Kidney Donation Wrap-Up

***WARNING: Pictures of body parts ahead***

Well, I lived! And more importantly, my kidney is now living elsewhere, and reportedly working its little heart out! (Wait...was that a mixed metaphor??)

I'm guessing if anyone is considering donating as well, they would like to have a slightly more detailed description of the actual process, so I'll try to recap what I remember along the way. Beginning with...

Wednesday

After a HUGE meal at a local Brazilian restaurant (need to build up that iron!) and a very short night in a very cheap hotel, we arrived at UNM around 4:30 AM as directed. Yep, that's pretty darn early, but we needed to make sure my kidney got on the right flight on time! Into the paper gown (some hilarity involved - why was there only one sleeve?), much lying around and chatting with so many medical personnel I lost count. I am afraid I completely forgot everyone's names, but I do know all anesthesiologists at UNM are at least 6 feet tall. And everyone was approximately 16. Also all super nice! They put a patch behind my ear, as promised, to help with impending nausea. I do NOT do well with anesthesia, which we knew, and which will come up again later. Someone from the surgery team used what appears to be a Robert Munsch Super Indelible Never Come Off Until You're Dead and Maybe Even Later marker to make sure they knew which side the kidney was supposed to come from.

Seriously, this is after several showers and some rubbing alcohol. Mr. Happy is here to stay.

  

About 6:00, someone pushed some fluid into my IV, saying "I'm going to give you a little something now to make you feel silly." 

Then it was 1PM and I was in recovery.

I WAS ROBBED! I mean, no, I certainly didn't want to be awake during the surgery, but what happened to the "Count backwards from ten" bit?? I've watched TV, I know that's supposed to happen! I was all set to be a smart-a** and do it in Russian, too. I practiced. Hmph.

Well, as predicted, I immediately felt nauseous and started to throw up. FYI, vomiting after abdominal surgery is Not Much Fun. Fortunately, they were ready with more meds in the IV, and kept them up over the next 24 hours to keep things under control.

Mike had a LONG wait, first during the surgery and then the entire time I was in recovery. At that point he was only allowed in for twenty minutes out of every two hours! At least he got the latest Stephanie Plum read, and caught up with a mutual friend whose baby was in the hospital (doing well, I hear). They didn't get me to a room until about 3PM, around which time he headed home (4-5 hours) just in time to get kids to bed and then up for school the next day.

That night I was on IV fluids, with liquid Tylenol (I can't swallow pills) every so often to keep ahead of the pain. I really didn't have much pain - unless I tried to sneeze, cough, clear my throat, or yawn. Clearing my throat happened every time I tried to talk, my throat seemed to produce an unnecessary amount of phlegm in reaction to the intubation. It was also a bit sore in the back for a couple days, but only noticeable when I ate. I am used to sleeping on my side, which wasn't happening now, but even those fun pressure things they put on your legs to stave off blood clots couldn't keep me awake for long. 

Thursday

I had kept Jello down in recovery, so I got a real breakfast - bacon and eggs, oatmeal, juice, coffee. Not much appetite and still pretty groggy, but I ate the first two. LOTS of ice water over the next couple days. I read one book (Melanie Cellier's latest, of course!), but mostly slept - in between "Hi I need to take your blood pressure" and "Oh it's time for your meds". UNM is a teaching hospital, so there were several residents included on the rounds. I know I have said this a dozen times, but EVERYONE THERE IS SO NICE! Seriously, absolutely no complaints about any of my care. Except the broccoli - why did they keep serving broccoli to someone who is already passing enough gas to power a truck?? (TMI? Sorry - one way they make room to maneuver in your belly is by puffing it full of gas. It all needs to leave at some point.)

I was way more lethargic than I expected to be, based on my 3 C-sections, but I had of course received way more anesthesia this time around. No more nausea (God bless Zofran), but thick-headed and sleepy. I had to cut off one nurse who was asking about the donation, because I was too groggy to think - he was very nice about it, but I still felt bad, and didn't get a chance to chat with him later. I did learn that one of my night nurses, Cody, used to be a children's librarian, although I never got around to asking where. I could totally see him leading Toddler STEAM.

