Candice Hildebrant

In early March, just a few weeks before she died, Candice Hildebrant posted her story.  I will let her tell it in her own powerful words.

Candice was in her thirtys, a tireless advocate for a single payer healthcare system, and an activist in Suffolk county.

Please consider a donation towards a Go-Fund-Me collection to fund future college tuition for a young daughter she leaves behind:  gf.me/u/rviu6w

 


I am one of of the many people in America who is suffering from the broken healthcare system we have in our country right now. Every single day of my life I have to fight against my multiple chronic illnesses. It is a daily struggle that sometimes I win, and many times I lose. I fight these battles every single day, and I fight them with no support from the people in government who are supposed to be there for me.

In my experience the government has looked the other way and ignored the many New Yorkers and even more Americans like me who are in dire straits due to mounting health care costs and coverage gaps.  My family and I are in trouble, and our government officials, who have been elected to speak for us and guide our state and country to a better way, are failing us. We need help and we need it now. We don’t have the luxury to wait and see what plans might come down the road. We need serious health care reform now, otherwise people will lose their homes, their families and their lives.

In January of 2014 I went to my family doctor after having been sick for days. I wasn’t able to breathe, my chest ached and I felt so sick – I thought I had the flu. I was given different medications and told to rest. A week later I was back in my doctor’s office, having gotten worse. Again I was given more medication and told to rest.  I couldn’t breathe, I couldn’t get out of bed, I was so sick my husband wanted to take me to the hospital then and there. But we didn’t go – it would cost just too much money, and after all it was just the flu being compounded by my asthma.  So instead I went back to my doctor’s office, where I was told by the doctor there was no other choice – I had to go to the hospital. My lungs weren’t working and I wasn’t getting enough oxygen, so I was taken immediately by ambulance from the doctor’s office to the hospital.

I didn’t leave that hospital for weeks. I was put on a breathing machine while they ran test after test to find out why I wasn’t able to breathe, stand or even sit up. It clearly wasn’t just my asthma aggravated by a virus.  My husband was at a loss, and my young daughter – only 5 at the time – was so confused as to where Mommy had gone and why she couldn’t see me. Eventually I was well enough to leave and go home, still not knowing what had caused this. I was able to be back with my husband and my daughter.  But I still wasn’t well enough to walk on my own, shower on my own, feed myself or even get out of bed by myself.

As a small family in a small apartment with already mounting medical costs, my husband couldn’t stay home from work to care for me. We had no money for a home health aide and our insurance wouldn’t cover one.  This meant my husband would make a lunch for me in the morning, put it in a lunch bag and leave it on the bed for me to eat while he was at work. I was left at home alone, not able to even walk on my own, with a cooler bag containing some food and drink and a commode next to the bed. This was the best my family could do, all we could do.  It took months of living like this before I was well enough to leave my house and go back to work.

Ever since then, I have been sick; I have never fully recovered. I saw doctor after doctor since 2014, trying to determine what was wrong with me – why am I still ill? I visited asthma specialists, pulmonologists, orthopedists, rheumatologists, neurologists, hematologists etc., a neverending parade of specialists. Eventually, over the last three years of waiting and searching and being ill, it was determined I have a variety of chronic illnesses – all of which stem from a double whammy of progressive autoimmune diseases. l was in a desperate search to find the right specialist – if there even was one – that could help me.

Finally I received the answers I had spent five years of pain and frustration struggling to find. I have psoriatic arthritis, fibromyalgia, chronic pain disorder, PTSD, bipolar disorder, anxiety and asthma – all of which have no cure. I face a lifetime of fighting these illnesses, two of which are progressive.  Since they are progressive I have to receive consistent, regular treatment so I can slow the progression, otherwise it will get worse than it already is. I am a fighter, but I need comprehensive medical coverage so I can effectively fight these diseases! For every one of those doctors, hospitals and medications I needed, there was and still is a cost — a big fat bill associated with each and every one of them.

You see, I have health insurance – “good” health insurance (if any of the health insurance companies we have can be called that) – United Healthcare Oxford.  My daughter and I have this health insurance through my husband’s job. Our insurance has a $2500 deductible per person, per year. Our insurance costs us $368 per month. In addition, I have to pay over $250 per month in co-pays to see my doctors. I take 16 different medications. Each one has a prescription co-pay, and in all, it costs more than $600 per month just to pay for these medications. This means over $1200 per month immediately goes to life-saving healthcare costs, assuming I don’t need any special treatments that month (which I often do), and excluding the $2500 deductible.

Obviously, the crushing costs of all this is not something we have been able to maintain; we are drowning. I have thousands of dollars in debt from medical bills. They go all the way back to the hospital bills from 2014. But this debt isn’t just mine – it hangs over my entire family’s heads. There are times I have to go without the medical treatment I need just to keep the lights and heat on. There are times I have to choose between getting my daughter the basic things she needs, or paying the rent, over the medical care that I need.

My family lives in an apartment above a store on Long Island.  My husband has a good job. I used to work too until June 2017, and the one and only reason I had been able to keep my job for so long while being so sick is FMLA.  I worked for as long as I was able to, because now that I am enrolling in disability, which my doctors tell me I should have done a long time ago and have hurt myself by not doing until now, we will not be able to afford our apartment or pay our bills.  My disability payment would cover less than one paycheck per month I was receiving while working. That is not enough to cover even the medical costs we have every month.

Every minute I am home I am lying in my bed sleeping or resting.  I am not able to cook, clean, take care of my family, play with my child – none of the things most people take for granted. I cannot even take a shower without becoming tired and in pain. By the time I am done washing my hair my arms feel like they are going to fall off from the exhaustion. This is my life now.

