Fred's Got Guts
Meet Fred. Fred is 35 years old. He is a husband to his wife, Emily, father to their daughter, Hannah, and an avid Denver Broncos fan. Fred’s got guts - guts that need to come out.
For a little over two years, Fred has been starving, quite literally. This is something you wouldn’t expect of a middle class family man with “great” health insurance. Fred has a rare disease called Gastroparesis (GP for short). Essentially, Fred’s stomach is dead. If he eats or drinks anything, it sits, rots, and turns to poison in his stomach. In the last two years, Fred and Emily have been through countless tests, two surgeries and twelve different medications to help alleviate the excruciating symptoms. Nothing has worked. On a good day Fred is able to consume about 500 calories with his feeding tube. That's a good day. He is in a constant state of malnourishment, and dehydration. The effects from this has led to chronic fatigue and malfunctioning kidneys which have led to several painful kidney stones. His most recent surgery was last month (October), in which he had a hernia repaired. During this time Fred and Emily have fought side by side for his health, for their relationship, and for their family. His family's normal for two years has been sleepless nights and painful days.
It was decided in early 2016 that Fred would undergo the implantation of a gastric pacemaker...until their "great" health insurance denied the operation...four times. As Fred's health has declined, the insurance company continued to show no signs of budging for the pacemaker, and now he is no longer healthy enough to be able to have the surgery. They’ve been left with one final option - stomach removal.
There’s just one small problem.
On November 4th, Fred and Emily got the hope shattering news that insurance would not cover this necessary and life saving operation either. At this point, Fred literally does not have the time to wait for an appeal, and no hope that one would even be successful if he did.
We have decided to take matters into our own hands. We have made a choice to come together and show this broken system that it doesn't get to decide who lives and dies. This surgery is happening. If it means Emily and Fred have to go bankrupt, so be it. Our healthcare system doesn’t get to make Fred's life a choice even if it did make the choice that the funding would come directly out of Fred and Emily's pockets. They don’t get to decide Fred’s fate.
We need your help. Your support. Your stance against this flawed system that’s choosing to let Fred starve, to fade away right before his family's eyes. Please, be a part of our community and take a stand that gives Fred a chance to live a long and healthy life with his girls.
Fred’s got guts. Now let’s get them out.
PLEASE READ THE MOST RECENT UPDATE
it's been quite a while since we've updated you all, so i wanted to do so today.
fred is now 5-months post-op, and what a rocky 5 months it has been. it is still too early to fully say whether or not fred's stomach removal was a "success", but we can tell you that there are certain symptoms that have improved a little bit. for the most part, fred's nausea and vomiting has lessened, even when he tries to eat a little something. he is able to handle the nausea with his medication far better than pre-surgery. for this, we are thankful. what has not improved, is fred's pain. regardless of if fred eats or not, his severe GP pain is still there, and gets worse if he does try to eat. this has been a major let-down as we were so hopeful he might get some pain relief from having the surgery. we have become a part of a wonderful GP support group, and have met some incredible people who have encouraged and inspired us. this disease can be so incredibly isolating, both physically and emotionally. connecting with others who suffer daily with this terrible disease has helped fred know he's not in this alone, and offers him a chance to vent, ask questions, and just "be" with others who completely understand how life-altering this disease is. we are so thankful for these incredible people who have come into our lives.
lastly, since early january, we have been fighting the "system" in the battle of getting fred on disability. time and time again, this has proved unsuccessful and we keep receiving denial letters. as you can imagine, this has taken a toll on both of us emotionally. while we know we could continue to fight, get a lawyer, go to court, etc., we have decided to end our fight with the government. the last letter we got told us it could be another 3 - 4 months before we were even allowed a court date, and then more months would follow in the red tape of more appeals.
we have given it much thought, and for the well-being of fred's mental health and stress levels, and to focus on moving our family forward, we have decided to begin the process of looking for a job for fred. as his wife and caregiver, this thought is incredibly scary to me, as i see him suffer day in and day out, and i worry about him trying to be out in the workforce again.
however, it is what he wants to do, and i will always stand by him in this life and support him completely.
so, with much prayer and trusting that God will go before us in all this, we are letting people know that fred is looking for work. i have attached photos of his resume, in case anyone out there reading this is interested in reading more about what his amazing abilities and gifts are.
i am so grateful for fred, and for the gift he is to hannah and i. i am grateful for his life and that he is still here, beside me. i am thankful for his determination and his commitment to provide for his family, despite his pain.
and so, dear friends, if you know of a job, or know anyone to pass his resume off to, please do so. we are trusting that the perfect job is out there for fred.
once again, thank you all for love and support. we are where we are today because of your kindness.
