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Bloody HMOs

I see I didn't post this yet! This post was from 6/17/07, but I am posting it now so you can read it before you read the conclusion through Sarah's surgery (the next post). Please forgive the omission.

This post is extremely graphic. If you get queasy reading about womanly dysfunctions, you might want to skip this one.

My partner of 21 years has been bleeding for 30 days now. Dysfunctional Uterine Bleeding can happen for a variety of reasons (and you can read about them in the link above). Who knows why Sarah is bleeding right now.

She started with her period and it has gradually gotten heavier and heavier until when, when a week ago, she told me about the bleeding. I didn't even know she was still having her period all this time! When she told me, she showed me. She sat on the toilet and pulled out her tampon and a HUGE clot fell out along with the tampon, over-filled with blood. The pad she had on was filled with blood as well. She looked at me and said, "I'm not peeing." Blinking, I listened to a trickle of blood falling into the toilet. I asked her how long this had been going on and she said that it had been this bad for a few days, but that she'd been bleeding for a month now. I was flabbergasted.

Sarah made light of it and said she thought that maybe now she was finally sloughing off the lining of her uterus, that this was her period. I was skeptical, but as a midwife, abnormal GYN isn't my forte. The next day, I asked her how the bleeding was and when she said it was the same, I told her she had to see someone NOW and to call the hospital.

Calling the appointment line, they put her through to a nurse who told her she was hemorrhaging (duh) and she needed to lie down, put her legs up and get to the Emergency Room right away. Could she drive? Laughing, she said someone would drive her... but she'd been bleeding for a month and she didn't think she was going to pass out in the next few minutes getting to the hospital. The nurse was terribly emphatic, however, about her putting her legs up. We had a great laugh about how Sarah was supposed to get to the car with her legs straight up in the air.

During the 10 days or so the bleeding had been the heaviest, Sarah would have a few hours of having one tampon in, but from the hours of 4-8pm (like clockwork and for no explainable reason), she would bleed through an extra super tampon and soak through a pad every 20-30 minutes. The clots she passed were the size of the palm of our hands. I was horrified every time she showed me what was coming out of her body.

And the blood. Bright red. Bright, bright red bleeding that I knew wasn't normal period blood. That was my clue that something was terribly wrong.

How did she bleed so much and not faint? Sarah has hemochromatosis, a disorder where the person has an overabundance of iron in the blood. It isn't unusual for her normal Hemoglobin to be 18 (most normal values are 12-14). Those with hemochromatosis have to give blood to get rid of the red blood cells, but because Sarah's periods have traditionally been every 23-25 days and have always been very heavy with clots, her iron level, while really high, have stayed low enough to keep her from having symptoms from her disorder. Even though she wasn't fainting, she was feeling extremely tired and getting cold a lot - both symptoms she would never normally have.

Driving to the hospital, Sarah tried to put her legs up in the air and we laughed.

Once in the parking lot, I gathered our stuff and took a tad longer than she wanted me to, saying, "Hey, I'm standing here with my legs hanging up in the air!" I hurried.

We got into the Emergency Room and it was packed. sigh

The sign said Come to the front of the line if you are having any trouble breathing or are bleeding uncontrollably. We were second in line, so Sarah didn't let me cut in line. We told the checker-in lady what was happening and we got to see the triage nurse within 35 minutes or so. That's expediting for ya.

The triage nurse started an IV and sent us out in the waiting room for another 2 hours. She didn't sit with her legs up in the air.

We got called back into the GYN room, the tiniest little ER room I've ever been in, with one of those short exam tables with stirrups permanently poking out, no oven mitts on the foot rests. The room's nurse gave Sarah a paper drape and told her to undress from the waist down and headed out. I looked at the table and laughed. There was nothing on it but paper. I poked around and found a chux and put it on the table for Sarah who'd gone to the potty and removed her overflowing tampon.

The doctor didn't take long to enter. He was exhausted. I tried to make nice, telling him I was sorry we were in his ER, that we'd tried to make an appointment, but they wouldn't give us one. That we knew better, but they sent us there. He was humorless and asked Sarah to get in the stirrups, asking her questions as he began examining her. He used the long Q-tip thingies (that I call drum sticks... every practitioner seems to have a different word for them) to clean off her cervix (I was watching over his shoulder) and saw the clots and said she needed an ultrasound. He pulled off his gloves and silently left the room.

