The Cost of the Emergency Room

When I was in the emergency room at New York Presbyterian on April 15^th -16^th, I saw a few doctors, one of which was a surgeon named Dr. Kumar (not his real name). This doctor was the boss of all those pesky surgical residents who were so anxious to operate on my bowel.  I saw him just before he discharged me. On April 17^th, there was a bill in my mailbox from Dr. Kumar for $550.  I threw it away thinking that this would be submitted to my insurance since he saw me in the emergency room.  Aetna, my medical insurance provider paid the following amounts for my overnight stay in the emergency room hallway on April 15^th:

New York Presbyterian Hospital:  $13,095

Dr. Yong Ho Auh, radiologist:       $181

Dr. Elisa Aponte, ER physician:    $165

Total payments:                            $13,441

For whatever reason, Dr. Kumar's bill was sent to me separately.  I received another bill today in the mail stating that my account is past due and to avoid further collection activities, to remit payment in full.  Not to be a b*tch, but if a doctor sees a patient in the emergency room, shouldn’t his payment be part of that overall bill?  If not, shouldn’t he have asked me for my insurance information - like any other doctor would before he saw me?  Why should my credit be at risk for this obnoxious doctor behavior?  The only way for me to take care of this is to call their toll free billing number and sit on hold to get it straightened out.  Grrrr….like I have time to fight with the doctor over the bill while I am working 50+ hours a week and battling cancer! 

I probably should not have been, but I was shocked by the cost of this emergency room visit.  Considering that I did not even have a room, IV pole, nurse call button, privacy curtain, TV, pillow or bathroom, I find this kind of pricey.  On top of that wonderful experience, I now have to deal with Dr. Kumar’s billing issues.

Updates and Interesting Article

Follow Up on Bowel Obstruction

I haven’t posted for almost a month.  I’ve been quite busy at work and with other non-cancer related activities.  I had an appointment last week with Nina, my nurse practitioner at Dana Farber, who explained what was happening with the bowel obstruction and what I might do about it.  The bowel obstruction occurred where the small intestine was resected during my surgery. The medical term is ileal anastomosis. She explained that ileal anastomosis is the area where the bowel was sewn together after the 100 cm was removed.  This area of the bowel is narrower than the rest of my small intestine because of the fusing together of the two pieces. There could also be some scar tissue or adhesions.  She said that this was not bowel ischemia or small intestinal bowel overgrowth.  The problem is due to the bowel resection surgery.  Nina suggested smaller meals, soft foods and chewing thoroughly.  I asked about determining when I need to go to the emergency room versus waiting it out. She said that it is ok to wait for perhaps 4-5 hours at home if I am not vomiting.  I should not eat or drink anything until it clears.  If it hasn’t cleared in that time, I should go to the emergency room to get intravenous fluids to avoid dehydration.  I asked about taking fish oil or massaging the abdominal area to help avoid another obstruction. Nina said that these things have not been proven to help but they won’t do any harm so go ahead if I want to try it.  The only way to “fix” this is to have another open surgery to resect the bowel again which will/might cause more scar tissue/adhesions.  That definitely does not sound like a good solution and I would only go that route if it were a life or death situation.  I’m hoping that it doesn’t happen again.

No Update on NETest

I have not received my NETest results yet.  I surveyed my fellow New York noids who went with me to get the test and one of them has received the results.  I’m guessing that they are ready and I will have an update next week after Nancy Texeira contacts me and sends the test results.

Two Year Anniversary of Beth’s Adventures with Cancer

This week is the two year anniversary of this blog.  Last year I hit 10,000 pageviews exactly on my one year anniversary.  Now I have close to 60,000 pageviews but I think some of them are spam.  I started getting spam comments right around the time of the winter Olympics. Many  of the spam posts came from the UK and France, not a usual source of my readers who are mostly US based. I don’t have a clue as to any Olympic connection. These seem to have lessened now and I think most viewers are people who are actually reading the blog. 

Since last year, I had the big bowel resection surgery and have had a rough recovery.  Eight months out from surgery I am definitely not back to normal.  I am at a new normal with a completely different metabolism and many gastrointestinal problems.  From an oncological standpoint, I am better with lower tumor markers and less tumor bulk but my quality of life has taken a big hit.  I haven’t decided if I am better off or not.

