How to Guide to Fighting For Health Care Reimbursement

Isn’t it ironic. I get medicare!! Two and a half years of justifiable illness, and I’m eligible for medicare part A & B. Only downside, it starts in Oct. 2008, after my transplant. Ha! Go figure. Of course, there are still benefits.
I’ve had a long hard fight with my cancer, but alongside my health struggles came the inevitable fights with my health insurance company. I was going to write about how to fend off the bills, but thankfully, someone has done it for me. Check out Sue Redfearn’s Nine Secrets Health Insurance Companies Don’t Want you to know at http://living.health.com/2008/03/07/nine-secrets-health-insurers-dont-want-you-to-know/
In the past year, I have unknowingly over paid $750 dollars in bills that should have rightfully been covered by my insurance. This is money I now know about. Once that money is gone, it won’t come back. Over the past two and a half years, every PET scan has been accepted and then rejected equaling over $60,000 in charges (Twenty PET scans at $3,000 a piece). Fight! Do not pay.
Why the discrepancy? The health insurance industry is a for-profit industry. Yes, some fat cat business person is profiting off of our suffering. You can thank former Pres. Nixon for this idea. Hospitals are not for profit.
How can a not for profit pay a for profit industry? Hospitals try the path of least resistance, passing the difference in cost or the refusal of payment on to the patient. The best suggestion to combat this, don’t pay until you are sure you owe. Work out any payment plan with the billing department. Communicate and try to be nice when you do it. Twenty dollars a month will keep you out of collections and in treatment while the details are worked out. This $20 is tax deductable, and the remaining balance is at 0% interest or same as cash. Also, hospitals can write off bad debt payments. The rural hospital where I was formally employed had under twenty beds, but donated over one million dollars in health care to the community yearly.
Be clear, the hospital is not the bad guy in this. The struggles with the insurance companies force hospitals to hire more full time personnel to fight on your behalf; this causes health insurance costs to rise. Medical equipment is also a for profit industry dumping on the not-for profit hospitals. These along with other factors causes health care costs to rise at a rate 3x that of inflation. Inflation rose 13% from March to April in 2008. Do the math, health care costs will rise over 40% this year. And you thought the rising cost of oil and food was scary.
Our health care industry is headed for implosion. It is the next oil crises or housing bubble, and it’s coming soon as baby boomers age, the nursing shortage increases, and the insurance companies seek bigger profit from our health crises. It should be the top of the priority list for the upcoming presidential race, but it’s not getting any attention. Is it not controversial (or cancerversial) enough? Force the issue people. Some suggestions for reform will be coming soon.

Slideshow

Ideas for sick parents

After just four days in kindergarten, X was diagnosed with Strep throat. Four days! I had only kept him home because he seemed a little sick and I wanted one last opportunity to do some super mothering. I wanted him to know that he would always be taken care of, and that seems to be done best by letting him be the sick child for the day, even if he is not. He gets to sleep in mom and dad’s bed. I pile on pillows and comforters. He gets to control the remote. He gets to drink all the fluids he wants. I bring him food in bed on a tray. When he doesn’t need anything, I lie beside him, snuggle and read. That is super mothering TLC. Except, he was really sick this day, and oddly enough, he enjoyed it. Our child is not the sickest in our family, I am, then my husband, and then him. Obviously, this causes severe anxiety. I can’t begin to think what his imagination has come up with, but I’m sure some of it is the scariest truth, that he could become an orphan. It’s become clear, my family has been diagnosed with cancer. My community has been diagnosed with cancer. But today, I want to tell you how my son has been affected by cancer, and how my husband and I have rolled with the punches to help him cope with our disease. It’s theorized up to 10% of what is learned is discovered in the womb. If this theory is correct, Xander is educated in health assessment, pharmacology, pathophysiology, and microbiology. If this theory is incorrect, he still has a broad medical education for a five year old. At three, when I was diagnosed, my husband and I decided not to bother him with details. We felt my disease would be in remission in six months. We were hoping Xander would never remember. Since things have not turned out the way we planned, and my cancer turned into a battle lasting years, we starting buying books on the subject. When none of the books fit my quality criteria, I wrote my own to open discussion. When he started to exhibit separation anxiety, I hired a child therapist. When the therapist did not live up to my standards, I fired her, and then another one, and another one. Oops. Instead we opted to surround ourselves with friends and family who are enjoyable and reliable. We are very blessed. I call these people my “framily” or my friends who are family. These are the people who grocery shop for us, who clean our house, who call to check in, who take Xander when we need a break or he needs a distraction. These people are reliable and stable, and that is what Xander needs that we can not provide. My husband and I have also gotten creative. We purchased a dry erase calendar and wrote down my appointments and when I could expect to be hospitalized. The scheduling was effective, until side effects started to send me to the hospital unexpectedly. Then we called in the recruits to distract him. We bought him toys at the hospital and allowed him to run around like a maniac on the children’s floor so he could associate the hospital with a feeling of safety and well being. We found the outdoor playground. My family will take him on fun outings, like to the children’s museum or Red Sox games, so he can associate Boston with happiness as well. We role played how mommy was feeling and how she would be taken care of with his dinosaurs and super heroes. We made up long elaborate plays with alternate endings. I explained my medical equipment. I allowed him to touch it under supervision. I also allowed Xander to help with my care when he was able. Tasks such as bringing me water or pretending to cook me meals or wiping down countertops with wipes helped him feel empowered in protecting me. He turned into a professional hand washer. We did eventual find some effective books, such as “I know I caused this,” which deals with the narcissistic magical thinking that of his age group. “Sir Chemo” and “I’m Having a Bone Marrow Transplant” are both great interactive resources that children can write in and color, like a young child diary. Xander has also significantly responded to pictures. We have used children’s anatomy books like “Funny Bones and other Body Parts.” We’ve shown him my PET scans and my CTs outlining the difference between what is normal and what is cancerous. At four, we decided to have him participate in my medical appointments under the theory that his imagination was probably scarier than the truth. He helped put stickers on my body when I was getting measured for radiation. He viewed the machine before my treatment, then he was never interested again, which was our ultimate goal. We’ve also found that just like adults, Xander needs friends he can rely on and talk to. This is difficult at this age, but we’ve found the children of our close friends have been a wonderful source of support. We’ve spoken to our friends about our situation. We have had an open dialogue and they in turn have had an open dialogue with their children. These children can then support our son to the best of our ability. My husband, who could not be in two places to provide support, opted to stay with Xander. He is the rock in the family. My parents also take a very active role. They have made their house a second home so moving Xander when I am in isolation has not been an issue. It’s a blessing if people have these options, I understand many do not. The best advice I can give is kids are resilient, just do the best you can. As far as school goes, I contacted the school nurse to notify me immediately is strep, foot and mouth, etc. are going around. I requested a note be sent home to parents reminding them that children should not be sent to school with a fever. The request was denied, but the class did do a review on germs. It’s the best that can be done. If anyone has other suggestions for coping with the affects of parental illness on a child, please comment, we would all like to know.

