hospital gown (bless the nurse who told me to pee first so that I wouldn’t have to walk around with my ass hanging out) and the nurse took my vitals. The surgeon dropped by and signed my stomach on the left side, the side with the kidney they would be taking.  The anesthesiologist stopped by and gave me an IV which she struggled with and I think she thought she was really hurting me, but it was fine. I bagged up all my stuff to be transported with me and to my room afterwards, kind of like checking your luggage at the airport. One of the surgical nurses stopped by to make sure everything was good.  I lost track of all the people I had seen and spoken to, everyone on the team checked in.

Then, the surgical magic happened.  I was brought into the operating room where it seemed like there were about eight staff waiting for me.  I was able to set up my phone so that I could listen to music while I went out. I listened to Ladies and Gentlemen We Are Floating In Space by Spiritualized and a mask went over my face.  I breathed deeply and whoever the hell was talking to me was very sweet and kind in just coaching my breath and telling me I was doing a good job.  And then I woke up.
Once I was in the recovery room I don’t remember a ton.  I had the IV in my hand placed before surgery and I had another one placed in my wrist on the other hand.  My Mom was there, she had let people know I was fine and once she saw that I was doing fine, she headed home to beat some garbage Boston traffic.  I stayed in the recovery area for a long time. My boyfriend came to visit and I remember seeing him walking down the hall towards my sheeted cubicle and I threw my arms up in the air and yelled, “My boo!!!”  They kept me in the recovery room for a longer time than I really needed to be there because they were waiting for a private room to open up-- they try to give that perk to donors, when it’s possible. My boyfriend got to stay with me in the hospital that night.


Recovery was mostly fine.  I didn’t have stitches on the outside, just surgiseal, which is basically packing tape for your wounds.  The surgery is done laparoscopically, using robot arms in your body which are controlled by a surgeon using a screen on the outside of your body.  I only had three 1 inch holes in my abdomen, on the left side, where they stuck the robot arms in-- pretty damn amazing. So the thing with donating a kidney though, is that they have to then actually cut a hole in your body big enough to get the kidney out of…  So on the underside of where my belly hangs, they made a big ol’ slice. They do it there and not way up where your kidney is because it’s less rough than cutting through your abdominal wall. The only thing which really sucked was getting back into bed. Initially I had a catheter which freaked me out, but was actually fantastic because I didn’t have to get out of bed and was totally painless.  After they took out the catheter, it was garbage to get back into bed after getting up to pee.  I never got the knack of it. The nurses even tried to help me get my legs back lifted and I just kept smashing back into the bed like frolicking humpback whale.  And it hurt. Maybe a 6 on a 0-10 pain scale. That was the most pain I had. I had to pee in a pilgrim hat on the toilet and tell the staff so they could measure it and record the color of the urine.  

