stacyNeedsAKidney

“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!!

Becoming A Donor

I am in need of a hero. I need a kidney transplant and I pray that someone reading this can help. Please share my website, StacyNeedsAKidney.com. Follow me on Facebook at StacyNeedsAKidney. Please help me find my hero.

I have provided some resourse to help with the education of organ donation.

https://www.tgh.org/services/transplant

https://www.kidney.org/transplantation

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!!

Where Do I Begin

I have started this entry a dozen times.  I keep deleting what I write because words escape me right now.  I have so much I want to say but don’t know how to organize my thoughts.  I am scared and I am anxious and I am angry and I am confused.  How is something like this happening during our lifetime?  I walk outside and the neighborhood is a ghost town.  In the distance I see people walking two-by-two. 

I sit in the house.  I don’t go anywhere because my immune system is compromised.   I keep checking my temperature and it varies from 99.9 to 99.2 . The doctors  say it is from the transfusion I recently had but  I fear that I will have a fever and not be able to get dialysis.  

So, I try to occupy my time.  How about a puzzle?  I started it three days ago and finally finished it.  I am puzzle number two and our neighbor, Debbie,  just dropped off four more.     A walk?  Sure,  a walk will do me some good.  Sit on the lanai?  Yes, its peaceful out there.  I can read my book, “Finding God”.  A little ironic for the times.  

Today, my sister Julie came over with Kiley.  We were only allowed to be outside.  Julie did not want to enter the house just to be safe.  We found an outside scavenger hunt that Kiley and  I could do.  That took us about an hour and then we went out back to the lanai and we took turns reading her book.  It was definitely lighter than my choice in genre.  Mom and Dad wake up and we have breakfast outside.  Yes, scavenger hunt, walk, and story time all before noon.

Now a few days have passed and I have not posted this entry.  I didn’t want to be a Negative Nellie but things just continue to suck.  My Mom’s cousin passed away this week and we also lost a very dear friend.  Neither deaths were due to the Coronavirus but that is neither here nor there….we still lost them.  I can’t stop thinking about all of the celebrations and family events that have been held in my lifetime.  Things used to seem so easy, no worries at all.  WOW, have things changed.  

This pandemic is so messed up,  I have a hard time wrapping my head around it.  I continue to go to dialysis every other day but the thought of a transplant seems so distant right now.  It seems so unimportant to me.  I barely think about it.  What I do think about are the kidney patients who received the call a few weeks ago that a kidney was available and then they were sent home due to the virus.  I hate that!  

This virus is so much larger than any of us and it scares me.  I think about my friends and family in New York and other parts of the country and find myself reaching out to them to make sure they are safe.  I saw a post the other day on Facebook that really hit me.  My friend Jen wrote about looking for the little things amongst this chaos.  So I try to follow her advice…. Dad was able to put two pieces of the puzzle together and then walked away. It was too much for him.  Mom finding something to clean or fix around the house every day so far. And then, when she finally sits down on the couch I find myself watching her as she closes her eyes to rest.   I find myself just looking at them a lot.  Watching Dad make shrimp salad.  Thankful they are here. 

I am grateful for the memes about homeschooling and the posts about appreciating teachers.  I am grateful for all of the people risking their lives to help others.  I think about my friend Rachel and pray she stays safe as she works the front lines in the hospital.  I appreciate my favorite children’s author, Patricia Polacco and all the other authors and celebrities who post on Facebook.  I appreciate you for taking the time to read my blog.  Please leave a message this time.  Let me know you are out there and that you are ok.  Tell me something  good that you have found in all of this chaos.  I would love to hear from you!!  

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.

What it Means to Really Need TP

Back on September 10, 2012, I was given augmentin for a cold. Within two weeks I had extreme diarrhea so I called the prescribing doctor and was told to go to the emergency room that I may possibly be in Acute Renal Failure.  I headed down to the ER where I continued to wait for hours.  I will never forget that day, the ER was over-crowded and I was given a gurney in the hallway.  I saw more than I needed to on that day.  No one should ever witness someone dying and being removed from the ER or drunk people abusing the hospital staff.  I am guessing this is one reason they have rooms in the ER.  Hours later I was sent home with another antibiotic but when I opened the bag and read the side effects it stated, “May cause diarrhea.”  There was no way that I was about to take this medication so I called my doctor in the morning to see what she recommended and she asked me to come into the office to have my poop tested.  WHAT??   I have had many urine cultures done in my time but never had my poop tested.  Never did I imagine this would become routine either.

