Wednesday, July 9, 2008


In October 2003, the Matron developed a tummy ache.

Ache? We're talking face to the knee, this-will-probably-kill-you-pain accompanied by vomit with impressive projectile qualities. More pressure than the downstairs shower, that sorta thing.

After watching his wife tough it out for a few hours, John ordered a quick fun trip to the Emergency Room. Yee-ha! She knows how much fun ya'll have had there, too! After determining that she did have not stones in any organ, the ER physician suggested -- based on the fact that the Matron was breastfeeding an eight-month old baby -- that her problem was INDIGESTION. Something about estrogen roughin' up the esophagus. So sick was she, that she bought this line, hook, line and lethal sinker. But she inquired after morphine (denied!), for her heartburn.

ER Nurse, pulling aside the Matron as she hobbled toward the exit: "Honey, women who've birthed three babies don't ask for morphine for indigestion. Get to your own doctor the second that clinic opens in the morning!"

The Matron felt a wee bit better when she saw her family doc the next day. Funky, odd, a slight discomfort, but, better. Still, a CT scan was in her future -- the following day. Which meant her sweet little appendix had oh so much time to grow, grow, grow. Turns out you can puke so much that you push the appendix out of its regular place and into something more comfortable. Which she did.

Here comes the part where the Matron sits on a hospital bed for over 8 hours, waiting for the surgeon who is rushing toward this emergency appendectomy. Tick-tock. Tick-tock. Tick-tock. Yes, over eight hours. E-M-E-R-G-E-G-E-N-C-I-E-S generally indicate speed?

During this 8 hour wait, the Matron's pumps grew and grew and grew and grew. Her breasts blew into small leaking watermelons. Breast pump? She inquired? Begged! Demanded! While the hospital staff was trying to figure out where such an item would be located and how to order one (uh, there's a maternity ward at your hospital, sweeties) John had to bring in Merrick to nurse, twice. While Mommy was waiting for surgery.

When no surgeon came running in direction by 8:30 pm, (after a weeping phone conversation with a friend who is a corporate attorney and accustomed to getting his way), she walked up to the nurses' station, yanked out her IV and said, "I am going to die at home."

That's when somebody called the surgeon. Yes, they FORGOT to call the surgeon. Don't worry, there is much more fun up ahead!

Looking at the CT scan that is well, about ten hours old by now, the mortified surgeon notes that the appendix is way way too big for laparoscopy and requires a big huge slice down the middle. Fine. Stop talking to her and take that damn thing out! Which he did (thank you, Nice Surgeon!).

And as she lay recovering, say 40 minutes post-op at 2 a.m., the night nurse wheels in a dusty machine with tubes flying every which way out of it. Here's what she says to the drugged, weary and milk-soaked Matron: "Here's the breast pump. I sure hope you know how to use this thing because I sure don't."

With that, she left.

The next day, the Matron's five star hotel experience continues. Watching the antibiotic drip from the bag into her veins, she asks the nurse (many of them, actually), if the drug is compatible with breastfeeding? Can anyone tell her? Remember, she needs a drug that works with babies? Yes, yes, she knows this might be troublesome and extra work, given all her allergies to consider, to boot, but that baby thing?

After about two hours of this, she gets a phone book and dials Bober Drug, the family owned pharmacy she patronizes. She tells Lloyd what's going on and what's dripping into her blood stream.

Lloyd: "Pull out that IV! That's the worst possible choice! I can't believe they gave you that!"

For the second time in two days, the Matron pulls out her IV but this time she is crying. She is DONE. The second shift nurse is newly on duty, and finally finally finally someone notices the Matron. Within half an hour, that nurse had the surgeon, pediatrician and Lloyd on a conference call, concocting the antibiotic that would work with the allergies and the baby. Thank you, Nurse Nancy!!!!!!

The Matron knows this is a long story and thanks you for hanging in there with her. There's more.

Sooooo. . . . . . . six weeks later, the Matron has pretty much recovered from both the surgery and the various tortures. Indeed, that appendectomy was nothing short of a miracle. Before the surgery, the Matron's body had been behaving badly. Hot flashes without the menopause part! She would turn fire engine red and then the sweat would start popping. Please don't get her going on, ahem, the bathroom. Seems like food just went right through her.

But all those problems were cured by her appendectomy! Indeed, she joked about that, all the time, how her appendectomy cured her high blood pressure and tummy troubles. Today, she's relaxed. Comfortable, sitting in her chair in the surgeon's office, listening to the nurse prepare her for the follow-up physical exam.

Nurse, reading out loud through the Matron's chart. Imagine tone of voice slowly changing, pace slowing: "Okay -- Surgeon X operated and that's who you'll see today. Emergency appendectomy at St. Joseph's on October 29th. Forty-year old female - oh! Oh my! You have cancer. They found cancer in your appendix. Did you know you have cancer?"