I sold my husband for health insurance

I sold my husband for health care coverage. I know what you’re thinking. I’m being extreme. Before you judge, let’s do some math. Let’s look at the real price of health care.
In April 2006, when I was diagnosed, I had short term, long term, and life insurance. My husband held the health care policy. I was making $65,000 yearly as an RN with shift differentials, over time, and bonuses. My base pay, however, was $36,900. This was calculated based on my regular time day shift pay at thirty-six hours per week. When I became sick, short term disability insurance only covered 60% of my base pay. That equals about $22,140 yearly. That’s a pay cut of $42,860. Ouch, that is one tough pay cut to swallow.
Then, to add insult to injury, I had to have a biopsy to confirm my diagnosis. My insurance deductable was $2500 at the time. I reached that number in one swoop. That’s $22,140-2500= $19640. Then I would see my specialist weekly at $30 a visit, and the medications for the nausea caused by my chemotherapy were $10-40 each. These expenses were known costs associated with my illness that my husband and I were able to manage. My co-payments equaled $3600 in the first year of my illness. $19,640-3600= $16,040.
Other unforeseen expenses started to tally up. I had to travel seventy-five miles round trip to the hospital for treatment. Cha-ching. My husband took time off work to care for me. My son had to attend day care full time since I was too sick to care for him. I needed the visiting nurse to come to my home. I needed supplies for my central line, an infusion pump, and long term antibiotics.
After six months, I was no longer considered employed, and my life insurance had to change hands from my previous employer to me. The life insurance company to one look at my diagnosis of lymphoma and dropped me like I was hot.
Finally, my health insurance company started to refuse reimbursement for my PET scans. At $3000 a pop, the gold standard for cancer staging was not within my budget, and I would spend my few precious healthy moments on hold fighting for payment. However, when I was not healthy, my husband would give the hospital our credit card number for fear my illness would ruin our credit for life.
Then, while I was undergoing my bone marrow transplant, the short-term disability company called my husband to inform him that I had not sent in my social security award letter. He sent in the letter, only to be informed I had been over paid $1242 monthly from October 2006- March 2007. The balance had to be paid back. He again reached for the credit card. That equals $7452 or roughly half my income. $16,040-7452= $8588. This number does not include travel 70 miles roundtrip to Dartmouth Hitchcock Medical Center, and now the 400 miles to Dana Farber. The lunches I had to eat. It does not include the $5000 yearly I was paying in daycare. These numbers put me in the red before mortgage, taxes, insurance, car payments, oil, etc.
I am getting a middle class beat down. My American dream is getting a butt kicking. Yes, this is all tax deductable, but my $1500 tax return was a slap in the face against all my expenses.
Then in February 2008, I was again in remission, my husband’s crohn’s disease began to flare up. He was in constant pain and I pushed for him to pursue treatment so our son could have at least one healthy parent.
He was told, at twenty-nine, his Crohn’s had caused scarring in his bowel and surgery was his only option. The surgery would require an eight week period of recovery.
My lymphoma reoccurred in March 2008. I was told I had exhausted traditional treatment and should look into the major cancer centers in New York and Boston for trial drugs and an allogenic stem cell transplant by an anonymous donor.
With the support of our friends and family, we decided to pursue the medical advice given to us by our physicians.
Four months later, on July 7 2008, I started a clinical trial at Dana Farber Cancer Institute in Boston.
On July 9 2008, my husband underwent a bowel resection at Dartmouth Hitchcock Medical Center.
But wait, he was our insurance policy holder! No work, means no insurance. No work means you have to pay the dreaded COBRA at $1600 a month for a family (and that’s a deal. Health care cost go up at 3x the rate of inflation or 40% in 2008) with a $6000 deductable. Failure to comply with these rules and allowing our insurance to lapse would label us as having “pre-existing conditions” and make us uninsurable for life! We had all ready paid up our $4000 deductable for my health (an increase due to the change in his companies insurance) plus countless dollars in traveling and co-pays.
Disability also means you receive 60% of your base pay. Ouch, our wallets are hurting. Let’s do the math.
Let’s say my husband made $50,000 yearly at the time of his illness. He’s now down to 60% of his pay or $30,000. Not too shabby. This would bring in $2500 monthly tax free from disability insurance, but now we had to pay $1600 monthly to keep our insurance or $19,200 yearly ( $30000-19200=10,800). Then we would have a $6000 deductable ($10,800-6000=$4800)
From a solidly middle class family with an enviable combined income of $115,000 we know had Forty-Eight Hundred dollars for a family of three for food, taxes, housing, travel, etc.
Could you afford to get sick?
My husband spoke with his company who agreed to allow him to work from the hospital and from home on a laptop. Our solution to the daunting financial picture we were facing: My husband would have to continue working.
His surgery required twenty inches of his small bowel to be removed along with his ileo-cecal valve, three hundred sutures and staples, and an eight inch abdominal incision. He took less than a week off. He continued to work through a post-operative infection while I was receiving care in Boston.
Now that his eight week period is up, he is married to his company. Any person who is willing to work through bowel surgery for insurance lives in fear of losing his job. His company now knows this. If there is a choice between supporting me in my transplant or working. Working wins. My parents can take care of me.
I hope people are aware that my story is not unique. The health care system is the next big national crisis. Like oil soared and scared us into change, health care is set to implode at any time. Let’s make some changes before it’s too late.

