Days Following Surgery

The day after surgery, as they were trying to help me out of bed to remove my catheter, I felt a searing pain in my left leg.  It literally took me down.  It was like a lightning bolt that started at my hip and went to my knee.  At that point, I realized that besides the searing pain – I had absolutely no feeling in my left thigh.  When I asked the surgeons, they all seemed to be baffled by it.  Physical Therapy was called.  They helped me stand and got me a walker.  The whole effort seemed pointless to me. 

They ended up keeping me an extra day because I was having a hard time shaking the anesthesia and the ongoing issue with my leg.  At the time, I didn’t want to stay an extra night, but in the long run – it was definitely for the best. 

The car ride wasn’t very much fun.  I wedged the kidney pillow between me and the seatbelt, then held my breath all the way home.  It was about a 30 minute drive and completely unnerving. 

My dad was released from the hospital later that same day.  They were sleeping at another family member’s house, then coming to my house during the days.  My dad and I spent a lot of time side-by-side on the couch taking turns napping. 

The next several days all sort of run into each other.  Lots of sleeping, very little eating and conversations that I don’t have a lot of recollection about.  I learned that narcotics are not something I like to be on.  I can say, however, that the sleep was probably the best sleep I’ve had in years. 

I had purchased a belly band to help with my abdominal pressure.  For the first couple of days, there was too much swelling and the pressure was too much for me.  By the end of the first week, I was able to manage it for short periods of time.  I used it because by the end of the day, it literally felt like my guts were falling out. 

During this time, we had lots of visitors and lots of great people bringing us meals.  I’m not really sure what we would have done without the kindness of those around us.  

Transplant Day

One would think that with as nutty and emotional as I’ve been leading up to this day, that I would have woken up a basket case.  The biggest surprise to me is that I didn’t.  I seriously didn’t.  I slept.  Woke up to my alarm.  Got in the shower.  Pulled my bag together.

The ride to the hospital was non-stressful.  We weren’t running late.  We talked.  We went through the motions, but not the emotions.  I didn’t feel anxiety or stress or out-of-control. 

When we got to the Mayo, my dad and I checked in and waited to be called.  They took me back first, then brought my dad back almost immediately following.  We were in the same room, but separated by a curtain.

The nurses went through their motions – vitals, hospital gown instructions, IVs, general instructions.  I could hear my dad’s nurse from the other side of the curtain.  After about an hour, their let our families and friends in.  We chatted, laughed and carried on like it was a normal day or a normal occurrence for the two of us to be laying side-by-side in hospital beds.

My youngest daughter crawled in bed with me so we could take selfies.  My older daughter kept a safe distance and stayed distracted.  It’s how they both cope. 

Once again, I wasn’t feeling any anxiety or fear.  Not a single ounce of it.  I even remember thinking to myself that clearly this was the right decision – I wasn’t feeling anything negative, at all.  I also thought of all of the people thinking and praying for us knowing that it was really helping. 

There were a few tears as they came for me.  I got hugs and kisses from everyone.  I’m guessing that it was harder for them to see me go, than it was for me to leave.  I don’t remember much from that point on.  They must’ve hit the meds almost immediately.

I have a very vague memory of the ride down a short hallway and the bright lights of the surgical suite.  I remember thinking that it’s just like in the movies – bright white and sterile.  My next memory is being transferred from a gurney to a hospital bed.

The rest of that day is quite a blur.  I remember people talking around me, but have very little recollection of what they were saying.  I’ve been told that I attempted conversation with them, but have little recollection of that either.  I remember a whole lot of “I love you” and “we’re proud of you”. 

I woke up in the wee hours of the morning and wanted to know where my dad was and if he was okay.  The nurse went to check on him (or at least, said she did) and reported back that he was resting comfortably.

My pain was managed very well.  I don’t remember much except for little snippets of conversations with my husband and daughter.  

Transplant Eve

It seemed like this day wasn’t going to come.  The hanging TB question on scheduling lingered on and was debated by many.  It started with April (after 9 months of treatment), was scheduled for October 14 (for the minimum 3 month treatment), then ended with my dad’s surgeon willing to risk TB over dialysis – so we arrived at September 22.