A few days later I received a phone call from the doctors office stating that I had C-Diff.  I have what?

Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), also known as Clostridioides difficile and often referred to as C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon.   

For over a year I suffered from this C-Diff.   I was in the bathroom EVERY SINGLE TIME I ate or drank. I had accidents more times than I can count. I was put on dialysis because I could not have my living donor transplant. I took pills and syrups, I had a pic-line in my arm and was giving myself medication.  I had 2 fecal transplants…Not one, but two!  The one that finally took was on May 28, 2013.  

And so I share this story tonight after being on dialysis for four hours today listening to the news about people hoarding toilet paper.  According to the CDC, The following symptoms may appear 2-14 days after exposure: Fever, Cough, Shortness of breath.

WHY ARE PEOPLE BINGE-BUYING TOILET PAPER?  How about thermometers? Cough drops? Cough Syrup?  PLEASE, go easy on toilet paper for those out there dealing with diseases that cause diarrhea!!  

A Mother Is Your First Friend, Your Best Friend. Your Forever Friend.

Not sure why we were laughing, but something had us hysterical!!

(This entry is a long one but Mom deserves it)

I woke up this morning feeling very emotional.  I am not too surprised, I am always emotional these days.  Today was different though, my emotions were about my mom.  Today is her birthday and so I thought I would dedicate this entry to her.

Growing up I was a pretty quiet child.  I didn’t cause too many issues.  I didn’t get in trouble in school, I had good friends and tried to make my parents proud.  I grew up in a loving home and my house was the hang-out house.  My friends were always over and many times you would catch them sitting around the kitchen table talking with my mom. 

So, as I sit here and rehash my past in my mind all I can think of are the times when my mom was there for me… Marriages, Divorces (yes plural), packing and moving more times then I care to discuss.

After my first divorce, I moved in with my parents. I drove down to their house one day and literally could not step foot out of their house for weeks.  I was experiencing my first bout of anxiety and none of us knew how to handle it.  I could not eat, I physically could not put a grain of rice in my mouth.  I remember Dr. Bernstein calling and threatening to put me in the hospital. I would try to drink an Ensure a day and even that was impossible.  I barely showered and my clothes began to fall off.  I was afraid of sleeping.  My mom would stay up with me until all hours of the night.  I would start to fade on the couch and she would tell me to go to sleep but when I would tell her I was awake she would continue to sit with me.  I was so afraid of everything and she was always there.  I would finally go to my room and sleep with the light on.  I would wake up in the morning dry heaving and she would wake up and start her day just being there for me.  

Those months were the scariest of my life.  I lost who I was and did not know how to find my way back.  I don’t think I did for many, many years. 

And so began my journey with kidney disease.  Mom was at every doctor appointment, every test, sitting and waiting for results with me.  You name it, she was there.

I remember certain conversations like they were yesterday.  The realization that I would never have the opportunity to have my own children was probably the hardest pill to swallow.  I remember walking outside of Congregation Beth Am with her and my niece, Kiley, who was a baby and we had been trying to get her to sleep.  I think that was the first time I actually had clarity about God’s plan.  I was not well enough to raise my own children.  It wouldn’t be fair to me or to them.  It suddenly became clear and I was okay with that.  Mom just listened, as she continues to do so well.  There was nothing she could say to make me feel better and she knew that.  All I needed was her presence.  

When I had my transplant in August of 2013 mom basically moved into my townhouse with me.  I was living in Wesley Chapel at the time so yes, she picked up her entire life and moved across the state for me.  She helped me through my surgery and was there as I tried to rebuild my life after another failed marriage.  

Fast forward to recent years.  I have been back and forth between Lake Worth and Tampa trying to figure out where I belong. I am still not sure, but now I reside on the East Coast of Florida.  I do not plan on moving far anytime soon.  There is something to be said about being home.  Mom continues to go to every single appointment with me.  She is at very surgery, every procedure and is constantly rallying behind me.  I know that I do not always say it or show it but I am blessed!!

My mother has listened to me talk about school, students, parents, men, dates, doctors, procedures… 

God knows we don’t always agree but man, does that women have my back.

Happy Birthday Mom!!

The Original Letter to Family

I was fiddling around on Facebook the other day and I came across the original letter I wrote when I first learned I would need a transplant many years back. I decided to post it with an update

July 2021

Many of you received an email back in 2007 stating that I had suffered from kidney disease since childhood. Fortunately, I was able to maintain function with medication for many years.

