Friday, July 19, 2013

Our Nightmare

Savannah was still having pain around her middle, in addition to the new worrying symptoms of numbness in her hand and foot, dizziness, and blurred vision. I tried to make an appointment with her doctor, but because of stupid insurance issues that would take an entire blog post to explain, I couldn't do that. So, I brought her back to the ER for the third time on Wednesday. While I was there with her, Austin texted me from the hospital where he was still a patient.

"I'm dying."

"Dying how? Pain? Nausea? Just feeling bad?"

"No, really dying."

"You're not dying, Cameron." (Ferris Bueller reference that was supposed to make him laugh)

"Yesterday, maybe an hour before you got here, a doctor came in and said there was more testing to be done, but the initial results were that I was HIV positive. I just kept crying. That is why my eyes were red. I'm dying, Mom."

My heart stopped for a minute and a wave of nausea flooded me. I felt like all the air had been knocked out of my lungs; like someone had just punched me in the gut.

"WHAT?!!!!!!!!!!! Are you kidding me?"  It's a joke, right? He has to be kidding.


"Why didn't you tell me yesterday?" Ohmygosh, the doctor told him while he was all alone! And I haven't been there all day! My poor Austin!

"Because the two main things that cause it are sexual contact and sharing needles. I didn't want you to assume anything. I've never done any of that."

"Then it isn't possible. The test is wrong, Austin. You don't have HIV and it was really wrong of him to say something like that before the test was complete. What exactly did he say? What kind of @$$%&(# tells a kid something like that while he's all alone?"

"He said, 'So we got the initial results back from your blood test and they're positive. They aren't final though so there will be another test. Any questions for me? No? Okay.'"

"You donate blood, Austin. They screen for this. You've never been notified of any problems. You have no risk factors. You don't have HIV. False positives are common. That's why they HAVE to do a follow-up test if there's ever a positive."

"But I'm sweating a ton and I looked it up and night sweats are a symptom of HIV."

"So is menopause, cancer, fever, infection, sleeping on a hot, plastic hospital bed with compression things wrapped around your legs, and a whole host of other things.

"Then I have cancer."

"You've been tested for everything, Austin. Cancer doesn't develop overnight."

"It might even develop faster than overnight in my body. Maybe my body is a cancer magnet."

"Stop it!"

"I'm a cancer hotspot."

"Stop it! You don't have HIV or cancer."

"Because it's clearly developed into AIDS already."

"Stop it!"

"Even the AIDS infected cells have cancer which in turn produced cancerous AIDS cells which kept multiplying to make an AIDS/cancer hybrid. Which, despite the name, is actually beneficial to nail and hair growth."

"Well, it's a good thing your sense of humor is back."

On Thursday, the doctor saw Austin before I got to the hospital once again and Austin asked him, "Do you know the results of that test?"

"No, it takes a while. Just call my office after you're discharged," he said nonchalantly, brushing him off.

When Austin told me how he responded to him for a second time, my head exploded. I raced to the hospital and marched straight into the patient advocate's office. I explained how the doctor dropped this bomb on my son and how I was positive the results were inaccurate and how I felt he should have waited until the test was complete to say anything. She said pretty words. "I understand why you're frustrated. I'll have the nursing manager talk to you."

I told the nursing manager how the doctor dropped this bomb on my son and how I was positive the results were inaccurate and how I felt he should have waited until the test was complete to say anything. She said pretty words. "I understand why you're upset, blah blah blah. Some doctors need better bedside manners."

Instead of talking to the doctor, she sent a counselor to Austin's room who left him with information about HIV and AIDS and where to turn for help. When I explained to her that he had ZERO risk factors and it had to be a false positive, she gave me a pitying look. Oh look at this mom who is in total denial.

"He's a good kid! He's never done anything that could possibly get him infected. He even donates blood regularly!"

"Why does he donate regularly?" she asked accusingly.

Ohmygosh, she did NOT just say that! She thinks he donates to get checked! Listen lady, some people donate because it's a good thing to do! Some people are raised to know the importance of donating their used items, their time, talents, and yes, even their blood to others who can benefit from it.

Here's the thing though. Everyone I talked to had the same attitude. You get diagnosed with cancer and everyone is sympathetic. No one can imagine a more horrible fate. But you get diagnosed with HIV and immediately you're looked down upon. You're that kind of person. There is no sympathy; just judgement and condemnation. It's horrible and I don't wish it upon anyone.