It’s definitely been an emotional journey full of ups and downs.  I think I’ve ridden just about every emotion possible.  I’ve laughed until I cried.  And cried until I laughed.  I’ve insisted that everything be in order – from my bank accounts to my closets to my girls to my weeds.  I’m quite sure that I’m driving my people insane.  Distractions are my coping mechanism and I’ve kept them on high speed.

 

Through the magic of social media, I was able to share my journey with many I hadn’t seen in years.  The outpouring of support boosted me from the inside – right after it reduced me to tears on the outside.  The kindness of people has been the best part – especially when it feels like everything else in the world is less than kind. 

The heartfelt private messages I have received have reminded me that I have had a lot of great people in my life.  From an old boyfriend and a college professor who reached out, to the police chaplain that sat at my feet and prayed for me – and everyone in between.  Especially a stranger on this same journey and one who went before us – their friendship has been priceless.

Another thing that I have learned – is that we don’t say ‘I love you’ enough.  Not just to our spouses, children and parents – to everyone.  I’ve heard those three words from so many and realized that they DO love me.  As I love them.  And wondered why we are afraid to tell people.  (Side note – If I told you that I loved you and I creeped you out… my most sincere apologies!)

I’ve had some of the best conversations with people over the last two weeks.  My dad and I have yucked it up on the phone several times.  Humor is our best medicine.  We’ve decided that we put the “kid” in kidney.  And that we’re doing a narcation (narcotics vacation) instead of a staycation this year.  I’ve been able to steal away a few precious moments with those dearest to me and let them know how much I care.  Again, I wonder why we don’t just do this anyway?

I’ve also realized that some people deal with things very differently – by keeping a safe distance.  And I understand that, too.  I know that I sometimes have the tendency to separate myself when I’m scared.  Or don’t know what to say. Or both. 

So, on this Transplant Eve I will do one (or two) more loads of laundry.  I’ll probably vacuum something.  I’ll cling a little tighter to my husband.  I’ll hug on my girls a little longer.  I’ll tell every single person I come in contact that I love them.  Then tomorrow morning I’ll do the hardest thing I have to do – relinquish control and trust that everyone has it covered.  

Medical Evaluation

Finally, my medical evaluation begins.  I have to say, that when I received my appointment itinerary from Mayo Clinic, it looked rather daunting.  Here’s how it went:

·         Day One (8/5/15): 

o   Transplant visit – met my patient advocate

o   Transplant visit – saw the transplant nurse (turns out, it was the same one who did my crossmatch blood test)

o   Laboratory – gave up 8 vials of blood

o   Laboratory – picked up jug to start 24 hour urine collection

o   Radiology – chest x-ray

o   Transplant Evaluation – met with Nephrologist; general “physical” type appointment

o   Donor Transplant Social Services – met with social worker

o   Cardiology – Electrocardiogram

o   At nearly every point of contact they each explained surgical risk factors, pain expectations, likelihood of depression/anxiety and that I was not allowed to be financially reimbursed for my donation (bribe, coercion, etc.)

o   The worst part of this day was the urine collection – dragging a jug with me wherever I went to collect pee isn’t exactly fun times.

·         Day Two (8/6/15):

o   Laboratory – 13 vials of blood

o   Radiology – Contrast dye test; CT Angio of abdomen & pelvis.

o   This wasn’t painful, but the contrast sends a strange warm sensation throughout the body.  It made me feel a little weird and somewhat woozy – I’m guessing because of the significant blood draw and lack of food for the day. 

o   Laboratory – thankfully, got to unload the jug-o-pee that was getting heavier by the hour.  I actually turned it in at 23 hours – I’m an overachiever… I had filled it to the brim.

o   Transplant visit – met with the second transplant nurse.  More of an informal meeting with one other potential donor present.  Again, discussed surgical risk factors, pain expectations, likelihood of depression/anxiety and no financial gain for the donation.  Met a lovely lady (Jennifer) that is on the same path I am.  (We had actually met over our pee jugs in radiology, just didn’t realize we were on the same track together.)

