Please note: some events depicted are graphic in nature. Please take care in reading.
My wife and I started with one of those picture-perfect stories: met by happenstance on the internet to fall in love, young, energetic people out to conquer life excitedly with their college education and the will of God. Started the family, bought the house, pounded down debt, and started saving up for a rainy day. We had no idea that a rainy day could last so long.
When we decided to have our youngest child, Rowan, it was a long struggle. We tried and tried to have a little sibling for our fun and energetic son Ryland, but things weren't working out. It was recommended that we either use medical assistance to get pregnant or officially end the capability for pregnancy for the health of my wife when we suddenly learned that she was pregnant. The pregnancy itself was a blessing and went by without any issues, except for the fact that an ovarian cyst was growing along with my son. In early May, our ten-pound baby was to be delivered, and an almost ten-pound cyst was present as well. Our bouncing baby boy was born completely healthy though.
When the doctors did the c-section to bring our son into the world, as well as remove the cyst, the cyst ruptured. I was rushed out of the room with our new boy in my arms so that the doctors could finish taking care of my wife. As I sat there with my little boy, those few hours seemed like days. No doctor was available to tell me if my wife was okay, and I had no idea if the cyst rupture was serious or not. The cyst turned out to be non-harmful after lab testing. But while I was waiting for her to come out, I snuggled our new boy and prayed he would know his mother. She eventually came out, but it was a scary few hours.
Our family continued as most would after a birth, learning new methods and getting to know how everyone worked together as a family. Soon, however, my wife Renee began having issues. At three weeks postpartum, she developed her first major fever of 105. She would get sick, get antibiotics, get better, then drop right back down to being sick. After two weeks Renee developed bilateral sciatica and she was unable to move. It became frustratingly repetitive as every time we went to the emergency room, we constantly were told, "oh, it's just an infection, here's some antibiotics" to turn around and do it again. As my wife got weaker and things became overwhelming, we took a vacation from my job in Virginia to visit our nearest family in Missouri for a bit of a respite and healing.
The night we got to Missouri, however, Renee got sick again, this time to the point she had to be admitted to the hospital. They stated that the infection she had was so bad it had gotten into her bloodstream. She was septic with pseudomonas and enterococcus fecalis. She needed immediate IV antibiotics. Our vacation and relaxation immediately turned into juggling our two little boys and supporting my wife, scared out of her mind in the hospital, all alone unless I was able to go. She wasn't getting better, and I was running out of vacation time. We had no choice: I had to drive back to Virginia, leaving my kids in my wife's mother's care, and my sick wife in the hospital, unsure if I would ever see her again.
When my wife finally got better a month later, I drove back, picked her up, and headed back to Virginia. Halfway through Kentucky, though, she got worse again, and we had to stop. Another emergency room overnight, another "it's just an infection", another antibiotic. Another disheartening unknown answer to everything. On the way back into town in Virginia, I had no chance but to drop the kids at the babysitter, drop my wife at the emergency room, and run off to work. I had literally exhausted every other option.
At the hospital, my wife was being told yet again that she was having an infection, here's some antibiotics. Just a few weeks earlier, she had been told at a clinic that she must be drug seeking to seek medical help so often in a short period of time. By now it was July, and Renee was fed up and at her wit's end. She told the doctors she would not leave the hospital until further testing was done on her kidneys, as she felt she had a stone stuck somewhere, or a kidney infection. They agreed to a CT scan, where they discovered a multitude of kidney stones and a kidney infection! Pregnancy and ovarian cysts can mess with a body, and this one had done a number on her kidneys. She was sent to a kidney specialist that week. The kidney specialist said, "you know, that infection can effect your heart. You should see a cardiologist just to be safe." She was referred and visited them one week later. The results came the next morning. My wife went in for the results and was met with information she never thought she would hear: that she had 48 to 72 hours to live. The infection that we had been fighting for months had infested her heart, eating away at her aortic valve. She had lost most of it, with a broccoli-shaped chunk hanging onto what was left. It was obvious that my wife would need open heart surgery to keep her alive. The big catch was they had put a clock on her life, but they couldn't operate until antibiotics had cleared up her bloodstream, while too much cleaning could cut the stem of the broccoli, letting a giant clot of infection head straight to her brain.
