Ric's Liver Transplant Expenses

$21,320 of $25,000 goal

Raised by 160 people in 44 months
A F Ric DeVere
on behalf of Frederic DeVere
 SAINT AUGUSTINE, FL
Ric needs assistance with Liver Transplant Expenses

Ric was born with a very rare metabolic liver disease known as Crigler-Najjar. The New York Times once reported no more than 150 people in the world have this disease. Daily he requires photo-therapy to make-up for the lack of an enzyme missing in his body to break-down bilirubin, a by-product of red blood cells when they wear-out.

People with Crigler-Najjar are in constant danger of an acute metabolic imbalance.  A single severe episode results in brain damaging Kernicterus causing permanent physical and mental disablement for the rest of one’s life. In this regard, he has been most fortunate to date.

Ric was 13 when his family finally found a physician with the expertise in treating patients with his rare metabolic disease (Clinic for Special Children ).

There is no cure for this disease. The only option is a liver-transplant.

In all, more than seventy patients with rare metabolic liver diseases including 10 with Ric’s illness have been successfully transplanted at Pittsburgh Children’s Hospital.  Because of the hospital's experience with his rare illness and their successful track record, Ric was accepted and is actively listed at this hospital for his life-saving transplant. 
 
Since he was 10 years old, Ric has been plagued with extreme fatigue and irregular sleep patterns. He was hospital home-bound schooled during his middle and high school years.  

It took him 12 years but with dogged determination he obtained a B.A. in Business Administration from the University of North Florida in December 2014.


However, it was not until graduating and attempting to enter the work-force full-time that he realized how difficult it was for him to work a full-time schedule with his debilitating medical condition. 

This is a major life-changing decision for Ric but once he is transplanted, he looks forward to going back to work, becoming an active member of the community and living a more “normal life”.

As you can imagine the cost of a liver transplant is overwhelming. Even with good insurance there are many expenses that must be covered out of pocket. Some of these are co-pays, deductibles, travel to and from Pittsburgh and relocation expenses while he is there.

In addition, Ric will be on a lifetime of anti-rejection medications. He greatly needs financial assistance from those who care.
            
Your support is vital to the overall success of Ric’s struggle and latest challenge.

Please know that your contribution counts.  And c
onsider helping him today by donating to his campaign now!

On behalf of Ric and his family, thank you.
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Hello to all who have been following Ric on his liver transplant journey and road to recovery. Here is an update regarding his progress as of February 10, 2019.

After fully 100 days in Pittsburgh, on January 25th Ric was able to come back to Florida to enjoy the warmer weather and the company of loving family (and pets) at home. His team of physicians at UPMC Childrens okayed his returning to Florida based upon a third blood test that did not detect any further CMV virus.

This past week Ric briefly returned to Pittsburgh for a couple days for a planned medical procedure on his nerve damaged arm. The results are helping him with the nerve pain and numbness in his hand.

Today everyone is back home again in Florida. Given no further unexpected medical emergencies his next date to return to Pittsburgh is now mid-May.

Ric still has a way to go yet before he is fully recovered. We all hope and pray that he will continue to make great progress and over the next few months be able to return to work and resume a more normal life that has been on hold for far too long.

Thank you to all of his friends, family and supporters who have made such a difference in helping Ric through this difficult and challenging journey.

We will post further updates to keep all posted as news and events warrant.

Thanks again to all.
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Happy New Year everyone!

Here is an update on Ric as of Jan. 5, 2019.

It's been a tough holiday season for Ric. You may recall from his previous update in mid-December, he contracted a virus (CMV) and was sent home after a couple days in the hospital with a pick line in his (good) arm where we have been giving him IVs with an anti-viral medication twice a day from his apartment in Pittsburgh where he is recovering.

We have been doing this for now three weeks with several more weeks likely to go. It has wiped him out.

The IV anti-viral meds themselves are toxic besides the invading virus which has caused Mono-like symptoms. Since being sent home from the hospital, he has stayed in bed or a recliner for all but a few minutes each day except for when routine trips to the hospital transplant clinic are scheduled. Before in early December he was working on getting in 10,000 steps a day to build strength and stamina.

In addition Ric made unexpected day-long trips to the ER on both Christmas Eve and New Year’s Eve due to issues he was experiencing.

Part of his treatment for the viral exposure is to back-off his anti-rejection meds so his own immune system can help to fight off the CMV virus. That puts one at risk for organ rejection though. It’s a delicate balance and his “numbers” recently have not been good.

Last Thursday January 3, he had a liver biopsy to determine the level of rejection and what the next steps should be to correct his situation. We are still waiting on biopsy results to learn if he needs to be admitted to treat his rejection.

