My Story

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My Story

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money-in-medicine-bottles-300x199(Editor's Note: Today, we welcome a new blogger, Casandra (@comicvixen).)

Where to start?

Well, this being my first blog on the site, I guess I should start by introducing myself. My name is Casandra and I am happily married for the last eight years. When I met my husband, Marcus (I call him Marc), we were both college kids with way too much energy and dreams for conquering the world.

His last year of college, Marc went to work in Yosemite. What was meant to be a six-month adventure turned into two years and he was better for it but what did happen was he discovered he had allergies, really bad. He got so sick he had to leave and go stay with his sister in L.A. Initially, he thought it was nothing he couldn't fix with some medicine. Turned into him having a major surgery on his sinus. He had some trouble with his sister after that and I convinced him to move back to Arizona so I could help him. I knew what I was getting into and I had a steady job, money in the bank and all I cared about was him getting better.

For a while he was okay, we started "officially dating" after he moved in and then we got engaged but a year later he got sick, again. We saw several doctors, at this time he had his own insurance, and they all said it was nothing but after several weeks we noticed a very visible lump growing on his forehead. One doctor told us, "It's just the natural shape of your head." Sadly, two days after this I get a call from him that he was on his way to the ER and leaving work early because he had started bleeding from his eye. Yikes!

Getting to one hospital we are told that they have to move him to a specialty hospital. What kind of specialty hospital? One that specialized in neurosurgery.

What had happened is that a seemingly harmless sinus infection that should have been treated with the many antibiotics he'd already been given had spread, bursting his front left sinus, eating away at the bone in his forehead (hence the lump) and also had done considerable damage to the lining of his brain which was now 'thinner than Saran Wrap,' we were told. This results in an emergency surgery to clear the infection. A surgery that should have lasted four hours instead lasted over eight hours. They had to cut open his head, saw through the bone to get to his brain. I was frightened and Marc being the stoic person that he was seemed not to be phased. In fact, he actually did get better.

They claimed it was a fluke and with allergy shots and medicine, he'd be just fine. And he was, for almost eight years. Until in July of 2012 he started getting sinus infections again. We had told the doctors of his previous experience and none of them seemed to be worried. Again, antibiotics were prescribed. In September, I noticed the lump on his forehead again. Not horrible but noticeable. Then he got a cyst on the corner of his eye. So, I took him to the Urgent Care; again, antibiotics because it was too solid to actually lance in the office. We immediately left the UC and I took him straight to the ER, unconvinced that it was that simple. Yet, the ER says the same thing and NEVER gave him the CT scan which I specifically asked for SEVERAL times. This was on a Saturday. That very next Tuesday, I received a call from his job and the paramedics; Marc had suffered a seizure while at work.

Fear swept me but I am not one to panic. However, seeming that I had just lost my father while I was at work earlier last year from cardiac arrest, I was not calm, by any means. When I got to the hospital, I was told that they would be transferring him, again to the same neurological hospital they'd transferred him eight years earlier to do the same exact surgery.

We spent six days in the ICU. He was barely responsive but not in any particular traumatic state. Luckily, it was determined they didn't have to completely cut his head open this time. They performed the surgery through his nasal cavity.

The results: ACUTE INVASIVE FUNGAL SINUSITIS

Apparently, this type of fungal sinus infection only happens to people with weakened immune systems and typically only those of cancer patients (because of radiation/chemo), diabetic, or AIDS patients. Which my husband is none of the above. After that first surgery, he was on IV antibiotics and anti-fungal meds for three months, then they told us he'd have to take both antibiotics and anti-fungal medication orally for another six months. This was supposed to cure him.

Yet, before he could finish treatment, in October, he took another MRI & CT and back into surgery he went. We were in ICU again for another six days. In January 2013, the same... another six day stay in ICU. Now, three surgeries later, and several suffered attacks from seizures, we are scheduled again for March 26 for yet another surgery. Every time he has a surgery, his medicinal treatment starts ALL OVER AGAIN. Every time he has a seizure that is three months he cannot drive, by law.

In January, though, I knew something had to be done. It wasn't that I didn't trust his doctors, they are doing their jobs but they have dropped the ball many times with renewing meds and scheduling appointments. I said to myself, I need to do EVERYTHING possible (understanding the mortality rate for this type of illness is quite high) to make sure he survives this. Plus, they didn't know what kind of fungus until, literally, a month ago. He's been having this repeat issue since September. We needed answers. So, I called his insurance and found out that they covered The Mayo Clinic. It took until March 13th to see someone because they were that booked. But now that he is in the system, I can breathe. In one week, they've scheduled him for second opinions and to see various other specialists we have been asking his other doctors to refer us to since September. And I am thankful but still completely overwhelmed and scared.