Renee lost the entire summer of 2011, as she needed to stay in quarantine as she battled this disease. She was laid off due to restructuring the following week from her long-term employment position she had advanced in. Since she was so ill, she was unable to look for employment and she ended up being under doctor orders for approximately 90 days. This prevented our ability for her to claim unemployment. As she was laying in a bed dying, we craved family time, and I was dashing between work, home, and caring for my wife, unsure of the future. My wife and I had a three month emergency fund. We made it last 14 months and several friends and family came along side of us to fill in gaps as they were able, during this battle.
Then there was insurance. Her workplace had let her go, and offered a COBRA plan at nearly $800/month. My wife obviously needed insurance right then. When calling around to insurance agencies at the time, "pre-existing condition" translated to "no way we are going to insure you." My only choice? Insure her at $800/mo on our already halved income since my wife obviously couldn't work, with no additional unemployment income either.
A summer passes, and Renee makes it home after open-heart surgery. Now, if you remember, it's time to take care of those kidney stones that were found before the heart surgery even started. After a few minor procedures to plan for stone removal procedures, Renee was scheduled to have a tube placed in her kidney through her back, in order to remove a large stone during the main surgery. However, the doctor deemed that the tube had been placed "inopportunely." Translation: they couldn't get anything. An entire surgery (on a woman on blood thinners for life) was useless. We had to wait for her to heal up, bring her home, then wait to start again.
We didn't make it, though. After a week of healing in the hospital, we returned home. In the middle of the night, Renee called for help from the bathroom, and I find her. The toilet was nearly black with blood. We call an ambulance and she was rushed to the emergency room with a medic on board. After many hours of frantic unsurity, we find that that tube that had been placed in the wrong area had nicked her renal artery. Blood was flowing through there, dropping into her kidneys, clotting up and forcing out her urethra. She was bleeding to death from the inside, and given 24 to 48 hours to live.
From the trauma bay in the ER, she was rushed to a local specialist hospital resulting in two overnight emergency surgeries and sixteen blood transfusions. A coil stent was placed in her renal artery, saving her but permanently killing a quarter of her kidney to stave off the blood flow. Also lost: another couple months of healing, as Coumadin patients sometimes require extra time in the hospital post-op. My wife laments to this day her142 days in the hospital. Although she made some wonderful friends in nurses and medical team members, her boys needed her home. I was being the best Dad I could, but these boys needed their mother. Renee underwent several procedures to have the remaining stones removed surgically. It was discovered that each of the stones was infected with the bloodstream infection mentioned before, so she remained with a picc line most of this time. She now has only two stones left on board. One is so large, it cannot be removed, as it is embedded into her kidney wall. She was told she would need a transplant to be stone free, but this is not necessary for her survival. Due to the prolonged exposure to the infection in her bloodstream, she now has a permanently damaged spleen, thus rendering it useless and unable to aid in staving off simple sinus or respiratory infections. This has resulted in additional hospital stays and medication changes.
I am blessed to have my wife with us. She is a strong, creative, woman and wonderful mother. I would go through all of this a hundred times if it were necessary to keep her in my life. But the resulting firestorm of financial distress has pulled us under. If not for the will of God, the charity of the church, and the friends who came alongside of us, we would be nowhere. They have kept us alive through it all, but our finances only stretch so thin.
We had always wanted to move to the Midwest to live near family, however, due to financial issues from these events, it became necessary to leave our home and move to Missouri, taking a big hit financially and having to take part of our mortgage with us. We appreciate all that the financial institutions in Virginia allowed us to do, in order to leave the area, even though we are really struggling. We are currently living in the same house as my in-laws. As for jobs, Medicaid regulations have changed. For qualified candidates in social work positions that we have experience in, you now need a master's degree to do jobs that we have 12 years of experience in. My wife's weakened state prevents her from getting a job, let alone by the time we would pay for a sitter and gas to get her to work, we would use most of the money and not be any further ahead in addition to all of the weekly medical expenses still looming. I've taken a great job, but it pays less than what I was getting in Virginia and insuring my family would literally take 90% of my check. We're currently trying to figure out if the Affordable Healthcare Act can help us, since we cannot afford my work-provided insurance. When applying for the AHA, we were told we don't make enough to qualify for the subsidies, kicking us into Medicaid status, but it's difficult to find specialists around this area that my wife needs to survive that accept Medicaid.
