November 1, 2012
by marfmom
5 Comments

That Time I Went to the Hospital and Pulled Out My Scope

A few weeks ago, I drove myself to the ER for chest pain. I was admitted for further testing, and discharged the early evening of the 2 days later

The pain started early in the day on a Friday. I had a pressure in my chest, like I needed to burp. I can rarely burp, since I had a nissen fundoplacation as an infant, a surgery that wrapped my stomach around my esophagus to prevent reflux; although I’ve recently developed the ability to burp VERY occasionally (a few times a year), I still can not throw up. I’ve had this feeling occasionally, and it usually goes away. This time it didn’t though. That evening, Mark suggested perhaps I had heartburn and gave me some alka selzer. The discomfort didn’t go away.

The next day, Saturday, the pressure felt worse. I toyed with the idea of going to the ER, but we had a wedding to attend out of state that day and I didn’t want to miss it. Plus, Mark’s parents were going to watch the kids all day for us. What a treat! It hurt to eat, but the pain wasn’t unmanageable.

Sunday Mark left for a meeting before church. The pain was definitely worse. I took a prilosec on the off-chance it would help, but the pain continued to worsen. By the time I was driving the boys to church I was having trouble breathing. I knew I wasn’t having a dissection, but I was worried my esophagus was rupturing. I insisted on driving myself to the ER (I know, I know…but I was in so much pain I wasn’t thinking clearly. I just wanted to make sure someone would teach my children’s Sunday School class, so I told Mark to do it). It briefly crossed my mind that I might be having a heart attack.

I stumbled into the ER and the woman at the desk asked me if I’d been in an accident. I told her I was having chest pain and in less than 2 minutes I was taken back and had a team of 3 nurses working on me to get my history, take my vitals, and get an EKG. The EKG was abnormal and my blood pressure was high. After my history was confirmed by the main doctor, I was giving 4 baby aspirin to chew, and a nitroglycerin tablet. My pain decreased almost immediately, and I was given another nitro tablet about 20 minutes later.

Over the next half hour I was given an x-ray and a CT scan. Blood work to check cardiac enzymes was taken as well. It occurred to me that if I had been having a dissection, taking the aspirin and nitro was probably a really bad idea. I think I feel comfortable with it in my case because I KNEW I wasn’t having a dissection (my aorta is normal and the symptoms didn’t fit), but any Marfs reading this may want to consider how you would handle the situation if it happened to you. When I see my cardiologist later this month I am going to ask what I should do in the future. In the instance of a heart attack, that treatment is exactly right. In a dissection, I’d guess it would make you bleed out faster.

In any case, dissection was ruled out and I was eventually transported to another hospital for further testing.

The next day I met with the cardiac team and we were able to rule out any cardiac cause to my pain. All my enzymes came back normal and I have no risk factors for a heart attack. If I understand correctly, I had ST-Ts on my EKG, which CAN be a sign of a lack of oxygen to part of the heart, but can also just show up if you have, say, pectus excavatum, (which I do). My cardiac nurse practitioner was able to show the hospital staff that the EKG they took matched mine from 4 months ago.

So, what was causing the pain? I met with GI and was taken for an endoscopy. They gave me versed and told me it would put me in “twilight sleep” so that I’d sort of be awake but not remember anything. Only…I was awake and I remembered almost everything. Specifically, I remember ripping out the scope once they tried to start the procedure, and shaking my head when the nurse said I was asleep. Needless to say, they canceled the procedure, haha.

We re-tried the endoscopy the next day. The doctor found multiple ulcers in my esophagus. Luckily, they weren’t bleeding, but they were super painful. We wouldn’t know for a week what caused them, but he gave me pain meds and meds to treat both virus and infection, and sent me home.

Of course with Marfan (or me, at least), things are never so simple….
(To be continued…)

October 31, 2012
by marfmom
3 Comments

The Hardest Thing for Special Needs Parents

The mission: to find out the status of Baby J’s synagis (RSV vaccine) appeal

The backstory: The pulmonologist filed for this medication back in September. The nurse told me it was denied Oct. 18th and she filed an appeal 5 days later. She suggested I find out where in the appeals process the claim was, because J is supposed to get the first of 5 shots this week.

