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Help with getting a formal diagnosis

Anne19
Posts: 1
Joined: Aug 2018

 

I will try to keep this as concise as possible. The first piece of important information is I am uninsured. In January I went to the ER because I had symptoms of severe hypokalemia, which is something I had been through previously. I also just didn't feel well in general. I had several swollen lymph nodes, I was fatigued for no obvious reason, I was rapidly losing weight unintentionally and I kept getting this itchy feeling. Turns out I was correct about the hyokalemia (my potassium level came back as <2) but the ER doctor didn't like my other lab results and he was worried about the other symptoms I had been experiencing. He started a potassium infusion to reverse the hypokalemia and ran some more tests to rule out some things that could cause similar lab results and symptoms and he couldn't find a definitive cause. He gave me a referral for a specialist. I happened to know the doctor he was referring me to is an oncologist, so I asked the ER doctor what he thought was wrong. After trying to not give me a specific answer, he finally told me that my symptoms and the results from all the tests were suggestive of lymphoma but I would need more tests that he couldn't provide through the ER

 

 

 

He did admit me to the hospital to correct the hypokalemia because I needed several rounds of potassium and it was going to take at least 20 hours to get my potassium level back to the normal range. I was transferred to telemetry bed upstairs and I was seen by another doctor. The new doctor looked at all of my various lab results and continued the potassium infusions that the ER doctor started. I told her was the ER doctor and I had discussed and, while she agreed with his assessment, she took the stance of “let's get your potassium levels up and we'll go from there”. I continued the infusions for the rest of the evening, overnight and into the next morning. The doctor finally returned around 11am the following day and told me my potassium levels were within the normal range and I could go home. I asked her about additional tests to try and find the cause of the abnormal lab results and she something along the lines of “That's not really something I do, you really need to see a specialist” and then she referred me to the same oncologist as the ER doctor did. I should mention that this particular hospital is the only non-profit facility in the area.

 

 

 

I called the recommended physician the following morning and explained what I knew. The person I spoke with was not exactly helpful. She took a little bit of basic information and once she got to the question about insurance, she informed me that it would be $350 to see the doctor and that the fee needed to be paid up front along with the fees for any tests the doctor may want to order. I tried asking her if she could give me some kind of general cost estimate and all she could say was “that will depend on what tests the doctor orders”. I also inquired about any kind of financial assistance they had available and she transferred me to the financial assistance office. I went over everything again with financial services and she informed me that there were some programs I may qualify for but I needed a formal diagnosis first So after researching what testing is necessary for diagnosing lymphoma and called the specialists office back to ask about the cost of the various tests used to diagnose lymphoma. There is no way I can afford even the bare minimum of tests that are needed.

 

 

 

Next up was making an appointment with the local low-cost/free clinic. Went over everything I knew again with the doctor at the clinic. He neither agreed or disagreed with the other doctor's opinion. However, he did explain the limitations of the care they could provide. It pretty much came down to “we only provide basic health care serviced and anything more complex will have to be handled by an outside specialist”. I get it, they have limited funds and they need to allocate them in a way that helps as many people as possible. I called other low-cost/free clinics within a reasonable driving distance and all of them were either in the same boat as the local clinic with very limited resources or there were residency requirement that I don't meet.

 

 

 

I moved on to contacting my state's Health and Human Services. After much running around in circles, it came down to there is no state level assistance for “healthy” adults and an adult is considered “healthy” until they get a formal diagnosis. Even if I had a formal diagnosis, state assistance is limited to a few very specific conditions and lymphoma isn't one of them unless it is end stage and a doctor determines I am completely disabled. Basically, they won't help unless you are very close to dying and even then, they will just help you be a little more comfortable while you wait to die.

 

 

 

Still not ready to throw in the towel, I called other specialists in the general vicinity and got the same “you pay upfront and we can't help with any financial assistance until you have a diagnosis”. I've been trying to save up enough money to pay for the necessary tests, but I am a single mother with 2 kids in college. I was barely keeping my head above water before all the health issues. My health has gotten to the point where I can't work as much as I usually do, so there's less money coming in. In the mean time, things are getting worse. I'm losing even more weight, my lymph nodes have continued swelling to the point there are several of them that are very visible in my neck, near the collar bone and under my arms and recently I've completely lost my appetite. I try to eat several times throughout the day, but I feel full after just a couple of bites. To top it all off, the early signs of hypokalemia are back despite taking potassium supplements and trying to eat as much potassium rich food as possible. It's not bad enough to justify a trip to the ER yet, but I'm sure it's only a matter of time.

 

 

 

Does anyone know of anywhere I can get help? Or does anyone have any suggestions on how to try and push the hospital into running the necessary tests when I inevitably end up back in the ER? Sorry for the lengthy post, but I am at my wit's end and it's starting to feel like I am just sitting around waiting to die.

 

twowheels's picture
twowheels
Posts: 12
Joined: Jun 2017

What state do you reside? Do they have the full Affordable Care?
If so (even if not) investigate the Special Enrollment periods linked below. Complete the entire application and submit.

https://www.healthcare.gov/apply-and-enroll/how-to-apply/

Blood labs/screenings won't indicate (and often won't even hint) at a lymphoma. Tbe way to determine if you have a lymphoma, (and the good news; maybe your symptoms are determined to be inconsequential) is with a biopsy that is sent to pathology. That is a $$$ pricey procedure. 75% of the US could not afford/nor save enough out of pocket).

I went thru a few different "tests" before insurance sprung for the expense of a biopsy. First a sonogram, then a CAT scan and finally biopsy (this took ~3months).

I did not personally find it useful but investigate/contact LiveStrong.com  Their business model is based on education and information on "finding" financial assistance.

Good luck to you. Hopefully you find out you have something benign (my onc told me of a patient who was sure she had lymphoma even after it was confirmed she had kikuchi)

https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease

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