There are major big bills that we face. The largest one being the cost
of insurance. We are currently still paying $800/month, which is going on a
credit card we opened for this reason, as we have no other means to pay
it. We still have excellent credit, but we are concerned this will
change. As I mentioned earlier, we shopped around, but pre-existing
conditions made no company available to help my wife. As of right now,
since we can no longer put insurance on our credit card, Renee could be
uninsured as of January 1, unless the AHA comes through.
We estimate that we have hundreds of thousands, if not a potential
million dollars worth of doctor bills, with no end in sight. We have
applied for financial aid with the hospitals and clinics who have
provided care, and are waiting on some of the answers still. My wife
will need constant care with weekly coumadin clinic blood checks and
monthly medication for the rest of her life. We have powered through
many a financial hardship before this: by following the advice of Dave
Ramsey, we had made a solid start to our little family. Now, we survive
paycheck to paycheck. While we see a future where our bills are paid
off, every time one of these $10 or $25/month bills gets close to paid
off, another illness throws three more on the pile. We feel our
budgeting expertise can get us stable again, but we have to get out of
this hole first.
Renee's not out of the woods yet, either. A messed up Coumadin level has led to two visits to the hospital since, one for a heart attack and another resulting in a Thermal Ablation to prevent excess bleeding. She received four more blood transfusions as well. Two more hospitals, two more reams of specialists, two more rounds of "minimum payments" that are becoming the maximum part of our income.
My work mates have led me here to indiegogo.com. I've researched and found many worthwhile causes that I wish I could contribute to. Without a doubt, I appreciate the time you have taken to listen to our story. Any contributions you can make to help soften the blow we have suffered would be greatly appreciated. No matter what, I have my wife and children. God has walked alongside us and to those who have supported us this long couple years, THANK YOU! If it weren't for the amazing team of doctors who were up to the challenge of saving her thrice from near-death experiences, my children would have a completely different life than they have today, blessed with their mother's presence. That's all I really need. Thanks again, and God bless.
What We Need and What You Get
- We've set our goal at $50,000, which is primarily to get us a little breathing room, but as I stated earlier we have enough debt to be handing some down to our children if we do this on our own. Whether we miss, meet, or exceed our goal, every penny will go toward relieving the medical bills in front of us and maintaining my wife's regular doctor expenses.
- A local agency, Rising Abilities, is processing some rewards that will be added on to the program as we go along. Keep your eyes on this spot for more information!
The Impact
Honestly, I'm confident that the future impact of this campaign will go beyond what I could ever imagine. Ryland and Rowan are wonderful children, and getting past this heavy debt will impact their future and allow them to see the goodness inherent in the world, helping them be better people as they grow. It will allow a wonderful woman who fought long and hard for her life to continue so she could raise these children do just that without the constant stigma of facing an unending pile of bills. Every person we've ever told this story to has shared their heart that they don't know how so much could happen to one family and we still have the strength that we do: I'm truly amazed that Renee is still standing after all of this. Every penny placed toward this campaign will help us live a more normal life. We aren't out to get rich on this. If it raises a dollar, we will be honored.
Other Ways You Can Help
We have been blessed with the joy of being together as a family, and the funds raised here will help a lot, but we know not everybody hitting this site will be able to contribute. Here's what you can do to help:
- Pray, Pray, Pray! We feel that spiritual support will do wonders: miracles can happen financially, and your heavenly requests can bring us emotional support as well.
- Spread the word at this site. Tweet us, Facebook us, Google Plus us, whatever it takes. If you can spread the word, the ones who can fund will find out! I've set up an official Facebook page at this link: https://www.facebook.com/johnsonheartofthefamily I will be adding pics and general goodwill information on how the campaign is going as well as general Johnson family goodness. Feel free to like us!