Overwhelmed because his short-term has just turned long-term absence from work. Overwhelmed being the only dependable income and even that is not promised because I am encountering issues with his doctors actually filling out my FMLA paperwork to secure my job while I have to constantly take off to drive him from one appointment to the next. Scared because this is FOUR surgeries, FOUR! I mean, really, how much more can Marc take? Scared because he is showing severe signs of depression and he knows me and how overwhelmed I get even if I am not showing it so he won't talk to me and I can't get him to talk to anyone else. Scared because we are living paycheck to paycheck on a wing and a prayer that we'll still have a place to live next week. The debt is mounting from hospital stays and one of his medicine's cost me $500 a month, A MONTH! I wouldn't even joke about that amount. Scared because I don't want to think about what would happen if I lost him but I am constantly being forced to think about it and often. And mostly scared because what if what I am doing ISN'T ENOUGH? What if I am not fighting hard enough to get things done for him? What if I am dropping the ball and my hesitations, fears and worries are doing nothing more but making things worse for him?

And I know he feels powerless. With the seizures, I don't let him leave the house unless I'm with him. He's stuck inside all day. I won't let him cook or take a shower unless I am home. I have baby-proofed the house in fear of what would happen if he has one when I am not home. I call him constantly. Every break at work, I am on the phone with him. If he doesn't pick up, I freak. I will keep trying past my break until I can reach of him. My stress is causing him stress. I know it is even if he doesn't say it. And when I ask him how he is, he says, "I'm more worried about you than me."

I just find myself exhausted... mentally, physically, spiritually and emotionally.

And this is where I am. I feel stuck and somewhat defeated. I know I am doing all I can but I feel like what I am doing is absolutely nothing that is helpful.

Any advice?

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Casandra Porter

Thank you, Kelly, \r\nI appreciate your words of kindness. Yes, I am checking for everything you've mentioned and the depression conversation has been had with him and his MD. He actually made the decision himself to ask him primary about starting medication to help him with it. I was very proud of him for taking that step because my husband likes to lead people to believe that all is okay with him. But after 8 years of marriage and 14 years of friendship, I can tell when things aren't right. He's normally the resident comedian and love his video games. When he stopped laughing and even trying to make others laugh and pretty much refused to play video games (when normally I have to beg him to get off the game LOL) I knew it was a problem. He hasn't thought about hurting himself, he said, but he has noticed he is very unhappy. \r\n\r\nCasandra

Casandra Porter

Thank you, Kate, for your suggestions.\r\n\r\nI have a few friends that have helped on occasion. My mom does what she can, which is making sure we are fed. She doesn't drive. His mom suffers from kidney failure and diabetes and is also the full-time caregiver to his father who was diagnosed last year with ALS and dementia. \r\n\r\nVolunteering at an elder day program sounds like something he'd love to do. I know my husband is extremely antsy about being home all day and not being able to get out and do things. If I could find some kind of program like that in my area, that would be a huge stress relief for me and for him. \r\n\r\nThank you so much for the options. I'd never thought about that and appreciate you sharing with me. \r\n\r\nBlessings to you and your family.

Casandra Porter

Wow! $19,000 is ridiculous. Yeah, it was $5000 without insurance, $2500 with insurance and then we went through an assistance program and still have to pay $500 out of pocket per month. We only lucked out when he met his maximum out-of-pocket and started getting free services/coinsurance. It helped but now it's a new benefit year and back at square one. \r\n\r\nI appreciate your story, though. I work in healthcare and would hear my patients say, \"It's too expensive\" and now being in that situation I have so much more understanding of how insane the costs can be. \r\n\r\nBlessings to you and your family.

ejourneys

Hi and welcome, Cassandra. I am sorry that you and Marc are and have been going through so much.\r\n\r\nAs the others here have said, you are not alone. Our stories are unique, but we share a common ground that often is not part of the \"outside world.\" Bless you for all that you are doing and for all your care and advocacy.\r\n\r\nThis place is a great and very supportive sounding board. We also brainstorm here. I've learned and continue to learn a tremendous amount from everyone's experiences.

Peggikaye

Hello and welcome. \r\n\r\nIt's a lot ...\r\n\r\nbut in this space, you're not alone. \r\n\r\nI'm caregiver to a husband as well .. and many times feel too young for all of this. I'm hearing some of that in your post ... \r\n\r\nI understand the fear .. \r\n\r\nLike Denise said .. use this space as your sounding board. This place is full of people walking a similar road. \r\n\r\n(((( Hugs ))))

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