Monday, December 30, 2013

So Tell Me How This Works Again...

Back when the prospect of being a living kidney donor began to look like more of a certainty than a distant possibility, I decided that I should inform my boss.  I felt that it was only fair that he be aware so that he could prepare for my eventual absence from work and the likely work restrictions when I returned.  In the days that followed, word spread around my job fairly quickly.  I have been asked many questions, most well-meaning and innocent, by my co-workers.  I have tried to be as candid as possible, while also letting them know that this is a process that takes some time.  I haven't really gone into great detail with them (I'm not one who gets a kick out of telling my co-workers that I had to pee in a bottle and keep it in my fridge or a cooler overnight).  One of the most bizarre questions (in my mind) was if I get paid for donating.  I was honestly floored, as I thought it was common knowledge that only shady characters with ties to the mob paid people for their organs.  Once I got myself together and picked my jaw up off the floor, I *cautiously* responded that no, I do not get paid to do this, and asked what prompted the question.  *Side Note: the person that asked this question was quite young, and not at all knowledgeable in "grown-up" stuff.  This person said that because people get paid to "donate" plasma, it made sense to them that one would get paid to donate a kidney.  I had to let her down gently, explaining that it is in fact against the law to accept payment for an organ.  
*Side Note #2: I put donation in quotes when referring to plasma because I don't see getting paid or compensated in anyway for donating a life-saving organ, blood or blood-product, or tissue as donating it.  My personal views regarding that issue are if you accept money for it, you're selling it.  Feel free to disagree.
 www.donatingplasma.org has information on how, where, and why one would need blood plasma. 

I spoke with my donor coordinator this afternoon.  All my labwork (remember the pee?) came back with great results.  I did my 2 hour glucose test the day after Christmas, and as I expected I felt like garbage for the rest of the day and the day after that too.  Spiking my blood sugar out of the atmosphere and letting it crash back to earth is never a good time, despite what they say.  We also solidified my appointment for "Donor Day".  To refresh your memory, it's the day-long appointment at the hospital that the transplant is to take place, during which I meet with my part of the transplant team and finish up my pre-donation testing.  I'll likely have to pee in more cups, bleed into more tubes, have electrodes stuck to my body, and be turned into Radioactive Girl.  I was assured that not one donor has left the hospital glowing, so I should leave with no super powers as well (bummer!!!).  Well friends, this may very well be my last post for 2013Be safe, have fun, and have a very Happy New Year!  May 2014 be good to us all!!!

Friday, December 27, 2013

Whew!

So peeing in the bottle 2 days before Christmas proved to be a waste of time.  I took my hard-earned specimen to the lab on the 24th and they told me, unapologetically i might add, that I would have to do it over because the pee has to be submitted the same day as they take my blood.  OH REALLY?!?!  Maybe someone at the lab could have clued me in when I picked up the bottle?  You know, when I mentioned to the only sane human being behind the counter that I was dropping off the awesome orange bottle on the 24th and returning on the 26th to do my bloodwork?  Didn't think that information was important enough to share with me that it should have taken precedence over discussing your holiday plans?  No???  Okie dokie.  Ironically enough the noon news on Christmas Eve, the day the lab told me that I had to put my pickles at risk again, featured a story about how the increase in deaths during the Christmas/ New Year holiday.  Apparently studies have been done on this phenomenon, and one of the major contributing factors of these deaths is HEALTHCARE WORKERS LOSING FOCUS BECAUSE OF THE COMING HOLIDAYS.  That's right, they weren't focused on the more important stuff, like making sure that their patients had what they needed so that they wouldn't die during the holiday season.  GAH!!!  

Anywhooo. 24 hour urine #2 is done, no hors d' ouvers were harmed in the process (got a cooler and bag of ice to keep the pee-pee fresh.  Oh Thank Heaven for 7-Eleven).  2 hour glucose tolerance test and a kazillion other blood tests, done.  A couple layers of skin were lost to the tape from the lab (don't worry, it'll grow back!).  Appointment for Donor Day is made for January 9th.  Donor Day is a lovely, relaxing day spent at the Transplant Clinic, complete with visits to myriad practioners, some tests, and perhaps giving away some more blood and a healthy dose of radiation.  These vague details are courtesy of my Living Donor Coordinator.

For the next couple of weeks, there probably won't be much to update.  I will surely stop by just to check in, and I may even get some lab results in in the meantime, but I don't expect anything spectacular.  Until then, Cheers!


Bean 
 

 

Monday, December 23, 2013

Just go ahead and pee in this bottle...

