Wow...

Six months.  It has been six months since the transplant.  Time sure has flown by!  We are both doing fantastic.  My fatigue has subsided for the most part; now it just comes on after really busy days, but that it more of a typical fatigue that come with the demands of being the mom of a very active toddler and a physically demanding job.  I will be scheduling my checkup tomorrow at the transplant clinic.  This is merely a formality; I have my weight checked, labs drawn, and have a short chat with my surgeon.  J had a few hiccups with his white blood cell count being to low, but it is finally within normal limits.  All his other numbers look good too, which means Lefty is doing his job!  No episodes of rejection either.  I'm so glad things are working like I'd hoped they would!  Well, off to work.  I'll update with my follow-up results!  Thanks you all for sharing in my journey!   

Hello, adoring fans!

Just thought I'd write a super quick update since I'm staring at the computer while my Garmin updates anyway.  We made the two month mark today!  Two months post-donation/transplant!  Wow!!!  It seems like such a long time ago, but at the same time, almost like it was yesterday.  We're both still making progress in our respective recoveries; he is back to work, on his full time schedule, and I have been for about a month.  He has made some kick-ass progress with his kidney function (YAY LEFTY!!!), and has even been able to have some of his anti-rejection meds decreased.  Lefty is making himself right at home in his new abdomen.  I still get tired from in the afternoons, some days are worse than others (read: crippling fatigue that makes me want to cry).  I find that it usually happens on Mondays after working a full weekend.  I power through, mostly because two-year olds have no concept of "Mommy is beyond tired and you refused to take a nap, so sit still for a half hour while she lays down".  That just ends up with the house looking like a tornado raced through it and took out everything but that one wall that aforementioned two-year old used as his canvas to test out his awesome new crayons and his bowl of fishy crackers.  This fatigue has caused me to become a caffeine junkie again.  It balances out though; I also drink a lot more water than I used to, mostly because I pee a lot more frequently (except at work.  I always forget to pee at work).  

Well friends, the Garmin is finished updating, so off to bed I finally go.  Happy a happy and safe 4th of July weekend, and I'll be back soon!

Time sure does fly!

Sorry for the long pause;  I've been busy holding my remaining guts in...

So it's been a month and two days since the transplant.  Things have healed up nicely for the most part, with the exception of feeling like my abdominal muscles try to shatter into a million pieces every time I sneeze.  Seriously, watching me sneeze is something so hilarious that my two year old has taken to mocking me.  He will randomly stop what he's doing, fold himself in half, and "sneeze".  He will also offer me his Super Mario pillow after I sneeze once, because I've used it a a buffer/guts catcher should my innards decide once and for all to become my outards.  It's a hassle, but I will overcome.

I've returned to work.  Apparently I was missed.  A LOT.  I missed *some* of my coworkers.  A LOT.  Some of those I missed have moved on, which sucks, but it's understandable.  I still miss them.  It was nice to be back at work nonetheless.  I was starting to get stir crazy! 

I still battle mid-day fatigue, and it's unlike anything I've ever experienced.  It's almost like my body wants to shut down at 1pm.  Not exactly something I can have happen with a toddler running around the house.  Some days, it happens in the late afternoon too, but by bedtime I'm like "let's partaaaaay!"  then I get into bed and pass out within ten minutes.  It makes no damn sense.  It's amazing how people's bodies react to surgery; I lost a crap ton of hair, my appetite still hasn't rebounded, and if I find one more pimple on my chin, I gonna scream.  On the bright side: I'm using less shampoo and conditioner, saving money on my groceries, and proving to the world that 36 is the new 15.  Despite all that nit-picky stuff, I would do it again in a heartbeat if I could.  Seeing Joe doing so well after just one month made this whole journey worth the gut-tearing sneezes and the inability to finish a kid's meal.  Plus, it makes great fodder for jokes when my kid looks at me with a "really Mom, do you really think your spleen is gonna come flying out when you sneeze?" expression every time I make that face. 

Sleepy time!  Till the next time, behave...

One Week Kidneyversary!

No kids, I didn't disappear in a tragic surgical mishap.  I have been in a perpetual cycle of gassy discomfort and semi-effective analgesia via Percoset.  Every time I tell myself that I'm going to post, I look at the clock and realize it's time for my next dose of meds.  I swallow said meds, sit down to write, and fall asleep.  Today I have lengthened the time between doses, so here is your update, you vultures!  :-)

Last week at this time, I was in a heavily sedated fog.  I was coming out of general anesthesia, had no voice, and a very annoying nasal cannula delivering what felt like sub-zero oxygen directly to my brain.  I felt like I was seeing the world with one eye open, and as I try to recall it now, holding conversations with my visitors like a cartoonist drunk with a lisp.  I do remember a picture of Joe's former kidneys.  I also remeber my PACU nurse being quite annoyed that she couldn't give report on my status to the nurse on the transplant floor who would be caring for me.  My one thought during her tantrum was "either she really wants to go home, or I am that patient that does everything in their power to annoy their nurse".  Then I passed out again.  I vaguely remember the parade through the hospital to my room, a discussion about the amazing view of the Bromo Seltzer clock tower outside one window, and the kick-ass view of The World-Famous Lexington Market (*laugh-cough-laugh*) out the other, and gushing over how lovely and spacious my hospital room was, and OMGshehasherownfridge!  In was also given my very own cape.  Joe had it made for me, and it appeared in my hospital room Friday night, along with a massive fruit and snack basket from the hospital. 

