Doing the Hard Things

Waiting.  Waiting to receive that phone call from the Transplant Team can be overwhelming. We were on high alert last week.

There are multiple ways to receive an organ donation for transplant.  It usually starts with being placed on the Active List for donation.  You are immediately told it’s a 3-5 year wait for a cadaver kidney.   We’re 20 months into that List.

There is also the Living Donor process.  This is where someone donates one of their kidneys to you.  We’ve had two folks go through the process and not quite cross the finish line for donation.  We have another potential Living Donor beginning the process.  We’d appreciate you praying for her and for us during this time of waiting.  When a donor is approved, if they aren’t a match for you, it’s always possible for a ‘paired listing’ where your Living Donor donates to someone else and their Living Donor donates to you.   Allegheny Health Network was part of the longest chain of kidney transplants ever constructed – 34 kidneys donated and 34 received.

Another option is ‘direct donation’ where an organ is directed to a certain person.  I’m now sure this is the roughest/toughest, hardest/ugliest thing.  It’s when someone is going to be with Jesus very soon.  The family has made the decision to donate the organs.  Someone speaks up and says – I know you are grieving, and I know you’ve made the decision to donate, could we honor your loved one’s legacy and receive their kidney?

It’s the hardest thing I’ve ever done.  I made that phone call to a grieving relative of someone last week.  I’m hoping it didn’t come across as morbid.   I hope it came through as being done out of love and hopefulness.  I was a mess.  In the end, it was not to be.    So, we wait.  Each day is one day closer to a new kidney for MyFishGuy.

So, while we wait…

Year End donations?  Do you contribute to a charity at the end of each year?  We’d be honored to receive a donation from you.  Please consider helping MyFishGuy and others like him through a year-end donation to National Foundation for Transplants.

Keep Christ in Christmas magnets on sale now!  We are selling these sturdy magnets for your car or refrigerator.  These make great stocking stuffers and grab bag gifts. Only $5 each.  Buy 4, Get 1 Free.  Contact us now for Christmas delivery.

Got your 2018 Calendar handy?  We’ve booked the 2018 Purse Bash & Wine Raffle location.  Saturday, September 22…with seating for over 400! Mark your calendar now so that you don’t miss out on this fabulous Event!

Are you registered to be an organ donor?  Play It Forward Pittsburgh is conducting an organ donor awareness and registration drive.  Part of their mission is to get every eligible Pittsburgh resident registered as an organ donor.  You can sign up here.

Thanks for your financial support during 2017.  Your donations make a difference each and every day.  But most of all, thank you for your prayers.  We could not do the hard things without them.

Advertisements
Posted in Uncategorized | Leave a comment

Living Donors

We need a Living Donor. Our options have narrowed this week and now we begin the search for a kidney via social media. Who would have ever thought such a thing?

Why be a Living Donor?  Your selfless gift means a renewed LIFE to someone else. A donated kidney can add 15 to 20 years to som0514161607c_resizedeone’s life. It means the end of someone being connected to a machine for 14 hours a day. That someone is the Love of my Life – MyFishGuy. We need your help!

Who can donate?  According to the National Kidney Foundation, to donate a kidney, you must be in good physical and mental health. As a general rule, you should be 18 years or older. You must also have normal kidney function. There are some medical conditions that could prevent you from being a living donor. These include having uncontrolled high blood pressure, diabetes, cancer, HIV, hepatitis, or acute infections.

Our next steps?  MyFishGuy is on the active Transplant List for Allegheny Health Network.  We are now considering adding other lists.  He can only be on one list per region.   Look out Ohio – here we come! We are also calling a stranger in eastern PA that a dear friend met while traveling on Amtrak to New York.  He’s part of a philanthropic charity for matching organ donors with recipients.  Who knew about this?

Ready to find out more information?  Call or text or send me a message.  The phone interview happens first with our Transplant Coordinator.

Are you a registered as an organ donor Please take the time to do so.  It can save someone’s life when your time on earth is complete.

Your generous donation to our transplant medical expense fund via National Foundation for Transplants is always appreciated!

We will have a table set up at the Christian Community Church flea market on June 30/July 1.  Stop by for great bargains!  We’d love to chat with you.

Tickets foBashr the Purse Bash are on sale now!  We’d sure appreciate your help with ticket sales.  We know it’s 3 months away, but we want to make sure every gal gets a ticket and saves the date NOW!  This will not be like ANY other Purse Bash you have attended.  This is shaping up to be one wild & crazy event!

 

 

Posted in Uncategorized | 1 Comment

Waiting

Change takes time and dedication.   

 Waiting is our least favorite activity.  Heading out to a restaurant?  Call ahead seating can solve this wait. We do our best to schedule doctor’s appointments early morning or late afternoon which usually means less chance of waiting.    But waiting for this kidney transplant is teaching me a lesson.