I camped out in Austin's hospital room today, determined to finally get a chance to speak with this doctor. Although I'd been by the hospital every single day, I had to go back and forth between Austin and my other kids so I'd missed him every day. When he walked in, I said, "Oh so you're Dr. Korman! That was really crappy how you dropped that bombshell on my son when he was all alone. Do you have kids? No? Well, that was really not cool! And why would you tell him he's positive before the testing was even done?"

He didn't have much to say.

"What test did you run?"

"Uhhh, we checked for (much stammering) antibodies."

"So you just did the one test? Have you done a western blot yet?"

"Yes, they were both positive."

My stomach lurched. If that's true, then ohmygosh! Oh my gosh. Oh God.

"I want to see those results," I demanded. There is no way it's positive. No way!

The doctor disappeared and came back a few minutes later.

"Oh um, I guess we didn't do both tests. We're waiting for the confirmatory test."

"You're doing a western blot?"

"No, we don't do that anymore. That's outdated. We're doing an RNA test."

"And how long will that take?" I demanded.

"I don't know."

"You don't know? Ballpark. 3 days? 3 weeks? 3 months? How long?"

"Hopefully soon. We don't do it here. It's sent somewhere else. Jacksonville, I think. You can call the hospital when he's discharged. You could ask for medical records. But they probably won't give you the information. I guess you could follow up with your doctor and have him call the hospital and try to get it."

"Are you kidding me?!" I resisted the urge to slap him. (Although in retrospect, I kinda wish I had. It would have been worth any trouble I received from it.)

Eventually, he gave me his card and said I could call his office to get the results. Then he examined Austin and discharged him.

Before we left, he came back to the room and handed me a paper. "I have the results. The RNA test is negative. I'm not sure what this means."

Sheesh! Even I know what it means! He doesn't have HIV! How do you not know this??? Are you really a doctor? I called my friend who works at another hospital and deals with this stuff. She said the doctor was wrong; western blots are still used to confirm positive tests. She also said that the initial test was indeed a false positive and he definitely does NOT have HIV. The RNA test is a very specific one.

Austin lived through this nightmare for four days. Although I think I had him convinced that there was no way he could possibly have HIV, it was still hanging over his head. He got depressed. He said he'd kill himself if he had HIV. And it all could have been avoided if this doctor had kept his stupid mouth shut until the confirmation test came back negative. Or if the doctors had listened when Austin answered their questions, stating he had no risk factors at all.

And, before anyone asks, Savannah's still not feeling well and we still don't have a diagnosis although the hospital told her she tested positive for methamphetamines because, once again, they didn't listen when we listed off the OTC medications she was taking. The same reason why Austin's arm puffed out in hive-like bumps from his IV because they didn't listen when he told them his IV hurt and didn't feel right when medication went in. 


sunshine said...

One foot in front of the other little momma. You are a strong woman. Scree the doctors. You know your kids better then anyone

Wendy at Made by a Mom said...

I can't believe what a nightmare you have been going through. What the hell is wrong with these doctor's in Florida!!!!

Kristine said...

Wow. That is absolutely nuts. Is he 18 yet? That would be the drs only excuse. I hope that they start listening to you.

Lisa @ Crazy Adventures in Parenting said...

Pardon my french, but holy f*cking crap, I'd be lightin' that place up like a Christmas tree!!!!! Is there a medical board review thingamabob you can appeal to regarding this doctor? "Some doctors need better bedside manners." is probably one of the biggest understatements of the friggin' century!

Korinthia said...

How horrible, Dawn. I'd say I can't believe it, except our family experienced my mom being told like it was nothing that she was going to go blind (totally wrong) and another telling us to just accept my dad was going to die soon (two years later he's stubbornly still here). Some doctors suck and I wish they could be held better accountable for how they talk to people.

In terms of HIV (not that it applies to your situation anymore, but I feel like it's worth saying) it's not the death sentence it once was. Treatment has improved greatly, and many people have lived with it for decades now. Just so Austin knows if by some freak circumstance that were to happen to him, it's not suicide worthy.

Hope everything gets back to normal soon. Thinking of you all and wishing you well.

Diane Puchta said...

Oh my God! What kind of hospitals are down there? Sadly even the person who graduates last in medical school is still called doctor.

PamGram said...

WOW can your Summer get any better? It's like tea cup ride spinning out of control. Now on to Savannah,and no more. Tell the other kids they are NOT going to the ER,urgent care,doctors or vets. So glad your Mom is there to hug you. Take care.