About three o'clock the next morning, I finally came completely out of my sedated fog.  The guy in the room next to me had turned the volume of his T.V. up as high as he could.  FYI, Family Feud at 3am is not an appropriate way to wake a recently sedated patient.  I was mad!  But seeing as how I was so recently operated on, I couldn't just go next door and knock some manners into this rude ass man, so I called my nurse for pain meds and gas meds and fell back into a restless slumber.  For an hour.  Because gas had invaded my shoulders.  And it hurt.  A LOT!  And thus went the next hour or so (time was still blurring together).  4 am, my nurse comes in to do rounds and let me know that my Foley catheter (pee bag) will come out.  5 am, my tech comes in to check my vital signs and empty aforementioned pee bag, 5:30 brings plebotomy in to take blood for labs, 6 is my date with the nurse to remove the catheter from my bladder.  At some point, I request a shower.  The nurse is only too happy to oblige (I must have smelled like a homeless person, judging by her reaction).  She assures me that the tech will be in shortly with towels and a fresh gown.  I told her no rush, because I wanted to try walking.  She looked ecstatic at this declaration; I quietly mused that she must have to take a cattle prod to some patients.  She helped me sit up after checking my incision and IV sites, unplugged my still running IV pump and helped me to my feet.  She offered to walk with me, but I declined.  I was on a mission to go see Joe, and he was on the other side of the wing.  His room was literally the first room of the transplant wing; my room was the last.  It was planned that way by our sadistic, evil coordinators, I just know it!  I was so excited when I saw him; despite having just had what basically amounted to two infants removed from his abdomen, he looked fantastic!  Well as fantastic as one can look when they are sporting multiple tubes in their face and neck, among other places.  I didn't stay too long, because I was in pain and so was he.  I made my way back to my room for that much anticipated shower, and was denied by my tech because "the hot water sensor was malfunctioning; also we are out of washcloths.  I'll set you up a basin at the sink and bring in a chair".  Trying to give yourself a spongebath right after abdominal surgery is every bit as difficult as you imagine it to be.  I managed to wash the important bits before I gave up.  I took a nap immediately after.  I made a few more trips down the hall that day to see him, including a 2 am Sunday morning stroll (I couldn't sleep and neither could he.  There was a code blue a couple rooms over, and housekeeping thought the wee hours of the morning is a totally appropriate time to change garbage bags and mop room floors). 

I was discharged from the hospital on Sunday, 2 days after the transplant.  I was allowed a shower (not a damn thing wrong with the hot water, so I took my sweet time and enjoyed getting clean.  Surgery sure makes you feel scummy!).  It's amazing how much better you feel after a nice hot shower.  It's also disturbing how obsessed with your farts and poops medical staff become when nothing has happened within 48 hours of surgeons roughing up your guts.  I wound up telling my tech Sunday morning "No.  No I have not pooped or farted.  It's next to impossible to do so when all I've had to eat is chicken boullion and lukewarm tea.  I'm burping like a drunk sailor though, so YAY!"  She wasn't amused.  My nurse must have had the message relayed to her, because she really didn't discuss it at discharge.  She probably guessed that I was smart enough to review my discharge instructions and call my surgeon's office if I haven't had some movement (see what I did there?) after a week.  I assure you, all is good. 

So I've been home for 5 days.  For the most part, they've been okay.  Not pain-free by any stretch of the imagination, but it sure beats trying to get comfortable in the hospital.  The pain is subsiding, and I now know that my belly button looks like it starred in a slasher movie and was a victim of the killer.  My right hand looks like I went 3 seconds against Evander Holyfield (blown IV), and I'm still looking forward to being able to roll over in bed without feeling like my abdominal muscles are tearing back open.  Despite all this, if I had it to do all over again, I wouldn't hesitate.  The pain is worth it, and it's much less than the pain Joe is dealing with in his recovery.  They basically removed two 20 pound weights from his gut.  All of his organs and ribs have to adjust to being where they belong.  Plus a mega-incision to heal up.  Ouch!  Anywho,  there's the deets!  

I follow up with my surgeon next week, and should hopefully be able to go back to work with some restrictions shortly thereafter.  I hope so, because I'm starting to get a little restless.  That, and summer is almost upon us, which means travelling, which requires money! 

Okay kids, it's almost dinner time so I'm off to feed the boy.  Till next time...

Gina, the Super Donor!

I thought things were going to be different...

But it is looking like I was wrong.  After nearly 6 hours of appointments today, I am left with a disturbing feeling of deja vu; we are repeating events from the postponed surgery, and it's becoming very scary.  First, family that had planned on coming down last time had to cancel the trip due to unforeseen circumstances; same thing this time.  Last time, the hospital PREP center confused me with another donor by the same last name.  We straightened it out right then and there, but it shook my confidence a little bit.  Before we went today, Joe and I were told that our paperwork from the last visit would just need to be updated.  Not only did they not have mine (not sure about Joe's), but they had the other lady's in my place!!!  Talk about making my heart stop!  After all we have been through over the last couple of months, after the letters that were written and the phone calls that were made regarding the completely inexcusable botch job of the previously scheduled surgery, you would have thought that every effort humanly possible would be made for this thing to go off without a damn hitch.  I guess not.  I guess that things like this really aren't as serious a matter as the layperson believes.

Make no mistake, I am still unwavering in my commitment to donate this kidney to Joe.  If anything, my resolve is stronger.  We have done every damn thing that has been asked of both of us; imaging studies ad nauseum, more labwork than anybody should have to have done in a lifetime (7 tubes for me just today, just like the last pre-op appointment), lots of time off work for appointments (Joe), and major lifestyle changes (for both of us).  While these things aren't uncommon for many pre-transplant patients, the events that precipitated them could have been avoided like the plague.  Hell, they never should have happened to begin with.