·         Day  Three (8/7/15):

o   Neuropsychology – Psychology visit.  Sat in front of a computer and answered 344 questions related to voices in my head, conspiracy theories, suicidal tendencies, drug/alcohol use/abuse, need to act out criminal behaviors, as well as do I have friends, supportive family, and happiness in my life.  They were all to be ranked on a scale of false, sometimes false, sometimes true, true. I left this appointment feeling somewhat amused and hoping that I had not misunderstood any of the statements, as there were multiple repeats of the same basic topics.

·         Day Four (8/10/15):

o   Nephrology – Hypertension BP monitor.  This was a monster pain-in-the-butt.  It didn’t seem like it would be, but wearing a BP cuff for 24 hours was annoying, at best.  I thought my hand/fingers would turn blue and fall off. 

·         Day Five (8/11/15):

o   Transplant Surgery  Consultation

o   Nephrology – Remove hypertension BP monitor.  I haven’t been this happy to see something go in a long time.

o   Renal Studies – Transplant Iothalamate Test;  This test required 4 hours of fasting before test.  Not a horrible test, just a long one.  Drank lots of water, peed a lot, contrast dye.  Thankfully the nurse/tech was very cordial.  We had a great 3 hours together. 

·         Day Six (8/12/15):

o   Transplant Return Visit –  Learned at this visit that I tested positive for TB (latent).  Learned that this would cause delays for treatment.  Prescription regimen is 9 months.  Doc pushing for one month, but more likely will be 3 months.  

·         Selection Committee to meet 8/18/15

Why?

The questions have started.  Sometimes they’re not out loud, but I definitely get the looks.  And many won’t say it to me, but to others who repeat them.  Let me see if I can get through some of them here:

·         Have you thought all the way through this?

o   Yes, I have.  When signing up for surgery – that will alter my lifestyle – it’s not entered upon lightly.

·         What does your family think?

o   My husband and my kids are very supportive.  I wouldn’t do this without their blessings.  We had family discussions, then individual discussions before I even contacted the Mayo Clinic to be evaluated.

o   My parents initially had a hard time with the idea.  Nobody wants their kids to suffer on their behalf.  My response?  “Say thank you and get on the operating table when the time comes.”

·         Why would you even consider this?  It’s major surgery, you know?

o   Yes, I know.  I “considered” it because he’s my dad and quite frankly, I’m not ready to lose him.  It seems like a small price to pay.

·         But your dad is in his seventies, don’t you think that maybe it’s time to let him go?

o   Yes, he’s in his seventies (72 to be exact), and no.  It’s not time.  He received a life-saving heart transplant in 2007 – the age of his heart is 27.  Besides the kidney failure (caused by medications following the heart transplant), he is active and healthy.  He also has an older sister who is 93 and going strong.  I’d like to sign up for another 20 years with him.

·         Why you?  Didn’t anyone else step up?

o   Yes, they did.  I just went first (they only test one at a time).  My job (being self-employed) gives me the most flexibility.  And I’m a “fixer”.  If I can fix it, sign me up.  No hesitation.  There never was. 

·         This is not to be entered into lightly.

o   More of a statement, than a question.  But yes, I know.  And if both of us weren’t strong enough to get through surgeries – the Mayo Clinic wouldn’t spend another minute on either one of us.  This is not me (or my dad) making these decisions.  These decisions are being made by transplant professionals that follow rigorous guidelines to insure success for all parties – including themselves.

My Dad

This is my dad.  I share him with one brother.  To me, my dad has always been larger than life.  The baby of 11 children (who lost his mother at 17 years old), a jokester and an Army Airborne Ranger.  I thought all of the other kids sang the same nursery rhymes we did – turns out “I Wanna Be an Airborne Ranger” wasn’t sung in all households.  I thought it was.  His nickname is “Slug”.  I believe I was probably 12 or 13 when I realized his real name was Russ.  I had no idea.

My dad and I have always had a great relationship.  My mom recently said that we had always been “thick as thieves”.  Probably.  But my mom was always my best friend (but a tough cookie in the mom-department).  Don’t get me wrong – we fought like two pig-headed people during my teen years.  My shorts were too short.  My shoulders or my belly button were showing.  And my shirts were too see-through – even when I had borrowed it from my mother.  My dad has a laugh that is loud and contagious and a booming voice when he’s angry.  And sometimes not a lot of space in between.

