ERIC'S JOURNEY FOUNDATION - Eric\'s Blog

A Trip to The New ER Nearby During Covid...

Mon, 08 Mar 2021 05:00:00 GMT

It's been a while since I updated my personal blog. With Covid-19 putting us on complete lock down last year, I really wasn't going out of the house much at all. Many of my doctors appointments were scheduled via teladoc or phone call. I've had a ton of med changes to try different things for different issues that have begun surfacing, but many of them are still being figured out... But none of them had an effect on this trip. It wasn't covid and its not HLH.

I am still not yet sure what exactly happened. But the short version is that I began feeling queasy a few days before March 8th. Overnight I became sicker and sicker. Laying in the bathroom then the bed and trying any position that would make me feel better. I had severe abdominal pains. My temp was around 96 and I couldn't get warm, but I was sweating like it was 105! After several hours of no changes and vomiting water, I knew something wasn't right and had Amanda take me to the new local ER. Luckily it was pretty empty when we got there.

I could barely get from the truck into the door . We were given new masks and temperature checked before heading to the ER department. They wheeled me to a room, took labs and scheduled me for an X-Ray & CT scan to look for obstructions. I got some meds to help with the pain and those didn't work so they tried another and finally it started to become tolerable for a bit. After the CT scan I was able to get some rest while we awaited the results. Amanda said I slept for a good hour. I was so thirsty when I woke up because I hadn't had anything to drink or eat since the night before and it was now after 5! The PA came in and said they didn't find anything and if I was well enough to leave to follow up with my specialists at Temple. It's not the first time i've had an IBS-like issue like this but it was definitely the worst. I really thought I was a goner. I felt like I was dying and the pain was so bad, my heart rate would drop in the 40s. It took over week to feel like I could start to eat anything but rice and chicken.

Now i'm working on scheduling those in between other appointments, work and getting the covid vaccine. Hoping whatever it was stays away for long time, or forever if it wants!

Stay Healthy & Stay Kind
Eric

Eric & his Lab Willow. Willow laid next to Eric to comfort him at home.

Picture of the monitor at the hospital. Eric's heart rate shows 46 beats per minute.

Picture of Eric laying in hospital bed with his mask on in discomfort while nurses hook up monitors.

Picture of Eric curled into a ball to try and find comfort.

Picture of Eric & his wife Amanda. Eric is smiling because the pain is going away enough to go home.

Rutgers Robert Wood Johnson Medical School Disability Awareness Day 2019

Wed, 06 Nov 2019 05:00:00 GMT

Thanks to my buddy Bryan, today I had the opportunity to return to Robert Wood Johnson Medical School at Rutgers University. I was invited back to speak about my diagnosis, inpatient/outpatient experiences and explained the disadvantages and disabilities after HLH treatment and living with Stills Disease. Amanda was able to explain more of the medical aspects of things from when I was sedated.

I was able to teach them some of the long term effects of the diseases and medications that affect my joints, organs and mobility on a daily basis. Some of these occurred because it took a long time to get a diagnosis and start treatment. Stills Disease is often referred to as an invisible illness because on the outside I look quite healthy, but on the inside my body is still attacking itself every day for the past 7.5 years. There is no cure and I have been unable to get to full remission with current available medications.

The students also learned how difficult it can be for patients like me to maintain a full time job while navigating the healthcare system, insurance company, seeing specialists, getting labs, testing and pre-certs just for a few meds to keep me alive. We were able to let them know about my plan to participate in legislative initiatives to reduce pre-authorization times and eliminate the archaic step-therapy protocols.

It was great to see how open the students were to learning about a disability like mine that isn't so visible.

Stanley & Daphne Nkosi Foundation Recognize Eric's Journey Efforts on Foundation Facebook Page

Fri, 29 Mar 2019 18:20:38 GMT

Our 2019 Clay Shoot T-Shirt has launched! As the main focal point of the shirt, this years clay shoot shirt will honor Zaza with an image one of her drawings from the book, Untimely Departure, Zaza Nkosi and the Fight Against HLH (ISBN:978-0-620-76592-3), her mother Daphne wrote.