Remember that 24 hour urine test I mentioned in my introduction?  Yeah, I started it this morning, bright and early at 7:43.  I have administered plenty of these tests and assisted in collection for many patients, but never imagined I would have to do it myself.  I remember thinking once upon a time that it is slightly nerve-wracking because you have to make sure every. single. drop of urine goes into a giant orange bottle.  Spill some, you start over.  Patient forgets and dumps the urinal or hat into the toilet, you start over.  If other icky stuff gets into the sample, well you call the lab, let them know and hope you don't have to start over.  Easier to do that in the hospital than at home, know what I mean?  I never realized that I would be buggered by the weird pressure that comes along with gathering roughly a gallon of pee so that someone could run a bunch of tests to make sure that my kidneys are up to snuff.

My first impression of this test was this: this is going to SUCK!  This was brought on by the instructions included by the test.  They read as follows: Caution- do not urinate directly into collection bottle.  (This is physically impossible.  I am a female, and therefore lack the necessary equipment to do so.)  It is best to begin this test first thing in the morning, and complete it the following morning.  (Duh!  How much sense does it make to begin something like this after lunch?)  To begin test, empty your bladder completely upon waking (in the toilet, I assume.  I stopped wetting the bed decades ago, but to each their own.), and note the time.  This marks the beginning of the test.  For the next 24 hours, collect every single drop of urine into the bottle.  You must empty your bladder within 10 minutes of the scheduled end of the test.  If you urinate an hour or more before the scheduled end of the test, drink a 20 ounce glass of water and hold your urine until the scheduled end of the test, then urinate to complete the test.  Note the time, place collection bottle in specimen bag, seal, and deliver to the designated lab.  *Please note that the specimen should remain refrigerated throughout the duration of the test.* 

Refrigerated?  REFRIGERATED?!?!  I have to keep a giant bucket of pee in my fridge!  That's right folks; as I type, I have a jug of urine in my fridge, right next to the pickles.  Don't worry, I have taken appropriate biohazard precautions (the pickles are wearing hazmat suits, duh!).  And may I add, that not one person in this house has mistaken it for apple juice. 

I never thought that I would obsess over whether or not I pee enough.  There are measurement lines on the cute little bowl sitting in bowl toilet, the pee catcher if you will.  There are also measurement lines on the big orange jug.  For those that are curious, it's a little more than half full, and I still have 9 hours left.  Earlier this afternoon, I had a funny thought: what do I do if I fill this thing before I go to bed?  Do I sacrifice one of my Tupperwear containers?  Do I free the pickles from their hazmat suits, eat them, and use the jar for storage?  WHAT DO I DO???  I think I may fall short of the 3000 milliliter mark, so it's a less pressing issue than it seemed to be mere hours ago.  Phew!

I think that it goes without saying that doing this test with a very curious toddler who has just learned that he is tall enough to open doors is quite the PITA.  He already wants to be in my face when all I want to do is pee in peace.  Today he sees me "playing in the toilet", which is a big no-no, and thinks it's okay now.  *facepalm*  All I can say on this front is thank goodness they don't want a stool sample (at least I don't think they do).   

Well, now that I have sufficiently grossed you all out, I suppose this is as good a time as any to wish everyone a very Merry Christmas!  The offending orange jug will go to the lab bright and early tomorrow and I will be able to get some baking done without worrying about using my fridge as specimen storage (don't worry, I'm going to clean it out before any goodies go in there!).  Cheers!

*PS- feel free to share this blog with your friends and loved ones.  You never know who may benefit from someone else's experiences, even if it may be in a "6 Degrees of Separation" sort of way.

Sunday, December 22, 2013

An introduction

First off, welcome!  I have been contemplating for weeks on whether or not to chronicle my journey to live kidney donation through a blog.  I was torn on sharing something so personal with the rest of the world, even though I will be keeping my posts as anonymous as possible.  I really made my decision a couple of days ago to do so.  I have come to realize that while most of the attention through this process is focused on the intended recipient (as it should be.  They are the ones in dire need, after all!), the donors are making a HUGE sacrifice (which is recognized, in my case).  But I have also realized that I have yet to see any anecdotes written from either perspective.  I would like to change that, so that others can see the process unfold candidly.  As silly as it is, the urge to write this blog has become all-consuming.  Thank you for reading, and hopefully as this process unfolds, there will be something important to take away from it.  Now, on with the show!  :)


This journey started a few years back, when a close friend of my husband (we'll call him J) let us know that his kidney function was declining.  He has Polycystic Kidney Disease, a chronic condition that causes the kidneys to form huge cysts and kidney stones.  There is no cure, except for a transplant.  Those few years back, we all naively thought he still had a ton of time before a transplant was even in the horizon.  His condition could be managed with medication, somewhat.  They could treat the stones by blasting them; he had this done a couple of times, "the exact opposite of fun" is what I believe he said.  Because of the kidney disease, he has some secondary health issues, all manageable with medications.  The guy is a walking pharmacy!  I remember feeling horrible for him, as he is relatively young and on more meds than a 65 year old.  After a particularly nasty bout with either a cyst or stone (I don't remember which now), we were all talking about what his doctors were thinking as far as treatment.  The answer was the same: meds and acute treatment as needed, but a transplant was 3-5 years down the road. 