Mila came in to tell me my kidney arrived safely, was transplanted successfully, and already working! The recipient has been waiting SEVEN YEARS for a kidney her body wouldn't reject. Mila even sent me a picture of my kidney, taken before it left:

First thought: That's a lot of fat that went with it. Bonus! But why isn't my tummy any flatter? Bummer.

Second thought: Wait. Is this now someone else's medical information? I mean, if it was still MY kidney at this point, I can post a picture of it, but now it's someone else's kidney. Do I need their permission? But I don't know who they are...I'm going to say it was still my kidney, as it was geographically closer to me.

I was removed from most wires and tubes by the evening, so I could get up and move around a bit. Just like with other surgeries, walking is encouraged. Still very very lethargic, with not much appetite, but dozing was getting harder as it was getting harder to find a comfortable position.

Friday

Some concern about my bladder emptying properly, but things were moving along, so they decided I could go home. Hooray! Mike left home in the wee hours and arrived before lunch. I got a shower - hooray again! - and put my own clothes on. Staff made sure my prescriptions for Tylenol and stool softener were filled before we left, so we didn't have to mess with that here. They also gave me Zofran again just before we left, in case of motion sickness. Discharge happened much faster than I expected, and I didn't realize until we were on the road that I hadn't seen Ana Maria and Mila again as planned. I wasn't about to turn around again once I had made my escape! As nice as everyone was, I wanted to be HOME! We did talk to them on the phone en route.

Another LONG drive for poor Mike, with me trying to sleep in the passenger seat - and I thought the hospital bed was uncomfortable! Apologies to anyone I scared at the Carrizozo gas station as I stumbled through to the bathroom. When we got home I went straight to bed, but stayed awake to see the kids and my mother, once she brought them home from her house. I took the nausea patch off, took some Tylenol, and went to sleep.

Saturday and Sunday

I didn't need the Tylenol any more - no pain, just soreness - and never needed the stool softener. But. I maybe should have left the patch on.

So. Sick. At this point, I should point out that what I was feeling wasn't necessarily what anyone else would feel, but part of my usual extreme reaction to the anesthesia. I was miserable. I never threw up, but I felt very close to it much of the time, and had no appetite - which was bad, because I needed to stay hydrated! The kids were VERY good the whole time, Christopher being especially helpful, but they were sad I wasn't interacting with them much - Sheridan kept saying sadly, "You HAVE to be better for Christmas!"

A few people stopped by with meals, which is just awesome, but I couldn't make it downstairs to say hello. Sunday night some friends had a party I had really been looking forward to, but I sent Mike and the kids on instead. Even in a silent house, I couldn't sleep. I had already slept so much my body didn't need that any more! Gah! At least I could lie on my sides again, and it was my own bed, and nobody was coming at me with a blood pressure cuff. Our sixty pound puppy practically tiptoed onto the bed at one point, snuffling at me sadly and then gently stretching out next to me.

Monday (Christmas Eve)

As soon as we were both awake, I told Mike we needed to call UNM about the nausea. I did NOT want to spend Christmas (or any day) at the local hospital on an IV. The on call urologist got back to us pretty quickly, and called in a prescription for Zofran.

Irony - as Mike drove down to get it, I felt the fog lift! Not so groggy, not so nauseous, and I was actually out of bed and downstairs when he got home. Hallelujah! Everything had finally passed out of my system - and I knew there were a lot of people praying, as well. I never ended up taking the Zofran, but I am very thankful they were so quick to provide it.

I had mostly prepped for Christmas before I left, so I visited with kids and answered a few messages, dozed on the sofa a couple times, and ATE and DRANK. My stomach was still a bit sensitive, and seemed to have shrunk a bit, but yay for hydration. 