Eric has always found the wolf to be a symbol in his life and to have this be the first drawing of Zaza's in Daphne's book was inspiring! (But if you look at all of her drawings in the book, they are all captivating!!) Zaza also had a deep connection with her late father, Stanley Nkosi. As a young girl, Zaza and her father shared a deep connection with the Disney movie, the Lion King. We too share a deep connection with this film and choose to use the quote, "Remember Who You Are" to remind everyone to be themselves and remember where you came from and to never stop reaching for the stars!

We are honored to be recognized for our efforts on the Stanley and Daphne Nkosi Foundation Facebook page.

Order Your Shirt Today!

Learn More & Register for Eric's Clay Shoot

Bittersweet Travel...Eric's Journey Continues...

Wed, 27 Mar 2019 04:00:00 GMT

Untimely Departure...

As many of you know, we spend much of our time outreaching to other families affected by HLH. Several years ago we learned of a young woman named Zaza. Her poise and grace in her Journey with HLH captivated us. Zaza, originally from South Africa, was getting ready to attend University in the UK when her symptoms first arose. Throughout her journey she not only fought against HLH, but she rose to the occasion and strove to bring awareness about HLH and the importance of blood donations.
Zaza gained her angel wings on November 26, 2016.

Zaza's mother Daphne has been so generous to send us her book Untimely Departure, Zaza Nkosi and the Fight Against HLH (ISBN:978-0-620-76592-3) and we will continue to share it with others to help inspire action against HLH and so Zaza and other HLH Angels won't have died in vain. Daphne has dedicated herself to opening the Zakithi Nkosi Clinical Haematology Centre of Excellence to continue the fight in Zaza's name and to provide others with better treatment options for HLH and other hematological diseases and disorders. Copies of the book will be available at this years annual clay shoot on May 18th.

Bittersweet Travel...

We are humbled by Daphne's invitation to attend and her extension of hospitality. We are honored to be joining Zaza's family and the dedicated individuals who have helped make this building a success on the ceremonial opening of the Zakithi Nkosi Clinical Haematology Centre of Excellence June 1st in South Africa. The Zakithi Nkosi CHC will be part of the The Chris Hani Baragwanath Hospital network. C.H. Baragwanath Hospital is the 3rd largest hospital in the world, occupying around 173 acres (0.70 km2), with approximately 3'200 beds and about 6'760 staff members.

Some of you have known about this for some time, and others are just finding out now. It has bittersweet for us in sharing, because most respond with, "Africa!!! That's so exciting!" or "I wish I could go to Africa".... So while we should be "excited" as many would be traveling to Africa for the first time, we have found we are excited in a different way than most expect us to react. We have never traveled this far or been to Africa, but to be "excited" is not our first thought when it comes to this next chapter in Eric's Journey. We are so unbelievably honored to be a part of this day to honor Zaza as well as this historical moment in South African medical history. But please do NOT forget that the reason for this hospital and increased medical care is because someone lost a daughter, a sister, an aunt, a cousin, a friend.

We never got to meet Zaza. We never got to speak to her. And if it wasn't for a mother who unselfishly gives her all to this cause beyond her job and all of her other duties, we would not know about Zaza. The future of HLH treatment in South Africa would cease for years to come. While we are certain we will enjoy our time there and we will celebrate Daphne's success and Zaza's inspiration, please do not forget that we must continue on this journey so others don't have to lose a loved one to this disease!

We look forward to honoring Zaza and celebrating Eric's life with you all at Eric's Clay Shoot on May 18, 2019.

...More on Eric's Clay Shoot

Visit the Stanley and Daphne Nkosi Foundation Website

On this Day in 2012...7 Years Ago

Mon, 11 Feb 2019 05:00:00 GMT

7 years ago, on this day in 2012 @ 3:55 PM, Eric was helivaced to Temple Health. It was 19 minutes long, he was heavily sedated and was on ventilator support. It was the scariest moment ever up until this point, not knowing what was wrong or if he would survive the ride in the snow. ❄️

Thanks to an amazing flight crew and doctors at Temple, we are truly blessed to have Eric with us today -Amanda, Eric's Wife💙

Robert Wood Johnson Medical School Disability Awareness Day 2018

Wed, 07 Nov 2018 05:00:00 GMT

Thanks to my buddy Bryan, today I had the opportunity to speak to 60 first year Med students at Rutgers University. I was invited to speak about my diagnosis, inpatient/outpatient experiences and explained the disadvantages and disabilities after HLH treatment and living with Stills Disease. Amanda was able to explain more of the medical aspects of things from when I was sedated.

