Down to the Wire
You guys. The past few weeks have been a whirlwind. A rollercoaster of emotions. A cluster f*ck.
I had some grandiose plans to write weekly — I have lots of post-its with notes to prove it — but as we all know, life does not always go as planned. A couple of weeks ago, some of my labs came back a little wonky, and suddenly May-Second-Is-The-Day turned into Well-Lets-Just-Run-A-Few-More-Tests. And the uncertainty was too much for me, and the fear and doubt that this wasn’t actually going to happen crept in. And I didn’t want to give that fear and doubt life by writing it down. So I waited until we knew for sure. And we didn’t know for sure until Saturday. (For the record: ALL SYSTEMS ARE GO!)
Anyway, the saga of uncertainty begins on April 20th, the day of my pre-op appointment. Compared to the testing process to become a donor, pre-op was sort of like a cake walk. To the labs I went at 7:30am. As usual, I rambled through the five or so minutes it takes them to get the EIGHTEEN VIALS out of their drawer of supplies, letting them know I suck at giving blood, last time it took over an hour and five pokes and I had to lay down. (Side note: I did some research and 18 vials, while awful for someone like me, is barely half of the pint they take from you when you donate blood. So while it only took two pokes this time and I am definitely getting better at blood draws, I am no pro. You go, blood donors! You go! One day I’ll donate my O blood. One day.)
Anyway, all things considered, the lab work went swimmingly and off I went to visit with the kidney donor coordinator, the independent donor advocate, the nurse practitioner and my surgeon. Everything looked good. All my ducks were in a row.
I was relieved and ready to spend my last few weeks before surgery tying up loose ends at work, relaxing, and preparing myself mentally and physically for surgery and recovery. To begin this farewell tour for my left kidney, I headed off to Chicago the day after pre-op for a quick visit. Two hours into my drive to Chicago, I get a call from the Clinic — my liver enzyme tests came back high. My kidney coordinator was going to speak with the team of doctors and figure out what to do. She’d get back to me in a few hours.
Immediately, I started sobbing. Like a big ol’ baby. I’m not sure I realized how important this surgery and process was for me. Not only because I am extremely close with the recipient, but also because of all the planning and testing and talking and preparing for it. It felt like it was a part of me. And then suddenly it all felt extremely uncertain, and that uncertainty was killing me.
Anyway, I got word that I should just avoid alcohol and Tylenol that weekend and come in Monday for more bloodwork. If my liver enzyme numbers were trending down, we should be good to go. If for some reason they weren’t, we would schedule an appointment with a liver specialist the following week just to make sure everything was alright. Keep in mind we are about 10 days out from surgery at this point.
So in I went on Monday, and more blood tests did I do. (It took two pokes this time for one baby vial. Because of course it did.) I compulsively checked for my results all day and was so relieved to get them late Monday afternoon and see that both values were trending down. One was in the normal range, and one was only 8 points out of normal range. I figured everything was fine and we could formalize the date and I could stop feeling so confused.
But then, the Clinic and their donor team is nothing if not thorough. And they weren’t quite happy with these new labs. So a liver specialist appointment was scheduled. For Thursday at 12:10. Which was two days away. And which had some rather important Work Stuff scheduled. So I rescheduled my work stuff for Wednesday. Wednesday comes and goes, and I get ANOTHER call saying “Whoops, we overbooked, can you come Friday?” which felt like a practical joke — a real zinger — because not only had I moved my schedule around to accommodate the Thursday appointment, but now I had to suffer through another night of uncertainty before I could solidify these surgery plans in my head. For a surgery date that was less than a week away. But what could I do?
So Friday I head to the liver specialist and I kid you not, he basically looked at me as if I had three heads. The values were so low, so barely elevated, that if I didn’t have the kidney donation coming up he would have just had me come back in a few months to make sure that my liver is still doing alright (which I will be doing in August). Because of the kidney donation, he ordered more labs and said so long as the numbers don’t get any higher, he has no issue approving me for surgery.
So back. To the labs. I went.
One vial later, a whole evening and morning of checking for my results, and 5 different calls to the lab, the doctor’s office, the immediate assistance line and finally what I believe was Dr. Carlos’s personal cell line, they let me know that my numbers were all back in the normal range and we were good to go.
Here I am. Trying to fit in all the stuff I should have been doing all along into 2 measly days, like:
- writing a blog post (in progress! woot woot!)
- cleaning my room
- preparing my hospital bag
- executing my day-before-surgery-Monday-Funday (in progress? kinda?)