Laura G said...

AAAgggggghhhhhhh! Silent screaming for you, Dawn! Such hurt and frustration, understatment of the year I know. Hang in there; your kids are seeing a strong woman at work, and they will remember that more than anything else from all this. Tomorrow I am going to a retreat-like sewing camp for Catholic girls- I'm one of the teachers- and I have lots of time to pray while there. You and your kiddos will be at the top of the list.

Mark said...

Well,Baby Sister:First thing Monday YOU phone the AMA to lodge a formal complaint about Dr. QUACK! Next..a brutal LAWYER (pick one with FIRE in his eyes...and knowledge about MALPRACTICE!)
Honestly, I kept waiting for Austin to giggle..and admit that he was just joshin' you..
THAT kind of news is NOT shared with the patient until it is first confirmed by two labs..and a Psychologist is present to calmly explain the options(and there ARE indeed many!)
Austin is in need of a little cheering up: Tell him that he has to stop sharing his needles with that homeless matter how nice he appears to be! He can't help but LAUGH..but first make sure that the pancreatitis is completely cured...
After you get off the phone with KILLER the LAWYER,pick youselves out a few nice new
Rolls Royces! I am actually LIVID..and I am 1200 miles away..Simply shocking and so
un-professional! Watch! LAWYERS will soon be calling YOU to offer their services!
Mark in MASS.

The Wicked Truth said...

Time to obtain an attorney, that's either not from Florida, or recommended by someone you trust. Get the Health Department involved, file complaints with the Florida Board of Medicine, and the Board of Nurses.

If the hospital is a part of a larger health care system, go to the administration of that system.

I work for a small firm that collects medical bills and records for Law offices, nationwide. We don't have a firm in Florida, but one of the firms may be able to recommend one. Let me know if you need the info.

Good luck, Lady.

Chris said...

Dawn, you have been close to hell and back this summer. The only saving grace is that you're NOT in school and can run(yourself ragged)back and forth between your sick kids and the healthy ones. I truly believe God will never give you more than you can handle but he is SURELY testing you right now. GET that lawyer and do something about this. Eighteen or not, they handled this entire situation badly. Something needs to be done and quickly. ((HUGS)) to you and your family!

Sarah said...

I'm so very sorry to hear this. I would say I can't believe this, but unfortunately I can. Doctors are awful sometimes. Praying you can get some correct answers for both of them and get them on the road to recovery very soon! :)

Genie books said...

Dawn, I know you are not a litigious person, but really somethings like this one, needs to be addressed and what the doctor did he will do again and again if he isn't made to think about it. The patient advocate wasn't much better and should have her hand slapped for her reaction. People need to take time to listen in their field. Please, really consider stopping him from being so careless/heartless to others. He owes Austin a huge apology as well as the rest of the family. Hugs to you all.

I do think the cancer/HIV thing was hit dead-on. Sad, truly sad.

Shellie said...

What a nightmare! I can't get over poor Austin going through that alone for 4 days! Or you for that day! I also cannot believe how awful the doctors have been! Just unreal! My little mommy heart just can't stand him thinking hebhad no hope. Time to reassure him that no matter what, there is always hope and you will be by his side. Kids can be so funny, my son thought his dad would be mad at him when he fell 200 feet down the mountainside. What?! No way! Try glad you're alive is more like it! I'm praying the tide will turn and all the right people will be there to help everyone get all well and for quick recovery from the emotional trauma and stress! You deserve to win a vacation to the Bahamas or something next!

Kristin of course said...

Holy crap. That is awful. There's a serious problem in this world of medicine. It goes beyond not listening to the patient, it has to do with compartmentalizing. Insurance companies, the govt and others are to blame for this. There's so much red tape everywhere and the doctors are still passing their boards and yet have no idea how to handle LIVE people.

Cindy said...

Oh my word, this IS a nightmare! Poor Austin having to hear that from the doctor while he was alone. That doctor needs to go back to school, or get into a different line of work.

I'll be praying for Savannah.

Kilian said...

I wish I could assure you that this is a rare situation. After 22 years of nursing, I am now happily retired. You put your finger on the essential problem: THEY DON'T LISTEN!