I was able to teach them some of the long term effects of the diseases and medications that affect my joints, organs and mobility on a daily basis. Some of these occurred because it took a long time to get a diagnosis and start treatment. Stills Disease is often referred to as an invisible illness because on the outside I look quite healthy, but on the inside my body is still attacking itself every day for the past 6.5 years. There is no cure and I have been unable to get to full remission with current available medications.

The students also learned how difficult it can be for patients like me to maintain a full time job while navigating the healthcare system, insurance company, seeing specialists, getting labs, testing and pre-certs just for a few meds to keep me alive.

I am truly grateful for this experience and hope it helps even just one student along their journey to becoming a doctor.

Not Just Another Check up on the 1st Day Histiocytosis Awareness Month

Wed, 02 Sep 2015 02:00:44 GMT

Today started out like any other day for Eric. Morning alarm, stiff joints, trouble getting out of bed = something for the birds or a day when us "healthy" people would normally throw in the towel and call out sick. Eric worked and we went to Temple for our next check up with rheumatology. It was bittersweet because since we see doctors at a university hospital we usually see a fellow and then the attending. As inpatient, Eric had a fantastic fellow Dr.Fischkoff and attending Dr.Berney. Dr.Fischkoff graduated and we got Dr.R and now have moved onto Dr.Z. Dr.Z was knowledgeable and attentive to both diseases which many of you know is not very easy to find.

We discussed lowering dosages and alternative medications and other minor medical issues that need to be determined or rules out by other specialists that may help reduce some symptoms that are a result of "side effects" of the stills disease and lingering issues from being in the initial hospital stay for 3 months and sedated for two of that. Dr.Berney was on vacation and the current attending was a clear reminder of how fragile Erics health was, IS, and ALWAYS WILL BE. Pretty blunt right? For someone like Eric to have a case of Stills & HLH be triggered and spiral so fast and to overcome it is a blessing- one we know we don't take for granted, especially when we have seen so many lost to these very diseases. But overall, her cautiousness was a reminder that there's no place like home and we don't want to do anything that could bring Erics HLH out of remission or cause the dragon to fully awaken from his drunken slumber.

A few weeks ago Eric was feeling more down than normal and we had bloodwork done, Erics ferritin remains at 600+ and 200 is normal for adults. Eric will remain on his medications to control the Stills Disease indefinitely as of now so as not to rock the boat or let the sleeping dragon lye as our fellow Stillsies would say.

(Far Left) Mike, (Left) Jeannine, Eric, (Right) Dr. Essex

We then met our favorite Hematologist Dr.Essex for a quick bite and had great conversation talking about life's obstacles and all the great things everyone accomplished this summer raising money for Liam's Ligthouse Foundations 5K to Fight Histio.. We even ran into Mike, from PT, Jeannine the head nurse from the ventilator rehab unit floor,Dr. David and Nurse Bob from the ICU and even saw a few other familiar faces. Temple is truly our second home and we couldn't be more thankful for their support. So.. today turned out to be not just another appointment :) We go back in October and even got a rise out of everyone with our Histiocytosis Awareness Month TShirts!

A second booster was opened and those who'd like one of these nifty shirts, as seen above on Eric, can buy one knowing the money raised will go to Liam's Lighthouse Foundation to benefit Histiocytosis research at the HLH Center of Excellence and Texas Children's Hospitals. https://www.booster.com/histioawareness2015

Cold & Flu Season 2014/2015

Sun, 04 Jan 2015 23:27:37 GMT

Many of you know it's cold and Flu season! And along with that comes germs! Germs that can not only make Eric sick, but they can cause severe complications, extended hospitalization and even death.

Please remember that we are not just affected by germs you may have,but also germs of those living in your household. This includes germs your pets can carry as well.

Some strains of the flu virus can last up to 2-3 weeks on surfaces. So even after you feel better and are no longer contagious, you can still be bringing germs into our home via your shoes, purse, cell phone ect.

Remember you could be working with someone who's immunosuppressant just like Eric. Many people fighting things like IBS, arthritis and other diseases can be affected. Just because a person 'looks healthy' doesn't mean that they are.

