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Jenna's Story and Medical Fund

$18,563raised of $33,000 goal
56%

Organizer: Friends and Family Beneficiary: Jenna Umthun-Udzinski

Please read Jenna's story...

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WE NEED YOUR HELP!

We are asking for your help to ease the financial burden on Jenna and her husband, Rob. Due to the severity and continuation of Jenna’s injuries, explained below, their medical debt has skyrocketed. Insurance exists, but the out of pocket expenses from this medical merry-go-round have proven to be enormous. Insurance, as many of you have experienced, does not cover it all. Prolozone & PRP injections and physical therapy might soon be denied due to medical debt; but, with your help, Jenna can get the treatments she needs. In addition to current medical debt of $24,000, Jenna’s PRP/Prolozone injections and physical therapy expenses are approximately $800 per month, out of pocket.  The injections and specialized physical therapy are expected to continue for at least 12 to 24 more months as she faces additional surgeries in the near future.

JENNA'S STORY

Nearly two years ago, Jenna was an active, healthy wife, mom, and was working as a Physician Assistant in a busy Internal Medicine clinic. Her life was full of energy, vigor and strength.  She was looking forward to her expanding role as a mother, when her second daughter was to be born in July of 2011.

Her painful journey began three months prior to her due date.  She began to suffer severe pelvic and hip pressure.  Her mid-wife assumed it to be typical late term pregnancy pressure from carrying the baby low and having a small pelvis.  She continued life as usual, enduring the pain, working in a busy medical clinic, and caring for her then two-year-old daughter, Ella.

Never would she have imagined what was to come.  After an intense, natural delivery, a beautiful little girl, Sienna Skye, was born on July 14, 2011. Jenna knew immediately something was terribly wrong. She couldn’t stand or walk for very long due to excruciating pelvis and hip pressure. She was put on bed rest, but over the next six months her symptoms dramatically worsened. Numerous doctor visits didn’t reveal the exact cause. Visits to specialists created more misdiagnosis and confusion. After countless tests, hours of researching, endless tears, constant pain, and much uncertainty, the conclusion was made that she had severe pelvic instability caused by Sacroiliac Joint Dysfunction (SIJD) & Symphysis Pubis Dysfunction (SPD).  All of this likely resulted from Hip Dysplasia and Joint Hypermobility Syndrome, two conditions that often aren’t diagnosed until early adulthood after a trauma, pregnancy, or injury.

SIJD AND SPD

During the traumatic delivery, the main ligaments that held her pelvis together were stretched beyond their capacity, some even torn. Her pelvis was no longer able to support her ability to stand or walk. Only seven percent of women suffer from this injury as a result of childbirth.  In one percent of those cases, the damage is irreversible.  Jenna fell into that one percent.  Consequently, she now had a beautiful, healthy baby, but a broken body.  The mal-alignment and injury to her pelvis would most likely result in a life of very limited mobility, decreased sitting ability, and extreme pain.  At six months post-partum her pelvis was still so unstable it would come out of alignment with any movement, including turning over in bed.  She was advised the only hope at this point was surgical intervention and stabilization. 

SACROILIAC JOINT FUSION SURGERY

Almost six months postpartum, after all other options were exhausted, Jenna made the eight hour drive, lying down in the back of a minivan, to Georgia to have bilateral sacroiliac joint fusion.  This is a major surgery involving the fusing together of her SI joints in the back of her pelvis.  Where previous stability and support were maintained by ligaments, they were now maintained by I-Fuse Titanium rods on each side of her pelvis.  Physicians were certain it would greatly improve her function and pain.  With two young children at home, whom she was unable to care for, and with a drained and desperate heart, it was a chance that had to be taken—for her girls, for her husband, and for the chance to gain back some degree of her previous life.

Six months after her SI joint fusion surgery, Jenna had failed to meet the milestones of most SI fixation surgeries, and she was experiencing more pain than what existed prior to her surgery. The new nerve pain increased at an accelerated rate and spread throughout her pelvis, spine, and left leg. She described it as a fierce burning and stabbing sensation “like fire in her pelvis shooting up her spine.”  After visits to more specialists and after everything Jenna had already endured, she was diagnosed with RSD/CRPS.  Little attention is paid to this condition, but its effects are horribly devastating. 

Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS)  

This is a neurological disorder in which the nervous system, in response to a seemingly minor trauma (such as surgery or injury), reacts in a disproportionate way.  The nerves begin to malfunction and misfire, sending rogue pain signals to the brain. There was some nerve damage to her sacral nerve plexus during the surgery that triggered the RSD response.  A victim of RSD will feel pain—real and acute—everywhere and anywhere, but will be unable to relieve the sensation because there is no outside source and it is resistant to most medications. There is no cure for RSD, but doctors and researchers have learned that a drug called Ketamine can potentially “re-boot” the nervous system and “trick” it into working properly for a period of time and put it into a “remission.”  Some patients respond, and some do not.

