Scopes, Scripts, and Speculation

The hot water and soap doesn’t seem to be enough to pull this glue and tape residue from my skin.

I smell like hospital and I’m showering and showering to make the stink go away. 5 days of needles. 5 days of injections. 5 days of IV lines collapsing and x-rays and cat scans and scopes and doctors.

If I can just make the water hotter or the washcloth a bit more rough maybe I can scrub these circular lines where the cardiac monitors went off of my chest and stomach.

The kids don’t need to see these lines. Or the bandages or the bruises. My 4 and 6-year olds clung to their father, more than tentative, when they entered my hospital room for the first time. Petrified of what they saw. My youngest couldn’t…wouldn’t…leave her Dad’s lap. Afraid to kiss and hug her own mother.

So I’m scrubbing these in the shower with all I have.

Monday is when my body fell apart. It had enough of my “waiting” for help. Monday, the day before I was supposed to start testing for my symptoms, my body revolted.

My brother drove me to the ER after hours of vomiting and bleeding and a horrible headache. Perhaps a rash decision on my part, but I could tell I was dehydrated and things were not getting better.

After taking down my symptoms and history, it was clear the ER doc wasn’t going to let me go home. And thus began 5 days in Henry Mayo Newhall Memorial and every test imaginable.

All those scopes I was going to blog about? We did them. They hurt and I wasn’t knocked out enough, but we did them. I drank a gallon of some horrible liquid and pooped for the entire night beforehand. Then I was “sedated” lightly and put on my side where I bit down on a block. They shoved a hose with a camera through that block and I gagged. I gagged like crazy. They pulled that hose out and shoved another up my ass. This didn’t hurt until they rolled me onto my back and started pressing my stomach. I yelled. I cried. Then I woke up in a recovery room.

They also did an ultrasound. A cat scan. And an x-ray test that went for 3 hours and involved me drinking some horrible milkshake type liquid.

I was told I have: diverticulosis, gall stones, gastritis, hiatal hernia, severe reflux, inflammation, hemorrhoids, oh…and a migraine.

Every single test they did at the hospital found…something.

They scheduled surgery to remove my gall bladder for Friday. But after most tests decided to reschedule for Saturday. They were sure the gall stones were causing my nausea. Maybe.

As I moved to a third hospital room, and mentally prepared for the next day’s surgery, the doctor arrived.

He had that look on his face that I knew would send my eyebrows up. We’ve delt with this doctor for 5 days now and he was getting used to our questions and our demand for service, answers, etc. I even gave him questions from my twitter friends. He was amused and annoyed by me all at once.

With a slight grin he told me they were canceling surgery for Saturday. The latest test needed further study. They didn’t want to remove my gall bladder and still have me sick or worse yet…they didn’t want to go back in a few weeks later to surgically repair my reflux.

…and since I was medicated, and the new tests were at another facility, I could go home and wait.

Go home? What?

Here I was scheduled for surgery in the morning and suddenly I’m packing my things? They had been injecting me with morphine, dilaudid, and every other pain med and …wham…time to go home?

The doctor gave me a small pharmacy, strict orders to rest, and said they would schedule my studies for next week. Then we’ll talk surgery. Probably a one time laparoscopy that would take out my gall bladder and repair my reflux all at once.

I can’t believe after months upon months of puking and bleeding…it comes down to a gall bladder and some reflux. I can’t decide if I am relieved or embarrassed. If I am annoyed, upset, happy?

The radiologist did say it was the worst case of adult reflux he’s ever seen. That made me feel warm and fuzzy. And when asked how many gall stones we were told “OMG a ton.”

The worst reflux ever and a ton of gall stones. Yeah, that explains all the dinners I’ve thrown up and the mornings where breakfast didn’t exactly make it to my stomach. And coupled with everything else it found, it also explains 5 days in the hospital. My body had given up. Despite the tests I had scheduled, it was DONE. Pissed off and ready for relief.