So, we're just over two days out.  We are both ready for this to be a thing that happened, not something we are waiting to do.  I am ready for the anticipation, anxiety, and stress to be over, as is Joe.  He is ready to not feel like crap every day.  I don't blame him one bit.  We are ready to move on from The Surgery That Wasn't to the Successful Transplant That Was.  I am ready to look at both (or all 3, depending on circumstances) and all 6 (or 7) of Joe's surgeons and say thank you for doing everything you did to make my husband's and my friend, my son's Unca, better.  

And that, my friends, is all that we have been busting our asses for for all these months.      

I haven't forgotten about you...

Yes, I'm well aware that it has been 23 days since my last post.  Not much has happened in regards to the actual transplant.  There has been a minor development with the complaint Joe and I filed in regards to the shenanigans from the surgery that wasn't, however.  Joe's surgeon sent him and I a letter of apology, which in short stated, that because of the events that took place the morning of our postponed surgery, pre-transplant policies will be changed to include more thorough face-to-face communication amongst the different practices involved in transplant surgery.  SCORE ONE FOR FUTURE TRANSPLANT PATIENTS AND THEIR DONORS!   And to think that all I was doing was giving away a measly kidney!  Who knew that Joe and I would be effectively changing the way transplant cases are handled.  I knew my flawed anatomy was good for more than just subjecting me to more imaging studies than most people have in a lifetime.  :-)

So, we are just over 8 days away from Leftie's Moving Day, Redux.  Last time, I wasn't really nervous until I was in pre-op, and that didn't even happen until the tech started stabbing blindly at my arm.  This time, I've had that horrible morning eating away at the back of my mind.  For the most part, I've been pretty successful at stifling the gnawing thought of repeat performance.  As the days draw ever closer, it's getting harder.  Add to that the fact that the patient representative from the hospital has yet to return any phone calls or emails explaining how the rest of our issues have been and/or are going to be handled.   This inattention is not for lack of trying on our part; I left a voicemail for the woman just today and fully intend on doing the same tomorrow.  I am quickly losing my patience with the woman to whom our case was given. 

8 days.  8 days that will surely pass in the blink of an eye.  Of those 8 days, I will work 3, try to have a family fun day on a rare Saturday off, go to the gym a few times, go back to the surgical prep center for another pre-op appointment, and hope to hell that the hospital doesn't royally screw the proverbial pooch again.  In those 8 days, I will once again make sure my house is ready for family to help while I'm recovering, go grocery shopping so there's enough food for my ever-hungry hubby and kiddo, and all the other little nit-picky things that need to be done on a regular basis.  At least I'm not waiting for furniture this time! 

Okay kids, time for bed.  I will make an effort to update if/when I hear back from the patient rep.  It damn well better be before May 2nd.  Otherwise, see you next Friday! 

Gadolinium, anyone?

So today, I had the distinct pleasure of being shoved inside an MRI machine for nearly two freaking hours.  I had an MRV (MRI of my veins, the renal veins to be more specific).  From what I was told by the radiology tech, and from the information I read, this test should have taken about 45 minutes at most.  Guess this process just can't go smoothly at any step of the way, can it?  The garage I normally park in was closed for permit parking only when I got there, only to open when I walked past it to my appointment (I parked 3 blocks away), I was sent to the wrong radiology office by both the transplant clinic and radiology admitting (I asked twice where I was supposed to go) which cause me to be late for my appointment.  I was fortunate enough to get a tech who knew how to place my I.V.  No bruises or blown veins for me!  Hell, I barely have a mark on my arm!!!  She saw the remnants of the bruises that Wonder Tech left more than a month ago, and asked what happened.  I vaguely explained, and she just shook her head.  After the I.V. was in, I almost hugged her.  Just the fact that she didn't try to install a garden hose into the crook of my elbow was the highlight of the whole experience.  I was led into the MRI suite and brought over to the machine.  I laid on the ridiculously skinny table, got hooked up to the contrast injection machine, swaddled in a sheet to keep my arms next to me, and covered with the MRI antennae.  These are the grids that they place over the area being examined.  I had two; one over my chest, one over my abdomen and pelvis.  The tech set me up with headphones and then we were off.  I was placed in the machine and shortly after, the test began.  I swear, an MRI of any region between your chin and thighs should be considered a cardio workout; there are lots of "Take a deep breath and hold it" and "Okay breathe".  Holding your breath for 20 seconds at a stretch, for multiple images.  This becomes difficult with approximately 10 pounds of stuff laying across your chest and belly.  This went on for about 40 minutes before there was an abrupt halt to the activity.  Apparently the radiologist decided to briefly review my films mid-exam.  When the scan resumed, I was given the contrast.  Ladies and gentlemen, if you've never had the contrast for and MRI, it is a freaking weird experience.  With a CT scan, the contrast makes you feel incredibly warm for a few seconds, and then you feel like you've peed your pants.  The MRI contrast, however, made me feel so weird, it scared me for a hot second.  I got the tell-tale metallic taste in my mouth, right before it got a tingly feeling in the back of my throat, all the way down my spine and in parts better left undescribed.  It went away after a minute or two (kind of hard to judge time when your face is 3 inches from the inside of the tube).  The test went on, and I then I felt a hand on my foot.  The tech pulled me out of the machine and told me that the radiologist wanted to review the new scans before he let me go.  A few minutes later, the tech came back and released me from my swaddling.  He removed my I.V., said that the scans would be officially read by the end of the day.  I thanked him and beat feet out of there.  Got home, snuggled my baby boy, and shared a turkey sandwich with him.