The food was good.  It was, in essence, room service-- came with a cloche and everything.  I watched a lot of TV I don’t remember. I had these massive bruises from the heparin shots I got in my thighs to thin my blood and help prevent a post-surgical blood clot.  The nurses and personal care attendants were wonderful and helpful and kind, only one lady fucked up a blood draw. I had these boots on my lower legs, for circulation, which would inflate with air to apply pressure and then deflate which was soothing at an intimate and primal level.  One of the nurses gave me a folded and then taped together blanket to hold tight against my side so that it wouldn’t hurt to cough. One of the personal care attendants helped me “take a bird bath” with washcloths and she was instrumental in scrubbing the adhesive left on my body from the ECG sticky pads (used in surgery to monitor the heart).
The IV in my wrist was annoying and not connected to anything.  I asked a nurse if it could be removed and she took it right out.  The IV in my hand stayed in and they used it to pump me full of fluids, which was annoying because I had to constantly get out of bed and do my painful whale flop.  For the first two days in the hospital the IV was also how pain medication was administered. I had a Patient Controlled Analgesic button which allows one to push the button for pain medication to be dispensed up to a capped amount.  After the IV was disconnected, I was given pain medication with pills and it wasn’t quite as effective, still, no pain over a 4.
I couldn’t leave the hospital until I started farting.  Seriously. All the staff kept asking whether I was passing gas yet and I kept disappointing them with my answer.  As part of the surgery, air fills the abdomen, you know, because usually it’s a pretty sealed system in there, and then the body reabsorbs that air and it gets passed as toots.  The pain medication creates constipation and so I was taking laxatives every night. I had no toots. I did my best to get up and walk around and do some laps around my little area of the hospital, which was supposed to help.  No farting. About every six hours one staff or another would ask whether I was farting. Finally, Sunday morning when I woke up, I went pee and farted for sooooo long. When I went out on the floor to walk around, the nurse asked whether I had started farting.  She was thrilled.
“Oh my gosh, yay!  Finally! Congratulations!” She gave me a high-five and the personal care attendant asked what was happening, “Stephanie started farting!”
“Nice job!” The personal care attendant also gave me a high-five.
My boyfriend remarked that no one responds that positively when he has flatulence for the first time in a while.
I was in the hospital for three days and then when I went home I balled up my clothes to cushion my wounds from the seat belt pressure.  I had to have someone with me at all times for the first week. That was just as well because I also couldn’t drive or pick up more than five pounds that week and had to have my friend pour milk in my oatmeal for me.  The pain was really fine. I didn’t need much pain medication. The pain medication did make me extremely constipated, even taking the laxatives daily. After speaking with the transplant nurse, I was started on a second kind of laxative and was then taking one in the morning and one at night. The most uncomfortable day I had was six days after surgery and the friend who was with me tolerated my bemoaning and grumpy pants… I hadn’t pooped in six days. Blessed be, on day six, there was finally feces.
Many people bring up being fatigued after the surgery and during their recovery.  I haven’t experienced much of that. I had a follow up appointment one week after the surgery and the wound tape was removed from the small incisions and they were all but totally healed.  My next 5 weeks away from work were great. We got a puppy and she wore me out, but generally I felt great and there were no problems. Once I started to pick at what I thought was a tenacious bit of scab but turned out to be a piece of an internal stitch and pulling on it was not a joyful experience.  Really the only reason I had to be out of work was because I couldn’t sit nor be active for any length of time (which was great with a puppy around) and my work doesn’t allow for that. The only things I have felt unable to do are things requiring lifting. I have been able to run in small amounts, even with the large incision jiggling around under my gut.
I’ve been fortunate to have 0 problems.  But an odd thing is that is hurt to hold my pee.  Because the bladder is disconnected from the ureter (the tube between the kidney and the bladder), when the bladder expands and bulges it puts pressure and pulls on the wound.  We were in the car a week after the surgery and I had to pee so bad I was lying down in the passenger seat and moaning until we finally reached a town where I could pee. I would have peed on the side of the road if I had known that peeing would immediately remedy the problem.
While I was in the hospital, I found out that my kidney successfully made it down to Walter Reed Medical Center and was successfully transplanted in the recipient and was successfully doing it’s job in its new home.  Donating to no one in particular is called non-directed donation. Non-directed donation is a bit like open adoption; each person has to agree to know one another. I said that I don’t mind being contacted. The transplant nurse told me that many times, recipients don’t reach out to their donors because they simply do not know what to say or how to communicate it.  More often than being contacted by the direct recipient, someone further down the chain will reach out. Some people reach out after six months and some people reach out after six years. I don’t care whether or not I’m contacted. I don’t need that acknowledgement.
Being acknowledged and thanked and told that I’ve done this wonderful and kind big thing actually makes me really uncomfortable.  Many donors have a period of crying while they process the gift they’ve given. I haven’t had that. This has just made sense to me.  I had an extra kidney, I could live fine without it, thousands of people are dying because they don’t have what I have in double. I’m not very good at charity.  I don’t like it. I hate volunteering, I don’t like donating to things. I give money. Giving a kidney feels to me like giving money. I could do that. So I did that. 
9/10, would donate again... If I had another spare. I have been telling people that given the choice between 24 hour food poisoning or donating an extra kidney, I would donate the extra kidney. Never, not once, in this process did I ever silently wish, oh, god, please just let me die or please just kill me now!
You can start reading about living donation of a kidney here from the National Kidney Foundation. If you can, you should do it, it's great.