Interesting Article in “The Atlantic”

Finally, there is an interesting article in The Atlantic magazine called “Cancer Treatment as Comic Book”:  “Matt Freedman scrawled the pages of Relatively Indolent but Relentless as he underwent radiation therapy, with engrossing, surprisingly funny results.”  I have not read this book which is a journal with hand drawn comics about his cancer treatment.  It sounds interesting and I could relate to some of the comics that were in The Atlantic article. The link to the article is below along with two of the comics that I liked:

http://www.theatlantic.com/entertainment/archive/2014/05/cancer-comic/370949/

 

 

I can relate to both of these, particularly “two good years” comic.  I’ll have to read this book when I get some time. 

That’s it from me for now.  I think I’ll go outside and enjoy the nice sunny weather!

 

 

Small Bowel Obstruction

Last Monday night, I started having pain similar to the bowel kink or obstruction I may have had in February.  I started vomiting around 3:00 am on Tuesday morning and felt awful by the time I needed to get up for work.  At my appointment in February, my doctor said next time it happens, go get a kidney, ureter, bowel (KUB) x-ray.  At 8:00 am on Tuesday morning I went into City MD, an urgent care facility. They took me in right away and after getting a short medical history, x-rayed me.  While I was waiting for the technicians to get set up, I vomited again.  After it was done, the doctor said that I needed to go to the emergency room.  He sent me off with a note saying small bowel obstruction and a CD with the x-ray.  I went to New York Presbyterian (NYP) Hospital, which is where my primary care physician is affiliated.  I got checked in and filled out the paperwork by mid-morning on Tuesday.

I have not been in an emergency room for a problem since I was 12 years old and fell off a fence and broke my arm. I was stunned by the ER at NYP Hospital.  It was so crowded that the patient areas were all full and patients were lined up on beds in the hallways, basically head to foot on gurneys.  My gurney was in the hallway, where they drew blood and put in an IV with a saline drip and asked me more questions.  I was still having a lot of abdominal pain.  They poked around my abdomen and thought that I might have appendicitis since I was feeling more pain on the right side.  In addition, my white blood cell count was 17.9 (10 is the top of the range). They also took a urine sample.  Next was a CT scan of the abdomen and pelvis.  It took about 3 hours to get in to have the scan and another hour or so after that to get the results.  By this time it was mid-afternoon and I was feeling a little better.  The CT scan showed a high grade small bowel obstruction.  At least I didn’t have appendicitis!  They assigned me to a surgical team, which scared me to death.   I did not want another operation.  The surgical team consisted of about 5 surgical residents who told me that I would not be discharged until the obstruction cleared and I passed gas.  They said that they would put in a NG tube if I was vomiting and would need to do an emergency surgery should the obstruction not clear.  They seemed very interested in doing this surgery, a bit overenthusiastic in my opinion.   I’m positive none of them had ever seen a carcinoid cancer patient.   I suggested that perhaps I could go home and come back if I felt worse but they were having none of that.  Meanwhile the hospital was full and there were no beds to admit me to so I was stuck in the hallway on a gurney for the night.  I was miserable and uncomfortable. There were too many patients, I had no privacy and there was one bathroom for about 30 people, most of whom were quite ill.  The ER was short of everything – no pillows, no blankets, and no IV poles, I couldn’t even watch TV, since I was stuck in a hallway.  The ER is way in the back of an old hospital so there was very sporadic cell phone service.  If I wanted to go to the bathroom, I had to carry my IV bag since there was no pole!  Meanwhile I passed gas at around 11:00 pm so I knew that I was out of the woods on the bowel obstruction and on my way to getting better.  In the morning, the surgical residents came back again, said my abdomen felt nice and soft and if I could keep a liquid breakfast down, I could go home.  They did another round of blood tests and my white cell count was down to 6.2 – perfectly normal.  They came back around 11:30 am to check again and to put together the discharge.  It took another 3 hours to get it all together and release me.  I was home around 3:00 pm on Wednesday.  What a nightmare!

I asked one of the nurses why it was so crowded and there were no rooms available in the hospital.  She said that because it was the first 2 days of Passover, many of the Jewish doctors were off and told their patients to go to the ER if they had a medical problem.  Note to self: never get sick on Passover!