I was hoping that the scans would be posted online to my imaging account tonight, but alas they aren't.  I also haven't heard from the Transplant team as to the results; I'm quite sure they will be going over these scans with a very fine-toothed comb, lest they miss something like they did last time.  We are on our one-month countdown again.  I really hope that there are no major hiccups this time around.

All for now.  Goodnight!

Some news...

One of J's surgeons just called me.  On a saturday.  As soon as he said his name, my internal anxiety meter hit eleventy billion jigawatts.  He's a super nice guy, but he scared the hell out of me!  I was waiting to hear "you're no longer a viable candidate because of your screwed up veins", but heard instead, "I'm so sorry to call you on a Saturday,  how are you this morning?".  He apologized profusely for the shenanigans that ensued in February, and asked if I was still interested in donating.  I shocked the pajama pants off him when I said yes.  He actually said, "I'm genuinely surprised, given the events surrounding the postponement of the original surgery.  You are a wonderful person for still wanting to do this."  *TEAR* 
Anywho... so we discussed my funky veins again, and what we needed to do.  He want me to go for one last test, to get a clearer picture of the veins coming out of and surrounding both of my kidneys.  The CT Angiogram focuses on, you guessed it, arteries.  By the time the contrast hits the veins, it's fairly diluted so the veins don't show up very clearly.  The MRV (magnetic resonance venography) focuses on the veins.  It is, as described, just like an MRI.  If you've never had one, just imagine sitting inside a drum set, like actually inside the drums, for an hour and a half or so.  Throw in the occasional machine gun fire and there you have it.  Strangely, the noise doesn't bother me, nor do I get that all-too-common claustrophobia.  I have been known to fall asleep during MRI's.  What can I say; I'm strange.  Anyway, hopefully we can get this done sometime this week, and get on with this transplant.  May 2nd is our new planned date; it would be really nice if we could get this done, on schedule,  with as little b.s. as possible. 

Till next time!  :-)

No news...

I'm really only updating because tens of people have asked if there is any news; i assure you that after I alert the media, call my family and closest friends, update my Facebook status, post a Tweet, and post a picture on Instagram, you all are the first people to know!  Promise!!!  I'm still in a holding pattern; J had labs drawn in preparation for the first of his bi-weekly visits to the surgeon.  In the interim, we have made a plan to go to the gym at least twice a week, I have gotten him plugged into My Fitness Pal and wearing a FitBit to help him get on a path to better health before the surgery.  If I'm to be blatantly honest, I am using the gym as a tool for distraction as much as for weight loss and fitness.  I can go into the gym, pop in my earbuds, blast what ever music I'm in the mood for (usually something loud and fast), and run my ass off on the treadmill or elliptical.  I can escape for an hour and think of nothing but hitting that next mile on the display.  It has also provided a great outlet for the anger and frustration I have felt for the last two weeks about the postponement of the surgery.  If nothing else, I'll go back to the OR with a sweet 6-pack.  See, there are positives to every situation.

Okay ladies and gents, off to bed for the night.   

Today Really Sucked!

Like REALLY sucked.  We got to the hospital at 5:45 this morning to get checked in and prepped.  After J and I go through all the formalities of registration and the nurses' questions, we each get changed into our high-fashion hospital gowns, slippers, and hats.  I love hospital couture, by the way.  I find it so light and airy!  This is where the morning starts to go to hell in the proverbial handbasket.  J and I are sharing a pre-op room and techs, but have separate nurses.  While one tech is taking his admission vital signs, the other is butchering my arm in a severely botched attempt at placing an IV.  I am not joking about this; it took every ounce of severely depleted restraint I had to not punch this woman in the face as she stuck me the first time with a way too big IV way too agressively, pushed it through the vein so hard that she blew it, and watched as blood not only poured from said mangled vein onto my arm, but collected under the skin and formed a beautiful golf-ball sized lump.  I told her as nicely as I could to get the damn thing out of my arm because it hurt, a lot.  She said "Oh, I guess it does, it's a little puffy."  YA THINK?!?!  She kind of moseyed over to the other side of the bed and mumbled something about having to try again with a smaller gauge needle.  I was not very gracious in my thanks for that.  While Wonder Tech #1 is setting up for IV attempt Part Deux, her dusty, trusty sidekick shuffles over to get my vital signs.  Having heard her arguing with J about his blood pressure and last food intake and whatnot, I was less than impressed before she showed her face on my side of the curtain.  My disdain with her was only solidified when she proceeded to argue with me about keeping my swollen, painful arm still so she could get a good blood pressure reading on me while her cohort fished for a vein in my other arm.  I seriously contemplated head-butting her for a split second, if only to shut her the hell up!  When the Crypt Keeper tech finally finished her business in our room, she scuttled away, never to be seen again.  Wonder Tech then went to J's side of the room and tortured him with not one, not two, but THREE attempts to get a good line.  Poor guy was dehydrated because of our NPO (nothing by mouth) status as of midnight, as well as the tremendously unpleasant bowel prep he had to do (I was spared this particular torture, I may not be so lucky soon.  More on that to come.).  He is also not a fan of needles, and by the end of this involuntary piercing festival, was as pale as the sheet on his bed.  

