My bleeding ulcer

With the stress of the past few months, I've been restless at night.  On a Tuesday/Wednesday midnight, I rose to work on a house project, got light-headed and then threw up. It was dark and I thought, that's odd, my puke looks black...must just be my eyes in the dark. I have work to do.

The next few mornings I saw the classic symptoms of a bleeding ulcer and my condition deteriorated until I could barely walk. Saturday morning I nearly fell of the toilet and couldn't finish taking a shower. I managed to do a call for a volunteer activity I am involved with. Saturday was a busy day for kid activities too: There was a science fair Fat Tony wanted to take the elder to, an open house for Tae Kwon Do, and two cub scout activities. I didn't want the elder to miss them, so the younger and I spent the day watching videos and I made beef noodle soup. Mmmmm. We resolved to go to the ER that night if I didn't improve. Fortunately for all of us, I pulled out of my nose dive.

During my decline, I finally arranged a visit to a doctor. Although we've been here for almost three years, I have been avoiding finding a doctor. Yes, I know. Very dumb, but there it is. Thing is, my insurance covers regular check-ups and this counted as one. If I had been on the ball and already had that check-up, this would have been visit that I would have to pay for. So I found a family practice in the town next door and called for an appointment. I was surprised. They scheduled with a Physician's Assistant for Wednesday. They told me to fast for a urinalysis and a blood test.

Wednesday (one week after start of symptoms):
By Wednesday, the day of my appointment, I was feeling positively energetic--getting out of bed at will, showering, walking (although with a lot of head pain and distraction because of the pounding of my heart I could hear in my ears). Yessiree, picture of health. FT drops me off and I fill out papers, people are cordial, but not friendly. The nurse has no name tag and does not introduce herself. I have no idea who she is and it seems like she doesn't care if I do. I pee in a cup, give my details about the past few days, let the PA do what she does and they send me on my way with nary a good-bye, thank you for coming. I had to check with them that I was all done and ask them if I needed to do anything else.

They said they'd have results of the blood work the next day. If I wanted a copy they could fax it to me or I could pick it up. Fax? Really?

Thursday:
I get a call from Monique (a nurse, presumably, definitely not the PA from the day before) at family practice with the results of my blood test and a recommendation that I schedule an appt with Dr. So-n-So the gastroenterologist for a colonoscopy and upper GI endoscopy (EGD). They found that my hemoglobin level was significantly low (6.5) and want me to go in to check my guts out. I say to Monique that they are worrying me and what is normal for hemoglobin anyways? She says that 12 is average and anything under 6 is cause for a transfusion. She also advises getting some Prilosec, and says they might want to put me on iron depending on the results of the tests. I ask why it would be surprising if I wasn't iron deficient. She says they just want to wait for the results before recommending anything. This makes no sense.

I mull over this information and delay calling the gastroenterologist, knowing that I have high deductible insurance and I feel much better. My facts: I know I am prone to ulcers, I most likely had a bleeding ulcer and lost a significant amount of blood, I am better and understand that I can't rely on pain to medicate. I have the Prilosec, so what more can they tell me? What would all this expensive prodding and examination tell us? I suppose I might have a pancreatic tumor. Could they determine that with the EGD? I eat an early lunch and mull this over. Shortly thereafter, I get another call from Monique. She says they (the PA) are scheduling something for me now. She will get back to me with more details. She calls late with more details: show up for an upper GI at Half-Hour-Away Hospital at 7:30 am tomorrow. The procedure will be at 8:30. I agree. After all, isn't it better to know what's going on in there, right? She says she will call back with more details. By 4:22 I have not heard back from her so I call the practice and speak to her asking for more details, instructions, confirmation and the like. She says she will check and will call me back later. I wait and she confirms that I should show up at HHA hospital and go to the Outpatient desk. I should have nothing to eat or drink from midnight on. I ask repeatedly is there anything else I need to know?

This means FT and the kids have some adjusting to do with their schedules as it is a weekday. I can't sleep that night because I am nervous at the thought of someone cramming a tube down my throat. I am afraid that I will be awake and will gag. I don't want to think about it and can't bring myself to do an Internet search. I am just trusting everything will be ok.