     *Now before I proceed, here is a link to The Polycystic Kidney Disease resource website:  www.pdkcure.org  There is tons of info on ADPDK, the form of kidney disease affecting J.  Back to our regularly scheduled programming.  

3-5 years down the road.... mmm, yes.  That's where I chimed in and said "J, you can have one of my kidneys!"  No, I did not know if we shared the same blood type.  No, I did not think that I was going to happen anytime soon (naive, much?), and NO, I did not think in a million years that he would ever accept a kidney from his best friend's (at the time) girlfriend.  He laughed and said "I still have a ton of time left before we have to think about that.  Yep, we'll see about that, buddy.

Fast forward roughly 3 years later:  here we are.  J's kidneys are failing.  They are basically kaput.  By all rights, he should be on dialysis, but his nephrologist (kidney doctor) assures him that since he is still producing urine it's not a necessity.  I'm still scratching my head on that one.  Anywhooooo, back to how we got here (and bear with me.  Details are a tad fuzzy now because we've moved so dang fast).  A week or two before Thanksgiving of this year, J has an appointment with his nephrologist.  His latest labs are looking terrible.  His kidneys are failing at an alarming rate (to me, anyway), and that he needs to make an appointment with the transplant clinic at the University Hospital.  However, the good doctor states that J still could potentially have months to a year before he needs a transplant.  *If I'm going to be candid, I should probably say that hearing this infuriates me.  I used to work in a medical profession, before my child was born.  I am very familiar with lab values, and I had been sporadically doing research to become knowledgeable in J's condition.  His lab values scared the sh!t out of me!  I was holding my breath to hear the dreaded "dialysis" word.  I almost passed out.  

Now to the really fun part.  Are you ready, 'cause here goes!  J calls the transplant clinic and explains his situation to the coordinator.  Gets an appointment for the week after Thanksgiving.  Transplant clinic mails out a packet the size of "War and Peace", which includes his appointment time, date, and a note saying that it is preferable for someone from his support system as well as "intended donors" (me) to be there.  This appointment started at 7:45 am and went until 2:30.  We met with the surgeon, cardiologist, nutritionist, social worker, transplant Nurse Practitioner, financial counselor, and had lab drawn (these people sure do like taking bodily fluids!).  They drew blood from me to confirm my blood type and to do what is called a cross-match:  they mix a sample of my blood with J's blood and make sure that J's blood doesn't produce antibodies and attack my cells.  This would be a very bad thing.  The antibodies his blood produces would attack my newly-transplanted kidney and cause rejection.  I spent my whole life growing this kidney!  I don't want to see it die before its time!!!  

     *Yes, I know that rejection is a real possibility.  I also now know it's a shade less likely because J's blood isn't going to go all "Rambo" on my bean.

In meeting with the surgeon, I learned a little about my portion of the surgical process:  I learned that my kidney will be removed through a *tiny* 5 centimeter incision near my belly button.  That's 2 inches, folks.  The average kidney is 4-5 inches long, 2-3 inches wide, and an inch thick, according to my research and first-hand experience in the cadaver lab.  I don't know how they make it work, and quite frankly I'm not sure that I do want to know.  I learned that I will be in the hospital 2-3 days to make sure that my remaining kidney, now left to do the job for 2, is appropriately compensating.  I assume this will mean peeing into funny shaped bowls and having my urine measured and tested, as well as more involuntary blood donation.  Then, after I'm discharged from the hospital, I get to hang out at home with my husband, rambunctious toddler, and whatever family and friends come a calling for two whole weeks.  Bum deal, huh?  But, prior to having holes cut into my body so I can help my friend live, I have to pee in a bottle to 24 continuous hours to make sure MY kidneys are doing their job correctly (pop quiz time!), have more blood drawn to check my glucose tolerance (I'm not diabetic, I swear) and check about a bajillion other things.  Then I get to spend another glorious day at the transplant clinic meeting with the transplant team, again.  Only this time, the focus is on my part in the process.  Yay! 

Ladies and gentlemen, if you've made it this far, I thank you.  I hope that you'll continue reading and will be making another installment very soon.  Good Night!