After reading about this little adventure, I'm sure you're asking yourself "What a morning!  I'm sure surgery was a breeze!"  Nope.  NOPE, NOPE, NOPE!  If you've never had surgery before, let me break this part down for you really quick.  After answering a ton of questions that you've answered a million times before for your pre-op nurse, you get your IV placed (as established above, but hopefully with more skilled techs than we had today).  Then your ENTIRE surgical team comes in, along with their students, colleagues, friends, spouses, parents, and children.  If you're really lucky, they might bring their dogs.  Then you answer their questions, sign consents (or autographs, depending on who they are and what they want), if necessary, they shave you, and allow them to draw on you (for surgical site purposes.  They aren't artists after all).  At this point in our morning, the urologist on the case came down and explained his part of the surgery to us (mostly J, as he is the lead surgeon on his part of the case.)  My surgeon was in as well, going over my part of the surgery.  This is where it gets majorly hinky; remember a few weeks ago when I wrote about my funky anatomy?  Well, turns out that it's more of a challenge than we initially thought.  Because of the placement of the major vein that supplies the kidneys, if they were to just go in and take the kidney and try to place it in J, that would leave a renal vein about a half inch long to supply it.  Not nearly long enough.  We find this out minutes before we are supposed to be in the OR.  Our surgeons stepped out for a few minutes, came back and J's surgeon says "I am about to be a very unpopular surgeon this morning".  My heart SANK.  I had an idea of what was coming at us before he said it.  When he told us what I just got done typing, the first thing that came to my mind was "Well isn't that just a punch in the face?  My anatomy sucks and now we can't do this."  We got *this* close, only to be told "Hey, sorry to tell you this, but I only skimmed over your actual CT scan and went by the report said, so we thought we could go with the traditional approach.  We were way wrong.  Whoops."  So now we get to play the waiting game for two more months, and are on the books (supposedly) for May 1st.  For the love of all things, everything had better fall into place the right way, and I mean everything, so that this can go according to Plan B on May 1st.

I'm exhausted, so I'm off to bed.  Good night, and please send good vibes our way.  We really need them.

The countdown is on!

We're in the home stretch.  Less than 2 days left until Lefty is moved from his current home to a new address.  It has been a whirlwind for sure; I really don't know if transplants move this fast normally.  We started this process officially on December 9th.  From start to finish, it has taken just shy of three months to get to this point.  I know Joe is ready to be two kidneys lighter.  The coming days and weeks will be an adventure for sure.  I'm just about ready; new furniture is in, house for the most part is clean(ish).  It's nearly impossible to keep it as clean as I want with a precocious 21 month old running the roost, which is okay.  I just have to keep chasing Cheerios out from under the couch.  

I don't really have much else to add today, I'm exhausted and still have a ton of stuff to get done (laundry is almost about to be checked off my list!).  I will try to post a couple of quick updates throughout the week.  Have no fear, SuperBean is here!!!

Good night friends!  :)

We're almost there, folks!

In 8 days, I will do something that will drastically change someone's life.  In 8 days, I will be an organ donor.  In some people's eyes, this will make me a super hero.  In my eyes, I will just be me.  Gina, but with one less kidney.  I wonder if the hospital gives out capes as parting gifts?  That would be funny; you get a cape when you sign your discharge papers.  "Thanks for giving away your kidney, here's your shiny green cape.  Sidekick not included."  Speaking of parting gifts, did you know that there is a market for transplant donor and recipient gifts?!?! For some strange reason, I decided to Google funny recipient gifts, and lo and behold, the first two websites that came up were CafePress and Zazzle.  They each have tons of those useless (read: tote bags that you'll never use and keychains destined for the junk drawer) trinkets that people love to give.  Some of the stuff is cute and funny, but nothing I would buy.  There are people who love that kind of stuff though, so now you know!  

Tomorrow is "Bye bye Old Couch Day" and Wednesday the new furniture is being delivered.  The house has been as thoroughly cleaned as I can possibly get it, save for scrubbing the walls and ceiling with bleach.  Ain't nobody got time fo' dat!  Clean floors, bathroom, kitchen, and bedroom.  Groceries, check-ish (still need a few things).  At this point, I can't even think of what else I need to do.  I'm just winging it, not gonna lie.  The next week is going to be a whirlwind, for sure.  Can't wait!

Off to bed, I'm wiped out!  Until next time... 

Pointless Post

I'm really only posting because I feel like I haven't in a really long time; in truth, it's only been a week.  Tomorrow is both J's and my pre-op appointment.  His is exponentially more lengthy than mine, and for the life of me, I can't remember what exactly he has to do tomorrow.  I will be signing my consent forms and meeting with my surgical team.  I already had all my pre-op labs done (yes, more blood and peeing into cups) last week.  We're getting down to it, peeps; 14 days, nine hours till The Great Kidney Swap of 2014.  Tomorrow is also the day I *should* be purchasing my new couches!  SQUEEEEE!  I am ridiculously excited.  I am a simple creature, I know.  Nothing else very exciting happening here.  Actually, this past week has been really kind of emotional for me.  So many different things are going on inside my head that I am kind of having a hard time dealing with it.  PLEASE NOTE: this has no bearing on the transplant whatsoever!!!  This is due to outside circumstances (read: dwindling support) as this process goes on.  As I said previously, I have some amazing friends, co-workers, and a few family members that still give a damn and have been an amazing source of strength.  Thank you all!  I will never forget how much you all supported me.  The rest is what it is.  I can't change it, I can only move past it, and I am starting to.  I just keep telling myself that the most important thing in all of this is that J is healthy and that he buys me those fries.  

Anyway, how about that awesome snowstorm the East Coast is supposed to get, huh?  It's supposed to start here in Maryland tomorrow evening and from what I hear, continue through till Thursday evening.  ICK!!!  

Have a good night everyone!

Well alrighty then!

