Needing help understanding ET and how it affects my life

Posted by ashleygm @ashleygm, Oct 18, 2023

I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16 (and by “high” I mean 800,000 to 900,000). I found out donating blood, and now I’m a deferred donor because of this blood issue. I had a doctors appointment around the same time and the doctor ordered my blood work to be redone because they thought they had mishandled it because the readings were high. All of my other blood work is fine. The doctor told my dad to take me to the children’s hospital in Dallas, but he never did. I haven’t been able to afford health insurance, so I wasn’t able to get my platelets checked again until about three years ago. I got yet another referral to a cancer center, but because I didn’t have insurance at that time either they refused to make me an appointment. I finally got insurance through my job and tried again this year, but the cancer center doesn’t take my insurance and I can’t afford to pay $500 per visit not including testing. I highly expect to need a bone marrow biopsy. Over the past couple years I’ve noticed I’m getting sicker. It takes longer for me to recover than everyone around me. My spleen gets uncomfortable sometimes, but conveniently not when I actually have an appointment. I don’t know what to do. I’m so anxious about living with this disorder and not being able to afford to even properly get diagnosed let alone manage it. I’m worried if I somehow get the money to get a diagnosis that it will be harder to get on insurance because it’s a type of cancer. Does anyone have any advice for managing this without being able to see a doctor? Or any advice on resources I could possibly use to help me be able to see the specialist I need to? I’m in Texas if that helps.

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ashleygm | @ashleygm | Oct 20, 2023

In reply to @nohrt4me "I have heard that that can happen--specialist provides care protocols/parameters for local docs to follow through..." + (show)

Oh my god that sounds like a dream! I’m so glad care like that exists somewhere in the world. I just wish it extended here as well.

ashleygm | @ashleygm | Oct 20, 2023

In reply to @rjgregory440 "Then I would make an appointment with your primary care and they can refer you to..." + (show)

Yeah, for sure! I’ve been trying, but I guess me being medically illiterate is holding me back. I got the referral to the same hematologist twice, but haven’t been able to be seen. Here’s hoping I can find one that will actually let me pay out of pocket if I can.

casevin7 | @casevin7 | Oct 22, 2023

There was a point in time several years ago when I did not have insurance coverage. It was shortly after my car had been rear ended by an 18 wheeler. I had a closed head injury from that. But my point is that in Houston there was and is Harris County charity hospitals and health coverage with what they refer to as their Gold Card. I don't know where you live, but surely there is similar coverage. I hated taking charity at the time, but I needed the coverage so I used it. Good luck to you.

torcia | @torcia | Oct 23, 2023

I'm sorry to hear you are going through all of this. It's scary enough contemplating living with these diagnoses without adding on the challenging insurance issues. Sounds like you do have some insurance now, but just need to find a hematologist who will take your insurance. As an FYI for those who are self employed or unemployed, you can obtain insurance through the Affordable Care Act. If you are in a state like Texas that doesn't have it's own insurance exchange, you can go through the federal exchange. If you have no or low income, the premium tax credit will make your costs very low. Biden temporarily expanded the premium tax credit so that even people making up to about 75K (adjusted gross income) can at least get some assistance with premiums. The difficulty is finding doctors who take these plans. I'm self-employed in California and have no other option except Kaiser. I'm not sure what my diagnosis is yet, but I cannot even get them to refer me to a hematologist, so I'm researching things and trying to figure out what tests to ask my primary care doctor to order. I do think you have to advocate for yourself. The medical system seems very overburdened these days and doctors don't have much time to think about their patients (especially problematic when you might have something so rare).

lynnevb | @lynnevb | Oct 28, 2023

https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
This is the very best site I have found to explain ET and PV.

It will tell you more than your PCP or your local general oncologist (unless of course your local oncologist is at a large institution where they can specialize in this particular group of cancers).

PV and ET are pretty rare so please do not be afraid. Read and let's support each other be as healthy as we can while we navigate with life with this particular problem.

Lynne

eileen11108 | @eileen11108 | Oct 29, 2023

In reply to @lynnevb "https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27 This is the very best site I have found to explain ET and PV. It..." + (show)

Lynne,

Thank you. The reference you mentioned is really great.

dkmitchell | @dkmitchell | Oct 29, 2023

Due to taking Hydrea, 500 mg. a day, old injuries sustained decades ago are now affected negatively since taking Hydrea. I had Bell's Palsy while pregnant 40 years ago and the pain characteristic of Bell's Palsy has returned in the middle of the night on two occasions. The pain regarding the knee I injured in high school gymnastics in 1969 comes and goes and I found myself grabbing onto a shelf in a store due to a knee muscle popping out of place. No sign of these two injuries until Hydrea was prescribed. I now have my Bell's Palsy eye taped shut due to any blinking causes pain. Again, these injuries are decades old and only returned upon the Hydrea was prescribed and made these former injuries alive and well again. Darn. A mystery to me and most likely a mystery to the medical community. All I can think is that some of my former injuries just cannot handle Hydrea.

nohrt4me | @nohrt4me | Oct 29, 2023

Thank you! I can't say how reassuring it is just to read that "most people have symptoms" related to their MPN. For so many years, patients were basically gas lighted by clinicians who believed ET patients had no symptoms. We're not asking for narcotics, for pity's sake. But most of us had to figure out on our own that we need a white noise machine for the tinnitus, compression stockings/gloves for the "tingles," and stress management/life simplification/exercise for fatigue and brain fog. It would be nice if docs could acknowledge these symptoms and offer these easy remedies.

ttown | @ttown | Oct 29, 2023

Wow, Lynne....What an amazing amount of easy to understand information. My platelets have now been in the normal range for six months for JAK2 ET, for which I am so grateful. But this that you have shared with us gives so much more information than I had ever found. I skimmed over it (it is a lot of info), and is done is such an informative way. Thank you for sharing.
Ginger

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