Friday:
FT and I get up early. The boys are still asleep when we need to go. I find that the younger has peed in his bed again and he has to go to preschool after I am dropped off, change him and wipe him down, warm up the car and then make sure the elder is ready to go. We all manage to get out and I make to the hospital on time. I go to reception, who does not have me on a list, then to registration, who also doesn't have me on any list. I give the woman at registration, Deanne, everything I know--my PA's name, the family practice name and Dr's associated with it (since I had not met them, this involved some internet searching on my phone), Dr So-n-So's name and all assorted details about why I am there. I get out my notes and tell her everything I know. She does her best to find me in their system, makes lots of calls, and tells me I am not in their system now or in the future, not here,there or anywhere! It is nearly 8 and I decide to give up, call FT to let him know and to ask him to come pick me up. They all stopped for doughnuts and are not far away. I go to the outside lobby to wait and finally take a sip of water.

Then I get a call. It is someone who asks me if I intend on showing up for me appointment with Dr. S! Say what? I tell her that I have been here since 7:30 trying to find out where to go. I tell her I have drunk some water now and I don't want to go through this. She says that I will be billed regardless. My head nearly explodes in frustration. FT is calling to tell me he's here. Friendly Nurse tells me she is coming over to talk to me. I go to tell FT that I will stay. So he heads back home to start the school day with the boys.

I meet Nurse Becky at registration. She tells me they didn't have me in their schedule, apologizes, sends me to Laurie at registration, who takeS in my financial information. She is notably nervous because she has to deal with this hot-head crazy woman. I give her my info, sign their consent forms, then ask her what their estimate is of what I will need to pay. She has call her contact twice. Once to give me the details of what my plan is then to find out what the code and cost for the procedure is (EGD, code 43226, est hosp cost, $1372.15; my deductible: $3300, but might be more because I am on a family plan). She says that there will most like be additional tests And the physician's fee to pay. She then asks me if I would like to pay now towards my deductible. I say no. I would like to see it altogether in one bill.

She sends me down the hall with a green slip of paper--yes, down the hall, not 100 feet away, to ambulatory care. The desk is busy, but they notice me and get someone to attend to me. She looks at her list and can't find me, then she sees my name added on at the end. Someone wrote my name down there. She gives me a slip of paper describing what I should be prepared for today. I wait and am eventually called in.

I follow Loretta to the room where I will be recovering in. She gives me instructions on what to take off and put on and I make myself comfortable. Eventually Becky comes to take down my medical info. She types this info in to a computer. There is also a Sue who comes to stick me with needles that will attach me to the IV. She tries on my hand, then has to go with the arm.

I talk to both Becky and Sue and fume about why they can not find me by my name. I needed to know Dr. S!? No one told me about a Dr. S.  I have a name, why is this not useful to them? Through more conversations with Becky and the very kind Sue, it seems that the hospital had no idea I was coming.

After a number of theories-Deanne didn't call the right place, Allscripts is hard to implement... I have come to believe that Dr S's office told him to show up and did not call in this information to the hospital. I don't know how this information should get communicated, but apparently, my doctor's office doesn't do it, nor should I. The responsibility for informing the hospital fell to a practice and people I have never seen or spoken to. The ambulatory care unit only called me after Dr. S showed up and asked where I was.

They have more forms for me to sign. I start to look through it and the nurses say something like, this section just says that we've told you about the procedure. I say but you haven't told me about the procedure. They explain what will happen. I get to another section. They say that this says that the doctor and the hospital are separate. I crack a joke, so I should sue you separately? I just don't care anymore. They respond that it is related to billing. I will get separate bills.

Loretta comes to tell me that they should start the procedure shortly. I should be done by 10. I call FT to convey this information. She also gets his info so they can call him when I am done.

They tell me that they will start the procedure at 10 since I drank the water. I call FT to revise the time. I find out they are late for preschool (they also forgot snack since it was out turn to bring snack for the kids this week).

The nurse anesthetist shows up and introduces himself and explains what he will be doing. He then asks me if I have someone to pick me up and sign documents for me. I say to him that because we have only one car, I do, but I was never told of this beforehand and this seems a little late to learn of this condition. He says that he will convey this information on. I ask him about his background and how many procedures he does a day. He says about 8.