Needless to say, I am very uncomfortable with how my bowel is healing after this surgery.  I’m not sure what to do to avoid these types of obstructions and I definitely don’t want another surgery.  In hindsight, I probably would have been fine not going to the ER as the obstruction cleared up on its own.  At least my doctors now have the KUB and CT scan to evaluate my situation.  I’ll see what they suggest when I go for my next appointment in early May. Given this ER experience, I would definitely want to wait it out if it happened again. 

Meanwhile, I felt that the emergency room was a very good example of what is wrong with the medical system in America.  Not only was it overcrowded and understaffed, it did not even have enough supplies or bathrooms to handle the crowd.  Most of the patients were very old – I guess that’s typical for any hospital.  One woman was at least 90 years old and was complaining constantly and loudly.  She was not upset about her medical condition - mostly she wanted her glasses or her bag or where was lunch?  The patient next to her said that she had kept her up all night with the noise. I asked a staff member what her story was and they said that her home health care aide quit and that was why she was in the ER!  That is crazy!  The place is overcrowded with patients - eldercare needs to be handled somewhere else!  Another patient came in around 1:00 am as I was still sitting on my gurney in the hallway.  She was at least 90+ years old and was presenting with pneumonia.  Her son, who was of Medicare age himself was with her.  She had been transferred from her nursing home to the ER.  The doctor was trying to get some medical information and to put in an IV and she was screaming, kicking, spitting and telling him that she wanted to die and to leave her alone!  Her son was yelling at her and telling her the doctor was trying to help her.  This went on for about a half an hour.  It’s amazing to me that you can’t die when you are in your 90’s and close to death anyway. A much younger man came in early on Wednesday morning. He reminded me of kids in their 20’s who don’t believe they need insurance because they will never be sick. He was presenting with something called Exertional Rhabdomyolysis, which is kidney damage from excess exercising.  He had taken a class called “soulcycle” and the doctor that was treating him said he treats this condition about 20x a month.  The man had never heard of it and thought that there should be some sort of public education about the risks of excessive exercising.  He was admitted right about the time I was getting discharged. An old man across from me was 83 and had fallen and broken his hip and was on his way to a hip replacement surgery – his medical history was quite long but the most interesting thing I heard was that he had an 11 year old daughter – how crazy is that?  There is absolutely no privacy for anyone when you are sitting in the hallway listening to patients that are sitting 3-5 feet away from you!  Amazing.  I hope I never have to go to the ER again!

Adventures with CREON

I am now 7 months past my debulking surgery.  I went back to work in December and my life settled back in a routine.  My diet went back to my more typical “normal” in that I ate healthy, lower fat meals during the week when my day was pretty structured.   But on weekends, I was indulging in restaurant eating with fattier foods. This led to gastrointestinal problems like gas and diarrhea which sometimes extended into Monday or Tuesday. This problem can be caused by having a shorter bowel from surgery or from the Sandostatin LAR that is administered monthly.  In my case, since I didn’t have any diarrhea problems prior to surgery, it is probably due to the surgery.  My body is just not absorbing fats properly. 

I tried Digest Gold, an over the counter digestive enzyme supplement, for a few months and I thought it was working a little bit, at least on the gas problem.  I was keeping a journal of my symptoms and found that I was still having diarrhea for about 3 days a week, sometimes more than 5 -10 times a day, almost always on some variation of Friday – Monday.  Last month my doctor prescribed CREON, a prescription digestive enzyme replacement.  CREON is a medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes such as lipase, protease and amylase.  I started CREON, at a low dose (6,000 lipase units) and I was to take it 3 times a day before meals.  I made the mistake of starting this drug on the day before my birthday. By the third pill I was having extreme gastrointestinal pain. I felt like I was having heartburn from my esophagus to my urethra.  I was also very bloated and constipated.  I ended the day drinking prune juice to get things moving again.  I was still feeling under the weather on my birthday and had to cancel our dinner reservations.  I recovered in time to have a nice dinner at Palma, a little Italian place in the Village later in the week. Though I was feeling better, I was no longer interested in taking this drug.  I asked my fellow carcinoids on ACOR if anyone had side effects from CREON. The general advice was to take it once a day, get used to it and then balance the dosage to alleviate the diarrhea without getting constipated. 

