Phoebe Hensley has come home from a Topeka hospital, feeling better, confident that “The Big Guy Upstairs” has been keeping a close eye on her and with her sense of humor still intact.
Her spirits are especially buoyed by the outpouring of good will from friends, family and strangers. She’s received cards and flowers, and fund raisers have been held to help with the medical expenses that have accumulated because she, her husband Tim and daughter Bridget do not have health insurance.
“I just really want to tell everybody thank you,” she said, her voice wavering as she reiterated her appreciation.
Hensley, who had a viral infection in her heart, had spent months seeking a diagnosis that would explain why she felt constantly exhausted and was steadily gaining weight.
She’d seen several local doctors without finding a cause.
“Everything was checked but my heart. Everything’s perfect except maybe my brain,” she said with a laugh. “They didn’t check that.”
She said she’d been frustrated as her condition worsened, and went to other doctors for a solution.
“Some of the doctors just wouldn’t listen. They didn’t even want to look at me,” she said.
Finally, she gave up and called on a friend, Lynn Bridges, who is a physician’s assistant at the Flint Hills Community Health Department.
Bridges immediately referred her to a Topeka doctor and Hensley soon had the diagnosis: cardiomyopathy caused by a virus that had settled in her heart and caused extensive damage. The damaged heart, with about 10 percent of its normal function, could not pump blood adequately. The resulting build-up of fluid around her heart and in her body had made moving next to impossible.
“She saved my life,” Hensley said of Bridges. “I went up (to Topeka) thinking I’d get a pill and take it and be fine. That wasn’t the plan.”
Instead, doctors kept her from March 19 until Friday, when she was released.
Now, she walks around her home for exercise. That tires her, but she is making progress.
“I’ve lost 130 pounds of water — 130 pounds,” Hensley said. “Who knew what the body could go through? When I was at the biggest point, it looked like I was pregnant with alien babies or something. I felt like one of those mothers that had octuplets.
“People started looking at me like, ‘Oh, gross,’” she said.
Through most of her illness, Hensley had kept working at her business, Phoebe’s Cafe and Cake Shop. When she got too tired to work, she’d sit on a stool and do dishes. Because she had so little strength, sometimes she had to strategize about how she could get the food she’d catered from her vehicle into a building for an event. Then she got worse.
“Before (treatment), I couldn’t move. I couldn’t drive my car or anything,” she said. “I had to have my parents taking care of me. It was humiliating.”
Her father cheered when he heard she was going to be admitted to Stormont-Vail Hospital in Topeka, she said; it meant that she finally would get treatment for the problem that was disabling her.
And, while the diagnosis and prognosis were not what the family would have wished, Hensley can be treated, though a cure may not be in sight.
“The heart’s gone, forget about it, live with it,” she said she was told by one doctor. “Then the other guy’s like, ‘Well, you may just apply for disability, blah, blah, blah. This just wasn’t sinking in that it was that serious.”
Hensley remains optimistic, however; that’s simply her nature. She knows she has the advantage of being young — 36 years old — and she has heard about another patient with severe heart damage who has had a total recovery.
“I believe that’s mind over matter also,” she said. “I hope so.”
She’s currently taking 13 pills a day to help keep fluid at bay and strengthen the heart, and she’s exercising within limits.
“I’m trying to do a little exercise and walk through the house. I’m a little tired after doing that,” she said. “Just getting used to daily activities is enough for me now. I wake up in the morning and I feel like Super Girl for a while.”
Then she walks through the house and feels it’s time for a nap. However, she is moving better and, while losing 130 pounds of fluid so quickly caused considerable pain and soreness, that too is improving.
The biggest disappointment is having to sell her year-old business. Doctors do not expect her heart to be able to support the workload the business requires.
“I wish I could,” she said. “I really wish I could, but I can’t.”
outsidethebox (anonymous) says...
Maybe the providers at the health dept do know what they are doing.
April 10, 2007 at 2:02 p.m. ( permalink | suggest removal )
hjcary (anonymous) says...
Outsidethebox,
The drs and nurses at all the locations go through the same training and take the same boards tests to get their licenses. It is just that some drs. are out there to actually help their patients while others can care less about their patients. Although I no longer live in Emporia where I am at I have experienced several occations of missdiagnoses and thankfully got a second opinion that on one occations saved me from surgery and a life of medications. Our medical system has many flaws unfortunatly.
April 10, 2007 at 3:41 p.m. ( permalink | suggest removal )
hottopics (anonymous) says...
I think it is a shame that self employed people simply cant afford health insurance. I do know that Stormont Vail Hospital in Topeka offers people help. Ask for that help, they give you a form to fill out and send in proof of income and you can qualify for reduced or free assistance.
Its good to see Phoebe home but so many many people go to a doctor that just puts a quick fix on the spin or sends you through a bazillion tests you didnt need. Catch 22 thats costing us lives and money.
April 10, 2007 at 6:21 p.m. ( permalink | suggest removal )
outsidethebox (anonymous) says...
I know they all go through the same training, because I am one of the providers at the center. There are numerous other providers in Emporia who speak very poorly of the work and services provided by the health center. The other providers tell this directly to the patients and numerous providers will not see patients without insurance and tell them to go to the health center and then bad mouth us. I know our system is flawed but it seems to more flawed in Emporia.
April 10, 2007 at 9:41 p.m. ( permalink | suggest removal )
gazette_reader (anonymous) says...
I have found that it is really a disadvantage to go to the doctor if you're under 70 and be treated seriously. "Oh, you're too young to have problems like that" is a common answer. Phoebe is only 36. I'm glad she was proactive about trying to find an answer, and I'm glad she knew someone she could turn to for help.
April 11, 2007 at 12:20 a.m. ( permalink | suggest removal )
sandyestabrook (anonymous) says...
Family and friends should recommend that she seek out disability especially since the Dr. suggested it. This is what disabiliity was set up for, someone who truely needs it and it will provide the medical coverage she needs so badly. Getting any health insurance to cover her illness will be impossible now and this will be a big expense for some time. May be there is a local attorney willing to help her through this process which could be retroactive and cover some of the hospital expenses she currently has. She's so young and worrying about the medical expense must be stressful, something she doesn't need. I've been really impressed by the community and how they have helped out Phoebe and her family. I've used the health dept. when unable to get into my Dr. and was told to go to the ER but instead I went to the health dept.. I think we have a very good health dept.
April 13, 2007 at 12:46 p.m. ( permalink | suggest removal )
colorado (anonymous) says...
Phoebe and Tim: In january, 2007 my husband and I were faced with the same situation except his ejection was 15%. He was hospitalized and placed on coreg, lisinopril, lasix, aldatone, and ecotrin with the possibility of having a defibilator. The heart doctor said it would take at least 3 months for the heart to repair it self if it can. He started working 3 weeks his hospitalization. He has worked full time since then. In March it was 20%. Yesterday he had a muga scan. Today, April 25, 2007 it is 42%. My husband is 43 years old. Even if you need a defibilator you can lead a normal life its like having a paramedic with you at all times. As far as doctors without doing an echo they don't know it is the heart. The signs and symptoms are similar to alot of diseases so heart problem is missed. My brother has multiple sclerosis and was denied twice by disability and had to hire a attorney. Still waiting its been about a year. Here you have to be on disability for 2 years before medicard starts. My brother is confused, and can barely walk. I don't worry about medical bills you can't get blood out of turnip. Maybe you need to talk to social service at the hospital to see if there is a program to help you with your current situation. We wish you the best of luck.
April 25, 2007 at 8:27 p.m. ( permalink | suggest removal )