 When MyFishGuy went onto the active Transplant List last April, he was so very sick.  He couldn’t walk unless he held onto something or someone.  He had lost muscle strength and use of his left arm and leg.  His blood pressure showed numbers I have never imagined on top and bottom of that pesky monitor.  His mind and memory were clouded by the build-up of toxin levels in his body from the failure of the kidneys.  His body was literally poisoning itself.  Before the month-long stay in the hospital, I hadn’t expected him to live to see his birthday in May. 

 Once MyFishGuy started on dialysis, things changed. 

 Change takes time and dedication.  In case you don’t know anything about dialysis, here’s what you need to know…it sucks.  Literally and figuratively.  At-home dialysis takes over your life and your home.  We have over 60 large and heavy boxes of supplies delivered each month.  Exceptional care and cleaning is needed around the dialysis machine area which sits beside our bed.  MyFishGuy starts his dialysis routine each day by 4:00 pm and physically connects to the machine no later than 8:00 pm.  This enables him to disconnect by 7:30 or 8:00 the next morning.  He is connected via a tube and can only roam 20 feet from this life-sustaining machine.  Over ten 2 liter bottles of fluid travel into and out of his body every night – taking over and doing the job of his kidneys. We set up the Man Cave (which I affectionately now call the Med Cave) so that we can sit together and watch television in the evenings. We are grateful that the dialysis treatment is working to keep him alive and functioning at a better level.  His doctors and nurses have made all the difference. 

 Change takes time and dedication.  The fabulous doctors and staff at Balance for Wellness worked diligently to help him build up the muscles in his arm and shoulder to regain the use of his arm.  Next, they worked on his balance and leg strength.  When MyFishGuy began physical therapy, I had to walk alongside him to steady his trek up the stairs, opening the doors for him.  Now, I barely slow down the car and he’s jumping out ready to head into the facility.  If you think a year of physical therapy is a long time, come talk to me as I believe they continue to work miracles.  MyFishGuy is a work in progress and he’s headed in the right direction!

 Change takes time and dedication.  Why all these changes?  I’m believing each of the changes that occurred over the last year have a purpose. Each obstacle we’ve faced has given us the opportunity to give all the glory to God.  Every person that asks me how I know that MyFishGuy will be healed has received the same answer.  Healing comes one of three ways – immediately, eventually, or ultimately in heaven.  We trust that God’s plan and his perfect timing are for his glory alone. 

 MyFishGuy is loving life and feeling so much better.  He brought out his fishing poles this week.  He’s thinking about driving again.  He wants to make plans, go places and do things.  Things that would not have been possible without the time and dedication of the last year. 

Change takes time and dedication.  Why is he still waiting for this kidney transplant?  We don’t know.  Maybe so that his body could be healed in some many other distinct ways? We know that every day that goes by, brings us one day closer to the new life that a transplanted kidney will bring to MyFishGuy.

 Change takes time and dedication.  April is National Donate Life Month.  Are you registered as an organ donor?  Does your family know?  Please let your loved ones know your intentions to give life to another when the time comes.  None of us get out of here alive.  As the bumper sticker says:  Don’t take your organs to heaven…heaven knows we need them here.  So, please, Share Your Spare!

Donate here…

 

Posted in Uncategorized | 1 Comment

I have a Caterer?

 

I have a Caterer.  These might just be the strangest words I’ve ever typed.  Why is this so strange?  I love to cook.  Feeding folks with comfort food is my love language.  Have you ever been to my home?  There is no doubt that you were fed no matter when you arrived or how long you stayed.  Did you bring kids with you?  They left with a snack bag for the car ride home.  Just in case you were taking the long way home. 

 

I have a Caterer.  It’s my favorite local deli where comfort food abounds.  You need a caterer for an outdoor wedding?  Call these folks.  Taking 100 women to an overnight conference in Pittsburgh?  They’ll do Friday night’s dinner as well as lunch on Saturday.  Breakfast or lunch for two?  Stop in and eat.  And take home a goodie bag for later.  Hosting a luncheon?  No problem.  Friends over for dinner?  Chicken Parm to go. 

 

I have a Caterer.  Makes me think about that scene from the movie First Wives Club.  Shelley (Sara Jessica Parker) has been invited to lunch with the scene-stealing Gunilla Garson Goldberg (Maggie Smith). Dangling that business card back and forth with Shelley almost begging for it! It was for a to-die for designer, but you get the picture.  It’s a must if you want to be somebody!