My older daughter Mari arrived that evening, after driving all day long. I haven't seen her since September, so we had a lot of catching up to do. Funny how much animated talking affects your stomach muscles and breathing! By the time we had helped Santa do his thing (Mike and Mari carried, I shoved and directed), I was absolutely beat. Shane was allowed to sleep in our bed for the first time since I got home, since Mari now had his room. He didn't wake up, but stuck tightly to my side, reaching out every now and then in his sleep to pat me and make sure I was still there.

Tuesday (Christmas)

Perfect! I was still getting my appetite and energy back, but I was able to fully participate in Christmas. The kids got WAY too much stuff, as usual, and family members came in and out. I was able to help make lunch and supper, and went to bed just a little earlier than usual. Whew! I'm obviously not jogging around the block, but I feel pretty good.

Itchy, though. I was expecting to have bandages to take care of, but happily each incision is closed with dissolving sutures covered in glue. That make showering much easier! I'm supposed to let the glue flake off, which it is starting to do, and that itches. A minor complaint, though. 

I have four incisions. This one at the side:

As you can see, it's about the size of my wedding ring. I have to look to find it, it's not even sore. Crazy!

The other two small ones are where tubes/instruments were inserted, to do the whole thing laparoscopically, then a slit by my belly button - about 2 1/2 inches - where Dr. Alba slid her hand in:

How do people do mirror selfies and not end up with them all blurry?

Not surprisingly, my belly button area is the most tender, but manageable. Probably a good thing I gave Mykela all my belly rings years ago, though. There was a little bruising the second day, but that is all gone already - the shadows you see around the holes are glue.

And that's it! I'm not allowed to lift anything over ten pounds for 4-6 weeks, and I'm encouraged to stay hydrated, but there is no special diet, no more meds. I go back in mid January for follow-ups, and expect to return to work the next day.

Ana Maria asked if I would do it again, and I absolutely would! The weekend was miserable, and my family had to help out a lot more than I had planned, but what is that compared to someone being on dialysis the rest of their life - or worse? If you have any thoughts of being a living donor and have questions, please feel free to ask!! And a huge, huge thank-you to Mike, Mom, Mykela, the kids, and all the friends who have helped out!

On Helping

So, one thing I have been torn about through this whole process. On the one hand, this is something I am doing because I want to do it, because it is help that is needed that I can provide: not because I want everyone to think I'm a wonderful human being. Part of me would like to do the whole thing fairly quietly and just not tell many people.

On the other hand, I want other people to do it, too. Over 120,000 people are on the UNOS waiting list, and the vast majority of them are waiting for kidneys. Over 100,000 people who will die if they don't get what most of us have an extra of! Just think, if 20,000 people - a tiny smidgen of the adult population of the US - decided to become non-directed donors, and each of those people started a chain with 5 people in it, that list could be wiped out! All those people would LIVE!

As of this morning, there were actually six people hoping for my one kidney. You see, my matched recipient is in another state, and my kidney will be flown to him/her (let's just say "her", it's easier). But, what if she got sick this morning and they can't do surgery on her? Or, what if the weather here cancels flights, and my kidney is stuck in NM? So there are two back-up recipients in MN, and two here in NM. That means that, while one person is going to be extremely happy by the end of the day, four will be disappointed. That is heartbreaking to me.

A few people have asked "What caused you to make this decision right now?" The thing is, I would have signed up ages ago if I had known about it. I just didn't know about it. So if I blog about it and talk about it, maybe there will be someone else who finds out - "Wait, I can save someone's life now, not after I'm gone?" Or someone who thought about it will see the process isn't that scary, and decide to go ahead with it.

I teach my kids, you should help when you can. Helping does not have to mean becoming a living donor. It can mean donating money, it can mean delivering a meal, helping someone move, watching someone's kids, speaking up when someone is being hateful, giving someone a break when they can't seem to catch one, taking a moment to notice someone (have I mentioned how much I love this book?) Little things count. They add up. That does NOT mean we can say, "Yeah, I put my shopping cart back where it went AND somebody else's, so I'm good for the week." There isn't a quota system.