Here, the nurse catches herself and very very anxiously attempts eye contact with the Matron: "Did anybody tell you?"

Now because the Matron's blood pressure has just reorganized her entire ecosystem and she is living in a world that is entirely completely different from the one 30 seconds earlier, she has a hard time remembering Language, but when she grasps that function again she says: "No. Nobody told me."

Turns out the pathology report on the appendix (standard procedure) got lost until the janitor found it, that very morning, on the floor somewhere in the hospital.

Sometimes when the Matron tells this story, she cannot quite believe it herself. But this is one time she doesn't have to stretch the truth for the sake of a story.

The next six frightening weeks were spent assessing. Now, the Matron took over. Instead of relying on her assigned oncologist, she herself sent her appendix to the Anderson Cancer Center in Texas and consulted with not one, but TWO national experts on carcinoid cancer. Because those hot flashes and diarrhea? The Matron had been symptomatic for carcinoid syndrome! Her tiny tumor had been working hard on its host's destruction.

Even though her surgeon poo-poohed the carcinoid ("Happens all the time"), her oncologist did not, noting that of all people who die from carcinoid cancer, 1/4 to 1/3 have tumors originating in the appendix.

Thank God-Buddha-Allah-Oprah, both national experts, the pathology tests and her very own oncologist determined that the chances of carcinoid recurring were about 1% and that percentage point was only because a weak tip of the tumor had invaded a blood vessel, potentially tapping the entire well-traveling vascular system.

But the Matronly imagination could not help but wonder what would've happened had that appendix burst? Say, because she thought she had indigestion? Or while she was waiting for the surgeon? Cancer cells popped like corn, could have coursed and seeded throughout her body.

Rage rekindled, the Matron filed a report with the Minnesota Department of Health, chronicling all the fun times she has just recounted, here. She sent a copy of her six page complaint to the hospital, whose attorney and ombudsperson nearly killed one another in their fight to become the Matron's BEST FRIEND.

Imagine their shock when she didn't want to sue! Indeed, they would do anything!

Here's what she wanted and got.

  • Breast pumps on every hospital floor
  • Breast pump training for nurses
  • Firmer procedure for medications and breastfeeding patients
  • Letter to Matron's insurance company stating that Matron never ever ever had to enter those doors again and could go anywhere else!
  • Appendix itself for a two day stint in the library at her children's elementary school

And then the State of Minnesota made it even better by finding that the hospital violated not one, but two federal regulations and fined them thousands of dollars! Now, that was fun for the Matron!

She's fine, these 5 years out, but still has annual check-ups and -- a different outlook. Today was one of those days when she remembered and the world looked a little more lush, a little sweeter. Thanks to this man, who is sharing his journey with the cancer that will soon kill him, with all of us.

That's the end of her cancer story. She hopes.


Anonymous said...

As soon as you said hot flashes and diarrhea, I knew where you were going with this.

My father had those same symptoms for almost TWO YEARS before he was finally correctly diagnosed. By then, it had metastasized to everywhere, so he was given 1-3 years max. Two years later, he's still here. He's pretty sick, but he's still alive and that's what's most important to him.

I'm so glad you got everything early and that you recovered well . I can't believe how badly things went at the hospital and I'm glad you filed a complaint and got some changes made.

Cheri @ Blog This Mom!® said...

I had that day too, dear Matron. Mine was "elsewhere" and it is no more.

I was glued to my screen, Matron. Thank you for sharing your story, so powerfully told.

Rima said...

Matron, I don't know if you are blessed or cursed, but I'm glad that you are better and that you shared your story. I have heard many tales of medical mistakes and oversights, but I think yours takes the cake. Or the appendix. Stay well!

smalltownme said...

That was a horror story.

Heather said...

Wow. Good for you on your demands.

How scary that they had probably treated other patients the same way who were more willing to let it all slide. (or they died)

Anonymous said...

Wowee kabowee. I'm speechless.

Manager Mom said...

I am just SPEECHLESS. I think that you are a hero for not suing them into bankrupt messes.

You story is both a caution and an inspiration. I don't know what else to say.

Jenn @ Juggling Life said...

I hope so too.

I had never heard of those symptoms, I will file them away.

Having lost two people to cancer just this year (sister and bff's husband), I'm especially glad you and your family were spared the tragdy.

JessTrev said...

You fucking rock (and you know I don't swear online). Great demands. Glad you took charge. You should check out e-patients.

thefirecat said...

My day came ten years ago this spring, and my doctor and surgeon (and night nurse Tish Plum, whom I love and worship) were nothing but my allies and lifesavers. I wish yours had been the same.

But the breast pump thing was fabulous. Bet they didn't know what hit 'em.