I started taking it once a day during the week, when I eat less fat and twice a day on weekends when my eating is less disciplined and includes more fatty foods.  After 4 weeks this strategy has worked to lessen, not eliminate the diarrhea problem.    Sometimes I forget to take the pill and sometimes I have diarrhea despite not eating fatty foods or taking the pill. I would say that incidence is much lower and I don’t have to spend my weekends close to a bathroom.  So, after a bit of trial and error, this drug seems to be working on one of the digestive issues that has been plaguing me after surgery. I think this is progress!

On a related note, I had never been on prescription drugs before except for occasional antibiotics that don’t have to be renewed.  I am currently taking prescription vitamin D due to a deficiency (lab test 14, range 20 – 50).  I am also taking CREON, both prescriptions that need to be renewed regularly.  I get my prescriptions from Walgreens and they have me on what I would call “robocalls” reminding me to renew or pick up my prescriptions in the next 24 hours or lose the prescription.  More often than not, my voicemail messages are from the drug store…I find this quite annoying. I wish there was a better way to communicate with my pharmacist.

Musings at 55

Soon I will be turning 55 – It is one of those birthdays ending in “5” or “0” that everyone seems to want to celebrate.  When I was diagnosed with cancer at age 51, I was not sure I would be alive at 55.  While I was commiserating about how unfair it was that I had cancer and might die earlier than anticipated, I was thinking of my pension benefits and that I would not be able to collect them if I did not make it to 55, which is “early retirement age” under most corporate defined benefit pension plans.  A pension benefit, unlike a 401(k) plan, is a promise of a certain amount of money at retirement, usually based on the employee’s salary and years of service.  The benefit is only payable at retirement and if you don’t make it to retirement, no one gets your benefit -  i.e., there is no beneficiary.  I have officially made it to "early retirement" and have requested paperwork to get my benefits out of the plan.  I am allowed to take a “lump sum” which is the present value of the benefits that the company owes me due to my salary and service. The only way I can get these funds without a large tax penalty is to roll the lump sum into an IRA.  You can’t get your funds out of an IRA without penalties until age 59 ½, so I guess that’s my next financial milestone.  I suspect and hope I will be retired before my 59^th birthday. It’s weird what you think of when you have cancer!

My mother had her first heart attack at age 55.  That’s another thing that I think about when turning 55.  My brother turned 55 a few years ago and he was thinking about that too.  He has not had a heart attack, thank goodness!  My mother died at age 63 from a second heart attack.  My father also died (age 69) from heart disease.  Before I was diagnosed with cancer, I always thought I would die of heart disease because it runs in my family. I still might.

My parents’ shorter than average longevity makes me think that perhaps I should do something more meaningful with my life.  I am thinking of retiring but I might be a little bored and frankly, I’m concerned about doing all spending and no accumulation anymore.  I wish I had a better sense of my longevity picture. 

Today I saw the article below on another blog I read called “The Big Picture”.  The article is called “What you Learn When You’re 60”.  I’ve shortened the list from the original blogpost.  I could definitely relate to most of these at my tender young age of 55.  Maybe I’m mature for my age.

What you Learn When You’re 60

by Bob Lefsetz

Death is not distant, it’s inevitable, and ever-closer.

No one knows anything. Confidence is a front. Everybody is insecure.

We’re all lonely looking to be connected.

You’ll regret choices earlier in your life, but you’ll accept them.

You’ll want the decade back when you were lost and drifting.

You’re never going to recover from some physical ills, aches and pains are part of the process of dying, and that’s what you’re doing, every day.

Your parents said television was the idiot box, and you feel guilty every time you watch for hours, but you’re addicted.

Being good-looking is overrated. Sure, it opens some doors, but it stunts you in other ways. Character is built by challenges, if you avoid them, you’re at a loss.

Having friends is better than having money.

If you were never on the path to riches, you will never be rich.

Doors are closing every day. If there’s something you want to do, start now.

Acceptance is no easier than it was when you were five, but it’s necessary in order to soldier on.

You really want to be involved with someone your own age, because no matter how attractive a younger person might be, they do not get the references.

People let you down.

Everybody is out for themselves. They make decisions accordingly. Don’t take it personally.

Some people were dead at thirty. It’s a full time job trying to stay alive.

Most of what you learned in school you’ve already forgotten.

If you’re working for the man, it’s just a matter of time before you lose your job.