And relief came by way of large doses of medication and many needles. Not the way I should have taken care of myself, and I’m still playing catch up.

I did, as is me, make some friends during my stay. There is a weird little community in a hospital that took me a few days to crack, but was fun once I did. The guys in radiology and the transporters rock. By the end of my stay they were teasing me with chili cheese fries and sneaking me my phones. They even let the kids in to one of my tests to watch on the screen as my insides were lit up for the doctor.

I spent time showing some nurses BlogHer and talked health care while they worked. We watched Twitter go by as the US Journalists were freed from North Korea and we hugged. They snuck me the good food trays and complained about other patients to me. The ones that come back weekly.

But here, at home, at least I can sit on the couch and watch the kids play. I remain medicated and uncomfortable, but at least I’m no longer tethered to a line while the kids watch in horror.

A new hospital will be conquered next week, but only for a test. Then the rescheduling of a surgery which will entail…well, we shall see. My Mom has flown in from Florida to help as I take off yet more work and arrange for yet more child care. And hopefully put back together this ailing body that I neglected for way too long.

If anything good has come of this entire ordeal, it’s that other people have started talking health care and their own health related issues. Make sure to go read:

Momocrats


Red Stapler


Francine Hardaway

MoeArt

Erin Kotecki Vest also blogs at Queen of Spain blog

Comments

  1. OMG…I had no idea that things were the way they were (was that even proper english?). Sorry to hear about your “condition” (why did I use that word??). Hope you get better AND feel better really soon. Here’s hoping that it’s nothing serious and you just need some medicine and rest. *crosses fingers*

  2. Posted on Twitter but it’s been so wonky lately. Use nail polish remover to get the tape off of your skin. I was in the hospital for 3 weeks before I had my first kid and had to have a new IV every 3 days. Nurses know everything 🙂

  3. Erin,
    I’m sorry for all you’re going through – but you’re handling this with real style. Good luck on the tests and whatever surgery is decided upon.

  4. They can fix reflux with surgery? I lost the gallbladder but still have reflux and a food no-no list that is long and heart-breaking. Upside though is that I hardly ever get migraines anymore since the gallbladder was removed.

    Rest up. Hope things go well this next week.

  5. Unfortunately, your story is not unusual. I’d like to know how many of the people who say they like their current health insurance have experienced the health care system lately. Even if they have insurance, they will still be subjected to everything you’ve been subjected to, which is the end result of 1) not having a primary care doc you have been seeing regularly because it is easy to do so and 2)the result of CYA medicine where they will do every single test until they are sure.

    Have they given you antibiotics for the diverticulitis? Can they dissolve the gallstones without surgery? My late husband was a gastroenterological radiologist and although a few people have had to have surgery to control reflux there are simple fixes like not eating chocolate before bed, not drinking (these things relax the esophageal sphincter and let the food come up) and taking over the counter Prilosec for 30 days. Also raising the head of the bed. Google those diagnoses and you will see some simple first line treatments.

    Thank you for blogging. Most people think the argument is about who pays for your health care and who controls it, private v. govt. They get all political and they miss the essential point. Not so.
    It’s about all the other things that make our system suck. We are, as I like to say, arguing about the fabric on the deck chairs.

    I hope you feel better. I am doing my best to make sure people don’t go through what you went through. Insured people. Republicans. People who like their doctors and their insurance companies and their employers. We are all in the same boat.

  6. Erin, I’m so glad you’re home with your family. I’m glad your kids don’t have to see their mom in a hospital room. I hope relief is in sight. You write like an angel, thanks for sharing this private journey with us.

  7. I have been following your updates on Twitter and I’m glad you’re home and at least getting some relief from medication.

    I’m sure celiac was one of the things they tested for? Do you know if those results have come back yet? My symptoms were a lot like what you describe, (almost) all better now with the new diet.

    Anyway, I’m glad you’re home!