All of this because I am unlucky enough to become a sick person in the lower middle class in New York, in America. People like me are stuck. We used to make too much money to qualify for Medicare or financial assistance, and yet not enough to pay the medical bills and all our other bills without going bankrupt, or going without medical treatments and care we need just to provide for our family.

Now that I am unable to work at all I have filed for disability. I was denied in my initial application. I then had to file an appeal. I have now been waiting over 18 months just to get a hearing date – not even the hearing itself. We are down half of what our family was making. My husband alone is trying to keep this family afloat by working three different jobs. How in the world does the government expect a person who has become disabled to live while their disability application is processed? How are we supposed to pay the rent, the bills, buy food, afford medical treatments? We can’t. This slowly sinking ship has become the Titanic.

I am 35 years old with no savings. We own nothing and have nothing to show for all the hard work my 39-year-old husband and I have put in over the years. Both of us have worked since we were teenagers, and we have nothing to show for it. With the way things are now in our state and country, I don’t see how we ever will.

In this great progressive state and nation, why is this a reality for my family and so many others? How is this allowed to be ignored by so many? How is this the America we have when we know this is not the America we want and have believed in? My family and so many others need your help right now. You can help us by supporting the NY Health Act (A5248/S3577) – a bill here in NY, and supporting a national single-payer, universal health bill federally, such as H.R. 676, the Expanded and Improved Medicare for All Act.

I believe these types of bills will save people’s lives. These bills can alleviate the pain and shame associated with being chronically ill by stopping the accumulation of crushing debt that comes with being sick. These bills can help people get the medical care they need without having to choose between providing for their family or going to the doctor. These bills will help people who are afraid to go to the hospital when they are ill because the cost is just too high – and that is when terrible things happen, as I know all too well. You all have the power to do something about this. So I beg of you, stand up for me. Stand up for all of us that cannot stand on our own. Stand up and stop this. Support universal health care – and please, I beg of you, do it now, before it is too late.

Image Credits: Candice Hildebrant
Published on Medium.com

As I sit here in my here in my hospital bed I am trying so hard to not feel that sense of hopelessness that invades at the back of your head. That voice that says “your always going to be sick, just give up”. Well — I refuse to give up, but some days are a lot harder than others. Today is one of those days. I have been in the hospital for 8 days now and they still haven’t said when they are going to discharge me. I have been seen by a neurologist, infectious disease doctor, pulmonologist and am still waiting on a rheumatologist. I cannot tell you how much this situation sucks. All I want to do is be out of this hospital and home with my family.

Right this minute my IV antibiotics are leaking out and I have called the nurse twice to let her know that my IV is leaking all over me. No one seems to care. I am low maintenance, I really am, but come on people — basic care is needed! How is it that I am the only person who finds an issue with the fact that my antibiotics are leaking out of my arm? I have had the same IV in since I came to the hospital. IV’s should be changed every 3 days — I am going on 5 days at this point. It hurts and it bleeds and it’s leaking the precious antibiotics everywhere. I even pushed the call button for the nurse before I started writing this and she still hasn’t appeared. It is so frustrating and infuriating.to be helpless like this and dependent on others, who are frankly failing big time.

I finally got a nurses aid to come in and I told her my IV is leaking and bleeding and her response was “I’ll tell your nurse”. I have heard those exact words before — about 20 minutes ago when I first called for the nurse to tell them my IV is leaking. It isn’t just leaking, it hurts — a LOT. Finally the nurse appeared and said “well that failed at the right time, your antibiotics are done”. Leave it to me to have a fortuitous IV failure.

Being in the hospital all alone day after day is the most depressing thing I can think of. You sit there endlessly with no motivation or anything to do except be in pain. I’m currently in here for pneumonia and the flu — a double whammy. And on top of that, my Psoriatic Arthritis has flared up so badly that I am swollen like a sausage. My hands and feet are three times the size that they should be. I’ve never had a flare up this bad before, but it does make sense that the swelling would come into play because I have been off all my medications for PsA for about a month. You see, I cannot take my PsA medications if I am sick, as they lower and damage my immune system. Therefore, when I am so sick I feel like I’m gonna die, I then get the added bonus of a PsA flare.

The hospital is such a trying place. There are so many people, plus there are so many sounds — the beeping of a million machines. Not to mention the atmosphere — the pain and suffering coming from every room and every look from a person. In the hospital there is no happy, cheery people, just sad and tired patients who want to go home. I am definitely one of those people.

Tonight is my daughter’s concert — she plays the violin. And I’m not going to be there! I have never missed an event of hers — come hell or high water I am always there. Unfortunately this time I am going to miss it, and it is killing me. The fact that I am missing one of her performances hurts more than all the pain I am in now combined. She is my reason, my everything, and I feel like I am letting her down. Logically I know that there is no way I can be there, and she knows that too. My husband promised to record the show so that I can see it.

I saw the show — she was amazing! I am so proud of her. I wish so much that I was there in person to tell her that.

I have a feeling that I am getting out of here soon — I just need one more test and a good result on it and I can hopefully blow this Popsicle stand. I know I just need to keep reminding myself that this is temporary. I will be out of here before I know it and my family will be waiting for me. That thought is what gets me through the day — the knowledge that I am missed by my family and that they want me to come home. Well, I am coming home as soon as I can!

About D. Posnett MD

Emeritus Prof. of Medicine at Weill Cornell Medical College
This entry was posted in ACA, Health Care, Uncategorized and tagged , , , . Bookmark the permalink.

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