“This is Fifty”

I have seen this quote on FaceBook quite often lately, accompanied by a picture of a person looking vibrant, healthy and beautiful. And I usually say to myself, “WOW, she looks vibrant and healthy and beautiful for 50”. Then I remind myself that MY Fifty is around the corner. How did this happen? Where did 50 years go? How are my second graders getting engaged or married or better yet, having babies of their own. I surely haven’t aged, so how did 50 sneak up on me?

The truth of the matter is, I don’t think I feel fifty, but I do know where the years went. I know that I lived them. I have memories of how my life was and of all of my hopes and dreams for a life filled with laughter and friends and family. I had dreams of traveling the world.

So, where did the years go? They went into teaching hundreds of children. For more than 18 years I lived for teaching. I made it my world. Life revolved around my students and what I could do to make life better for them in learning situations but also life lessons. I don’t regret the passion and drive I had when I was teaching, I just wish I had taken more time for me. More time with family and friends. I think about occasions I missed because I would not take a day off, or opportunities that were presented to me that I passed up. Again, no regrets…I am where I am today because this is where I belong.

Where did the time go? It went to so many unbelievable years working at camp and participating in CNYFTY. Probably the best years of my life. I met the most amazing group of friends and truly felt like I was living my best life; teaching school and working camp!! Who could ask for anything better?

Where did the time go? This is when everything seems to get blurry. You see, my thirties seemed to have escaped my memory. Not the teaching aspect, but the social aspect. Did I become a recluse? Was it anxiety and depression that created a fear in me that stopped me from living my best life? Was it being told over and over again that I am not enough? Was it fear of rejection or of not being accepted? Whatever it was, I made it through to my forties. That’s when things really got exciting. On August 1, 2013 I received a kidney from my brother-in-law, Lee. He gave me a second chance at life and I was going to get back in the game and use this opportunity to live my best life, again.

Well, the Universe had other plans; My body started rejecting my new kidney and as of March 2019, I had to go back on dialysis and continue to go 3 days a week for 4 hours per session. So, the hunt for a kidney begins once again. I am on transplant lists and am constantly in search of a living donor. “How do you get through all of this?” A question I get quite often which has a very simple answer. I either get through it or I die and I am not ready to leave this earth.

So, you see, THIS is MY 50!! I have learned to treasure moments with people, laugh more often and louder than ever before, help others when I am able, and try to live my best life, again. Fifty is MY time and I am going to make the most of it. This is just the beginning!!

I Still Need A Kidney

I Still Need A Kidney

During the chaos of this pandemic, I still need a kidney.  The fact is I still need someone to help me live a quality life.  I need someone to become my hero.  

This virus has made me appreciate life, nature, family, and friends.  I want to be around to enjoy all of it. My biggest fear is that I won’t get to see my niece grow up.  I fear that if I die she will forget me,  She will forget about the pumpkins we painted for Halloween or the jewelry boxes we made out of popsicle sticks.  The dance parties in my car blasting Trolls music with the sunroof open.  Watching her open her LOLs.  All of the Face-timing we have done over the years, even before she could talk.  I am afraid she will forget that she is the most important person in my life.  Since the moment she was born I have had this overwhelming feeling to protect her.  I am honored to be her Godmother and want to look over her for so many years to come and in order to do that, I need someone to help me.  

I want to become an active part of my community again.  I taught for 18 years and have had so many kiddos touch my life.  I have students who were in my fifth-grade class who, years later are married and others who have had babies.  Students who continue their educations through college and grad school.  I have a student who constantly writes on Facebook and now Kiana teaches me life lessons through her writing when it used to be my job to teach her.  

I think of another student all the time.  This student taught me more about understanding and compassion than any other person in my life.  Austin is one of those guys that says it like it is.  He struggled socially and classmates used to tell me he was a “bad” kid.  His mom wanted to homeschool him for his final year of elementary school and I remember standing in the parking lot with her basically begging to give me a chance to teach him.  She reluctantly gave in and that summer I bought books and read as much as I could about Aspergers.  I met with Austin and his mom, Brenda before school intending to establish a relationship with him.   For me, there was no doubt that I wanted this young man to be a student in my class.  