 

 I don’t want to be somebody.  I already am somebody!  I’m choosing to spend my time and energy doing the things that need to be done at this stage in my life.  Loving MyFishGuy and raising funds through National Foundation for TransplantsAs we get closer and closer to MyFishGuy receiving a kidney transplant, I’m focused in the proper place.  So, if you are coming over?  I’ll still feed you.  It’s just likely that I will have called my Caterer first.  Give them a call. Sciullo’s 910 Deli  – ask for Mark.  Tell him MrsFishGuy sent you! 

 

 

 

 

 

 

 

Posted in Uncategorized | Tagged , , , , , | Leave a comment

A Benefit Concert?

Of course!  Music is MyFishGuy’s love language.  He’s always singing some random lyrics from a song I’ve never heard before.  Feeling happy?  Music.  Feeling sad?  Music.  In the car?  Music.  Working on a project?  Music.  Placido Domingo to Zac Brown Band.  Gaither to Third Day.  So it is only natural that Music plays a part in our FUNraising events.

We are so excited to host Randy Stonehill – 2010 Christian Music Hall of Fame Inductee – at a concert to benefit National Foundation for Transplants to assist with Bill’s transplant expenses.

The concert is set for Saturday, January 28, 2017, at Bakerstown United Methodist Church in Gibsonia.  Three levels of tickets are available.  The VIP Treatment ticket is exactly what you would expect from MrsFishGuy.  If you have traveled with me to one of the many events over the past 10 years, you know that VIP is always over the top and filled with surprises!

VIP starts at 4:30 pm with reserved parking, Meet & Greet with Randy & Leslie Stonehill, Dinner and then preferred seating for the Concert.  Pre-show Dinner Tickets include Dinner and a General Admission Ticket. Dinner?  Yes, a delicious dinner served in Fellowship Hall before the Concert.

Tickets are available from iTickets or email mrsfishguy@gmail.com

Purchase your tickets now – what a great Christmas present for someone you love!

 

Posted in TeamFishGuy | Tagged , , , , , , , , , | Leave a comment

TeamFishGuy? MrsFishGuy?

TeamFishGuy?  MyFishGuy?  MrsFishGuy?

What the heck is that all about?  Who is MyFishGuy and the Mrs?

Let’s begin at the beginning – my husband has always had a fish tank.  He was referred to as ‘the fish guy’ in the fish department at the pet store.  Got a fish question?  Go ask ‘the fish guy’ they would say.  What started as a hobby quickly turned into a career.  He set up and maintained aquariums for people and businesses in the New England area as The FishGuy.

In 2004, when he relocated to Pittsburgh to marry me, that name was already taken in the PA business registry.  So, he changed it to MyFishGuy. I became MrsFishGuy on December 11, 2004, at 6:00 in the evening.  The most beautiful day of my life – but that’s a story for another day.

MyFishGuy crafted amazing aquariums with care and concern for each one.  His client list was as diverse as the tanks he created.  From a top doctor to a rough around the edges bar owner.  From a work-at-home Mom to a rarely home business owner.

Fish, he often said, rarely talked back to you.  If they do, the advice given to many has been – swim down…go find Nemo!  The first rule of fish:  Fish die.  He’d always caution folks not to name their fish.  Because of Rule #1.  Fish don’t live as long as kids would like.  Fish live too long according to a parent whose child brought home that goldfish from the summer carnival.

When MyFishGuy got sick in 2014, driving became very difficult. He had to retire  his Fish business because he just couldn’t ask folks to bring their tanks to him.  It’s a good thing he still has two tanks at home and one at my office.

One of the first things the Transplant Team told us to do was to start fundraising for MyFishGuy’s future kidney transplant.  We’d need $35,000 to cover expenses for the first year after transplant.  Seriously?  Okay, then.  We need a team to do this and TeamFishGuy was born.  This Team is filled with relatives near and far.  Old friends and newly made friends.  All joining together to support TeamFishGuy.  We are so blessed.

TeamFishGuy transplant fund

Posted in Uncategorized | Tagged , , , , , , , , | Leave a comment

TeamFishGuy Benefit

It’s hard to believe that the Fall Craft & Vendor Show is now only two weeks away! Saturday, October 15

9 am to 2 pm at

Hampton Fire Department #1

Route 8 & Duncan Avenue in Allison Park.

We have over 20 crafters and vendors including the new hot LuLaRoe, Amway, Pampered Chef, Pink Zebra, StickmanSticks, Jewelry by Janine, Garden Jazalles, Djazz Designs, LilSumthing, Meredith’s Handmade Gifts & On Creative Wings.  Plus many others!

  • Donny B’s BBQ Food Truck will be there with amazing BBQ and more.
  • Pumpkins from Harvest Valley Farms
  • Jefferson Glass Company – Custom Glass Art
  • Kids activities
  • Bake Sale
  • Raffles

Come out to support TeamFishGuy and National Foundation for Transplants.

 

 

Posted in craft show, fall, Uncategorized | Tagged , , , , , , | Leave a comment