I got word today that my repeat labs came back okay.  I will have to discuss those weird findings with my primary care physician and discuss where we go from here.  I have been told that it will not affect the transplant process or my health after.  *WHEW!!!*  Remember that "5-ish" weeks I was telling you all about last week?  That is officially 4 weeks and 2 days from now.  That's right boys and girls, I got work today that unless there is some ridiculously apocalyptic occurrence between now and then, I will be forever separated from Lefty.  Well physically anyway.  J will be the proud new owner of a shiny new kidney, and be availed of all the perks therein.  Like peeing normally and being able to eat french fries.  And I be able to say that I can leave a lasting legacy for my family.  I am so proud to be able to be a part of this process!  As I said previously, I only ever imagined donating an organ or tissue after my death, and I was totally okay with that.  But being able to do this while I am still living and breathing, and being able to walk down to my friends room and see that he is doing well means so much more to me than words can ever express.  And I will be the one to visit him first, because I want those french fries!!!  

All the above being said, I am fully aware that the next few weeks will be nothing short of a whirlwind.  I am also very aware that it will be very stressful; it already is.  I would be a lying liar who lies if I said that I wasn't scared to death, but I am amazingly fortunate to have awesome family and friends who have stepped up and offered their support in so many ways: they have listened when I want to talk about the process, offered help when the surgery happens, and kept me from losing my mind when I start to get scared.  I tend to get wrapped up inside my own thoughts sometimes, which leads to over-analyzing situations, which then leads to me freaking out.  I tend to have these "freak out sessions" with my friends, and they have been amazing.  I have not forgotten that I have those that aren't a part of this journey; I am disappointed, but I have obviously gotten this far without that support so I am fully confident that I will be without it afterward.  I like to think that I am a much stronger woman than people give me credit for.  

Ladies and gentlemen, I must go.  I have a few things to mull over and a lot of organizing to do.  And menu-planning, and a schedule for the kiddo for when I have out-of-town family down to help, and I have to shop for a new couch, and......

See you later!

Watch out for those speedbumps!

I got an email from my coordinator today; the results from my hypercoagulopathy study redraw came back.  One of the numbers is still pretty high.  I'm not 100% sure what that means from a donation standpoint.  There are a few things that cause it and there are a few things that it can cause.  The results are going to be sent back to nephrology and rheumatology, and we will go from there.  I am anticipating having to have more tests run, and I don't mind at all.  I knew that there was a small chance that something like this could happen; they are analyzing every single system in my body, and with the amount of blood they have taken from me, I'm surprised that the results didn't just pop up from one of the tubes.  So basically, I have defective blood.  Based on the rest of the lab results, it has no effect on my kidney function, which in turn will not affect function once said kidney (from what I have been told, the left one is being transplanted.  Let's call it Lefty from now on, shall we?) is transplanted.  Lefty and her counterpart Steve are functioning exceptionally well, so my defective blood is solely a "me" issue.  Also, there are unconfirmed rumors floating around that we may be doing this transplant in 5-ish weeks.  I've not heard that officially, but I'm planning as though this may happen in 5-ish weeks.  I am looking up freezer and crock-pot meals, amassing reading material and quiet projects like crocheting and knitting (or some semblance of said activity that will likely look like I took the yarn and knotted it into a "scarf"), and ways to entertain a toddler when he begs to sit on my lap in the first few days.  I have also considered making "cough pillows" for myself and J.  I'm thinking of a Doctor Who theme, and a small patch on his that says "I have new kidneys!  I don't like the colour. ~12"  I think it's quite appropriate, don't you?

We (J and I) have had a couple conversations about whether or not he will "inherit" some of my quirky traits after transplant.  Apparently this is a thing; recipients sometimes start exhibiting similar behaviors to their donors.  We were also just joking about our in-hospital accomodations.  As it was described to me, I will be staying in a private Donor Suite, the Hospital Hilton if you will.  I am not sure what kind of room J will be in, but I can only assume it will not be a stretcher in the hallway.  We also have a friendly wager going on who visits whom first.  The stakes: french fries from McD's.  We are simple creatures.  

All righty friends, it is late and I must shop for a new couch.  And do the dishes.  And switch over the laundry.  See, I'm really just an ordinary girl!

Peace out!

Well that was a fun week...

No, I did not fall off the face of the planet.  A mere two days after the fun of Donor Day, I was hit squarely in the face by the evil Flu.  Had the tiniest of tickles in my throat after work on Saturday, then woke up Sunday feeling like a fleet of Mac trucks had driven over me, stopped on top of me, and decided to idle for a week.  Oh, and I also infected my son.  So there was me, sick as all get out, dealing with a really sick 19 month old.  It was the best week ever!

Anyway, all my lab and imaging results came back great except two.  My hypercoagulopathy studies came back abnormally high, which is not awesome news because it can be an indicator of clotting issues.  I will have to have them drawn again.  After the results come in, we can schedule surgery.  We're coming down to it folks.  I am in a place where the anxiety feels overwhelming sometimes, but I just keep telling myself that it is all for a very good reason.  I remember that as intimidating as this process can be at times, the end result is that a friend will be healthy!  I'm just glad that I have the support that I do.