It also doesn't mean selling everything you own and giving it to the guy on the street corner and living in a cardboard box yourself. I mean, would that even really help him? If that's where you feel the nudge to help, then go talk to him. Get to know him. Take him to lunch. Figure out what would really help him. Does he need a job? A shower? Does he need you to lobby for mental health services? Donate blankets to the local shelter? Start a local shelter? 

Maybe you can't do that. You can't do everything. You don't have to, and nobody expects you to. My favorite president said it pretty simply:

It means treating other people as fellow human beings who are in this with us, not as something beneath us or "other" than us because of some artificially drawn (and temporary - study your history, people) lines, or economic status, or beliefs or customs or life choices. It means doing unto others as you would have them do unto you. It means paying attention to the basic laws of humanity.

And guess what? Donating a kidney doesn't mean I am done helping people (or animals!) I don't get to sit back and smugly say, "I gave a BODY PART, people, I've done my share." Nope. There are still ways I can help people, so I still have the responsibility to do it. I mean, I might not be delivering meals for the next week or so, but - after that!

Does any of this make sense? I hope so. I'm typing it up before I go under the knife, so I can't blame the after-effects of anesthesia. 

It's the holiday season. Hanukkah ended a couple weeks ago, Solstice is in a couple days, and Christmas is just around the corner. Not a big fan of New Year Resolutions, but let's call it a goal. Make it a priority to look for ways you can help in 2019. While we are decimating that UNOS list, just think of all the other great changes we could make along the way!

Phase 2

So, I have made it past the "Can I donate a kidney?" phase, and now we are moving on to, "Who will I donate it to?" Not that I will know the person's name (unless they want it shared with me), but there are over 100,000 people on the waiting list - how do they decide which one gets mine?

The UNOS list has rankings based on several different factors such as:

- urgency
- location
- time the recipient has waited
- compatibility
- age (in the case of pediatric patients - they are more likely to receive from pediatric donors)

So obviously, the list is not a static thing, and changes according to the donated organ in question. A computer determines the list order, not a human.

From their web site: "Only medical and logistical factors are used in organ matching. Personal or social characteristics such as celebrity status, income or insurance coverage play no role in transplant priority."

My blood type, O positive, means it's a good candidate for just about anyone on the list (positive and negative Rh are not a factor with the kidney - new thing learned this month!). Blood type is not the only important match, though.

Tissue typing is done next. That sounds like they are taking a sliver of you from somewhere to examine, but it's just another blood test! While I was at UNM in October, blood was taken to find out which antigens  my blood has. There are six, and the more of those that match the recipient, the more successful the transplant is likely to be.

Once a good candidate is found on paper, a final test (called cross-matching) is done to make sure the antibodies in the recipient's blood aren't likely to take one look at this foreign object from my body, decide it is a dangerous intruder, and attack it. A small amount of the possible recipient's blood is mixed with a small amount of my blood, and we (well, the people with the microscopes) watch to see if they try to kill each other, or if they invite each other over for coffee.

Or something like that.

Of course, it wouldn't be very convenient for anyone for me to run up to Albuquerque every time they need a sample, so The National Kidney Registry sent me a cute little kit in a box. 

I had eight vials of blood drawn at a local lab (not the same one that said I was pregnant),

Hooray for easy veins!

and those vials were overnighted to their lab in California lab. They will be stored there, and used as needed until they have a match for sure.

Once that is settled, the next steps of the chain can be put in place, and more people will be getting the phone call they have been waiting for! Exciting!!

And here's a cool video I found when I was showing the kids what is going to happen!

Do You Want a Piece of Me???

Many people think librarians get to read a lot.  Hardly! Add in having five kids at home, and much of my reading time happens sitting in my car in slow drive-through lines.

I'm sure many people (read: Moms) are in the same position, not having nearly enough time to read, uninterrupted. Can you imagine having a few days to just lie in bed and read? Bliss! I'd give my left kidney for that!