Introduction to me

This is me, as of December 2006, Bald and beautiful. Here is me now. Take a peek.

I received another bill in the mail that has been fully rejected by my insurance company. Brigham and Woman's has sent me a bill for a dental evaluation. The “evaluation” was actually a review by their dentist of paperwork my local dentist and my dental hygienist (aka mom) had filled out for pretransplant testing.

Unresolved dental carries can spread bacteria into the body leading to such diseases as pericarditis in immunocompromised patients. Impacted wisdom teeth can also become infected leading to septicemia and ultimately death.

This was a bill Jon insisted on dealing with himself. I have long ago given up on dealing with insurance companies. I do not have the energy to wait on hold for an hour, only to be told I do not have the appropriate information, such as codes or what the hospital submitted as a diagnosis (hodgkin’s is rejected but nodular sclerosing is accepted). I no longer even open my bills. I get to angry at the system and frustrated at the situation.

Jon pays monthly for our insurance coverage. We also have a $4000 deductable. I lost my job due to disability. Our family has taken a pay cut, but our medical expenses have increased. We also now have to pay for gas to the hospital and co-pays. We do all this, but we still have no guarantee for the coverage we pay for.

This is why Aunt B is assigned to my medical bills. She has twenty-five years of experience fighting with insurance companies to remit payment to hospitals. She is a professional. I think she is the best. But Jon just had to deal with this bill himself.

The billing department at B&W called when I was trying to nap. I informed them that I was the patient, and I did not deal with my health care bills. My husband would be out of work at 3:30 pm. The woman informed me she would only be working until three, but to tell my husband the bill for my dental evaluation was rejected in full by my health insurance.

“I have dental insurance.” I informed the voice, who had not given her name. “Why would my health insurance cover a dental evaluation. It needs to be resubmitted.” It sounded like common sense to me.

“We don’t do that.” The cold bitch on the other line informed me. “You consented to be charged by submitting the paperwork.”

Excuse me! My mother is a dental health professional! I had never paid for dental care in my life. I had many qualified dentists who would have done the evaluation for free.

“Do you often call sick transplant patients and refuse to fight for coverage?” I shot at her. She responded she was just returning a phone call. I asked her how she slept at night b/c I'm not sure I could live with myself if I was her. I would probably be dead by now.

It was like verbal diarrhea. I wanted to reach through the phone and pimp slap her.

“I was just returning a phone call.” Was her retord. I heard her click and hang up.

I emailed Aunt Barbara about the situation and confessed my verbal assault on a billing clerk. She, of course, promised to look into it. I’m so lucky to have her. She informed me that generally in these situations B&W would send the bill to Dana Farber and the transplant billing clerk would roll the cost into a bill for pretransplant testing. It would then be reimbursed by my health insurance, and Dana Farber would pay Brigham and Women’s.

Hopefully, someday, I will make enough of an impression to stop these occurrences. Until then, I have Aunt B on the case.

I am a very bad patient

I am a very bad patient. I hear most nurses are. I’ve had many caretakers make excuses for me. Nurses are controlling. They know too much. Or they do not know enough.

I always thought that my being difficult was because of my personality. I do like to be in control, specifically of my body. I am meticulous and efficient, and I don’t understand how people can live any other way. My standards are very high. I will tell you how to do your job if I feel you are not performing effectively, even if I have no idea how to do your job. And I always think I’m right.

I’m only human. I am certainly not perfect.

With this said, I am going to admit a thought process that I don’t believe a healthy person would understand, but everyone should be aware of. I read an article in Newsweek recently about young patients with chronic diseases, AIDs for example, that decide to test whether their medications are really necessary and end up dead. They used the example of two nineteen year old AIDs patients at Montefiore medical this summer. My response was “Only two?”

I remember the teenage dead AIDs patients from my nursing rotations years ago. I remember the song and dance we would do as health care providers trying to revive bodies we knew were dead, but either couldn’t let go or needed the practice to revive others. It’s morbid, but it is better to practice on a child that has no chance of survival on arrival than a 60 year old heart attack patient that may survive twenty more years. It’s what they medical world calls a “slow code.”

I remember our discussions afterwards. Disbelief. How could they have stopped taking their medications? How could they have played russian roullette with their lives? How adolescent to test the boundaries of their diseases and die. What the hell were they thinking? I would always go home depressed.

I’m going to tell you exactly what they were thinking.

I knew my potassium was low. My practitioner had called to inform me I needed to be supplemented on Friday. I ignored her phone call. I told myself I was done being sick. I told myself my body could fix itself. My brain challenged my body and the challenge was on.
Potassium controls the influx of the electrical impulses necessary to control your heart beat. Too much or too little causes cardiac arrhythmias. Prior to my illness, my coworkers and I would discuss methods of suicide. K+ overdose was always popular.

I knew exactly the ramifications of refusing to take my potassium. I did it anyway. I was not trying to kill myself, but I was not trying to live a long healthy life either. I was wondering, if my body can not survive without these medications, was I really alive? And if I knowingly refused to take the medications to sustain my life, was I committing suicide? I decided I was not. I was taking control of my illness, and allowing the cards to fall where they may.