Not only did Austin teach me, but he also taught every child in my class that year.  You see,  once the students learned about Aspergers and that Austin wasn’t a “bad” kid they appreciated his differences and everyone else’s for that matter.  It’s funny actually, they realized he was brilliant and often asked him for help.   I will never forget a story that Brenda told me.  It was the evening of the Dwyer Awards, an annual program developed and supported by the Economic Council to honor outstanding educators from public and private schools in Palm Beach County.  I was nominated and made it to the top five.  Many of my students and their families attended the ceremony with me.  At the end of the night on their drive home, Brenda said something like, “ I am so mad that Stacy did not win.”  And Austins’ response was something like, “Mom, are you kidding? She was the top five.  She already won.”  I carry that sentiment throughout my life and have tried to pass it on to so many others.  Winning does not always mean the first place.  I have won many battles in my life and there was never a first place ribbon and that is ok.  One more note about Austin.  He never had birthday parties.  In fifth grade, Brenda decided she would try and every person in my class was given an invitation, including me.  Of course, I couldn’t wait.   The day came and of course, I was early and Brenda and I waited on pins and needles for that doorbell to ring.  Finally, it did, and it continued to ring until every child from my class walked through the front door.  I remember feeling overwhelmed with love for this special group of kids.  And they were definitely special, they continued to be there for Austin through middle school and high school.  They wouldn’t allow others to bully Austin.  True friendships were built that year.  By the way, I still remember the theme of the party was pirates and it was the best birthday party I ever attended!!

I need to get back out there.  It may not be in a classroom but I need to be a part of supporting people and helping others.  In order to do that I am asking for a hero to step up and save my life.

I recently met someone.  I know, crazy time to meet someone and believe me we have texted more in the last month than I care to admit.  He was there for me through text and phone calls when I was in the hospital for my blood transfusion, He texts me while I am at dialysis and we had the opportunity to meet once, outside of course.  We continue to text every day and call and video chat but I am excited to see where this could possibly go.  For the first time in a long time, I am excited about the future I know I can have.  

You may be reading this and thinking that you are not a candidate to donate a kidney, and that is ok You can still be my hero by sharing my story, sharing my blog, sharing my Facebook page.  I know the more people who read my story the better chance I have of receiving the gift of life.

If you would like to be tested or know someone who may be interested you can contact Tampa General Hospital at 813-844-5669 or livingkidneydonor@tgh.org  Everything is confidential.

To follow me on Facebook search “Stacy Needs A kidney”.

PLEASE let me know you are out there.  PLEASE say hello or leave a message about someone who has touched your life.  I would love to hear your stories!  

A huge shout out to Sheila for always reading my entries before I post them and for always saying a prayer for me!!  I love you dearlady!!

There are Good People in This World

I am trying to wrap my head around The Coronavirus.  I suffer from anxiety so the idea of having to stay at home until further notice freaks me out.  Sunday night I was not feeling well.  I had a hard time catching my breath and I was vomiting.  I did not think it was the virus.  I knew it was kidney related and I needed to go to the ER.  Mom drove, as she always does, but this time she was not allowed to come in with me.  We both understood that these were precautions that were put in place and honestly I think it was harder for her to leave me than it was for me to be there alone. 

After a CT-Scan, chest x-ray, and much bloodwork the doctors decided to admit me overnight because my Hemoglobin was very low.  I was going to get dialysis with a blood transfusion in the hospital on Monday.  The nursing staff and the doctors knew I was auto-immune compromised and they were very mindful when entering my room.  

Mom was allowed to visit from 7am-7pm so she spent most of the day with me.  I went for dialysis at around 6:30 Tuesday night and when I woke up the next morning I felt like a new person.  My Hemoglobin had jumped to 8.7 and I was feeling great.  I went home, caught up on sleep and tried to get back to normal.

But what is normal when the entire world has been infected by a virus.  Numbers keep increasing and I can’t seem to stop watching CNN.  I know this causes more anxiety but I have to stay in the know.