Having said that, let me be very frank; there are people in my life that flat-out refuse to even discuss this process.  Let me be very clear: this has not deterred me from the end goal!  The decision to donate is a very personal one.  It is my decision and mine alone.  No one can make it for me, nor can anyone make the decision for me not to.  I have been deemed an excellent candidate for donation by a very competent team of surgeons, nurses, social workers, psychologists, radiologists, nephrologists, and a bunch of other -ologists.  My intended recipitent is also very much on board, because he has just as much say in whether or not he takes my kidney as I do in whether I give it to him.  In truth, I made the choice to be an organ donor nearly 20 years ago when I signed a little piece of paper at the DMV.  The only difference here is that I am still alive when I donate.  My detractors have not really expressed their feelings about this donation to me, nor do I expect it.  I've gotten a few "what-if" questions, but that's about it.  I respect them for those opinions, but aside from my medical team and myself, the only other opinion that matters is this process is that of my husband.  He's cool with this.  I have spared him no detail that has been shared with me along this journey; what I know he knows, right down to how many vials of blood they take when I go to the lab.  I have been completely transparent.  I have created the opportunity for dialogue with everyone I know.  There are some that have embraced that opportunity, others that feign interest for a short time and then let it go to the wayside, and as I stated above, those that don't want to discuss it at all.  That's fine with me.  Not every wants to know or cares to know.  

So friends, I'm going to have those two labs drawn tomorrow or Wednesday if the weather is too bad tomorrow.  Hopefully we will be scheduling surgery by next week.  I know I'm not the only one who's ready to get it done!  =)

Til next time!

 

I'm Not Glowing!

*WARNING: TODAY'S POST IS LONG!*

All in all, Donor Day was a rousing success.  Nevermind that I was deliriously tired, having worked last night and having gotten up at 6 this morning, and let's forget the fact that a good part of my day was spent going between two different buildings for the various appointments I had to keep.  Let's go ahead and visit this lengthy process for a bit:

7:45 am: Check in with the Transplant clinic, meet with the Donor Coordinator's Assistant and review the upcoming appointments for the day.

8:00 am:  Meet with the Donor Coordinator and have a "presentation" about the donation process.  This included a Power Point presentation (we went through the printout, as I was the only donor there today.).  We discussed what the surgical procedure was like, what to expect from my hospital stay, what my restrictions would be post-operatively (no lifting anything over 10 pounds for two weeks, which is easier said than done with a 19 month old, pain management, etc.), how often I would have to follow up with the team after donation (I will be followed by the transplant team for 2 years, this is standard protocol for the hospital I am donating at), and the various risks of donation.  As a whole, the risks are fairly standard as surgeries go; blood clots, pneumonia, wound infection, hospital-acquired infection, and that ever-present risk- death.  Those are all pretty minimal, but they have to be discussed with the team.  There is also a risk for depression and/or anxiety.  This mainly ties into the fact that they will be removing an organ and that there will always be an uncertain possibility of rejection.  These risks are discussed almost to the point of beating a dead horse; it is important to always keep these risks in the back of your mind though; being caught unaware would be undesirable.  We also discussed the long-term implications of having only one kidney.  My remaining kidney will grow a bit to make up for the fact that it has to take up the slack for its counterpart being taken away.  I'm sure that if organs had thoughts, up until this point, my pee makers were pretty oblivious to what was going on.  Then they got flooded with radioactive contrast, at which point they were probably screaming "What the bloody hell is going on out there?!?!"  More on that in a minute.  With only one kidney, I will not be able to take Ibuprofen or other medications that are broken down by the kidneys.  My kidney will have a slightly tougher time handling their job on a day-to-day basis; throwing anything extra its way would not be very nice.  We also discussed that while this is a necessary surgery for the recipient, this is 100% elective for the donor, and that I should in no way feel obligated or pressured to do this (I know this, I don't feel obligated.  The choice to donate is deeply personal and while the team would help me should I change my mind, I don't think this will be an issue)  This wraps up the Donor Presentation, so then we move on to Radiology.

9:10 am:  I am waiting in Radiology to have a chest x-ray and CT Angiogram done.  The angiogram is to check the structure of the kidneys, adrenal glands, and surrounding blood vessels.  This is important, because this test will show the surgeon what he can expect before surgery from an anatomy standpoint.  It will also alert the surgeon if there are any stones, cysts, or abnormalities that are otherwise undiagnosed.  The chest x-ray is fairly standard.  It will show any abnormalities in your lungs and ribs, make sure you have no fluid in your lungs (pneumonia), masses, or other abnormalities.  Go in, hug the metal plate, inhale, hold and wait, exhale.  Turn to the left, raise my arms above my head and inhale, hold and wait, exhale, done.  The angiogram was a little more intense.  If you've never had a CT scan with the contrast, hold on to your undies, you're in for a ride (literally)!  I went in to the freezing cold CT room (wearing 2 hospital gowns, my socks, and sneakers.  I was one sexy woman!) and was warmly greeted by the technologist.  She explained the procedure and then we started.  She placed an IV into my arm, tested it with some saline, and hooked me up to the pump that administers the contrast.  We did 3 scans: a "scouting" scan, where they just quickly scan to get a sense of my anatomy, the second scan during which they fill the blood vessels with a little saline and contrast, and the third during which they pump the rest of the contrast as the scan is happening.  The last is to see how the kidneys filter the contrast out and into the bladder.  Now, one important thing to note is that the contrast had a weird side effect: it gave me a brief metallic taste in the back of my throat, which was quickly replaced by an intense feeling of heat from the back of my throat to my nether regions, almost like I had peed my pants.  Not at all pleasant.  After the scan, the IV was removed and I was on my way!

12:15-12:50 pm:  Lunch.  Panera Bread, nothing too exciting.  Lots of water to rid myself of the taste from the IV.

12:50 pm:  Meeting with the donor nephrologist.  I had to pee in a cup again (I probably could have filled that damn bucket!) and had an EKG.  My ticker is fine. Kind of a bland guy, went over my medical history for the billionth time.  Reviewed my lab work for the millionth time.  Had my second physical exam of the week.  Discussed the risks of the surgery again, discussed again that the team would help me should I change my mind about donating, and he wished me well.