Jenna’s muscles were atrophying despite physical therapy due to the RSD/CRPS; doctors with new ideas or treatment options became fewer and fewer; and her girls were growing, changing, and living life before her eyes as she watched from the sidelines.  Therefore, in May 2012, Jenna opted for the Ketamine infusions.  After four days of ketamine infusions, she had a chemo-type reaction and became very sick for several weeks.  Tragically, she was a non-responder to the treatment and had no improvement in the RSD nerve pain. Doctors concluded her body did not seem to be accommodating to the new alignment of the SI joint fusion, and she was advised to consider a surgical revision. They thought the new alignment in her pelvis was exacerbating her hip instability from the lax ligaments, and that this may be a source of her continued nerve pain and inability to weight bear.

HIP DYSPLASIA, FEMORAL ANTE-VERSION, FAI, AND LABRAL TEARS

Next, Jenna was sent to a renowned hip preservation specialist who ultimately diagnosed her with bilateral hip labral tears, hip laxity/instability, hip dysplasia, and FAI (Femoral Acetabular Impingement). This was a large missing piece of the puzzle that she was told was likely the original source of her injury. This condition and diagnosis were missed by all of the specialists whom had evaluated her after the childbirth.

The ligament damage had extended to her hips. Therefore, they were not adequately supporting her pelvis and body during normal everyday movement, resulting in dysfunction during any weight-bearing activity. Hip dysplasia and femoral ante-version prevented proper articulation of the hip joint. She underwent arthroscopic surgery on her left hip in October of 2012 to repair the labrum, cartilage, bone impingement, and ligament damage. There was more damage found than was expected and advanced stages of arthritis were present. Her 20 plus years of athletics including collegiate basketball, running, and yoga in combination with the hip dysplasia—all activities she pursued to stay healthy—had laid the groundwork for the stress on her hips. The trauma of her second childbirth was the final straw. Unfortunately, Jenna's arthroscopic hip surgery was not successful due to the bone abnormalities: the dysplasia and femoral ante-version. She has been given the option to have either Bilateral Total Hip Replacements OR Bilateral Derotational Femoral Osteotomy surgery in an effort to try and preserve her natural hips for as long as possible. Jenna and Rob are hoping to make a decision by the end of the summer.

LIFE TODAY

As you can imagine, this has been an unbelievably perpetuous journey. Life is much different than she ever imagined it would be. Jenna can only sit, stand, and walk for a limited time or as much as her pelvis and hip pain tolerance will allow.  She has to spend part of her day laying down.  However, as the journey continues, she is fighting with full force.  She continues this tremendous walk of faith by relying heavily on the love and saving mercies of God. The fight is extremely difficult, and it is a true test. Simply enduring is fighting. Jenna’s heart is heavy but hopeful with the improvements she has made, and she continues to fight!

Her husband, Rob, has been under tremendous stress juggling and adjusting to all the changes taking on the majority of care for the girls during her surgical recoveries and working his full time job as a firefighter/paramedic. Jenna is incredibly thankful for Rob’s commitment to his family during the past year and a half. Together they press on and hold on to hope, strongly believing “that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” (Romans 8:18)

There have been advances in Jenna’s mobility and ability to sit as a result of the SI fusion healing, specialized P.T., and successful Prolozone and Prolotherapy treatments which is something to celebrate! There also has been mild improvement in her nerve pain. She is now able to leave the house and participate in small family outings; however, the continued hip instability and pain prevent her from reaching her mobility potential.  Jenna has been receiving Prolozone and PRP treatments into her pelvis and hips to help strengthen and tighten the ligaments. This decreases pain and improves joint stability. These treatments have helped her immensely; however, they are costly, time consuming, and not covered by insurance, and the results so far have not been permanent. After her next surgery, Jenna will need extensive rehabilitation to help her body accommodate to the new changes in her pelvis and hip alignment through neuromuscular rehab, aqua therapy, and strength training. In the spring of 2012, Jenna's physical therapy benefits ran out, and she had to pay out of pocket for specialized therapy services the remainder of the year. Insurance has also refused payment for some of the treatments and part of the hip surgery in which they originally agreed to pay. This has left a considerable amount of medical debt. 

HOW YOU CAN HELP

Pray. Your healing prayers for the restoration of Jenna’s mobility and decrease in pain are truly the greatest gift of all.

Donate. Our goal, to help Jenna receive the Prolozone and PRP injections she needs and to help her family pay for the medical debt incurred to date, is $33,000.  Her family has $24,000 in medical bills, and we are estimating future medical care and post-op physical therapy to be $9,000 in 2013-2014.

In order for this goal to be reached, we need your help. Please pass this on and help us spread the word. Jenna and Rob both have been very independent, successful, and hard working their whole lives, and asking for financial assistance is not something they would normally do. Therefore, we have taken it upon ourselves to fundraise for their family through the YouCaring website. This allows them the freedom to focus on the most important issue at hand – Jenna’s healing and future surgical decisions. We appreciate your prayers and would like to extend our heartfelt thanks to all of you for taking the time to read Jenna’s story. She and her family are incredibly grateful for the support and love they have received thus far as God continues to open doors and opportunities for healing and advancements!