We blinked at each other and shrugged.

30 minutes later, a sweet giant came and picked up Sarah on a gurney. I put a new chux on the gurney before she climbed on.

Down in the sono room, it was empty and silent... midnight, it seems, is a great time for an ultrasound in this hospital. The tech was nice enough, efficient. She was clear about her religion, telling us she homeschooled because she wanted to instill her religion in her children. Sarah and I got the clear message that our "lifestyle" was being judged, but couldn't have cared less at the moment; we needed her skills, not her personality or friendship.

Sarah had an abdominal and intra-vaginal sono and we then were returned to the ER via the same sweet giant man. We waited another 45 minutes before the doc came in and said that Sarah's endometrium was 2 centimeters thick. The clinical definition of a "thick endometrium" is greater than 5 MILLIMETERS! Eek!

The doctor began blathering on about the normal recommendations - the hormonal treatments for Dysfunctional Uterine Bleeding - Provera, Depo-Provera, Progesterone. Sarah (and I) already knew she didn't want to take any hormones and told the doctor as much. He shrugged and said he'd give her a referral to see a GYN in three days for a D&C and walked out.

When we didn't hear anything in three days, I called to find out when I could get Sarah in. They told me in early July. I nearly choked and told them that was absolutely unacceptable.

This began three days of crap... talking to supervisors, nurses and nursing supervisors. Finally, I angrily found my way to the Liasion and eventually had to figure out our own solution:

Couldn't the nursing supervisor call us with a cancellation and let us jet over to the clinic that wasn't even 15 minutes away? In fact, we had two clinics 15 minutes from our house!

After being told a dozen times they couldn't get a hemorrhaging woman in to see a GYN until (by now) mid-July, suddenly they could see her 4 days from now. We grabbed the appointment.

And so we wait to see the GYN. I continue researching, knowing she needs the D&C, but really wanting her to have an ablation, too. While the likelhood of her having cancer is slim, a hysteroscopy would be a great idea, as well. The only thing is, if she has the ablation and stops having periods for a year, she's going to have to go to the Red Cross and get blood drawn twice a month for a year. Wouldn't you think she could donate her iron-rich blood to some anemic person? Nope. They throw that blood right in the trash. Red trash, but the trash, nevertheless.

I'll let you all know how it goes.

Don't you love HMOs? I can hardly wait to see Michael Moore's Sicko - a whole movie tirading about HMOs. While our HMO was wonderful during my chronic illness and Sarah's eye cancer, during this bleeding thing, it has just been horrible! Let's see how they handle her getting the D&C! If they give her a hard time about it, I'm going to have a fit. I told Sarah she's going to have to tell the doctor she has a history of severe depression on hormones so she isn't forced to take them. She asked me what if they ask why isn't it in her chart and I told her to tell them it was when she was with her ex-husband and it wasn't an issue in over 20 years, so she never brought it up again. We have the story ready.

We're ready.

Reader Comments (3)

Maybe it's different where you are, but I was under the impression that people with hemachromatosis can donate blood (and not have it trashed). My husband donates all the time (I can't--due to my chronics) and he was the one who told me.

There's more here--apparently it depends on your location:

I am so sorry she had to go through all that, I can't imagine.

June 23, 2007 | Unregistered CommenterAngel

That sounds very scary to me--but I am glad that you are able to make some ground in getting her the right kind of treatment. I think it is amazing that Sarah didn't pass out from all that blood loss either!

We just moved to PA and are about to go on Medical Assistance which I believe is an HMO--your story makes me a little nervous about HMOs. We have always had PPOs in the past.

Just out of curiousity, why do they throw the blood in the trash?

June 23, 2007 | Unregistered Commenteramelia

This from the Red Cross:

Hemochromatosis (Hereditary)
American Red Cross does not accept individuals with hemochromatosis as blood donors for other persons at this time. However, a pilot program for hemochromatosis donors has been completed and is being evaluated for possible system wide implementation.

Other sites explain there are ways to have those with hemochromatosis donate, but they have to be examined the DAY of the donation and have to donate at specific sites. The likelihood of that happening all the time for someone like Sarah isn't so great... at least not as great as her going to the Red Cross or finding a Red Cross donation site to "let" blood her twice a month when she needs to.

Very interesting, eh?

June 23, 2007 | Unregistered CommenterNavelgazing Midwife

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