1:20 pm:  I had to meet with the Social Worker.  We discussed the whole process again, but in more detail.  We talked about my support system (I am fortunate enough to have tons of amazing family and friends who will help me through this process), who will be home with me after the surgery, trying to uncover any underlying risk factors that could potentially halt the process (mental health issues or prior drug abuse are two of those things), making sure my mental faculties are intact, making sure that finances weren't going to be an issue (I am not paying for any of the testing, surgery, hospital stay, or after care.  The finances in question are any lost wages while I'm out.  There are grants available to help with basic bills.  All I have to do is call.  We also discussed whether or not my job is supportive of my being out; they are super supportive!  We finished up with a "See You Soon" and I was on my way.

2:15 pm:  The final meeting of the day, and it's with the surgeon and Donor Coordinator.  Of course, me being me, the first question I ask is what happens to the adrenal gland.  He kind of chuckled and pulled up my CT scan from this morning.  He showed me that because the way my anatomy is, the adrenal gland will likely be unaffected.  He also said that my kidneys are in great shape, the blood vessels look awesome, and he sees no real problems with proceeding with surgery.  He also did a quick physical exam (again).  The surgeon and Donor Coordinator let me know that they will review my results this coming Monday and assured me that I should hear back from them by Wednesday next week as to an approximate timeline for surgery. From there, we schedule surgery, do our pre-operative testing, and do this thing!

So, the moral of today's post:  I have had more physical testing and labwork in the last month than most people have in 3 years, I should get paid for my urine and blood, and I got no super powers from a radioactive injection.  Good Night!

Happy New Year!!!

Now that the hustle and bustle of the holidays are behind us, and I have a few minutes to post, let me begin by saying that I hope everyone enjoyed their holidays.  There are really no new updates on the transplant process itself.  We are still in a holding pattern pending my Donor Day visit to the hospital and possibly a few more tests for J (not really sure, we've both been crazy busy!).  This is more of a "how am I feeling about this process" post.  

I have to be honest: the closer we get to the actual transplant, the more nervous I become.  I realize that this is a totally normal reaction to having surgery.  I've had a grand total of 2 surgeries in my life; one when I was 15 to have my tonsils removed, and one when I was 27 for abdominal surgery.  The tonsil surgery was a little less nerve-wracking because I got to look forward to being able to swallow normally, and I was too young and naive to know how it would affect me, physically.  When I woke up, I heard the heart monitor beeping and thought I was dying.  The second one was a bit more anxiety-inducing because I knew that I didn't do well with waking up from anesthesia (I wake up thinking that I'm dying, remember?).  This time, I have that knowledge coupled with the fact that laparoscopic surgery makes you feel (and look ) like an over-inflated balloon because of the gas that the use to inflate your abdominal cavity so they can better navigate around your internal organs.  Sounds like a blast, right?  Not really!  When I woke up from the second surgery, I swore an elephant was sitting on my chest and that the surgeon had tried to use me as a party decoration.  The nurse did her best to reassure me that this was most certainly not the case; I was too heavy to float above the table, and the elephant was too large to get into the room.  I'm fairly confident that there will be no large pachyderm sitting atop my body as I wake from this surgery, so there is one less worry.

No, my worries are much more sane this time.  I'm worried about being away from my husband and son while in the hospital.  I've never spent a night away from my son.  I'm worried about the logistics of surgery day: who will stay with the kiddo when I go in for surgery?  Should I have Husband stay home with him that morning and have someone drive me in?  I've briefly discussed this with my best friend (Son's Godmother) and she is okay with doing this.  Husband is a little bit on the fence; while he wants to be there when I go in, I want to keep the disruption to Son's schedule as minimal as possible.  I'm worried about how I'm going to keep from going crazy while in the hospital.  I'm I do plan on bringing a couple of books with me, maybe a crossword book or something, but I don't plan on bringing any electronic devices other than my phone because I don't want to chance having them go missing if I have to leave my room for something.  All these weird, random questions keep running through my mind about how I'm going to deal with this process.  That's another reason why I started this blog.  I feel a sense of calm being able to put these nagging questions down on "paper" without having to talk my friends and family to death; I sometimes feel like they are sick of hearing about it.  

And speaking of stuff to worry about, I really need to remember to ask the surgeon about which kidney they usually remove for donation and what happens to the adrenal gland that sits atop that kidney.  For those that aren't versed in human anatomy, the adrenal glands are paired glands.  One adrenal gland sits atop each kidney.  Both glands have several arteries bringing blood to it, but only one vein taking blood away.  That's where the similarities end.  The right adrenal gland empties directly into the Inferior Vena Cava, a large vessel that carries blood from the lower body back to the heart.  If this kidney is removed, there is no interruption to the arterial or venous supply of the gland.  The left adrenal gland does not; it empties into the renal vein, which in turn empties into the Inferior Vena Cava.  If the left kidney is removed, the venous access to the adrenal gland is removed, and the gland has no way to rid itself of blood.  This can lead to some bad things happening, like blood clots forming in the gland causing the gladular tissue to die or become infected.  I'm pretty sure those are worst case scenarios; I'm still doing research on the subject, and I will be discussing this in-depth with my surgeon on Thursday.  Other than the adrenal gland issue, I really don't care which kidney they take, I'll miss either one just as much as the other.  They have both played an integral part in eliminating waste from my body.  I'm quite fond of them, and proud that one of them will go on to help someone else pee.  GO KIDNEYS!!!

Good night friends!