If I donate, where will the money go?
100% of the donated funds (after the PayPal fees) will go directly to two critical needs:

1.  First, 100% of the donated funds will go directly to help paying off the $24,000 of medical debt incurred over the past 2 years from Jenna's childbirth injury.  This debt is a result of costs not covered by insurance including:  medical imaging, testing, travel to out-of-state doctor appointments, surgeries, rehabilitation, and childcare during her rehabilitation.

2.  Funds collected over the $24,000 will go directly into a medical savings account that will be used to help pay for Jenna's future PRP/Prolotherapy injections.  Although the details and dates have yet to be set, Jenna will undergo future surgeries.  These funds will also be used to cover childcare costs while she recovers and rehabilitates from the surgeries as well as any out of pocket physical therapy costs.

Your Gift:
This website does not charge a fee for hosting, but PayPal does charge a 2.9% processing fee, plus $0.30 per transaction.

To avoid PayPal fees (especially on larger donations), you can make a check payable to:  Jennifer Udzinski c/o:  Melody VanArsdale 605 SE Stow Terrace, Port Lucie, FL  34984-6420.









Contact the Organizer
Updates

Updates

10/05/2013
by Friends and Family

First of all, Rob and I want to extend an immense, heartfelt THANK YOU for all of your prayers, friendship, love, support, encouragement, and donations along our “walk of faith.”  The outpouring of support has left us speechless, humbled, tearful, and full of HOPE! This is such a blessing, and we are grateful beyond expression.  The support we have received has literally carried us through some desperate and horrific times.  In all honesty, our Faith has faltered and been as dry as the desert at times, but God continues to guide us, carry us, grow us, and navigate the way through this difficult season of our lives. We continue to give all glory to Him.

At this point in time, we have two surgical options. We have been praying for discernment and contemplating which option would be best. The goal is to hopefully decrease my pain and increase my mobility during daily rudimentary tasks. We have decided against option 1, which is a surgery that would cut the femur bones and then screw them together in a new alignment (bilateral femoral osteotomy).  This procedure has a questionable success rate, and an incredibly long recovery time. After much research and many medical opinions, we have learned that this surgery may not completely address my hip dysplasia and pelvis deformity. We feel our family cannot afford this risk emotionally, mentally, physically, or financially.  We have decided that when we feel ready to take the next step, it will be Bilateral Hip Replacements with Reconstruction (each done separately). This will address my femur deformity and hip dysplasia with a higher success rate and shorter recovery time. The major drawback is my younger age. The hip replacements will not last my entire lifespan; therefore, I will need revisions in the future.

We survived the summer with some wonderful milestones and improvements in my physical mobility! My parents flew the girls and I from our home in Florida to my hometown in North Idaho for some much needed family time full of rest, reflection, rejuvenation, and making fun new memories. The travel was extremely difficult, but we survived! While I was in Idaho, I completed several aggressive and frequent PRP/Prolotherepy injections into the ligaments in my hips and pelvis with a brilliant Physiatrist and PM&R physician in Spokane, Washington. We are so thankful for his remarkable skill.  These treatments have been priceless as they decrease my pain, increase my mobility, and help to tighten up the ligaments supporting my pelvis and hips. Although the effects are not permanent, they have allowed me to strengthen and I will take what I can get! It was because of your donations that I was able to complete these treatments without causing further financial strain on my family.

In addition, we found a new kinesio taping technique and bracing that helps to stabilize my hips. It has been a Godsend and helped me to be more functional and mobile throughout the day. This was a HUGE answer to our prayers over the past year. On a good day, I am able to walk 100 yards without aides as long as I am taped or braced. It’s not perfect or pretty at times, and I am never without pain, but I am doing it!!! This is the farthest I have been able to ambulate since Sienna was born 2 years ago.

There were many “firsts” this summer.  With hip taping and bracing, I was able to walk into the grocery store unassisted and complete a medium sized grocery list. I was able to complete 25 minutes on a stationary bike. I walked into a retail store unassisted with my Mom for the first time in 2 years, where she treated me to a few new outfits (nothing like retail therapy J). I am now able to sit long enough to rock and read a bedtime story to Sienna (something I couldn’t do the first 2 years of her life without awful burning pain). I can stand long enough to make my girls’ favorite meal - mac and cheese.  I am able to walk my 4 year-old, Ella, into pre-school without crutches, with more ease, and improved pain. The BIGGEST milestone is - I am able to take care of Sienna and Ella with modifications, all day long without help for the first time!!!  For those who have witnessed the severity of my disability and pain from the beginning, this in and of itself is a true miracle! It still remains difficult, but for the first time we feel like we are headed in the right direction. Please continue to pray for continued healing and for God’s will to be done : )

To all of the parents out there with little ones – take a couple extra minutes tonight to sit and rock, cuddle, read, pray, or talk with them. Cherish these moments. Please don’t ever take the little things for granted like I did before my injury. We are not promised tomorrow, and we do not know what life is going to bring the next day.

 

For we walk by faith, not by sight.  2 Corinthians 5:7

Do not worry about tomorrow, for tomorrow will worry about itself.  Matthew 6:34

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6


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