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.
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.
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.
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.
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💙
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.
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.
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
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.
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.
Donations are made to Liam's Lighthouse Foundation &
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!
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
KYW 1060 aired Eric's interview live on 12.10.13 and we will post a copy as soon as we have it.
It's amazing how far Eric has come in the last year. This time last year we began to see some great changes in Erics labs. A few scary moments throughout the year, but since Eric's pneumonia in the summer, his inflammation has gone down.
Our first appointment was at 8:15 with Dr.Essex. It had been a while since we last saw him. We're pretty much on a maintenance schedule with him now that we believe Eric's HLH is in remission. We had some lab work done to see where he stood from last month when it was discovered that he had a slight pneumonia. Below you can see two of the main number we follow with the Quest iPhone app since Eric has been an outpatient in May 2012. You can see the high white cell count at 25.9 in February when Eric went to the ER and had a Still's Disease flare up. Most notably in the ferritin was 1385 last month when Eric had some inflammation in his lungs. Both of them are still out of 'normal' range, but show a trend that has been much more usual for the diseases that Eric has and shows that he is once again on the mend.
The increased counts usually relate to his Still's Disease being managed well, but not curing him of the pain and inflammation it causes.
We spent some time back in the Temple cafeteria, which has pretty decent hospital food - and i'm sure Tom would agree that it kind of feels like comfort food after eating it for 3 months! It was breakfast still so we both Enjoyed their awesome Texas style french toast with Strawberries on top! Yum! We hoped to see many familiar faces, but then realized many of those were fellows and they have all graduated and moved on.
The afternoon was filled with a whole lot of waiting! Eric had a follow up CT scan on his chest to check his lungs and get an idea how his liver and spleen are. Last check his spleen was still enlarged, which is a symptom of HLH & Still's Disease as is monitoring the white cell and ferritin counts. At times, it can be quite confusing to see if it is a Still's flare or the dreaded HLH returning.
After that he had a breathing test where they motored his oxygen levels while exercising to make sure he was not losing any during those times.
We have not received final results on the last two, but think they went well. Overall, this long, boring day was a positive marker for Eric's health going forward.
Eric was diagnosed with HLH & Still's Disease at 27 years old in 2012 and given only a 5% chance to live. This is his journey.
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