If that is the case he will be admitted for at least four days while they mega-dose him with steroids to control the rejection. Other parents we know with transplanted children say it is a tough several days with heavy doses of drugs and not fun to go through or to watch.

Ric's mother (Katie) has been carrying the load and does a fantastic job being the sole care-giver but it can be daunting. Ric's father's work has graciously agreed to let him work from Pittsburgh for the time being to help out during the bumpy recovery.

Please keep Ric in your thoughts and prayers and thanks to all for your support.
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December 16, 2018

Happy Holidays and Merry Christmas everyone!

As the holiday season is in full swing it's time for an update regarding Ric's progress to date.

Ric and really all of us were anticipating and hoping he would be able to return home to Florida for just a few days at Christmas time. Unfortunately recent new complications have prevented him being cleared to travel during the holidays.

Ric is experiencing complications from exposure to a virus that he acquired from the liver he received. Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Once infected, your body retains the virus for life. Most people don't know they have CMV because it rarely causes problems in healthy people. But if you're pregnant or have a weakened immune system, CMV is cause for serious concern.

His CMV "viral load" spiked huge this past week and required him to be admitted to the hospital for the first time since he was discharged the 1st of November to recover at his nearby apartment. He was sent back to his apartment this weekend but went home with a "pick-line" in his "good" arm where he now must be administered an anti-viral medication intraveneously twice a day for as long as the next 6 weeks!

As an additional precaution, his anti-rejection medications have been reduced to help his weakened immunity system fight off and build some resistance to the virus. This presents its own set of potential complications as reducing these medications can increase the likelihood of liver rejection. It's a delicate balance that requires close monitoring and regular blood tests twice a week.

On the upside Ric's nerve damaged arms and hands are making slow but steady improvement. He receives regular hand and other physical therapies multiple times a week. His pain, while still present, is more manageable though he continues to be on very high doses of medications that treat certain types of nerve pain.

This will be the first Christmas that Ric will not be with his entire family. His brother Hunter and Hunter's girlfriend Bunny unfortunately will not be able to come up to Pittsburgh for Christmas. Ric will be spending it with just his parents. Not nearly as much fun though we all will make the best of it!

At this time of year we are so especially thankful Ric finally received his needed liver transplant and we look forward to the day when he is able to resume a more normal life. We truly believe it is a matter of time before that occurs. How much time we can't say.

But with the help, prayers and financial support of so many friends and family that path on the journey is made so much easier.

Happy Holidays to all! May it be a prosperous, joyously happy and most importantly safe and healthy New Year for everyone!

P.S. - The photos are from a Penguins NHL game November 10th and the Phipps Conservatory's Winter Flower Show December 4th.
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Here is an update regarding Ric and his liver transplant as of November 13, 2018.

Ric has been recovering at his apartment in Pittsburgh with support of his family. Post transplant while at UPMC Children's Hospital, he spent an extra day 5th day in the ICU but was able to be discharged from the hospital after less than two weeks.

His new liver is functioning well effectively "curing" him of the metabolic disease he was born with. Before his transplant his bilirubin numbers usually ran between 15 to 20 with the normal range being 0 - 1. His most recent bilirubin level is now .6

He goes to Transplant Clinic twice a week at UPMC Children's. They are continually monitoring him for signs of rejection and altering his dosage of medications as needed.

Ric's biggest issue continues to be related to unintended complications from the surgery which resulted in damaging the nerves in his arms due to restraining them during the 12 hour surgery. This resulted in acute numbness and paralysis in both his arms; something the physicians had not seen to this degree in anyone before. While there has been improvement in his right arm, he has been plagued for nearly two weeks with extreme debilitating nerve related pain in his left hand.

As a result of the injury to his arms and hand, he has had an MRI, been seen by three neurologists, an orthopedic specialist and most recently today a pain management specialist. No one has come up with any real solutions as yet but we are hopeful this will eventually get much better.

Ric has said that the nerve pain in his hand has been more severe and unrelenting than the pain associated with the liver transplant itself.

The physicians informed Ric last week to plan on spending the winter in Pittsburgh while he recovers; so it may be a while before he gets back home to Florida.

Thank you to all the friends and family that have supported Ric during his time of need. You prayers, kindness and generousity has meant so much!

I will post another update in the next few weeks.
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$21,320 of $25,000 goal

Raised by 160 people in 44 months
Created August 4, 2015
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$50
Anonymous
1 month ago
$100
Anonymous
1 month ago
PM
$100
Patty Menendez
2 months ago

Prayers!

$50
Anonymous
2 months ago
AA
$200
Andrea Andrews
3 months ago

Ric and his family have been good neighbors since we moved to Vilano over 3 years ago. Good luck Ric! Get well soon. The Andrews family

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