When a dear family friend of the Mendenhall’s was informed that ModaHealth (Fred and Emily's insurance company) had denied Fred’s stomach removal surgery, she was livid. So livid, in fact, she reached out to a personal friend of hers who happens to be an Oregon state district representative. Well, that guy clearly rattled some cages. The HEAD of Moda personally called Dr. Dunst (Fred's surgeon) and they spoke on the phone for over an hour! This past Thursday, the hospital called Emily to confirm that Fred WOULD have the operation on January 9th and Moda will, in fact, be covering this surgery! We are ALL absolutely floored and so grateful for this incredibly wild turn of events!
This is all great! But...now what?
On January 9th, Fred will undergo his stomach removal surgery. They’ll be cutting open his abdomen and connecting his esophagus directly to his small intestines. Considering the intensive surgery and Fred’s current malnourished condition, the surgeon expects Fred to remain hospitalized for one to two weeks after the operation. More than likely, Fred will also receive TPN for nutrition. TPN is a way of supplying nutrition to the body by bypassing the digestive system and dripping nutrient solution intravenously (to learn more on TPN visit https://www.g-pact.org/gastroparesis/nutrition/intravenous-nutrition/tpn). Dr. Dunst has projected 6-8 months of recovery time, depending on how well his body heals and receives TPN. At about the 8 month mark, they will begin to really know if the surgery was successful.
The truth of it is, Emily and Fred don’t know what the road ahead looks like, but they are thankful they’ve been given the chance to walk down it. With Fred's condition, he is (obviously) unable to work. Emily and Fred spoke with a disability lawyer last week and are starting the application process this week. The lawyer told them that it takes between 3 - 5 months to process the application, and, once approved, it will be another 6 months before they receive the first check. It is unfortunately a long process but one they are anxious to get started on.
All that being said, we are continuing this fund raiser for the Mendenhall family, but now for a different reason. Being down an income for potentially 11 months before disability kicks in, on top of the many known and unknown medical expenses, they will incur over the next 12 months while Fred is on his way to recovery will not be an easy task. They don’t have all the financial details for out of pocket costs at this time, but here are some that we do have:
- 20% of TPN cost (if covered by Moda). We don’t have the exact amount but estimates online say TPN is $350 per day
- $400 per month for TPN pump supplies
- $2,000 out of pocket for surgery cost (we are assuming at this point MODA doesn't deny any parts of it.)
- Medication co-pays are $480
- Feeding tube supply costs are $275 per month
Our goal is to give Fred and Emily the peace of mind and time to heal from all of this. To let it be known to them that they are loved and supported by their community. Our new goal of $36,471.21 accounts for them to cover the projected out of pocket medical expenses and gives them 8 months of what disability is projected to be once it kicks in 9 to 11 months (plus Go Fund Me’s Fee). If all goes well, this should help financially get them through Fred's recovery.
Thank you all for your continued support. Fred wrote an in depth overview of everything that has happened up until now to read it visit http://mythoughtfulspotem.blogspot.com/2016/11/an-update-from-freds-got-guts.html
Fred was informed this morning that he no longer has a job.....think on that a second....
The impact of losing a job is awful under any circumstances. But right now...it is simply unbearable to Fred and Em.
Please, lift them up! Send positive thoughts, pray, light candles, meditate, anything! Just lift them up, in your hearts, and in your minds!
Fred and Emily, You're not alone! We are all in this with you! Every step of the way - even if those steps seem to be sideways or even backwards! We will fight harder, pray louder, stand taller - and we will do it all together.