Don’t Ask About the Mask – Post Transplant Etiquette – Part One

Although the world is full of suffering,
it is full also of the overcoming of it.
– Helen Keller

 

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Perfect in purple, Angel in the dialysis unit at Tampa General Hospital

 

Background

My niece, Angel, is my sunshine, my inspiration, and one of the smartest and bravest people I know and she is far wiser than her eleven years.  She was born with Vater Association, a group of congenital deformities, among them only one barely working kidney. She had her first major surgery when she was only hours old. From the time she was very little she was on strict dietary restrictions, underwent hundreds of diagnostic tests, several reconstructive and spinal surgeries, long hospitalizations and required a complicated rewp-1458429169699.jpggimen of medicines several times a day.

She began dialysis at age four and was listed for transplant by six.  Angel was on dialysis for eight years when it became medically necessary to move her to the top of the transplant list.  Not too long ago, she underwent a successful kidney transplant and her entire life has changed in ways not many people could imagine.

How things have changed

Angel used to spend at least four hours in the dialysis unit three times a week.  Everything she did revolved around her dialysis schedule and her medical procedures done once an evening at 6:00 pm.  When I asked her how it feels not to have to go to dialysis any more she said it feels “weird and boring.” She finds it hard to fill all that extra time, except for binge watching Netflix. She said food tastes saltier now and she can drink as much as she wants. Her diet is only restricted by raw foods and grapefruits and she is not allowed to eat at buffet restaurants.  She has had chocolate for the first time and found out that she loves peanut butter cups.

Now that she has recovered from the actual transplant surgery, she is feeling much better. She has more energy than she had before and she is looking forward to traveling outside Tampa to amusement parks, fairs and Disney World. She still visits her friends and the nurses in the dialysis unit when she goes to the hospital for labs and for school. Her biggest goal right now is to go to “real school.” She has been going to home-bound school at Tampa General since Kindergarten!wp-1458429212037.jpg

Angel is an inspiration to me every day. She has a bigger heart than anyone I know. In 2010 Angel was a spokesperson for Tampa General Children’s Medical Center for Christmas.

Angel is also past winner of the American Kidney Fund Art Contest and was the was the guest at the Ribbon Cutting Ceremony at the Kidney Walk in Atlanta, GeorgIa in 2012.

Once she recovered from her surgery, the first public gathering she attended was a walk for Colon Cancer at the Al Lopez Park in Tampa.wp-1458448669906.jpg Truly her heart and her love for life  knows no bounds.

When she is out in public and wearing her mask, she wishes no one would ask her any questions.  However, she knows that is not realistic so she has created some helpful hints which you can read about in Part Two.

Looking towards the future

Angel plans to become a doctor in the future.  For now,though, she enjoys watching Grays Anatomy, Super Natural and How I Met Your Mother.  She is busy learning to sew so she can make quilts for the children in the hospital and learning how to play the guitar.  The future is bright and that is no surprise as she remains my only sunshine.

Addendum

Don’t let this article make you believe that this is all a walk in the park. It is a testimonial to Angel’s personality that this all seems so easy. For the second time in as many weeks, Angel again is in Tampa General Hospital, waiting for a sonogram.  Her urine output has been less than expected and she is swollen and a bit uncomfortable. As her mom, Lisa, reminds us, transplant is just another type of treatment, not a cure.

 

 

 

 

 

 

 

1 Comment

  1. Wow , you have done an amazing job describing Angel and her life. Makes me proud that I am part of raising such an amazing child. Transplant is a treatment option. It can be very long term and can go really good but even so there tends to be bumps along the way, just like anything else if you think about it. Thank you for sharing her story. I am pretty sure she loves you right back, you have been one of her biggest supporters. She is quite the character.

    Liked by 1 person

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