  8. Been there, done that with the gallbladder issues. Unfortunately, I did not have medical coverage at the time of my attacks, and so still have my gallbladder. Fortunately, I did a whole heck of a lot of research and figured out how to eliminate the gallbladder attacks, which are the most gawd-awful pain that I have ever felt in my life. And I was in labor for two weeks with my son…

    *hugs* Our bodies know when we can’t take it anymore, and are quite happy to let us know it, even when it’s the most miserable experience ever.

  9. Dude. DUDE. I’m so sorry all of this is hitting you at the same time. Hugging you from socialist Canada….

  10. Erin,
    So sorry you are having to deal with this on an emergency basis. Been thinking and praying for your health all week.

    I see that divrchk has already clued you in on the nail polish remover trick. I’ve got something to add: Tell them you want PAPER tape next time. Not nearly as much mess, no itch, and much less scary looking.

    I hope they told you to cut down on fat (almost to a no-fat diet). Hubby mine has been having lots of problems with this kind of thing. No-fat was the immediate recommendation of the doc.

    As for the kids’ reactions: Take them aside and explain what is going on. There are some great kids books about when mom is in the hospital. A good one is “The Playdate Kids: Dakota’s Mom Goes to the Hospital”. When I had my knee surgeries, our son was older than your oldest. He still had problems dealing with it. Talking with Dad and reading about other kids’ reactions helped more than anything.

  11. I went through a similar situation about 10 years ago where I spent 4 days in the hospital and years after w/ eating/pooping/pain issues.

    I never got an answer. I self-diagnosed (after having my gall bladder out), and now, I feel better than ever (tummy-wise).

    Do whatever it takes to get an answer. Make sure all the docs are talking to one another. Make sure you get even the ‘maybe it’s this’ from the docs and tell the next one. I hope you get a final answer and the help you need.

    Side note: Just think – if you’d been in Socialist Canada, you’d be dead by now. Or at least that’s what #tcot wants you to believe.

  12. Oh man. Don’t know what to say since I don’t really know anything about your medical conditions, but just… take care of yourself.

  13. Oh, sorry you have to wait even longer. But glad about the (mostly) good news. I’ve had my gb removed (& work as a nurse) if you want to send me a message on blogher.

    It’s hard to wait, but I’m happy you are watching your kids play!

  14. Much love and hugs, and prayers that this will make you back to healthy again.

  15. You’re a trooper! Your story of diagnosis trial and error sounds like an episode of House but I bet your doctor isn’t as yummy as Hugh Laurie.

  16. I heard some time back that you had a gall bladder surgery. Not sure if my tweet got to you? Hope you are fine!!

    Btw, could you take the time to ask why Blogher accepts ads from Diet Coke? It has enough Benzene to cause Cancer. Ref: Farrah Fawcett, Michael Jackson.

  17. So are they going to remove your gallbladder when they fix the reflux? I thought I had reflux and lived on acid meds for two years, vomited constantly during pregnancy, and got so sick post partum that I was sure I was dying (one night of constant, violent vomiting and another a week later of pain so bad I went to the ER thinking it was a heart attack). I had my gall bladder removed and have never felt better in my entire life. If its full of stones, get it out as soon as a you can and you’ll feel so much better.

  18. Side note: Just think – if you’d been in Socialist Canada, you’d be dead by now. Or at least that’s what #tcot wants you to believe.

    Actually, you wouldn’t be dead, you’d still be waiting to SEE a doctor, let alone on the road to a treatment plan inside 30 days of going to the hospital. And that’s IF the government deemed you worthy of treatment within a reasonable time period to begin with.

    But that’s neither here nor there.

    My mom had a messed up gall bladder too and I remember how much pain she was in before they had to surgically remove it. (My grandmother had hers removed years later and I think they just deflated it and then sucked it out – less invasive. I wonder if that’s an option for you?)