We appreciate your understanding during this time. Remember to avoid public places when you are sick(ie. Work, The gym, salon ect.) If you have any questions, please don't hesitate to ask. You can truly save a life by washing your hands and using alcohol based hand sanitizers, Lysol wipes ect.

This Day in 2012.

Sun, 02 Feb 2014 18:43:05 GMT

Milestone days are almost like unique holidays now. Today marks the 2 year anniversary since we made Eric go to the hospital. He had a mild fever, aches and severe pain all over his body, poor liver function and a strange salmon colored rash. He couldn't walk and move anything in his body. It was day we thought Eric had a severe case of the flu or Scarlet Fever. We were soon to find out it was much more severe.

CELEBRATE ERIC'S LIFE BY DONATING TODAY!

Donations are made to Liam's Lighthouse Foundation &
count towards our team goal of $5,000 fo HLH research!

Fly Eagles Fly

Tue, 10 Dec 2013 17:33:38 GMT

Eric has always dreamed of going to an Eagles game since he was a little boy. After he was diagnosed with HLH & Still's and still's disease we started a small bucket list. As Eric's recovery progressed, we began to attempt to complete some of the higher goals, but never saw what was coming next.

Earlier this year, dear family friends had surprised us with a gift at our Clay Shoot we held in May 2013. It was the gift of a Lifetime. We have set plans to share our Honeymoon Vacation to Disney they gave us over winter break after we meet up with them. To our surprise, another great opportunity to knock an item off Eric's bucket list was just around the corner.

As many of you know, due to the unexpected media coverage of Eric at the Eagles vs. Lions game Sunday, December 8th, Eric had the opportunity to go to the EAGLES game of a lifetime! Several years ago, Eric was an employee at Dick's Sporting Goods where he met Rick Figarola. The two of them spent many days off work out on the boat fishing together. As life changed over the past few years and Eric began deploying to disasters to aid in clean-up recovery efforts for work, the two saw less of each other, but were never too far apart to send a text or meet up once or twice a year until last year.

Due to the severity and unexplained illness, we refrained from spreading details with those outside of the family or on facebook so we could focus on Eric's health. A few weeks after Eric's hospitalization, Rick was fighting for his life also. One evening he was driving down a local county road on his motorcycle when a driver pulled out in front of him. With oncoming traffic on his left and a gas station on his right, he was forced to skid his bike sideways and hope for the best. He suffered critical injuries and nearly missed death. The two of them had a lot to discuss when they both learned of each others near fatal experiences. Rick had talked with his family and decided that they would invite Eric to attend the last EAGLES home game of the season this year. Little did we know it would be THE game of the season.

A few days before the game forecasters were predicting just a few inches of snow. Since Eric still battles still's disease and is on Humira, Methotrxate (a mild chemo) and steroids, we knew we'd have to bundle him up - which isnt that hard when you're a hunter! So we grabbed the Under Armour, fleece lined pants, his drake waterfowl gear and mossy oak duck blind jacket and headed into the city from NJ. Oh and the EAGLES Santa hat of course!

My friend Alicia and I dropped Eric off with Rick by the lot he and his brothers were tailgating at and went to find some $10 parking so we could hang out with the guys for a bit. The snow slowly started falling and Rick & Eric began putting on their game faces

By the time they were finished there must have already been about 1-2" on the ground and visibility was getting pretty rough so Alicia and I headed back to NJ and the guys headed into the game.

Check out the video below for more images from this snowy Eagles Game!

FINAL SCORE EAGLES 34-20

Later that evening we were settling in for bed and we noticed we were both tagged in a facebook post from one of Eric's former ICU Nurses at Temple.

I found the author, Dan Wing (CBS) and tweeted him letting him know that the photo they chose for the article about how fans stuck out the game - was ERIC! A short change of words led to an impromptu interview at 10:15 that night.

I was busy working on an update for our website when I noticed the article that once had Eric's photo on it had been replaced by other fans. Moments later Dan had tweeted us thanking us for our time and surprised us with a new article just on Eric and his Journey!

Thank you Dan for making a fantastic day end with an even better ending!

KYW 1060 aired Eric's interview live on 12.10.13 and we will post a copy as soon as we have it.