 When I moved to Florida I found a wonderful nephrologists  at The Cleveland Clinic to continue monitoring my kidney function. I was advised that given my numbers, either a transplant or dialysis would be necessary within 1-3 years and in my case, the choice between dialysis and a transplant were based on healthy lifestyle and quality of life.  

 Plan A was a transplant, which would allow me to continue teaching and maintain a somewhat normal quality of life. Plan B would be dialysis, which would completely change my life due to treatments 3-5 times a week for 3-5 hours per session.  

While I had passed the 1-3 year mark my doctors projected, my kidneys had finally had enough and I needed to find a living donor as soon as possible.    

Thanksgiving of 2012 Lee , my brother-in-law, and I announced the news that he was a match.  All was right with the world!!!

Thanksgiving Day 2012

As luck would have it, in September of 2012 I contracted C-Diff (Clostridioides difficile is a bacterium that causes diarrhea and colitis (an inflammation of the colon) and doctors would not transplant me until I was cleared by an infectious disease doctor.  For almost a year I was put on every single medication created to cure C-Diff; pills, liquid antibiotics , pic-lines, and fecal transplants.  Yes, Fecal transplants. Two to be exact.  

Tampa doctors didn’t know what to do with me so I headed to the Mayo Clininc.  Mind you, by this point my kidney function had reached below 15%, therefore, I needed to get a fistula and start dialysis.  

The Mayo Clininc told us to try The Cleveland Clinic where we met a remarkable doctor who sat and listened to my entire sob story and then wholeheartedly preceded to tell us that the FDA no longer allowed medical professionals to do fecal transplants.  

SERIOUSLY?   I could not catch a break!  I can actually remember sitting there dumbfounded with tears rolling down my face.  My mom looked at me, helpless and all  I could do was stare back at her.  

As we sat in disbelief, anger, sadness, until the doctor finally took pity on us and decided to fight for me.  If we could get the FDA to approve my procedure, she would perform it.  

With calls to the FDA we were able to get it approved and I finally had a successful fecal transplant in May of 2012.

After almost a year on dialysis, this speed bump was cleared and on August 1, 2013 I received my new kidney.  

Attachment_1.jpeg
MY HERO

Smooth sailing, right?  Please!! I rejected 5 days after surgery and went back into the hospital for about a week.  The doctors blasted my immune system with plasmapherisis so that I would not reject.  Thank goodness they were able to save the kidney and so started my war with prednisone.  

Prednisone SUCKS!!!

During the summer of 2018, I woke with a fever and wasn’t feeling well so I went to the emergency room. I was admitted and tests were being ordered. Based on a biopsy, I was rejecting the kidney all over again.  On July 5, 2018 I was driven to Tampa General Hospital by ambulance and didn’t return home until July 18th.   I was an outpatient enduring plasmapheresis, IVIG and Rotuxin treatments every other day.  Unfortunately, I was losing the kidney.

March 2019, I began dialysis again and 7 surgeries later I am here looking for another hero.

This letter is my effort to spread the word, again, that I am seeking a living donor who might be a potential match. 

 If you are interested in more information about how you can help, please contact Tampa General Hospital at 813-844-5669 or livingkidneydonor@tgh.org. All communications  are completely confidential.

A Prayer Is A Prayer

I am often asked by total strangers if it is ok for them to pray for me.  My response is always the same; I am appreciative of any and all prayers.  I have been part of prayer circles in school cafeterias, the local jewelry store, on sidewalks, in temples, and churches.  I have been told that people are praying for me all over the world.  Today, I was touched when over 50 Hernando County teachers said a prayer for me.

I spent my entire life going to Hebrew school.  I grew up on Jewish values.  I did what was expected of me; I went to college and married a nice jewish guy.  Or so I thought… 

So, as I got older and life happened I started to question my faith and I wondered where God was in my life.  I began to turn towards people I had lost, my grandfather, in particular. 

I spoke to him and looked to him for help and guidance.  I look in my rearview mirror for Ellen and confide in her as if she was there, listening. I continue to do this now but I have also allowed God back in.  I am not sure what role he plays yet because I am constantly seeking the wisdom to figure out what my purpose is. 

I do look towards God for that answer and so no matter who or what we pray to I will accept any prayers to help guide me through this life.

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.