    At any rate, I’m really sorry to hear you’ve been having a rough time. It sounds like the doctors just want to make sure they take care of the problem as opposed to just fixing one of the symptoms. Hang in there.

  19. I cannot believe you are home. Cannot. Believe.
    And I hate that people make such assumptions about Canada – yes, we have problems in our health care, but in my experience my family has been well taken care of up here.

  20. Well first of all the real sign of a REAL reporter is when you see stories in the things that are happening to you – ie your illness and The HealthCare Crisis. Beyond that stellar fact, I am just relieved that you know a bit more about what’s happening; it’s got to have been horribly scary all this time wondering what the hell was going on.
    Anyway, I was so happy to read about all the questions you’re asking and loved the part about the tweet questions – so Erin. Please take care of yourself and let others take care of you for a change. We want you well, rested and ready to make waves (and trouble….) again!

  21. You poor thing. That’s so awful. Why can’t life be like TV, where the cute doctor can’t rest until he solves the mystery and gives a definitive diagnosis? I wish you all the luck in the world.

  22. Holy shit. I’ve been getting your tweets and didn’t understand what the hell was going on. Until I bothered to read this blog post. Go you for maintaining a sense of humor. It’s amazing to me the amount of shit we, as moms, are willing to put up with from our own bodies and yet if either of my children even wince in pain, I’m on the phone with their doctor. Immediately. The whole holding-the-family-together thing is quite a cross to bear. Take care of yourself. We just have this one body. As much as we may hate it sometimes for hindering us.

  23. As a severe GERD suffer, I am sorry to hear all this. I have had all the tests you have mentioned, some many times over. I take meds daily, but have the days I can still vomit acid. However, my case is not “Severe” enough for two doses of prescription meds a day nor have surgery.
    I hope you get some answers soon and it helps.

  24. Good to hear you’re doing better and best of luck to you with the next chapter of surgery/ recovery. I myself have a surgery (thymectomy) scheduled this week and I am so nervous but you’ve given me a little more strength to deal with this seeing how you’re such a great trooper through all of this. I am living in Canada and I am happy with the health care I am given although I did wait over a year for my diagnosis of Myasthenia Gravis – but that’s because it’s a very difficult illness to diagnose. Good luck to you with your recovery. I on the other hand am not as lucky as there is no real cure for MG. Take Care.

  25. I’m so sorry to hear about all the pain and discomfort you’ve had to endure, not only during your hospital stay but prior. Gallbladder surgery typically doesn’t have a lengthy recovery, from what I’ve heard, don’t know about reflux.

    My sister in law has had her gallbladder removed and it has really helped her, she had years of pain. Let’s hope your problems begin to diminish after your upcoming surgery, this has got to be a lot to deal with especially with your kids.

  26. hope you get some educated answers and medical recommendations soon. i know it’s v frustrating waiting and putting the fate of your health and well-being in their hands. happy to hear you were diligent in demanding thorough explanations. too often docs treat us like morons or wave our questions off like they’re nonsense. shame on them. get better soon.

  27. I am going for an appointment Wednesday morning in no small part due to what I understood you to be going through. Hoping you are relieved from the waiting, inconvenience and discomfort soon.

  28. Francine Hardaway I am with you! The Healthcare Reform (USA’s) seem to say that if some politician say ADMINISTER anti-depressants to those 7 weeks pregnant, the docs can’t say no.

    In the past it took as long as 10 to 20 years to die slowly (and with lesser pain). Now it’s accelerated deaths, with no energy and no hair (balding). Do you trust your doctor the way MJ trusted his WITHOUT question? Mammograms bring deaths closer to cancer sufferers…did anyone not notice?

    Time patients seek any many opinions as possible before they opt for a treatment. Time doctors get an ice-cold shower to wake themselves up too!

  29. When I read experiences like yours I feel less grumpy about taking my Canadian self and American hubby and kids back to Canada. I love the U.S. and I had insurance while living and working there but I was scared s—less about the possibility of not having insurance or losing it due to job loss or some arbitrary decision of an insurance company.