Anonymous said...

I second mamabird, swearing and all.

I want to be you when I grow up.

SUEB0B said...

Wow. That is one crazy awful story. Glad you are ok.

JCK said...

This was an amazing and scary story. I am so happy for you that the news is good. Hears to 5 years! And I think you are the most AMAZING woman to have gotten those changes implemented at the hospital.Think of how much more you accomplished than a law suit - although you certainly would have valid recourse.

Allmycke said...

So often, you hear tales about people who sue doctors and hospitals for the silliest things - and you didn't!!! I bet the board members at that hospital start every meeting by giving thanks to you for their own continued financial prosperity! Instituting some very basic routines for patient care seems like a cheap price to pay.
Thank you for telling us - and now I know that I have Absolutely. No. Reason. To. Complain. About. Anything. The care I received between December -07 and April -08 was absolutely fantastic, all categories!

Jennifer S said...

My hand flew to my mouth at least twice while I was reading that.

I'm so glad you had good news at the end of all of that, and now 5 years out.

It says a lot about you that you didn't sue, and that you asked for the things you did.

Amazing, heart-stopping story.

Anonymous said...

Oh Matron - what a ghastly tale of mismanagement.

I'm so glad you are well and humor in tact!

Suburban Correspondent said...

I think at the word "indigestion" I would have punched someone. That ER nurse was smart. And I'm glad you got good results from your activism!

I have found, personally, that pulling out cords and tubes does get one faster service in a hospital.

Anonymous said...

Amazing story of incompetence, and taking your life into your own hands. Good on you, and good on you for demanding that others receive better care. I think I love you.

Angie said...

Sadly, the treatment at the hospital does not surprise me. It seems to be pretty common these days.

So happy you ended up with a good outcome.

Hot flashes and diarrhea......I will be filing those symptoms.

Thanks for the story.

Anonymous said...

You'll have to tell me sometime which fine institution that was. When I had my gallbladder attack when Nora was 3 months old, I was in the hospital for 4 days before they figured it out. I think they thought I was either depressed (post-partum) or they really couldn't figure it out, although I had the classic presentation for gallbladder issues. It was a blessing that your carcinoid started in your appendix so they at least looked at IT and took it out. Thank God, Oprah, etc!

Anonymous said...

I love that instead of suing, you did something to help others avoid your situation. You rock!

stephanie said...

You are phenomenal - for helping others at the hospital (the breast pump situation is appalling) and for educating your readers.

I have a bittersweet feeling every time I hear Leroy Sievers' segments on NPR; thanks for sharing his blog link.

Anonymous said...

Wow, what a story!

Bonnie said...

Holy Freekin S*#t!! That is unfreekinbelievable!!

"we forgot to call the surgeon"??
"we lost your path report"??
"here's a breast pump - figure it out"??

I hope this made the newspaper. You ever write a letter to the editor?

I'm glad the people at MD Anderson could help you. I go there everyday (I'm in sales) and it is one of my absolute favorite places in Houston. I know it sounds strange to have a cancer hospital be a favorite place. But the attitude there is one of Teamwork to Find a Cure For Cancer and it's actually very inspiring! Extremely smart people as well.

I never understood NURSES who are clueless about breast feeding. It just ain't fitting!

I am so glad you are recovered - what a f&^%ing nightmare!

MANY hugs and kisses -

Julie said...

What a mess! But your taking care of future nursing moms who end up in that hospital is AWESOME!

Melanie Sheridan said...

What an absolute horror story! So sorry you had to go through all of that.It's a good reminder to the rest of us that we are our own best advocates. Brava for using your experience to make things better for others!

Visiting from Bad Mom, BTW.

Lisa Wheeler Milton said...

I didn't realize it started there; what a story.

So glad you are healthy, safe and sound now. And sorry for what you went through to get there.

Janet said...

What an amazing and powerful story! I'm glad you're ok :-)

Kimberly said...

Holy smokes. That is quite a story with way too many "what ifs?" I'm glad you came out of it unscathed and were able to foster real change at that hospital.

Leroy's (NPR guy) story is so sad and brave. My heart aches for him.

Karen Jensen said...

oh, man. . . what a story. I'm so glad you had that nurse and that pharmacist, and your own brave self.

Minnesota Matron said...

Thanks, everyone!!! Yes, it was totally traumatic and unbelievable. Fact is indeed stranger than fiction sometimes.

Anonymous said...

Good for you! I wish more people would behave that way in the same situation.

Maybe our medical situation wouldn't be the shithole that it is, if people would think of others instead of trying to sue the pants off of everyone around them.

Melanie said...

Speechless. My. God.

I am the least litigious person in the world, but your story made me want to sue that hospital's ass clean off.

I'm so glad you're well.