Sue and I talk and she wheels me into the procedure room where the lights are dim and I begin to feel more relaxed. Sue has awesome bedside manner and notices me eyeing the equipment. (I'm noting that the equipment comes from Olympus and it hooked up to a big black IBM computer. When did IBM desktop stop making computers?) she and I talk about the scope that is about to go down my throat. She says that it's thoroughly cleaned and disinfected. I ask how long it takes, she says about 30 minutes. She also says I'm the first on for today. We chat about other hospital related things. We talk about the flu and vaccinations. I learn that there is a condition associated with getting the flu shot that some number of healthcare workers do get. They are forced to get these shots if they want to work, but if they come down with this debilatating condition, as a colleague of hers has, they can not get worker's comp.

Another nurse-L-comes in and tells me she'll be helping. The nurse anaesthetist appears. Then Dr. S. He introduces himself and starts asking about why I am there. He wants to know my symptoms and when they appeared. I say that I told this all to the nurse when I was admitted. Then I tell him again. He pushes on my abdomen as he is checking things out he asks about my hg level and we discuss what I was told about getting on Prilosec and iron. I say that I haven't taken either yet. This is when I learn that iron will stain the stomach so this is why they didn't want me to take it.

They have me turnover on  me left side, start the propofol And have me bite down on the green plastic thing through which they will stick the scope. I am out like a light.

I wake up in the recovery room, hearing someone talking to FT. It is a bit before 11. I move around and Becky comes by to see if I'd like some juice. I go for the cranberry juice. She gives me a pile of papers to read, but it doesn't register with me to read them right away. She comes back again and asks if I've read them yet. Oh right. I should read them. I see many highlighted words with-itis at the end. She says Dr. Shah will be there to talk to me about it.

I realize I am cold and buzz for someone. A male nurse gives me another blanket.

They tell me I can get dressed and I do. FT and the boys come and I snap some pictures of the room. I go to the bathroom across the hall. While I am there, I hear Dr. S talk to ft and says that he has a call to make. I come out of the bathroom and spot Dr. S's file sitting on that table that they set your food and drink on. I take pictures of everything I don't have already, then I start looking at the report.

Dr. S comes by and we are all standing looking at the papers. He says they took a couple of biopsies one for h. Pylori which came pack positive (surprise!) another of this growth that looks like extra tissue I've grown from repeated scarring. I look at the pictures and ask him if there are any ulcers. He says no. I realize later I should have asked what all the -itis's meant and how you can spot them in the pictures.

We talk about the drugs and he says he will prescribe something. I say I already bought Prilosec. He says that would work too. A nurse later comments that Prilosec would probably cost less.

They tell me I am free to go, but I need to be wheeled out. FT and the boys go to pull up the car and I wait for the volunteer to come. He is an elderly gentleman and we wait together. Then I am free.

Friday afternoon I got a VM from stacy at Dr. S's office saying they had a prescription for me but they don't know my pharmacy. I have no idea what they are prescribing. I will call back on Monday and talk to Stacy later.

Saturday:
Jackie from the family practice calls to check on me. I list all the -itis's on my report and she exclaims, you poor thing! I try not to feel bad for myself.

The further I get from this experience, the less angry I am and in all likelihood, I will be subjecting myself to an experience like this again. Having worked in customer service, I am truly unimpressed at the level of customer service I received in this experience. For something as serious as a person's health, I think a minimum requirement is to schedule based on a person's name, not whatever the doctor says.

While these doctors have received years of training, they are still providers of a service, not the star of the show. I had to interact with many people, repeating information, correcting assumptions, feeling like I was working for them. What in the world would have happened if I was disoriented? This has been ugly evidence that despite the shiny surroundings and abundance of highly trained professionals in healthcare, it is field that is in desperate need of change. Exorbitant costs with little "value" as defined by the patient in return. As a customer, I feel like I've been taken advantage of, just another source of revenue for the doctors and hospital without the courtesy of any personal concern. I feel like I am just numbers to them and while I understand that is the bottom line in business, businesses I've been associated with do make an effort to treat people as people.

I've done my best to stay out of this messed up system and I wish that I had never made that appointment. I recovered on my own, but now I can look forward to multiple costly (and I am betting unintelligible) medical bills when I will be coming off of severance along with other sources of stress.

I am trying to make the best of things right now, thinking about what I've learned here and letting the experience inform me on my next life choices. But right now, I don't know what more I can do.