    Now your reason for not going to the doctor when you should have likely has nothing to do with coverage, but I knew and know too many American girlfriends who are self employed and choose not to go to the doctor when they know something is up simply because they don’t have health insurance.

    Why is it Americans are so afraid of what the President is suggesting? How can any inconveniences associated with a national health care plan be better than NO COVERAGE at all. In Canada it works wonderfully well – not perfect but great. We’re not a socialist regime, our tax rates are moderately higher than yours – I lived and worked in both countries and can hardly tell the difference.

    My daughter lives in the U.S. and I want her to have access to decent health care coverage so come on folks stop listening to the moronic scare tactics of crazies. Ironically enough it seems to me that the biggest critics of the Obama health care plan are some of the very people who have the most to lose if the Obama health care plan bombs.

  30. Erin,

    I can’t remember the last time I was moved so greatly by a series of blog posts. I am so sorry for what you have encountered and are going through, physically and emotionally, and I am keeping my fingers crossed that they have indeed found the root causes of your discomfort and will be able to swiftly take care of them and you’ll soon feel better.

    I also continue to be appalled at the stories of our health care systems and the consequential delays, and all of that. I’ve seen friends in horrible situations and I’ve seen my own. I am sorry to hear of yours.

    Finally, the reason I am truly commenting is to thank you, thank you so much for being open about your health ordeal and your fears and your emotions and the experiences. I, too, have been struggling with health issues a great deal the last year. Many of them heart related, as I am public about those to help others. But what I don’t talk about is the endoscopy I had earlier this year due to unexplained nausea and all of the damn pills they have me on because the nausea persists even though my esophagus is fine. Or the colonoscopy my doctor wants me to have but I am too terrified to have, so I didn’t show up for it — even though the doctor said I am young enough to basically face anything and be OK if we catch it NOW. Even though I have unexplained anemia.

    I’m sharing this because I want you to know that because of your openness and willingness to be real with us, I’m going to call and make that terrifying, uncomfortable appointment, and stop medicating all of my symptoms.

    Sending much support your way.