What goes down:
1) I call our prescription insurance company (different from our medical insurance company) and explained the situation. The representative can’t find any record of our claim in the computer. Suggests I talk to their “special prescriptions” division.
2) I’m forwarded to that division. Rep starts looking for a record of the claim. I get disconnected.
3) Rep calls me back. Continues to look for said record. Cannot find it.
4) I call the pulmonary nurse and relay this information to her. She tells me that she never filed with our prescription company; she filed with our medical insurance company. She gives me the number for their synagis line to call.
5) I call Company X, the subsidiary of our medical insurance company (MIC) who handles synagis. Company X says all they can tell me is that the appeal is being considered, and that I need to call our MIC in order to get more detailed information.
6) I call our MIC. The rep is unable to find any record of a request for synagis, let alone an appeal. She calls a rep for Company X and I tell my story *again* to the new rep, as she explains *again* that she can’t tell me anything and that I need to speak with the clinical decisions team at the MIC. The MIC rep promises to transfer me there.
7) The clinical decisions rep says she has no idea what I’m talking about and has no way to access the information I’m asking for. She says I need to talk to the customer service rep. I explain the customer service rep sent me to her. She gets snippy and tells me she can’t help me. I get snippy back and say that since I’ve been told her department is the one deciding the status of the appeal, I need her to explain why she can’t help me. She basically accuses me of making stuff up. Then she tries to tell me she understands how I feel. She is lucky I cannot reach through the phone to smack her.
8 ) I’m transferred back to customer service, but a different rep from before. I explain our whole story again. She searches through the system again. As she’s looking she tells me that although other drugs have an expedited approval process, synagis does not so we will have to wait 15 days for an answer. She still can’t find any record of the appeal. Then, lightbulb goes off and she says she’s pretty sure the appeal being considered (see step 5) isn’t actually for synagis, but for the nutritional supplements the pediatrician requested for J, which were denied because our plan only covers supplements for “the sole source of nutrition” (which makes them NOT supplements, but g-tube feeedings…). We never submitted an appeal for those. She suggests I call our pulmonary nurse back and ask for the CPT code from the denial letter so we can confirm her theory.
9) I call the pulmonary nurse and explain the situation. She – wait for it – tells me there was never. any. appeal. No, what happened was she sent the initial request through their hospital, and it was the hospital synagis agency who took 6 weeks to tell her that they don’t work with our MIC and that she needed to file a request directly with our MIC. So, our MIC didn’t get the paperwork until last week. Also, she only went through Company X, never our MIC directly, hence why they don’t have any paperwork.
10) Pulmonary nurse promises to call Company X tomorrow.

This? Took over an hour and a half of my afternoon that I’ll never get back. And of course this doesn’t count the time I spent on the phone with the insurance company last week on our second appeal to get J’s asthma inhaler covered, or the time Mark spent on the phone with them today about a billing issue for M’s OT.

People think our kids’ differences are the hardest part about having a child with special needs. No. The hardest part is having to fight the insurance companies and schools to make sure our children’s needs are taken care of.

October 30, 2012
by marfmom
0 comments

Checking In Post Hurricane Sandy

Thinking of everyone in the storm zone today! I’ve been able to hear from a few NYC/Cape May friends and I am glad they are safe. I know some have lost trees or are without power.

If you are trying to get in touch with a loved one affected by Hurricane Sandy, or if you want to let people know you are safe, use the American Red Cross Safe and Well website. This website is used for any disaster, I believe.

An autism mom friend of mine also posted this link to Facebook: FEMA’s Publication for Preparing for Disaster for People with Disabilities and other Special Needs. If you have family members with special needs, check this out and file it away. You can’t be too prepared!

Do you have any other helpful links to share?

How are you and your families doing? Was the storm worse or better than expected for you?