Tori’s Diatribe

So John hinted that he thought I should also write down what my experience is about.  Reader beware, I am not the writer that he is and I like to be kind of a smart ass.  First and foremost I believe that this is John’s journey and I am fortunate enough to be along for the ride.  He is also very correct in stating that our experiences with this are widely different.  I don’t have to face my mortality every day.

For years Eric and I have said that if given the opportunity to give a friend or family member a kidney we would do it.  It is almost as if we knew this opportunity was going to present itself.  When Rebecca emailed us about John’s condition I immediately asked what his blood type was.  John is O- and can only receive a kidney from someone with type O blood.  Eric is A and I know he would have stepped up if he was compatible.

So for the next couple of months I went through the testing without John’s knowledge.   We even trained for the Ogden Marathon while I grilled him about his kidney disease and dialysis.  I was also trying to figure out who my “competition” was.  For those of you that know me, this was probably the longest I kept ANYTHING a secret.

Then at the beginning of May Rebecca invited me to attend a transplant orientation.  When John saw me walk in his thought was, “Oh no, has something happened to Grandma Joy?”  Grandma Joy is mine, Shelly Logue’s and Ali Barber’s grandma, but functions as EVERYONES.  I thought that was very sweet.  Then I said, “surprise!”  John’s reaction was that he had been hoodwinked.

Throughout the meeting I could tell that John was uncomfortable with the turn of events.  At that point I decided to tell John what my motivation was….

When I was five years old my mother was diagnosed with a stage four brain tumor and was given six months to live.  Ali was just eight years old and little Brad only 2.  Very similar to the devastation that John, Rebecca and there three little kids have had to face.

My parents were not going to accept this death sentence.  They spent the next few years traveling back to the University of Maryland getting cutting edge and sometimes controversial treatments for my Mom.  They were gone for a week at a time and in the early years this was every month.  My extended family all took part in raising us.  I imagine John’s dialysis is having a similar effect on the Maws.

During this time my Mom was unable to qualify for much insurance.  Back then you could be kicked off of your insurance if you had a terminal illness.  It took nearly a decade for my Dad to pay off the medical bills, even with help from my Grandparents.  This nearly bankrupted my family, but my Dad being awesome and amazing always made it work.  This type of thing can financially destroy a family.

My Mom passed away in 1991 when I was 16 years old.  She had several brain tumors at her time of death.  I am very grateful for the extra 11 years that we had with her.  It seems humorous to say, but no one could have donated a brain to save her life.  However, if that was possible I know someone would have.  I feel that I have the opportunity to help the Maw children have long and happy lives with both John and Rebecca.  To help give them back that time that dialysis takes from them.  To help give John back his energy and so that he can even eat pizza again, of all things.  To help give them back their Dad the way I wish someone could give me back my Mom.

Going forward I am not fearful, but excited.   I think I have always known throughout this process that I would match and this would work out.  I am meant to do this.  Cheesy I know, but it is how I feel.  I am thankful for my much supported husband, family and friends.  You are all the best!!!!

So on Tuesday Billy the Kidney will get a reprieve from diet coke and go to a more aspartame free home.  He is trading up.  Billy will be leaving behind my right kidney, The Sundance Kidney.  She is left to fend for herself, but they both will be stronger and more productive than ever before!

Billy the Kidney’s Adoption (written 5 days post op still on mild pain killers)

I thought many of you would like to read what I remember about the experience.

Monday night:  Did the bowl prep so that everything would be spanking fresh for the surgery.

Tuesday (Sept 6, 2011):  Arrived at IMC Same Day Surgery at 5:15 am and got all signed in.  John and Rebecca arrived shortly after.  Around 6:30 they called me back to the pre-op area.  John and Rebecca met us in the prep room and we shot the breeze for a couple of hours.  The surgery was postponed for two hours because of an emergency surgery at another hospital.  Then Dr. Chen, the plastic surgeon, came in and did her markings.  At about 8:30 they wheeled me to the operating room, while they were putting me on the elevator John ran up to say good bye and give me hug.  When I arrived in the OR, I learned that the anesthesiologist went to high school with my Dad.  Don’t ask how this came up, it was very convoluted.  I was happy to hear the physician’s assistant say, “Hey the A team is in here”.  They showed me the door that Billy would be exiting through for his adoption in the OR next door.  They put the mask on my face….

This is what I have been told took place.  Rebecca, Rebecca’s mom, Rebecca’s sister, John’s brother, John’s parents, Ali, my Dad and Eric waited and received updates throughout the day.  Everything went very smoothly.  Billy worked so well for John that before they could hook the ureter up to John’s bladder it fire-hosed the physician’s assistant with urine.  Way to go Billy!  Eric told me that he will never forget the moment that they came in and gave Rebecca and John’s family the good news.

When the plastic surgeon arrived my belly button was missing.  This was recounted to me while I was on a lot of drugs and I was trying to figure out how you lose a belly button.  Do you just set it down some place and lose track of it?  What really happened was that the kidney surgeon had to cut through the belly button.  No worries.  I will not be a freak.  The plastic surgeon has made me a fake belly button with a skin graft.  We will know next week how good it looks.  I believe I was out for about six hours.  Not sure how long John was out.

I woke up in the recovery room, which John has described a gymnasium full of moaning people.  I have the impression that John had been there awhile before I came in.  All I remember immediately was that I was in a lot of pain.  They gave me fentanyl.  Thank you fentanyl.   The nurses said someone really wanted to see me.  They wheeled John over and we held hands for quite some time.  It was a very touching moment.  I wish Eric and Rebecca could have been there to share that with us.  They then took John up to the transplant recovery floor and I was wheeled up about 15 minutes later.  My family visited me during this time, but I do not remember much.  I do remember a very nice conversation with Rebecca.  Around 10:00 pm I went on my first walk and felt great.  They mentioned that I may be able to go by Thursday.

Wednesday morning:  I woke up feeling pretty good and went on a walk with John.  We also had many visitors.  Wednesday night I was relying pretty heavy on the pain pump.  I decided that I wanted to get my digestive system working so I started to wean myself off of it.  Still not sure if this was the best idea.  That night my body realized what it had been through.  John also describes this as his most difficult time.  I got very little “real” sleep.

Thursday I was a mess.  I had nausea and headaches.  I would dry heave and it would make my body ache.  Dr. Chen came to see me and straightened everything out.  She save me an anti nausea drug and I slept for six hours.  Thank you Kim Mallas for taking care of me when I woke up during this crazy sleep.  She took me to the bathroom and made me a pillow nest to sleep in.  When I finally woke up I felt 1000 times better.  Things had really turned around.  I slept most of the next two days, but I was out of pain.

Saturday:  I woke up feeling good.  I even showered myself for the first time since Tuesday.  It was my day to be emotional.  I visited John and Rebecca and let them know how special I felt to be part of this.  I really do feel like they are my family now.  John made it out of the hospital a couple of hours ahead of me.  Always so competitive John.

Sunday- I stopped taking the pain killers and am sticking to Tylonol.  Feeling good and even took my first walk around the block with the walker.

I want to thank everyone for visiting, well wishes on Facebook, dinners and prayers.  All of you have helped to make this an amazing experience and something that will define my life.  Eric and Rebecca, thank you holding down the fort and for taking care of us. Krissie, thank you for visiting me so often during my stay. There is still recovery ahead but the worst is behind us.  John came home with a lot of medications and I emphasize “A LOT”.   I came home with gross drainage tubes, a belly button “plug” and a walker.  On an upside, John and I both got a free t-shirt. 😉

Love you all.  – Tori