    Jennifer

  31. Bravo Jennifer.

  32. Get well soon!

  33. SoloPocono says:

    Hi Erin,

    First and foremost, Thank You for your brutal honesty whilst “reporting” under, shall-we-say, less than graceful circumstances. I’ve also been through the whole stomach thing. Unfortunately though, until I moved back to where my parents lived and they told the Docs that THEY would “cover everything”; I had to deal with the daily queasiness and throwing up, waking up to acetic vomit in my mouth several times a night-despite religiously sticking to a strict diet. Unfortunately, I didn’t have, or couldn’t afford any medications.
    See, less than 2yrs earlier, I’d been booted by my 20yr insurance company, who insured me through my employer-A hospital.
    I’d been thrown off a horse while taking a break from my 3 job life, and utter chaos at home. That month had begun with a tornado destroying most of our home, and ended, along with my marriage, at the end of the month after my husband found out I would likely incur permanent spinal damage,…and up to a year in spinal rehab. But, although I ended up with only 3 weeks of rehab-it wasn’t my husbands girlfriend, (yea, I know), but instead my insurance company who decided I wouldn’t be getting the care I so desperately needed at that time. Despite knowing FULLY about a genetic disorder that I was born with, and even covering an “experimental surgery”, ten years before that was specifically due to this genetic disorder–all of a sudden it became a “pre-existing condition unknown to the insurer”.
    “Well, THAT would NEVER happen to ME, I LIKE my insurer and they’ve ALWAYS done right by me!!”. Yea, I said that, I lost track of how many times when I’d care for my uninsured patients. It DID happen, AND, I ended up losing EVERYTHING, and I mean everything. Because I was unable to complete the physical/spinal rehab that my injury needed to heal correctly, I had serious problems, (after I was approached as I lie in traction in the hospital by the “business office” to tell me I was being discharged because I no longer had coverage), and not only lost my home, (to medical bills), my career,…but worst of all, I lost residency of my 3 children.
    Over the past 35years, I have watched the healthcare “industry”, (a term itself that makes me shudder–I just never saw it as an “industry”), go from a Patients First to a PROFITS FIRST Business. During my 2nd year of medical school, I’d already seen and experienced enough evidence to become a VERY early proponent of Single Payer. At a recent, fairly local, “public discussion” of healthcare reform, I saw several things that struck me. People YELLING, yes, yelling,..that they didn’t want the Govt. telling their Doctors what to do or what NOT to do. Uhmm..this took me aback a bit. Both in my personal and professional lives, I had more “decisions” made by health insurance than by my Doctors. AND, *I* was a “lucky one” who had friends that would do things anyways–my patients didn’t have that choice. In 7 years now on Govt. Insurance,..I’ve filed 2 appeals, both ended up getting covered. And no, I no longer live anywhere close to where I had with all my medical connections. These lies, mis-statements, rumours, hysteria,…have all GOT to STOP so we can achieve some REAL Healthcare reform, REAL discussion…There is NOTHING about “euthanasia” OR “rationing” ANYWHERE in the current bill from the Senate. I assume everyone knows that this isn’t the only bill out there though–there are still 2-3 different versions going around the House right now. Personally, and after 20yrs of researching-Single-Payer makes the most economical sense, not to mention it would be best for the patients. However, I’ve also known for 20yrs that the ever increasing profits, trillionaire health insurance and Pharma companies will do ANYTHING to stop ANY reform. If a compromise isn’t reached, every one of us will be paying dearly for the rest of our lives.
    And Please-if you know anyone who is guilty of using personal attacks in this discussion–whether calling Obama “Hitler”; fantasizing about Nancy Pelosi being poisoned; or personal attacks on Senators and Representatives–tell them to GROW UP!! Has anyone ever heard of *Respect*? Instead of fear and division, EVERYONE in this Country SHOULD be coming together to construct a reform that puts US First!! THIS site demonstrates things I saw first-hand. http://sickforprofit.com/
    PS I also had my own business for 2yrs doing Quality Assurance checks for Health Insurance companies.
    PSS-despite a gallbladder removal and constant medication for severe reflux; I STILL have problems. I’ve also had recurring gastric ulcers. We believe that all this irritation and damage were caused by years of taking NSAIDs-or, anti-inflammatories such as ibuprofen, naproxen, and even Cox-2 inhibitors, especially if you have a history of irritation.

  34. Whoa, Erin, an unpleasant few days to say the least. I really hope they can handle this with as little surgery as possible and as soon as possible, so you can recover fully and resume your life… symptom-free.

    Oh, and a little oil on a piece of cotton will get rid of the sticky stuff really quickly.

    All the best!

  35. Holy Crap, you have certainly been through the ringer! I am so sorry about this. Makes me think I better get my physical. I haven’t had one (or the pap smear) for six years. I sure hope you get the relief you need, and soon!

  36. jon pinion says:

    In the interest of good taste, I held this posting until I heard you were ok:)

    http://www.youtube.com/watch?v=6M17aG_Po2Y

  37. Ack, I have to catch up on my blog reading.
    Firstly, I am so sorry you had to go through this crap. If you ever need to vent, find me. I’ve been through it all as well. (They knocked my out during my scopes, and I woke up during the third, {or was it fourth?} sat up, drugged and confused, and tried to rip the thing out.)
    The gallon of horrible goo? (I suspect it’s salt water.) Chugging a gallon of salt water is not real high on my list of shit I ever want to ever have to do again. Shudder. Again, soooooo sorry. Hugs.
    Also: god.. Healthcare. Please. Someone. Help.
    With my health problems, and what we have to pay for our “good” health insurance, we are barely treading water. And I know I am one of the lucky ones, to have insurance at all.

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