My heart started misbehaving at the bar. I had decided I was going to be a normal fun twenty-six year old. I’d been to an adult toy party in Unity. I’d been to a Battle of the Bands for ALS research (Peace to Steve Meersman), and I had moved on to the bar for some munchies.

Suddenly, I couldn’t think. I couldn’t calculate the tip. I thought I had overdosed myself. I thought I’d gone on a bender and couldn’t handle the combination. Then I thought I was having an anxiety attack. Then I thought my heart was about to explode.

“SHIT! I changed my mind!” I thought. I made a very bad decision. I don’t want to die. I killed myself. I’m going to hell. I’m a bad person. Call a priest. Breathe. Why can’t I feel the air moving. I can’t think.

My cousin raced me to the hospital. She called in advance, but didn’t mention my name. I think the ER was hoping for an anxiety attack, but unfortunately, they got me at the door. High off my ass from party time and in super ventricular tachycardia.

I couldn’t focus. I racked my brain for a reason to survive. What was my motivation to live? My mind drew a blank. I’d used all my good reasons before. I couldn’t take the pain anymore. My family would survive without me. I could no longer do the things I enjoyed. I would be disabled for life. I had nothing left to contribute to society. I was a drain on the system. If I could just focus.

“Potassium” I gasped, “Couldn’t take.” Breathe. “Low.”

“Have you ever had adenosine before, Hillary?” the doctor asked.

“What?! No! I don’t want adenosine!” I shrieked. Now I was really being punished. God must be trying to make his point very clear I raged. No person in their right mind who knew how adenosine worked would want it in their body.

Taking adenosine is somewhat like restarting a computer after installing software. To have your computer run the program correctly, it needs to be shut down and restarted. To have my heart slow down and beat properly, adenosine would shut it down for six seconds, and then my heart would restart at a normal rate.

Six seconds is a long time for my heart not to beat.

It’s all fun and games when I was giving it to someone else, when it was somebody else’s heart I was playing with, but my own, absolutely not.

I wanted to tell them that I had known about my potassium. I wanted to confess that someone with my education who knowingly refused to take supplementation and almost sent themselves into cardiac arrest should not be given an opinion, they should be strapped to the stretcher, gagged, and forcibly treated. I didn’t. I decided I’d ask for a prescription for anti-depressants later. Anyone who was in my position and was not depressed was crazy I thought.

If this was the only conflict while I was in the ER, I might have left with my dignity intact, but this was just the start.

The ER opted for lopressor, which was not so scary, and K+ replacement.

Since I was previously employed in this exact ER, I was blessed to know the staff, who I enjoy very much. However, I was on a bender. I did intend on going home and getting some play from my husband afterwards. I had gotten dressed up for the occasion. Imagine their surprise when they go to strip me for my EKG only to find me in my whore underwear. I was told they would just work around my dress for tests by a group of red faced men.

Then, my blabbering self couldn’t remember my medications, and when my purse was searched to review my prescriptions Heather decided to use the penis pencil I had received at the sex toy party, biting the tip whenever she became nervous or frustrated, to fill out my paperwork.

I forgot to tell the IV nurse tegaderm tears my skin off until after the IV was dressed. I think I need to tattoo the information on my forearms, right below each antecubital .

I was cold and couldn’t control my shaking, which I thought was hysterical. I informed my family and the medical staff that I should be called “twitchells.”

I refused the ativan, which for most people descreases anxiety, but for me causes amnesia. It also increases the likelihood that I’ll become a feisty bitch with no boundaries. All bets are off when that stuff gets in my system.

My husband showed up and I insisted on referring to him as Joe Black, from the 1992 movie with Brad Pitt as an emotionless death incarnate, because I kept forgetting he was there until he popped into my line of vision.

I told my mom she was going to give me an anxiety attack when she came rushing to the ER and kicked her out.

Meanwhile, I thought I was a hysterical one women party, and would not stop laughing. I told the EMT that the nightlife in Claremont sucked, and I was there to get back to Boston as soon as possible. I’m not sure if she understood my joke.

Conveniently, I was the only patient that evening, and since I was a previous employee, the staff treated me like gold despite my misbehaviors. It was a quick trip, but I never did admit I knowingly refused to take my K+.

Being a non-compliant patient is not a risk I am willing to take again, but from my experience I can only surmise that each of those AIDs patients had knowingly decided to take control of their illness. They gambled and lost. I do not believe that their death was the cause of an adolescent immortality complex. I also believe that if I felt the way I did, with a disease that I can acknowledge in public, with a disease that everyone sympathizes with, a disease that does not come with a scarlet letter, then the impulse for AIDs patients to test death is more overwhelming. I’ve seen two hundred patients in one twelve hour shift in an area of the Bronx where the HIV infection rate is one in three. No one has ever admitted to me they had HIV.

I hope health care professionals can read this confessional and understand where I as a patient, and others like me, are coming from. We often risk our lives and suffer in treatment without results, stopping our medications is not an act of defiance and stupidity. It’s an act of independence. It’s a personal choice.

Real Women Are Bald

Real Women Are Bald
Surviving

February 22, 2007
The last thing I remember seeing was a Doctor holding a syringe with a milky substance to my IV. “I’m giving her the propofol.” He announced to the CCU room packed with MDs, nurses, and respiratory therapists. I struggled to get another breath in then. . . nothing.
Darkness.
I woke up after three hours thinking I had one great nap. Except, I had been sedated and ventilated for a week. I was very close to being summarized by my obituary:

Hillary St.Pierre, 24

Hillary St.Pierre, 24, passed away after a courageous battle with lymphoma.
She graduated from Fall Mt. Regional High School in 2001 and from The College of New Rochelle with a degree in nursing in 2004. She worked in the Intensive Care Unit and Emergency Department at Valley Regional until falling ill in April 2006. She enjoyed soccer, art, and knitting.
She leaves behind a husband, Jon Ford, and one son, Alexander. She also leaves behind her parents Nancy and Vic St.Pierre, a twin sister, Heather St.Pierre, and a brother Patrick St.Pierre, all of Charlestown, NH. She will be missed by multiple grandparents, aunts, uncles, and cousins. Calling hours will be announced at a later time.

