By Jen Christensen

CNN

(CNN) -- Valerie Daniel is nervous about the GOP health care bills making their way through Congress.

The 33-year-old Georgia resident doesn't get her health insurance through the exchanges, although she has in the past. She could need to turn to them again, and that need is what has her watching the new Republican legislation proposed as a replacement to Obamacare.

She, like 117 million Americans, has a chronic condition. It has no cure and requires expensive care. She worries about whether her husband's job will still come with benefits and whether they'll be able to avoid penalties by maintaining consistent coverage.

To Daniel, the health care debate is not political, it's personal.

Daniel has Crohn's disease, which is inflammation of the GI tract. Sometimes she feels fine and can go about her day as if she is well. Other times, the condition leaves her in such pain and with so little energy, she is confined to bed for days at a time. She's had bouts when she can't swallow. Sometimes, her body rejects all food. Once, when she was in college, she spent an entire weekend on the bathroom floor, too sick to eat, drink or move, she said.

It's been rough, particularly since she is a busy mother with two young children who demand a lot of her time.

"It's been really hard, especially this year, on my kids," Daniel said. "They can't comprehend what's really going on with me. They just know that I'm sick. Thankfully, they're really great kids, and I have a lot of friends and a lot of family who have volunteered to help."

She said the help comes in handy when she gets her treatments. Her doctors have had her try nearly every medication out there. She's also had surgery to remove part of her colon. None of it worked permanently, so doctors put her on Remicade.

The drug comes in the form of an infusion that she must get every few weeks at a hospital 40 minutes away. Without insurance, the drug would cost about $20,000 a year.

The good news is, it seems to be working.

"This type of medicine is a lifetime commitment," Daniel said. That means she can't afford to go without insurance if she wants to stay well.

Her husband, Justin, rarely gets sick, she said, so he might be able to get away without insurance. But her daughter may also have an autoimmune disease, so the family has to keep its coverage, which they get through his work.

The absolute need for insurance is something that keeps Daniel focused on what is going on with the GOP health care bill.

"What are they going to do for people like me who have chronic illness?" she asked. "There is a little bit of nervousness here."

The current GOP bill does not bring health care back to the way it was before Obamacare.

Before the Affordable Care Act, on the individual market, companies often wouldn't sell a plan to someone who had a chronic or pre-existing condition. There were also lifetime caps on how much a company would spend on your care. With an expensive drug like Remicade, Daniel could have easily maxed out a policy in the old system.

Obamacare eliminated lifetime caps and made it so insurance companies couldn't discriminate against people with pre-existing conditions. President Donald Trump said on CBS's "Face the Nation" on Sunday that the new GOP health care bill "guarantees" coverage for people like Daniel.

"Pre-existing conditions are in the bill. And I mandate it. I said, 'has to be,' " Trump told CBS's John Dickerson.

However, coverage for people like Daniel could come at a cost if the latest legislation makes it through Congress. Moderate New Jersey Rep. Tom MacArthur and leaders of the conservative House Freedom Caucus cut a deal that requires insurers to cover those with pre-existing conditions, but unlike the mandate under Obamacare, insurers could charge these customers higher rates under certain conditions.

States could opt out of several key Obamacare provisions that could change the cost and quality of insurance Daniel could get.

One of those provisions is the essential health benefits measure, which mandates that insurers cover 10 main benefits, including prescription drugs and hospitalizations.

That means Daniel could be faced with buying a policy that doesn't cover all of her care.

She could also pay more for her coverage, since the bill would allow insurers to charge people more based on their medical history, if they have allowed their coverage to lapse. And although the family has done everything in its power to keep coverage, she said, she could easily see when there could be a gap.

That nearly happened a few years ago, when her husband lost his job. For the three months he was out of work, the family went on COBRA, which is not subsidized. It cost $900 a month. It was such a steep expense, Daniel said, they had to ask family members to help them cover their bills. Without generous family, they could have taken their chances and skipped insurance coverage to stay afloat financially.

If that were to happen and Daniel lived in a state with a high-risk pool set up to cover people with costly chronic conditions like hers, she could be paying a lot more.

There is no Congressional Budget Office estimate on how much someone would have to spend on a plan from one of those high-risk pools, but the American Medical Association said in a letter to Congress that it opposes high-risk pools that "could effectively make coverage completely unaffordable to people with preexisting conditions."

The AARP projects that premiums in high-risk pools could cost a person as much as $25,700 per year. When high-risk pools were in place before Obamacare, experts said they were underfunded, and people paid high premiums and were put on waiting lists to get coverage.

Skipping coverage would be a tough decision for Daniel. She said she hopes that, whatever Obamacare replacement becomes law, she and others with chronic conditions will be OK. Until then, she'll be thinking constantly about what could happen to her insurance.

"I'm nervous not knowing the future," Daniel said. "You never know how much you're going to end up with that you're responsible for. You never know how bad it's going to get."