- sushi feast with the family since Johnny will have to avoid sushi after surgery (DONE! Thanks Pac East)
- I guess that is mostly it
- This to do list isn’t as long as it seems in my head
In Conclusion of The Saga of Uncertainty: it sucked. But I survived. And in hindsight, the Clinic was just keeping my best interests in mind, but it felt like I was being strung along.
Before I spend this whole post complaining about what the past two weeks have been like, I wanted to complain about some OTHER stuff too.
I want to share a little bit about all the different tests I have already had to go through in order to get to this point.
If any of you were interested in becoming a donor, the process would look something like this:
- Fill out a pre-screening survey online about your lifestyle and health
- Waiting around a bunch
- Lab work for blood typing, tissue typing, and cross matching
- Waiting around a bunch more
- If you were a match, two full days of outpatient testing to confirm you are healthy enough
- If needed, follow up testing to investigate any questionable numbers
- A day of pre-op testing
- If you’re me, you do the follow up testing in the last possible moment, because your whole existence has become so good at procrastinating
- Surgery Time!
Let me go into a little bit of detail about my particular adventure in donor testing:
On a Tuesday in January, I headed into the lab to get some bloodwork done. This is the first time in far too many years that I am going to get my blood drawn. I am a sissy, I am a downright baby when it comes to getting lab work. The last time I did, I remember passing out with my invisalign braces in. When the nurse tried to hand me some juice to drink, I groggily handed her my retainers. (Nurses are angels.)
So anyway, I’m anxious. I was anxious for, like, three days just thinking about it.
But off I go because I’ll be damned if I am going to let lab work stop me from doing this for my brother.
It’s the afternoon and this really friendly phlebotomist gives me a poke. I’m immediately sweating and trying not to pass out. My mom is squirming in the chair next to me, honestly not making things any better. Phlebotomist Number 1 can’t seem to find a vein. “They are very wormy, they keep trying to run away from me.”
Oh how I wish phlebotomists would NOT give me details on how terrible my veins are when trying to get blood.
Phlebotomist Number 1 calls the lead Phlebotomist — this older, Russian lady who seems like she don’t take no shit from no veins — for assistance. While I am intimidated by the lady’s stature, I am confident that if anyone can pin down my squirmy veins, it’s her.
But she can’t.
They basically tell me to chug a bunch of water tonight and tomorrow and to try again.
In the meantime, Johnny is the in the hospital because he can’t stop puking. When you’re diabetic, not being able to keep any food (aka nutrients) down is not a great thing. When you’re a diabetic AND you have end stage kidney disease, it’s even worse.
So the next day, I head to visit Johnny and then head to the lab for Attempt Number Two. I had spent an embarrassing amount of time that day googling what I could do to make the blood work process better. Mostly it said to drink tons of water, find a good phlebotomist, and sometimes to use a warming pad to draw your veins out.
Conveniently, I had done the water thing, and the phlebotomist I had on day two used a heating pad and had no issues getting a vein. It was almost comical — it took her barely even 2 minutes to fill up all the vials. I could hardly believe it was over. She let me lay down for a few minutes since I had explained in detail what a baby I was. Then I asked the front desk lady for a sticker and went on my marry way.
A few weeks later we found out I was a match. There are certain antibodies that the first round of blood work tested for. There are six of these antibodies. You can be a match of only one of the six antibodies and be approved as a donor.
Johnny and I were a six out of six match. A perfect match! What more can you ask for?
Johnny and our immediate family had a sort of field day with this fact. My whole life I’ve been told I look just like Johnny, that we are super similar, that I’m Johnny with long hair. And occasionally it would grind my gears. Occasionally.
And then I find out we are basically biologically identical, so that was fun.
Next, my two days of outpatient tests were scheduled.
Day 1 starts with, you guessed it, MORE BLOOD WORK!
Long story short…it took five pokes. And over an hour. And it was awful.
But then it was over.
Day 1 also included: an EKG, office visits, a CT scan, and a decent amount of peeing in cups.
The EKG was generally unremarkable. That’s the test where they just put a bunch of stickers on you from head to toe and record your heartbeat in great detail.
Peeing in cups is nothing to write home about.
But my CT scan, let me tell you. That was an adventure.
You see, I had to fast for 12 hours before my blood work. I also had to fast for four hours before my CT scan. There was a little over an hour of a window between blood work and the start of my fast for my CT scan. And since my bloodwork took over an hour, I had about five minutes to sneak a snack in. I came prepared with some nutella energy balls, but could only eat one before I was getting my EKG.
