Sunday, November 2, 2014

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!

Wednesday, June 4, 2014

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...

Friday, May 9, 2014

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!

Tuesday, April 29, 2014

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.      

Wednesday, April 23, 2014

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! 

Tuesday, April 1, 2014

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!