People are dying to tell you their story. Ask them questions. They’ll tell you everything.

You’ll become more comfortable in your own skin.

You’ll be happier.

You’ll stop doing things you don’t want to do. Actually, this happens not long after you move out of your parents’ house.

You’ll stop being fascinated by that which consumed you previously. Sports may become meaningless.

You won’t know who the people they’re talking about in “People” and the rest of the gossip rags are, and you won’t care.

You’ll realize no one leaves their mark, except for a few people who didn’t know they were doing so, so it’s a futile pursuit.

Wrinkles only bother those who have them. Beauty changes when we get older. We’re looking for a glint in the eye, a sense of satisfaction and adventure.

If you’re up for anything, we’re attracted to you.

No one can keep a secret.

There are truly rich people and chances are you’re not one of them. Unless you’ve got a friend, you’ll rarely get the best seat, you’ll rarely get preferential treatment. You don’t want to see yourself as one of the unwashed masses, but you are.

You don’t want to be President.

Life is topsy-turvy, just because someone’s successful today, that does not mean they will be so tomorrow.

Even the best and the brightest have kids who screw up.

People oftentimes don’t want to hear the truth, you’ll have trouble getting ahead if you don’t know when to hold your tongue.

Everybody gets cancer, if you ain’t got it, your time is coming.

You think you want to live forever, but you don’t, because none of your friends will be around to share it with.

There are two types of people, those who want to retire and those who don’t.

There are two types of people, those who prepared for retirement and those who didn’t, and some have to continue to work when they don’t want to.

Your health may not allow you to continue to work, even if you want to.

It’s fun learning what the people you grew up with are up to, but you really don’t want to hang with any of them that you weren’t hanging with before the Internet.

People don’t change. Certainly not unless they want to. So expect the person who bugged you in school to still bug you as an adult. And know that chances are you can never ever get back together with your ex because what caused the breakup back then still exists.

Marriage is hard.

Divorce is even harder.

Sometimes life is better with a new partner, but sometimes it’s not.

People who want to make you feel inadequate feel inadequate themselves.

Not everybody grows up, some are still bullies.

The biggest rebel in school is complacent as an adult.

Some of your best friends will retreat to religion.

You’ll laugh at those trying to look younger, or follow their lead down the path of inadequacy.

You’ll see the passing of your parents as a precursor to your own demise. Once they’re gone, you’re next.

You’ll love making references to old movies and songs.

Unless you have children, the Top Forty will become meaningless.

You’ll be stunned that the biggest TV shows and stars of yore will become forgotten as time goes by.

You’ll be more interested in the news, and more interested in politics.

You’ll think it was better when you were young.

Even though you are closer to death, you won’t want to be young again. You had so many questions, you were so angst-ridden, you were searching. As the cliche goes, youth is wasted on the young.

The key to longevity is letting go of the past.

You’ll look back at one specific time in your life when you were happiest, and you’ll discover the people who shared the experience agree with you.

You’ll recognize hype for what it is. And become disillusioned by it and advertising.

You’ll realize every generation has a teen phenom, a boy band that captures girls’ hearts that fades away.

Being famous is overrated, you treasure your anonymity.

Life is for the living, so live it up!

NETest

Nancy Teixiera, a registered nurse and carcinoid patient, spoke to the New York Noids Support Group yesterday.  She is representing Wren Labs which is working with Clifton Life Sciences. Wren has developed a genetic marker specific to neuroendocrine tumors.  The test measures tumor activity at a cellular level. The NETest is a novel blood-based molecular diagnostic that provides highly sensitive and specific information with respect to tumor status and therapeutic efficacy. The test is unique in that it uses 51 neuroendocrine tumor- specific gene transcripts developed by Wren scientists. The NETest has been developed and validated in over 600 NET patients and can identify the presence and activity of NET cells circulating prior to the formation of metastatic tumor.  The idea is to have the test performed on a periodic basis and see if there is a trend.  The blood test is scaled on a 0 – 8 basis with the levels as follows:

Level 1-4:  low activity

Level 5-6:  medium activity

Level 7-8:  high activity

This NETest can pick up tumor activity unlike Chromogranin A and Pancreastatin which monitor secretion. The question that came up in the group was: What should one do with the information if the trend is upward?  If that were the case, one could work with their doctor to consider modifying current therapy. Examples could include, increasing the dose of Sandostatin, finding the tumor(s) and removing it or some other systemic therapy such as chemotherapy or Peptide Receptor Radionuclide Therapy (PRRT).  This test is individualized and therefore so is each patient’s management plan.