Today, after dialysis I went to Target to pick up medication and a thermometer. I knew I was taking a risk but I wore a mask and we literally went in, got what we needed and checked out.  While at the register I was talking to the cashier about how  difficult it is to get the necessities, like a thermometer and hand sanitizer.  The gentleman standing in line behind us heard my story and immediately pulled a sanitizer out of his pocket and gave it to me.  I told him thanks but I could not do that.  He insisted that I take the bottle.  He told me that he understood my struggles because his wife is a cancer patient.  I was so appreciative and overwhelmed by his generosity in a time where so many people are only looking out for themselves.

I want so badly to be out there volunteering to help others but unfortunately my body says NO!  What I CAN DO is FaceTime with parents and students who may struggle with schoolwork.  

So, I am paying it forward the best I can.  Please contact me if you need help homeschooling your children.  I am a certified teacher K-6, ESE K-12, and Reading K-12.  I would be more than happy to help.

Organ Donation

I never really thought about being an organ donor until I became the person who needed an organ.  The teacher in me is coming out and I feel the need to inform people of the importance this one decision can make.

Over 95,000 U.S. patients are currently waiting for an organ transplant; nearly 4,000 new patients are added to the waiting list each month. 

Here are some facts from kidney.org:

• 37 million American adults have CKD (Chronic Kidney Disease) and millions of others are at increased risk.

• Early detection can help prevent the progression of kidney disease to kidney failure.

• Heart disease is the major cause of death for all people with CKD.

• Glomerular filtration rate (GFR) is the best estimate of kidney function.

• Hypertension causes CKD and CKD causes hypertension.

• Persistent proteinuria (protein in the urine) means CKD is present.

• High risk groups include those with diabetes, hypertension and family history of kidney failure.

• African Americans, Hispanics, Pacific Islanders, American Indians and Seniors are at increased risk.

• Two simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.

The thing with kidney disease is that you never know if you will be affected. I was not diagnosed until I was a teenager, almost in my 20’s. The doctors are not sure what caused my kidney infection, however, from the information they were able to gather, they feel it was from Chronic UTI’s as a child. Why am I sharing this information in a public forum? I want to educate parents of young children. If I could give any advice I would say:

1. Keep ALL your child’s medical records. After a while it is hard to get your hands on that kind of information. (Especially when you need it and you’re 48 years old).

2. If your child suffers from Chronic UTI’s ask the doctor not only to prescribe an antibiotic but to also keep an eye on your child’s kidney function.

Chronic Kidney Disease (CKD)

Collage created using TurboCollage software from http://www.TurboCollage.com

I saw Dr. Jan today and we talked about a plethora of topics… family, love, relationships, death… just to name a few. It amazes me when I think about the number of different thoughts that run through my head at any given time. And I guess that’s why I’m starting this blog because I need to get these thoughts out and maybe they will even help someone else.

Believe it or not today we spoke a lot about other illnesses and My heart goes out to anyone who is dealing with any sort of illness. Not only is it hard on the patient it is hard on the caregivers as well. I can’t imagine what my family goes through. I know they feel helpless.

So, as I sit on Dr. Jan’s couch crying in anger I realize I am annoyed at how much attention other illnesses get as opposed to Kidney Disease. When you walk into a room you can often tell if a person is battling cancer but the truth is, you wouldn’t be able to pick out the person suffering from kidney disease. People see me and tell me how fabulous I look and although I appreciate the compliment, I wish people could see my insides. I have three kidneys now and none of them work. I am dealing with a disease that ultimately could take my life. My left arm has permanent bumps due to the fistula and bruises that come and go depending on how dialysis goes. I wake up dry-heaving and vomiting in the middle of the night so bad that I pop blood vessels under my eyes. I need to make sure to watch my fluid intake, nausea has become a part of my daily existence. These are only the physical side-effects. I haven’t even touched on the mental effects.

I brought this up with Dr. Jan because I feel guilty about the anger I have towards the lack of attention CKD receives. Chronic Kidney Disease (CKD) effects an estimated 37 million people in the U.S. (15% of the adult population; more than 1 in 7 adults) and approximately 90% of those with CKD don’t even know they have it. 1 in 3 American adults (approximately 80 million people) is at risk for CKD.