My girlfriends all loved him.  Teen boys feared him.  He has a heavy footstep and stopped the hearts of every boy that rang our doorbell to collect me.  Part of our game was me yelling, “No, dad!  Let me get the door!”  With him stomping (loud enough to be heard on concrete) and returning the banter with, “Don’t you dare.  I will meet this young man!”  If he was still on the doorstep – he passed the test. 

I remember the first time I saw my dad cry.  I believe I was 8 years old.  He took me to the cemetery and introduced me to his mother.  I hadn’t realized that my Grandma Nina wasn’t his mother.  The tears scared me because I had never seen them before.  I also remember the second, third, fourth and fifth times I saw him cry – the day they moved out of state, my wedding day and the days that both of my daughters were born. 

We had running practical jokes and prided ourselves in being able to one-up each other.  His favorite line about paybacks was “you never know when it will happen or how bad it will be.”  As his daughter, I took that as my personal challenge.  I do believe I won the KNIX/KUPD (country/rock radio stations) sticker wars of the 1980s.

I have always been my dad’s personal shopper for my mom’s gifts.  When they moved out-of-state, he gave me a credit card “in case of emergency” – meaning that if he didn’t have a gift, I could take care of It for him.  State lines wouldn’t pose a problem.  (I probably used it for gas a time or two in college.)  I’ve provided him gifts up to and including her birthday last month. 

My dad started having health problems in 2001.  They started with his heart.  We (yes, it was a family affair) survived a valve replacement and a double bypass.  Of course, in true Martin fashion – we clued in on the fact that his valve was bovine (cow).  We were relentless with the cows and spotted things.  On May 5, 2007 – my dad collapsed after his birthday dinner and was airlifted from Safford to Phoenix.  My mom’s phone call went something like this… “Your dad is on a medical helicopter.  He wasn’t stable when he left.  Will you please go to St. Joe’s and tell me if he’s alive when he gets there?”  Uh… sure.  Thankfully when we heard the chopper blades and the elevator door open – he gave us the thumbs up. 

By July 2007, we were told by a frat boy wearing New Balance running shoes and a LiveStrong bracelet to take him home, make him comfortable and that he would be dead by Christmas.  Turns out that frat boy was actually a doctor.  We didn’t listen to him.

My parents contacted the Mayo Clinic to see if he qualified for a heart transplant.  Through a series of intense testing – he qualified.  Even at his advanced age of 64.  (Not that old, I know.  But in TransplantLand – it is.)  We were told that hearts were hard to come by and that he would most likely die on the list.  He made the list at the end of September 2007.

Monday, October 8, 2007 at 5pm we got “the call”.  Of course, we thought “the call” would come in the middle of the night.  This is what we had been groomed for.  Instead, it came during rush hour on a Monday.  The flurry started and we all rushed to deposit kids with trusted friends and get to his side.  As it turns out, his donor was in California and they made several trips back and forth to determine a match.  They took him into surgery around 4am on October 9.

At approximately 4pm, we were summoned to be at his bedside.  Apparently he had started to flutter his eyes and they ran to get us so we would be the first thing he saw when he found his focus.  I remember walking into that room and seeing his heart monitor happily skipping out a new tune.  His face was pink and healthy (we hadn’t realized how gray and ashy he had become).  I grabbed for his hand.  It was warm.  I had forgotten what his warm hands felt like.  He fluttered his eyes open, looked at my mom and said “I’m here.”  I’m not sure if it was a question or a statement.  Or if he was surprised to see US there and not his mother.

Fast forward to 2015.  He’s worn his new heart like a champ.  No rejection. No issues.  I tell people that if you didn’t know, you wouldn’t know.  Until recently.

As it turns out, his anti-rejection medication causes kidney failure.  His kidneys are ailing and appear to be failing quickly.  It feels like it came out of nowhere, but if we look back – they kind of warned us along the way.

So… are you ready for the point?  Here it is.  I’m a blood and tissue match.  And I will donate my dad one of my kidneys. 

Thick as thieves.  Me and my dad.