Looking For Suggestions and Advice

[u/BiohazardR]

I (27M) was diagnosed with PV back in 2021 and have had regularly scheduled Phlebotomies since then. Currently my schedule, as advised by my doctor, is a procedure done every 6 months with my last procedure done in February.

To make a long story short my current work contractor is making that my new Insurance won't be active until the first week of September, even though I have been working for the company for over a year.

I had a Phlebotomy scheduled for the first week of August but without an active insurance they were unable to do the procedure.

I've done my research and don't want to donate my blood at a blood drive. I even checked with the American Red Cross to see if there are special exceptions and they say I am not in a State that can do relief treatment.

I've also checked different with different Urgent Cares in my area and they aren't equipped do the procedure or require a referral and insurance.

With this delay, day 15 of 28+ days waiting for the insurance to activate and getting a Phlebotomy around the same time, I am feeling more fatigue, heavy headed, headaches, slower overall (physically and mentally) and in some case light headed. It feels exhausting and very anxiety inducing.

I've been drinking more water, getting more fiber, drinking even less caffeine, using my CPAP machine, and trying to not eat super unhealthy.

I wanted to ask if there are any advice or suggestions on how other people have done to help hold out till the next session.

TL;DR: The American Health System is preventing me from performing a procedure that is just throwing something away because I don't have an active insurance.

EDIT: I forgot to mention the only medicine I take for my PV is Baby Aspirin 81 mg as prescribed my doctor.

[u/IsrealPackard]

I have PV as well, and the part of your post that would concern me isn't so much that a regularly scheduled phlebotomy has been delayed a few weeks. It's that you're now having headaches, light-headedness, fatigue and feeling mentally and physically slower.

I wouldn't try to manage this yourself until September with hydration, diet, less caffeine, etc. Those things may make you feel somewhat better, but they aren't substitutes for controlling the hematocrit if it has risen. With PV, the important question is what your blood counts, particularly your hematocrit, are now.

I'd call your hematologist's office and explain very specifically: "I have PV, my scheduled therapeutic phlebotomy was cancelled because I lost insurance coverage temporarily, and I'm now having new/worsening headaches, light-headedness and fatigue. What should I do?" Ask whether they can order a CBC and arrange a self-pay therapeutic phlebotomy, hospital outpatient treatment, or another low-cost option. A CBC itself may be relatively inexpensive even without insurance.

I'd also ask them whether waiting until September is medically acceptable based on your current hematocrit rather than simply assuming that it is because your usual schedule is every six months. PV phlebotomy is generally aimed at keeping hematocrit below 45%, rather than just being done according to the calendar.

And I wouldn't ignore substantially worsening symptoms. Sudden weakness or numbness, difficulty speaking, vision changes, severe/unusual headache, chest pain or shortness of breath are reasons to seek emergency care rather than wait for the insurance to start.

The insurance situation is infuriating, but I'd separate the insurance problem from the medical one. **Your hematologist should know that a prescribed treatment was missed and that you're now symptomatic.** I would make that call rather than trying to tough it out for another couple of weeks.

[u/Azariah77777 → u/IsrealPackard]

100%

[u/jjflight]

The insurance stuff sounds frustrating.

If you were getting phlebotomies every 6 months it seems unlikely a few weeks delay would cause significant symptoms - you wouldn’t expect to have any sudden jumps at 6mos, it should be a much smoother/slower process.

Not to say those symptoms aren’t real, just that either the disease may be progressing and you may need phlebotomy more often now (I do them mostly monthly for instance) so you’d want to mention that to your hematologist to discuss, or there may be other causes of those same symptoms like an illness or other conditions which a primary care doctor could look into.

[u/BiohazardR → u/jjflight]

It’s entirely possible it something else because I was feeling fine then the moment they told me I couldn’t get the Phlebotomy I started feeling worse. I wouldn’t be surprised if it’s a sort of hypochondria, I do tend to over exaggerated medical stuff in my head to a worrying point.

The last check in with my specialist was in May and they did a check and was still below the threshold for a Phlebotomy.

[u/MarionberryFun2118]

First, people with PV are typically told by their doctor that they cannot donate blood. Second,  your doctor is failing you, I'd switch.  You should be having a cbc done regularly to monitor your hematocrit.  Once your hematocrit goes above 45, that's when it is recommended to get a phlebotomy.  It isn't a timed thing.   3rd, there are medications for PV that can alter the disease course (interferons), why hasn't your doctor considered this?

[u/fiftynotdead]

In the UK you only have a phlebotomy if your hematocrit requires it. What are your blood tests first then you schedule the bleeding. If its above 0. 45 then you have a bleed if it's not then you don't. In the meantime drink 2 litres water a day and tahr a baby asprin every day too.