In order for patients and physicians to appreciate the benefit of trending values, the company has offered to give this blood test for free 3 times over a course of 9 months to each NET patient in the group.  This way, each patient would have a baseline to measure their tumor activity.  They have applied for a Current Procedural Terminology (CPT) code and anticipate having this in place by May, 2014. The procedure could then be covered by insurance before the 9 months of free testing is done.  Wren Labs is bringing this test to the attention of patients prior or simultaneously to informing doctors of it.  Nancy has been visiting support groups around the country to inform patients of the test, as well as having discussions with NETs specialists at various national conferences. 

I think the challenge is to get doctors to understand and utilize the test.  Just like anything, if the test shows high tumor activity and there is no good way of finding the tumors or correcting the problem, then what is the benefit of having this information?  This could cause anxiety for patients, which seemed to be a concern to some of the patients in the group.   A few of those in the group suggested that we all go together to Branford, CT, where Wren Labs is located to get the test done together.  It would be like a Noids field trip! 

I’m inclined to go ahead and get the blood test.  It is a very low risk procedure in that I don’t need to take any medications or get scanned and it could help others with this disease in the future.  We’ll see what happens. 

If anyone else would like to get the NETest, you can contact Nancy Teixeira at nancy@wrenlaboratories.com

 

A Bump in the Recovery Road

I am now nearly 5 months post-surgery and things have been going reasonably well.  I am back to work but don’t have nearly the stamina I had pre-surgery.  After 5 days of working, I am very tired.  In the past month, I’ve had 2 incidences of severe abdominal pain.  It starts feeling like I was kicked in the stomach, then goes into severe pain with what feels like contractions or spasms.  The first time it happened, it was on a Friday night and I took a tramadol (pain killer). That helped me to sleep and I felt fine in the morning.  The second time was on Super Bowl Sunday and no, I was not eating tons of fatty foods and drinking beer!  It started the same way with the kicked in the stomach feeling, then went to contractions.  I did not take a tramadol until after the Super Bowl ended because I was trying to watch it.  I did take the tramadol around 10:30 pm but that time it did not help me get to sleep.  At about 3:00 am, I was vomiting and still in severe pain.  The next morning I went in to see my primary care physician and he said that I might have had my bowel kink and then unkink – that can cause this type of pain.  He said he did not think that I was having an obstruction at that time and if I were, I would be quite bloated.  I started to feel better later in the day on Monday.  I messaged my oncologist and she said that the nurse practitioner would talk to me about it when I came in on Thursday February 13^th

At my appointment, the nurse practitioner explained that this type of pain can come from a bowel surgery.  She said it could have been a “kinked bowel” or partial obstruction but did not know for sure.  She said that if it happens again, I should get to a radiology facility and get a KUB which stands for kidney, ureter, bladder.  A KUB is an x-ray of the chest and lower abdomen and is used to detect bowel obstructions.  I didn’t get the impression that even if they knew exactly what the problem was, that there was a good solution for it.  Nonetheless, I’ll ask my primary care physician how I might get a KUB quickly, should I need one.  I would prefer not to go to the emergency room because the wait would be long and who knows what else they would do besides a KUB.  Anyway, this really threw me off as I have had a pretty painless recuperation until now.  I’ve already used two sick days for abdominal issues and at this rate I’ll be out of days well before year-end.  I’m hoping this doesn’t happen again but I don’t know what I can do to avoid it or mitigate the pain since I don’t know exactly what is going on.  Some other patients have suggested taking fish oil or drinking coke syrup when it starts to hurt.  I asked the nurse practitioner about this and she said that she had not heard that these things work but there is no harm it trying it if I want to. 

Because of these abdominal issues and the fact that I was not eating much for a day or two after each event, I lost another 2+ pounds this month.  I was hoping to get my weight stabilized to I could figure out what size I will be but now my “new” clothes are getting a bit loose on me.  Oh well, that is a minor issue relative to the pain.  I’m hoping that this is not going to be a recurring problem.