It hardly seems fair. It seems senseless, another young life snuffed out by cancer. But that is not how the story ends. I survived. It’s how the story begins.
I learned about my week under anesthesia in bits and pieces from family and friends when I was well enough, both physically and emotionally, to handle the news. The news was grim.
I remember that morning, calling my Dad from my house.
“Hi, Dad. I’m feeling a little short of breath and I have a fever. I need a ride up to the cancer clinic so they can take a look at me.” I lied. I did need a ride, that much was true, but my “little shortness of breath” would not allow me to walk ten feet to the bathroom. He was over in five minutes.
I told him there was no need to hurry and to swing by Dunkin Donuts for my breakfast. We relaxed on the way to the hospital and chatted about work and how I was feeling. I had just received a bone marrow transplant 26 days earlier and had yet to regain my strength and energy. I mostly slept and I watched daytime television. Only in the few days previous had I been relieved of a babysitter, my parents and husband finally believing that I was well enough to care for myself for eight hours. Boy, were they in for a surprise.
I walked into the clinic ignoring my Dad’s insistence on a wheelchair and checked myself in. After 10 minutes, I took that wheelchair. I was tired, bald, and breathless. I weighed 100 lbs. and my eyes were sunken in with purple bags indenting them further. Not only did I need a wheel chair, I looked like a needed a wheelchair. He wheeled me over for my chest x-ray.
The nurse practitioner who assessed me I had never seen before, and wouldn’t recognize to this day. She did, however, treat me quickly and efficiently. Diagnosis: pneumonia, just a small pleural infiltrate in the right base. I would need to be admitted as an inpatient for IV antibiotics. I was in an infusion room in a half an hour awaiting a bronchoscopy that would take place in another hour. The bronchoscopy would hopefully identify the organism that had caused my pneumonia so it could be treated more efficiently with antibiotics.
I used the free time to call my family. I called my husband first.
“Hi, Jon. I’m back in the hospital… no, it’s nothing serious. I’m just here for a buff and shine. I have pneumonia and need some antibiotics. I’m going to leave even better than I came in. I need you to pack my bags though. Not much, I don’t think. I won’t be here long: four pairs of pants and four shirts and underwear. Bring movies too so I don’t get bored. I love you.”
Then I called my mother, who my father had all ready spoken to, but she wanted to hear the story from me.
“Yes, mom, I do have pneumonia, but it’s just a little pneumonia. I saw the x-ray myself. . . No, you don’t have to leave work. I’m getting a bronchoscopy and I am going to be sedated anyway. I love you and I’ll see you when you get out.”
I also called to cancel my next day lunch date with a friend before I was wheeled off for my testing.
The details get hazy after that. Versed, the sedation used for my test, will do that to you. Great stuff, but definitely makes you a little foggy.
I know, because I was told, that I had a Doppler study of my legs. That is a sonogram of your arteries searching for a clot or emboli. The theory was that with my decreasing respiratory status maybe I had a pulmonary emboli. A small little clot that had broken off and gone into my lung causing problems.
This theory came about because the bronchoscopy showed nothing! Nada! The infiltrate on my chest x-ray was almost an illusion. Maybe it was an infection, but not an infection that could be cultured. The spot was a bleb, a white out in my lung, a portion of my lung not participating in air exchange, a completely useless portion of lung.
I woke up in the Special Care Unit in the oncology floor. I remember seeing faces and hearing voices in between waves of consciousness, and struggling to breathe. I was grabbing my chest and sweating profusely. Hypoxia and anxiety will do that to a person, so won’t life and death.
I heard my mother’s voice and reached for her hand. I wanted my scapula I told her. Her voice rose an octave and she started drilling my nurse, Megan, whom we had come to know well through my many stays. “What is being done for her? Why can’t she breathe? I want to see a doctor right now!” It was 5:30 and she had just gotten to the hospital from work. My husband had arrived, but he, along with my father, sat quietly, helplessly, in a corner watching the scene unfold in front of them. My mother stormed out to the nurse’s station, and miraculously, appeared with three teams of doctors.
Now, this gesture can be taken two ways. Oncology, infection control, and Critical Care MDs were all in my room, more than 10 of them, assessing my case, discussing how best to treat me, which is modern collaborative health care at its best. But I can guarantee that no one wants to be that person, lying in the bed, being discussed. It is a very scary place to be. I don’t recall their discussion or even their faces, but I do know they ordered Megan to give me medicine. What medicine? I don’t know, but it burned my arm like she took a lighter to my skin. I screamed out in pain and the tears came rolling down my cheeks. When I looked up I saw Megan crying too. I knew I was in trouble.
I had a moment of clarity looking at Megan. I understood that this could be the day of my death, that my breaths could be counted. All I had worked for, accomplished, accumulated could do nothing for me, and I wished I’d done more, less accumulating and more accomplishing. I had everything I ever wanted. I was worried that would be my legacy: a tidy, nicely decorated home for my family, a son that wouldn’t even remember me, a pension for making great cocktails at the parties, and a year and a half of nursing. It hardly seemed spectacular. Why hadn’t I started an orphanage in Africa? Or accumulated foster children to fill up the empty bedrooms? Why hadn’t I found the cure for cancer or AIDs, like I dreamed of when I was a child?
I lost consciousness again. I woke to cold air rushing past my face. I was on a stretcher, with two tearful oncology nurses running that stretcher like THEIR life depended on it.
“No crying in front of the patients!” I wanted to yell at them, but instead I was swept into a huge corner room in the ccu with all the gadgets a girl could dream of.
I finally got really scared. This fear was compounded by a well-meaning nurse flinging open my curtain and yelling, “Who has the versed and the fentany!?” To the lay person this may just mean more great medication to make me groggy, sleepy, and comfortable. To me, a nurse, this meant it was time to intubate someone, put a tube down someone’s throat and hook them to a breathing machine, and that someone was me.
“What?” Gasp. “Who’s getting intubated?!” Gasp, Gasp, Gasp. I managed to holler out through my oxygen mask. The nurse scampered away. I grabbed the nearest resident, “No, versed.” I begged. “I remember everything on versed, give me propofol & ativan instead.” He looked at me blankly, shook his head to appease me, and I went back to desperately gasping for air.
I fought the intubation, convinced I would die on a ventilator. Finally, a Doctor came and showed me a repeat chest x-ray that had been taken just minutes before. The innocuous little pneumonia, the white spot on my previous x-ray had taken over my lungs. There was white where there should have been gray, my lungs were hardly circulating any air. I sighed and resigned to be intubated. Then nothing, darkness.
Victor
2/23/07 9:07 am
Today’s update will NOT start out very upbeat. I am emailing my partial address book from a past email to Hillary. We are back at Dartmouth Hitchcock Hospital. Hillary spiked a small fever yesterday morning at 9:30 or so. Hillary and I drove up for what we expected to be a simple exam as she had been feeling very good. She walked into the hospital for a blood test and a chest x-ray, which has been very common. The x-ray showed that she had a touch of Pneumonia in one lung.
At 2:00 the hematologist decided that she should be admitted to be watched. They did several tests for the type of pneumonia. Then they did tests for blood clots. By 3:30 the nurses were giving her oxygen. By 4:45, they were giving the maximum amount of oxygen and she was gasping for breath. By 5:30 she was in CRITICAL CONDITION.
Hillary was moved from the oncology ward to critical care at 7:00 and by 9:00 she had stopped breathing on her own. She needed to be intubated. The doctors put a breathing tube directly into her lungs. She is completely sedated and will be unconscious for 5-7 days.
Someone put another central line in. Those are getting much more difficult to place as she now has scar tissue from the three other lines that got infected. She also has a feeding tube placed until she gets better. She has to be restrained from moving because she is hitched to so many monitors, fluids, the ventilator and IV drugs and antibiotics.
The infection control team is growing the cultures from the lung infection to find out how to treat it. It's not a common pneumonia. We think it may be related to the staph Staphlococaus aureus) infections that have nearly done her in before. They are checking for what I think they called a superbug?
I'm a little out of it because when I saw her last night at 2 AM I fainted. The nurses are giving her blood transfusions, but they are having huge problems matching her blood now. Apparently, they need to type and match for Antigens now because she has had so many transfusions. I’m going back to be with her. Please pray for us.

