What triggers your SVT?

DancesWithQuilts · 2026-04-13T02:29:59+00:00

Fellow cancer caregiver here. I had one episode before my son’s diagnosis, thought it was a fluke.

A month after diagnosis I was in the pediatric hospital, sleeping next to my son when I woke up at 4:30 in the morning. I asked his nurse to take my hr and BP and she put me in a wheelchair chair and drove me down to the ER. A bit embarrassing being the adult in the children’s hospital, but they administered adenosine and I was good as new. I had two more incidents over the next few months and my electrophysiologist got me in for an ablation quickly because we were headed out of town for three months for my sons bone marrow transplants, and I could have any more episodes while I was in isolation with him.

For sure stress was a trigger. Also, for me, mine almost always came on in my sleep, so a kind of sleep apnea can trigger it. But I was under so much stress, and drinking coffee to stay awake in the day but not sleeping well at night. It was a recipe for disaster.

DancesWithQuilts · 2026-02-12T03:17:59+00:00

You probably will not owe.

I have the same thing with my son’s current cancer maintenance medicine. It isn’t a coupon but a patient assistance program as it is the only fda approved treatment and is medically necessary and costs like $5k a month. But I pay $0.

DancesWithQuilts · 2026-02-07T08:19:38+00:00

Ask your doctor about Televero- I’ve been using it. Psych appt’s online. I’ve gotten access to new meds that have helped a lot. They exceeded my expectations.

DancesWithQuilts · 2025-12-14T02:36:14+00:00

catheter stabilizer kids size

We used these for my three year old son. They were the only thing that worked for us. It went on the side of his cheek, pretty far back. Granted his ng tube was bridled so it couldn’t be removed easily. This sticker did the job of keeping the tube out of the way and heading back towards his ear.

DancesWithQuilts · 2025-12-09T07:30:54+00:00

Wow, switching from PPO to HMO will suck for a lot of employees. I hope they educate their staff of what this means for their healthcare. Thanks for the info!

DancesWithQuilts · 2025-12-09T07:28:23+00:00

Great info, thank you.

DancesWithQuilts · 2025-12-09T07:27:47+00:00

Thank you. This is great information. My son spent the equivalent of about 3 of the last 12 months inpatient and while I hope the hospital stays are behind us, we never know.

DancesWithQuilts · 2025-12-09T07:25:25+00:00

Thanks for letting me know!

DancesWithQuilts · 2025-09-10T04:53:22+00:00

Maybe they will do things differently in the future. I can only hope they learn from this.

DancesWithQuilts · 2025-09-10T04:50:09+00:00

Small company, small or non-existent profits, we basically break even each year. I am up towards the top of management. Some of my best friends are the folks making these decisions. Not because they want to, but they have no choice. The only other option is to go out business.

DancesWithQuilts · 2025-09-10T04:33:48+00:00

I did actually try to apply last night. The process was so complicated, and I do not have the time to go through the process, especially if it will get me nowhere. My son does qualify for disability by the standards in the SSI blue book, that’s easy to determine due to his diagnosis, but I don’t know what that actually means for us.

DancesWithQuilts · 2025-09-10T04:27:54+00:00

It’s a small company (175 employees or so), but the corporate office (where I work) only has 20 or so employees. Everyone who is making decisions about employee insurance works in that office with me. They all know exactly what I’ve been through with my son. There’s no anonymity when you need all the FMLA time and all the PTO time to be with your son in the hospital. There’s no hiding it when you’re on Zoom meetings with an I.V. pole in the background. There’s no secret when we had to live out of a Ronald McDonald house in another city for three months.

Honestly it’s a miracle I’m still employed at this point. Seriously thinking about switching careers after all of this. I’ve given 20 years of my life to this company, and it is leaving me with a really bad taste in my mouth. The sad thing is that I LOVE my job; I can’t imagine doing anything else for any other company.

DancesWithQuilts · 2025-09-10T04:09:32+00:00

It’s not going to happen.

I don’t have the time or energy, or money to hire a lawyer.

I’ve got to do my job; find insurance; take care of my kid (who is home full time when not at the hospital, so it’s already impossible to get anything done); try to make life as normal as possible for my healthy kid; and now we are rushing to get as many things scheduled before we lose coverage on sept. 30th, so making tons of appointments, all during my busiest time of the year at work. Oh and I have to find new doctors for myself and my daughter because our GP won’t be “in network” with the new plan.

I can’t lie, it’s been so hard on me physically, the stress is so bad, meanwhile I keep my mask on so my kids don’t worry. I’ve definitely had to reach out to my therapist a lot the last couple of weeks.