It isn't any different for those of us who work inside the system. After years of tweaking and collaborating with my mother's hand-picked doctor (one who LISTENS) we had worked out a regime of medications to control a chronic condition. It involved several medications that are usually taken as needed, but she took on a daily basis. When she was hospitalized for an unrelated problem, I took several copies of her med list with the words 'TAKEN DAILY, NOT AS NEEDED'next to these meds. Did anyone pay any attention? Oh, hell, no. As a result, she went into full-blown withdrawal and ended up in ICU.

I say out this doctor. Name names. Register complaints with the Board of Medical Examiners. Make his life the Hell he made yours. The only reason bullies get away with their unacceptable behavior is because no one complains in a meaningful way.

Sue him. He violated his duty to avoid harming your son. If telling a person that he has a life-threatening illness without being sure that the diagnosis is incorrect is not a perfect example of harm, I don't know what is. You have grounds, and personal injury lawyers won't take a case they don't think they can win, and don't require money up front. Check out the possibility.

This is just outrageous.

'Better bedside manner? You bet your ass.

Sharlyn said...

Grrrrrrrrrrrrrrr. Just. Grrrrrrrrrrrrrrr. I was mad FOR you! You're amazing!

Hildigunnur said...

Agree with the others. Sue! What a nightmare! Our hearts go out to you here.

Patty H said...

Get a lawyer!!! For that many people, who are supposed to be there to help you, to continue to brush you off for something very serious....WRONG!! These are some serious crackpots that should not be in the medical care system.

Susan said...

Awful awful stuff.

My poor old Dad, no risk factors whatsoever and nearing 80, had a false Hep C result on his medical records. I had a similar fight. Eventually GP surgery found it was an administrative error and after 10 days waiting the blood test confirmed it. In the meantime, the hospital staff TOLD me that they had spent weeks speculating on how he had 'contracted' it and why I had witheld the information from them !!! Emotional roller coaster that I still recall with horror, nearly 3 years on.

Poor all of you. I'm so sorry.

Unknown said...

Dawn! That is a horror story! Poor Austin and poor you. At least there was a happy outcome. I just stumbled on this blog from Australia and couldn't stop reading when I got started. I'm glad everything worked out :)

Nancy said...

I'm sick that good people go through these things. But these people commenting above make me sicker! Suing will not solve anything! It's not going to erase the situation, or make it any easier to deal with. I hate that people immediately scream LAWSUIT for everything these days.

Beth Hatch said...

Some doctors just should be relegated to a lab and NEVER talk to humans, ever. I had a cyst on my finger once and after surgery to remove it the doctor said, "When it's a good thing that it wasn't cancer because we would have had to amputate your finger. In fact, if it comes back we might." So now I live in constant fear of the return of the cyst.

Kaia said...

Ugh!! So sorry for ALL of you!! What can we do to help?? Seriously. Praying, praying!

Unknown said...

Wow, that is unbelievable! Shame on the medical community for not listening or having better common sense. I cannot imagine going through all that, Dawn. One problem on top of another... you were right for tracking that doctor down, (and I would totally support you in slapping him). Sometimes, with stories like this, I once again get reminded of how outrageous and ineffective our health system is in all its glory.

amyvillarreal said...

So sorry you and your family are going through all of this! Praying for you all...God is bigger!

Susie Q said...

What a bunch of yahoos at that hospital! They save you should NEVER leave a family member at the hospital without anyone by their side to be their advocate, ask question, etc. I totally understand you having to go back & forth between the other kids. But this just goes to show you WHY!

Here's another example (and I will NEVER have a stay overnight at a hospital again without my husband camped out with me!!). I was in the hospital a few years ago for a hysterectomy. I told everyone (doctor/nurses, etc.) before that I was "hearing impaired" - that I wear hearing aids, and when I don't have them on, I'm as deaf as a door knob. I told EVERY.ONE. I told them to mark it on my chart. Wanted to be sure they knew I was just deaf, not dead, if they tried to talk to me and got no answer! So, middle of the night after surgery I'm pressing the call button. Nobody comes. Press it again. NOBODY. Press it again. Still nobody shows up. I have to pee like crazy, so I try to get myself up out of bed - in horrific pain. Thankfully I managed to get myself to the bathroom OK, hanging on my IV pole. But do you know what - the nurse was at the desk was hearing my buzzer, then asking, "What do you need, honey?" And when I didn't respond, she didn't bother to come check on me! HEY, I TOLD YOU I WAS DEAF!!! Idiots! I was so damn pissed off about this whole incident. Like you said. They just don't listen!!!

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