2/23/07 11:33 pm
This is Vic from the Hospital, once again, doing play by play. I certainly can't talk, but at least I can type. The Priest came in to give Hillary the Last Rights. When he anointed her, she sat up in bed opened her eyes and just looked at us. This was her first real movement in about 12 hours. The doctors are now looking at a CAT scan for a blood clot, last night they ruled it out, but today the possibility is back. The right side of her heart is not working. The left side is working double time. I keep getting interrupted with worse news, so I will say so long for now.

Hillary

December 2005

I’d been running nonstop trying to find the perfect presents for my two
year old son, Xander. He was a giant of a child, like his father, and it was hard to remind myself that he was only two. I was thumbing through the cars, peering at the race tracks, looking at toys that were clearly too old for him and silently wondering what it would be like when he was 5, 10, or 15 years old. I wondered what I would be like, and if I had been successful as a parent.
I settled on the plastic dinosaurs, a favorite fascination of Xander’s, one that his father endlessly encouraged, some dinosaur books, and matchbox cars.
I’m 23 years old with only one son who’d been conceived when I was nineteen. Pregnancy at 19 years old, I thought, was the worst case scenario. I was going to end up poor, depending on the charity of others to survive, I told myself. I wasn’t going to accomplish anything. I would live in my old hometown in my parent’s house. I had screwed up my whole life. I should abort. I should give the baby up, I thought.
I was being dramatic. The end of the world never came because I had my son at twenty. My boyfriend at the time, Jon, was a 24 year old engineer. He’d worked at his job in some capacity since he was 18 years old. He was stable, loving, and we’d all ready been together for several years.
He took the reigns and cared for our son while I finished my bachelors degree in nursing. We did move back to my hometown, but it was into our own house, which we paid for with out the charity of others. I quickly found a job I enjoyed in an Intensive Care Unit at a local community hospital. My boyfriend and I got married when I turned twenty-two, and I was working on being Suzy homemaker.
Now, my biggest problem was fighting holiday traffic and the other determined Mom for the closest parking spot. I won the fight, of course, being the bitchy alpha mom I aspired to be.
I know what you may be thinking. This sounds like a very mature lifestyle for a 23 year old. I felt like I was in adolescent-adult limbo. My acquaintances who knew me and how I lived assumed I was in my late 20s, with really great genes that kept me looking sixteen, wrinkle free and impossibly model thin. The outsiders who saw me with my son often assumed what I had when I thought when I was pregnant: that I was poor, ignorant, and surviving off the money of others. The town we lived in was poor, and there were plenty of teen mothers, and most often people would assume the worse. I pretended not to notice the icy glares that eased when they noticed my nice car or the store clerk who initially ignored my presence until she noticed the Louis Vuitton diaper bag slung over my shoulder.
I made my way home through the throngs of shoppers, sneaking into my bedroom with out either my husband or son noticing. I tried to think of a clever hiding place, but eventually settled on stuffing the bag of presents beneath the piles of clothes in my walk-in closet. I would find I better hiding place later I told myself.
I flung myself on the bed and sprawled out flat, exhausted from the shopping trip. I swallowed hard, and caught myself. I laid very still and swallowed again. I felt like I was choking.
Being a nurse, a cancerphobe, and an overall health control freak, I started to probe at my neck. I pressed firmly against the base of my neck between my collar bones. I felt all along that base line, until I felt something to the left of my trachea.
“Is that a mass?” I questioned to myself. I started to sweat. It was not particularly hard, but my mind started to race. From Anatomy & Physiology, I knew there were a chain of lymph nodes through my neck, and I knew that there was a node where I had pushed on the mass that should not be able to be felt.
“It’s a tumor, I know it’s a tumor.” My mind screamed at me. I was always thinking about the worst case scenario. My logic was if I had considered the worst case scenario, I would be prepared. Trust me, you want a nurse who has thought the worst through and prepared appropriately.
My logic overcame the screaming inner voice. I was far too busy for it to be cancer. I was young and healthy. I was a nurse. I was contributing to society and supporting my family. I had worked so hard to accomplish all I had, God would simply not do that to me.
“Maybe it’s a goiter.” I thought to myself. I had been tired and thyroid problems did run in the family. I’d told myself that all young moms are tired, that it was a housewife secret no woman wanted to admit for fear of appearing weak.
I pressed my two hands to my throat again, I looked like I was choking myself, and swallowed. The mass didn’t move.
“Nope, not a goiter.” I thought to myself. My thyroid would have moved up and down.
I didn’t waste my time reconsidering the goiter, my mind was racing to the next possibility. “An infection.” I told myself. It was the most reasonable explanation. I worked in a hospital. I was exposed to weird infections, some that could not be identified, all the time. My young healthy immune system had simply gone up in arms over a germ that I was exposed to.
Having determined I only had an infection, I started to relax. My breathing slowed. I got up from bed, locked the door, and began to wrap the presents.