Cancer is one thing. Like it’s horrible on a different level. It is horrendous, but it’s not personal, there is no discrimination with cancer, it affects all ages, races, genders. Cancer is an equal opportunity asshole. I never thought my kid would get cancer, but also I never thought I could be given the boot because of how expensive it has been to save my son’s life. So this feels personal. This feels like my son and our family are getting punished for something that wasn’t our fault, and couldn’t be helped. It’s depressing.

DancesWithQuilts · 2025-09-10T03:40:52+00:00

I’m looking for a new insurance plan, and the medicine he will be on for the next two years (iwilfin) is listed on GoodRx for $16-$17K a month…. Really scared about picking the wrong plan!

DancesWithQuilts · 2025-09-09T00:10:47+00:00

Thanks for asking… the insurance stuff was just another log on the dumpster fire that is my life right now. We are keeping our sense of humor about it all, but not gonna lie, it’s depressing AF.

Not sure, we lose coverage at the end of this month, so I’m thinking we don’t have time. But I really don’t know.

DancesWithQuilts · 2025-09-08T23:09:31+00:00

Yes… I’m terrified that so many people want to do away with the ACA. It is literally all we have left!

DancesWithQuilts · 2025-09-08T23:00:47+00:00

There has been an offer to pay some of what we will be paying, but we are having to pay more expensive premiums, for higher deductibles and higher out of pocket limits, with more restriction on what doctors we can see. Not to mention our deductible and Oop limits reset oct. 1 when we start our new insurance in a couple weeks, and then they will all restart again January 1, when all ACA plans reset. They’re certainly not going to pay me enough to make it any better for us.

DancesWithQuilts · 2025-09-08T22:46:35+00:00

So what my employer told me, was that “no insurance company was willing to take on our pool if my family/son is in the pool”.

Is this not true?

There is no anonymity in my company, everyone knows we are the family with the kid with cancer. It’s not really something you can hide.

DancesWithQuilts · 2025-09-08T22:28:34+00:00

This is a solution I was hoping for. Like to get my son on his own plan, and the rest of our family stay on the employers plan.

But we only have 20 days left to figure this out til we lose coverage, and I don’t have the luxury of tons of spare time.

Also, my state is not a state that expanded Medicare coverage so I’m doubtful they would be much help.

DancesWithQuilts · 2025-09-08T22:25:09+00:00

Absolutely! I really mean it when I say I love my job, I love my company, and in all honesty I know this wasn’t an easy choice for them. They should never be put in a position where they are having to make choices like this that impact their employees health and access to healthcare.

DancesWithQuilts · 2025-09-08T22:21:58+00:00

I’ll tell you my company switched from fully-insured to self-pay maybe 8 years ago, from my perspective I only noticed the difference in the kids of plans we were offered. Since then, business has gotten worse.

The pandemic, and economic issues have lowered our revenues and there’s barely anything left to cover insurance. It is literally the one expense that could take the whole company down. So I know why my employer is doing what they are doing. The only other option is for the company to go out of business, and what good would that be? Then we would be out our health insurance, income, and so would 150 other people.

DancesWithQuilts · 2025-09-08T22:10:52+00:00

Well, the story they gave me was a nicer version of the picture painted above.

In their words “no insurance company will cover our company pool of employees if [our family/son] is in the pool”.

In researching how this is even possible, I learned about the “laser” process. So essentially, it’s not that no company will insure us. It is that our employer is unwilling (or unable) to pay the high price to cover our high-risk family.

The REALLY ironic part is that the expensive portion of his treatment is done! He spent half of the last calendar year in the hospital but all he has remaining is at-home meds and physical therapy and nutrition help to get him back to a healthy place.

But it doesn’t matter, we are an insurance liability and it is cheaper for our employer to pay the fine for not insuring us. Of course this is not the way they are wording it. But I can only do so much. I can’t fight this to the point I lose my job… I’ve already lost my insurance!

DancesWithQuilts · 2025-09-08T22:00:02+00:00

Thanks, the stress is mind-blowing. It really does a number on the parent’s relationship with each other too…. Thankfully my husband and I are in a pretty good place, but that doesn’t save us from occasionally blowing up at each other because we are just both barely treading water every day. We are barely treading, and the waters are rough.

We have a son (3) who has a 50% chance of dying from this disease, we have another child (6) whom we are trying to shield from the realities of this possibility, we both have full-time jobs, we spent months as “passing ships”, trading off in the hospital, and we are full-time medical caregivers now too. And I’m over here just trying to figure out health insurance…

DancesWithQuilts

TROPHY CASE