Or my right. Whichever. Which is how I found myself, a little while back, spending two days with some very nice people at UNM Hospital in Albuquerque, New Mexico.

I have registered for things such as bone marrow donation over the year, but I have never been contacted. When I came across information about the National Kidney Registry, I went online and filled out the forms, thinking it would probably be the same.

I was pleasantly surprised when I soon got an e-mail asking if I would be willing to take some initial tests. They sent me a urine collection kit, I peed in a bucket for a day, I dropped it off at a nearby lab and they took some blood - took about ten minutes of my time.

About a week later, I got a call at work from a delightful woman named Ana Maria at UNM in Albuquerque. She asked if I would be willing to drive up some day for further testing. She was more than willing to work around my schedule, and since I am off every other Friday, it was easy to pick a date that worked for everyone. She and Mila, another woman I quickly became acquainted with, were wonderful about answering any questions I had, and even those I didn't. They helped arrange for lodging, and sent me a detailed schedule, complete with maps and names and directions, both by e-mail and by snail mail.

What struck me most about that first conversation was how surprised she seemed to be, to be talking with someone who was willing to be a living donor, and who wasn't a friend or relative of a kidney patient. That made me sad. Yes, it's a bit more than just donating blood, but you are talking about saving a life! Why don't more people at least take the first steps and look into it?!

Seriously, I have always tried to teach my kids to help people whenever they can. Heck, it's the second thing written on our stairs.

 Sometimes that means bringing someone a meal. Sometimes it can mean something bigger.

So, back to my visit. I ended up taking one day off work and went up Thursday, so that the psychiatrist wouldn't have to come in on his day off. Yes, they want to make sure you aren't completely crazy. I guess my brand of partially nuts was deemed acceptable (I did get him to actually use the term 'batshit crazy' by the end of our session, although he refused to say it described me.) Basically, he asked a little about my life, made sure I had thought things through, had decent coping skills and a support system, etc. He went over some of the physical and psychological risks, which everyone does at every single step of the way - they want you to be SURE, and well-informed. He told me several times to ask as many questions as I could think of, of anyone I talked to.

I got a child-free night in a hotel room, long enough to confirm that I have not missed a single thing on TV in the past ten years, write a few book reviews for Cybils, and get 10 months of photographs in order in an album.

Friday was the busy day. I had a fasting blood test at 7, so I gazed longingly at the free breakfast being enjoyed by balloon crews (Balloon Fiesta weekend in Albuquerque!) before leaving the hotel. I was first in line when the lab opened, which was good because they were short-staffed and almost immediately running behind. Two pokes I didn't feel, 14 vials of blood, and a fill-this-cup-please, then I finally got to go meet Mila and Ana Maria, the living donor advocates at UNM. They are just as sweet in person as they are on the phone! Another very nice woman was there hoping to donate to someone she knew, so we went through the initial class together, taught by Mila.

Again, they want to make sure you are VERY well informed, about benefits and risks. Mila provided UNM's stats, which are better than national averages, and either answered our questions or told us who to ask along the way. Throughout the rest of the day, people would randomly ask us what we had learned about the risks, down to percentages - they want to be SURE you are sure, and you are not going into anything blindly. (There is a .03% chance I could die on the table. Getting back on I-25 was riskier.)

We both went down to get our EKGs, which took approximately three minutes each - no exaggeration. Then we took turns with the dietician Christine and Ana Maria. The dietician seemed happy with everything but my two sodas a day habit. I promised to TRY to drink more water, and she had to be content with that. Ana Maria went over more of what to expect, again making sure I had plans and support in place during my recovery.

Next up was a chest x-ray - I may actually learn my way around UNM by the end of all this! - about ten minutes, you just have to take bra and jewelry off and stand in a couple different positions. From there I drove around the corner to a different buildings (about 5 minutes, counting stop light) for my CT Scan. That took a little longer, and was...interesting. Heads up: the contrast dye will make you think you peed your pants. You didn't. Probably. But the bed part was so soft and comfortable, I would have happily ridden back and forth for an hour, taking deep breaths and holding them for the disembodied voice (which also belonged to a very nice lady. Seriously, kudos to UNM for having such amazing, friendly staff all over!)