The ICU I worked in was small, and honestly, not all that intensive. It looked the same as the other hospitals I had seen: tan wallpapered walls, yellowed posters, and concrete floors. The TVs had cable, but no DVD players. The rooms all had outside views, but mostly the roof was seen. And of course, it smelled like most other hospitals, a mixture of illness and sweat. This was made worse by the fact that our rinky-dink community hospital had not equipped the ICU with toilets. The rooms had sinks, but no showers. They had commodes, but no flushable toilets. The place was making me sick.
I ran to the employee bathroom to throw up. I had been vomiting a lot recently. The whole family was rejoicing with the thought that baby number 2 might be on the way despite my insistence that two negative blood tests for pregnancy equals no pregnancy.
What could the vomiting be from then? I started poking at my neck. I felt my swollen nodes every morning when I woke up, then again when I had trouble swallowing, and again when I was bored. Mostly, I was obsessed with the damn nodes in my neck.
I splashed water on my face and opened the door to see my very own primary care physician with a medical student sitting at the nurse’s station. PERFECT.
“Paul.” He ignored me and kept looking over his wire-rimmed glasses at the patient’s chart. “PAUL! Just stop for a second, okay, and check this out for me.” He looked up and scrunched his nose. I could be down right pushy if circumstances came to that. The med student stared, open jawed at me.
“I have a mass in my neck!” I screeched.
Dr. Paul stood up and came over to me. He was all of thirty years old, average height, and clearly, the boy who’d become a doctor to throw it in the face of his old high school mates. I thought he was intelligent, and mostly respected his opinion, even though I knew I reminded him of those prissy girls who rejected him.
“This may be the first abnormal thing we see today.” He said to the student. “Swallow.” He commanded.
I swallowed and watched his face. He looked panicked. “Swallow again.” He said. Medical school should teach each of its students to have a poker face.
His face relaxed. “It’s just a node. You’ve probably caught something from working here.” He said.
“Yeah, maybe” I said, feeling a little defeated.
“I wouldn’t worry about it.” He told me. “You just had a CBC done and a chest x-ray that was normal.”
I agreed and let him go on his way while silently stewing. A CBC showed the white blood cell count, which would have been elevated if I had cancer. It wasn’t. The chest x-ray also would have shown if I had a mass in my chest. I didn’t.
My mind hollered at me. The mass wasn’t there when I had those tests done! It’s getting bigger! I’m having trouble swallowing! I had mononucleosis as a child, and you know doc, that’s the only proven link to lymphoma.
With my thoughts screaming at me, I watched him leave.

January 2006
“Hillary, will you get this next patient?” hollered Chris from the back room of the Emergency Department.
I had just started a new position in the ER, which meant a whole lot more running than in the ICU, but generally, a little less thinking. I’d mentioned the nodes in my neck to my co-workers.
“Show it to me when it looks like a second head.” The attending said to me. “That’s an ER doctor.” I thought to myself. Unless it is life threatening and obstructing my airway, it was not his problem
It didn’t seem to be anyone else’s problem either. I tried to seek medical treatment the good old fashioned way. I had made an appointment with Paul, but he’d given me the same opinion he had in the ICU.
I’d then waited a couple weeks, and again scheduled appointment with him at this office. I didn’t have any low grade fevers. I didn’t itch. I didn’t have read patches on my body. I wasn’t having hot flashes or night sweats. I wasn’t to fatigued to work. All I had were a few swollen glands and a BAD feeling.
“okay, Hill. This is what we’re going to do. I want you to go see Frank and see what he has to say.”
Frank! As in Frank Schell, the oncologist! It was close to what I wanted. I preferred some blood tests and a biopsy. I didn’t want to talk with a cancer doctor about nodes in my neck, but he would be thorough.