Currently, there are over 93,000 people on the kidney transplant waiting list. The wait for a deceased donor could be 5 years, and in some states, it is closer to 10 years. Patients are prioritized by how long they’ve been on the waiting list, their blood type, immune system activity and other factors.

I know I still have a voice. I know there has to be a reason that I am enduring this hell. Maybe it is my “job” to blow up social media and talk to people about CKD.

My Story

I decided to start this blog because I needed an outlet for the hundreds of thoughts I have at any given moment. Why go public instead of keeping a personal journal? Because right now I am living a personal hell and thought that maybe, just maybe while getting my thoughts out I could also help someone who is going through difficult times. I am not 100% sure what is going to be written here but I can tell you it’s going to be from my heart. I cannot guarantee that you will agree with my thoughts but please understand the intensity behind my words.

I have Kidney disease. I have dealt with this for most of my life but I found out about 9 years ago that I needed a transplant. That was when Lee, my brother-in-law decided to get tested to see if he was a match. Fortunately he was a perfect match. After a year of dialysis (I could not be transplanted because I had C-Diff) I was finally cleared for my surgery and Lee gave me the gift of life. My body rejected the kidney 5 days after the transplant and I was back in the hospital so that doctors could basically blow up my immune system so that my body would not reject. I was lucky enough to get 6 years added to my life. Unfortunately, My body rejected the kidney and in 2018 I spent the summer living in a hotel across from Tampa General Hospital. I was receiving plasmapheresis every other day in hopes of saving the kidney. It did not work and in March of 2019 I started dialysis again.

After my first transplant failed I didn’t think I could go through asking someone to donate again. I am now listed at Tampa General Hospital and working on Cleveland Clinic. It could be anywhere from 4-6 years before I receive a kidney from the transplant list. Transplant is also more difficult the second time around for me because I have built up antibodies. After speaking with my doctors it was consensus that my best option is to look for a living donor again.

According to kidney.org, “Our immune system naturally forms antibodies as a protective response against bacteria and viruses. In the context of transplantation, antibodies are good when they are ready to attack foreign invaders that can lead to illness, but antibodies can also be ready to attack foreign tissue – such as a new kidney transplant.”

I have 99 out of 100 antibodies. This makes finding a match very difficult. How did I get antibodies? Anti-HLA antibodies are formed by the immune system when you are exposed to proteins that appear similar to tissue types. This most commonly occurs in the setting of previous transplantation, pregnancy, or blood transfusion. Occasionally the cause of anti-HLA antibody formation is not known. Unfortunately once you have anti-HLA antibodies, they do not go away on their own. Antibodies can be difficult to remove from the body, although different treatments have been tried. One of these treatments is plasmapheresis. I underwent six weeks of plasmapheresis last year. Unfortunately it did not work. 

I was never one to really ask for help but recently I find myself doing it more and more. So here it is… I need help finding a donor. I know that this is a lot to ask. But I guess what I’m asking is that if you’re reading my story, please share my story. The more people that read my story the better my chances of receiving a kidney. 

I am finding this entry very hard to write because I don’t want anybody to read it and think that I take this lightly. I know that what I am asking of somebody is huge and I know that there are many things to take into account. Miracles happen every day and I have to believe that my miracle is out there.. 

Here’s the cool thing about transplantation, Someone can choose to donate for me and if they are not a match for me then they will match us with another transplant patient and donor.

If you are interested in learning more you can contact the Cleveland Clinic or Tampa General Hospital and they will give you any information that you need. Everything is confidential. I do not find out if people call to get tested for me until they decide to tell me themselves.

I am excited for what the future holds for me. No matter what comes my way I will continue on this journey. I will continue to do dialysis three days a week for four hours a day and I will continue to blog and hope that someone else out there finds comfort in my words. 

I am so appreciative for all of the support that I continue to receive. 

Again, I am asking that you please share my story and please ask your friends to share my story. Social media is a powerful thing! 

If you would like to be tested or know someone that may be interested you can contact the Cleveland Clinic at ccflorida. donorscreen. org or Tampa General Hospital at 813-844-5669 or livingkidneydonor@tgh.org