Back to the main hospital for a visit with the nephrologist, Dr. Argyropoulis. My spellcheck says his name is spelled wrong, but it also doesn't recognize 'nephrologist', so... Everyone told me I could "just call him Dr. Christos", because "nobody can say his name." Challenge accepted! I practiced it all day, and he says I said it right - he may have just been humoring me.

There I got the bad news that my blood sugar test from that morning had been a touch high. That meant I have to take a blood glucose test later this week, so I don't know anything for sure yet. My kidney function was good, though (95), as well as all the other results they had, so - fingers crossed!***

If all goes well, I will be starting what is called a chain donation. My kidney will be given to a waiting recipient who is determined to be the best match. I am told getting the call that you have a living donor match is like winning the lottery - any viable kidney would be great, but one from a living donor is so much better!

A friend or relative of that recipient, who wasn't a good match for them, instead donates their kidney to someone else on the list. That chain continues for as long as they can stretch it out, but the final kidney donation in the chain comes back to the originating hospital. So instead of saving one life, you can be a catalyst to saving many!

Some questions I got answered:

What kind of timeline are we looking at?
If the rest of my tests go well, it is sent to committee. They look over all the information and decide together if I am a good candidate. At that point, we can pick a date. Mila said there are two dates available in November and two in December. I am hoping for early December, as that works best with work/family/vacation schedules.

Surgery is done on a Wednesday, at UNM. They transport the kidneys (complete with GPS tracking), not the patients. Usually, the donor goes home on Friday.

In one week, you come back in for a follow-up visit, then they see you periodically over the next two years. You are out of work for 4-6 weeks, although the last donor they had was back at work after two.

Will I know anything about the recipient?

If the donor and the recipient both agree, information can be exchanged, otherwise no. (I will be giving my consent, but I understand if they don't want to.)

Can I still donate blood? I am scheduled to later in October.

Probably should skip it this time around, but I should be able to in the future.

And some stats I got through googling and through my visit:

- At any given time, there are over 100,000 people waiting for a kidney transplant. That's 100,000 people who will DIE if they don't get what most of us have an 'extra' of. Imagine you are standing on a boat holding two life jackets, and the guy on the boat next to you has none - and his boat is sinking. Are you really going to stand there and clutch your extra life jacket while he drowns?
- 20 of those people die every day.
- Almost as many people become too sick while they are waiting to qualify for a transplant.
- To donate you need to be 18 and healthy. I am not too old at all - in fact I am in the median age group!
- One kidney functions the same as two. You don't pee any more than you did before. You can still play sports, still get pregnant, etc. Not that I plan to do either of those two, but it may be of interest to other people!
- Kidneys from living donors last much longer than those from cadavers (deceased donors) - approximately twice as long. Many recipients go through the emotional and physical stress of one transplant, only to have to face another a decade later - at which point the transplant may be less likely to succeed.


More great reading:

https://www.allinahealth.org/health-conditions-and-treatments/health-library/patient-education/kidney-transplant/for-the-kidney-donor/tests-you-need-before-surgery/

https://www.mayoclinic.org/tests-procedures/living-donor-kidney-transplant/pyc-20384838

***Phew! After some questionable results from the local lab (which also said I was pregnant and completely messed up my name), I am cleared to go! My surgery is scheduled for December 19, which will give them plenty of time to get a chain organized. That coincides nicely with the start of Christmas break for the kids, which is also a break from programming at the library, so good timing all around!

I am going to be posting updates along the way, but please please know it is not for any sort of pat on the back. I am doing this because it is something I want to do. What I am hoping is that someone somewhere will become familiar with the process, and think maybe they want to do it too. Could that someone be you??