Hillary

The darkness was comfortable, silent. Limbo felt warm and homey. In the distance, I could see a bright flame, far in the distance and not approaching. This is my only memory of the week, my only vision.
I wish I could say I saw the great beyond, that I had some miraculous, near death experience that explained my purpose in life. But what I received came later and was much better than a vision. I survived. I’m alive!
“Move. Just move your arm, Hillary.” I told myself. I knew where I was. I recognized the room, the large windows, the heavy artillery of medical equipment, and the adjoining room for any of my “special needs.”
I couldn’t move my arm. I fell back into my dreamless sedation.
I awoke in a new room, smaller than the first, folded forward in bed, my head cock-eyed. I was a rag doll, unable to move myself.
I could make out words, but could not speak.
“Coming out of anesthesia…”
“Will take 3 days. . .”
“Transfer back to Special Care Unit . . .”
My sedation wore off in 16 hours, meaning I could talk in decipherable terms, move some body parts, and breathe with assistance of oxygen. No ventilator. The Doctors had underestimated the profound tolerance I had formed to narcotics and benzodiazepines over the course of my almost year long treatment. I had an open door policy when it came to the pharmacy. My cancer had caused a lot of pain and anxiety. Subsequently, I had some strong doses of morphine and ativan.
“I will not become an addict.” I told myself, but this was hardly my biggest worry.
I was transferred back to the oncology floor’s special care unit the very next day after being weaned off the breathing machine since, “my progression had been so rapid.” I was making head way to recovery and I was getting there quickly, according to the doctors.
One may think the rapid change from beating down death’s door to a recovering survivor would be a relief, that the near death experience would immediately be understood as a gift from God, as a second chance, a miracle.
This was not how I felt about my recovery. The feeding tube that had been in my stomach for the past week had been half pulled out, scratching my throat with each movement and making me gag. I kept getting tangled in the urinary catheter tubing, though the muscles in my legs were too atrophied to allow me to move them myself. I could not roll over. My right hand was numb.
I had gotten a second chance at life. I knew I must have a purpose for this world, and all I could do was cry. Cry for my loss of independence, cry for the possibility that this could occur again. I cried at commercials when I had the mental capacity to understand them. I cried when they brought a commode to the side of my bed because I could not walk to the bathroom.
I was 24 years old and as dependent as a child. I had to be rolled over or pulled up in bed. I needed assistance with eating. I couldn’t bathe myself. Finally, I resigned to the being dependent. I acquiesced to what others said would help me heal. I was humiliated, but I had finally released control.
Now, if any of you are health care providers you may know how I felt, I’d been treated for Hodgkin’s for nearly a year, but in illness I was a control freak. I was always looking over the nurse’s shoulder or requesting specific medications from the doctor that I thought would make me more comfortable. I intellectualized the situation, but cancer is not to be intellectualized. There is nothing intelligent about it. It had not followed any reasonable, predictable path, and I had finally been beaten into submission.
I tried to enjoy my dependence. I could call the nurse or a family member any time of day or night with a request and it would be granted. A red popsicle at 3 am? Sure. Instant white rice at 3:30 am, just when you’re getting back to sleep? Okay. After my shower, the nurse would run for a heated blanket and wrap it around my shoulders.
How many people can say that? I decided it was time to fully feel and accept the circumstances that had been occurring. My outlook started to change. I started to feel more positive, and I started to heal physically. What I had understood before was people needed others, were dependent on others, when they were very young or elderly. What I hadn’t understood was how much more we need them in between.
On Day One in the special care unit I decided I was going to sit up with out assistance. I practiced, struggling to a sitting position. I successfully sat for my exam with the resident. Then as she left, the strength in my arms abandoned me. I toppled over. My face squished against the railing of my hospital bed, stuck. I tried to worm my way out of the position, but I had used all my strength to sit for five minutes. All I could manage was a muffled scream against the hard plastic of my bed. Eventually, someone heard.
Day two my strength had improved. I could sit on the side of the bed and dangle my feet. I could manage to stand for a moment before my legs would fail me and I’d be lifted back into bed.
I cried for hours over this. Not heaving sobs, but a constant flow of tears for the body I felt I had left behind. I told myself I was making great progress for the situation, but the words were hollow. I prayed for strength.
The days that followed are a blur of recovery and visitors, napping and narcotics.
I eventually regained the strength to take steps with a walker, then walk with a walker, and then walk again. I felt like I was a child, retraining my muscles to work properly. I tried to retrain my hands, but my fine motor skills were slower to follow. The first three fingers of my right hand were numb and tingled from an apparent issue in the ICU where my sedation wore off, and I had pulled out my A-line. An A-line (arterial line) goes directly into the ulnar artery to monitor hemodynamic status, such as blood pressure. If it’s ripped out, blood pulsates from the site and the trauma damages nerves. I would drop items and be unable to pick them up. I was unable to write, but I was alive I told myself. Eventually, I learned to cope with the inconvenience.
I began to be cognescent of the visitors around me, the loved ones who had some to visit and support me, though they had been there 24/7 since the beginning. Until, several days after my extubation, I was in my own world, focused only on healing and depressed.
Something finally started to change in me. I started to feel again. I loved having people near me and I felt fortunate to have had the experience of nearly dying. Lying in bed, unable to do much else, I thought about how few people get to truly experience and appreciate the dying experience. Dying is part of life, and I had accepted that. In doing this I began to understand myself and enjoy what I had: a hospital room, a skeletal body, and lots of friends and family who loved me.
I’d never stopped to review my life. I’d never believed I could die. Modern medicine told me I had 50 more years of healthy living if I ate right and exercised. I was too preoccupied with decorating the house and having the perfect family to step back and ask myself, “Is this what I want?” or “Am I missing something?” I was lucky to have fought to live, but even more fortunate to have received such a lesson.