So by the time that CT scan rolled around, I was starving. And tired. And cranky. And, generally speaking, pretty much over it.
For some CT scans, you need to either drink a big ol’ bottle of nasty solution, or have an IV that distributes the contrast solution that helps make the CT scan more legible.
I was TOLD that I was lucky that I didn’t have to drink the solution, but let me tell you, it did not feel that way.
I was trying really hard throughout the day to Be An Adult and Be Brave and Not Be A Baby during the tests, mostly the ones that involved veins. But I was pretty much at my wit’s end by the time Steve from CT tried to give me an IV. I’m sure he WASN’T doing this, but it sure felt like he was just closing his eyes and jabbing me with a needle. Three times. Before he finally called in his much friendlier colleague, whose hands were warmer and tinier and who got a vein on her first try. I asked for some water (Steve let me know they only had tap) and was ushered back to the waiting room.
A half hour later, with the IV in my wrist, I was ushered to the CT room. A very friendly technician got me set up and let me know the following:
- Because they had to put the IV in my wrist, I’d probably feel a burning sensation when they released the solution. This burning sensation would go away.
- Don’t be alarmed, but most people have a sensation of peeing themselves when the solution is released. It is going to fill some pretty large veins and arteries in my groin area. Everyone thinks they’re peeing. We promise you you’re not.
So I’m laying on this cold, metallic table, with my hands above my head, feeling like Jesus on the cross. I’m tired, cranky, hungry, feeling a little faint. But I’m trying to be brave. This is the last test of the day. She releases the solution and I’m thinking to myself This isn’t so bad..that didn’t even burn. Then she says “okay, here is the second round” and my wrist is on fire. Not five seconds later and I am 100% convinced I peed my pants. I remember what she said, and all logic is trying to tell me I’m wrong, but I am laying there in my cotton leggings thinking to myself This is the lowest of the low. I have reached rock bottom. I peed myself at 26 years old on this expensive hospital equipment.
Alas, I was never so thankful to be wrong in my life.
Then I left, and all was made good again by a steaming hot bowl of Superior Pho.
The following week, I had what is called a GFR test. This is a round of tests that specifically test kidney function.
It included blood tests (yay) coupled with urine samples that are taken at different times during the day.
First, I had to pee in a cup. Then they gave me a shot. Then I had to wait an hour, drink a bunch of water, and come back to give blood and then immediately capture my urine. All of it. Not just a sample. All my pee. Which was a lot because I love water.
Then I had to wait another half hour and give more blood and more urine.
Other tests on day 2 included peeing in a lot more cups and wondering why these folks couldn’t share the urine.
Combined with the pre-op testing, the two bonus pokes because my liver decided to take a day off, and my first failed attempt at giving blood, I think I had to get poked with a needle somewhere around 17 times.
It sure does sound like I’m complaining doesn’t it?
I probably am, a little bit. I also find the CT scan story pretty hysterical, and I think I am also a bit proud of myself for more-or-less conquering my fear of giving blood. It still sucks, but I think I’m inching ever closer to signing up for the Bloodmobile when it comes back to work.
Anyway. Here I am, on surgery eve.
Today I have a sort of treat-yourself day planned. Monday Funday. My left kidney’s Swan Song. I am headed to spin class at noon — my last for a long time. Afterwards I am meeting a few friends for lunch at Town Hall, which will be my last meal of solid foods before surgery. Next my mom and I are gonna get mani-pedis (my mani will be clear polish because the surgery staff likes to be able to see your nails during surgery).
It’s already been a weird and wonderful ride so far. The outpouring of love and support because of this journey has been unreal. Everyone is so sweet and supportive. A family friend sent along a Saint Marina medal, the patroness of Nephrology. I’m wearing an old pair of mala beads a pal gave me, too. I’m accepting all the positive vibes, prayers, and good thoughts that anyone out there wants me give me and my brother (and especially my mom. She’s the one that has to be conscious during all of this). Non-denomination good vibrations in any form welcome. If you can spare any of those good vibes tomorrow, please feel free to send them along.
Now it’s time to straighten up my room, and pack my hospital bag. It will include a stuffy we specifically bought for this occasion, at least one baby blanket (I TOLD you I’m a baby), my kindle (I’m always accepting book suggestions) and a coloring book Johnny and Kristen got me called “Cheer the F*ck Up”.
I’m so excited. I’m so anxious. I’m so happy. It’s been a long, long road. Especially these last few weeks of uncertainty. And it’s only just beginning. But it’s all happening!