So it has been a loooonnnngggg time since I've updated.
Unfortunately, I have now also been diagnosed with Nutcracker syndrome. 🙄 Which is another abdominal vascular compression syndrome.
While there are many surgical treatment options for this, the one I feel is the best fit for me is to undergo a therapeutic nephrectomy, where my kidney is donated to someone in need.
I have been undergoing that process for roughly a year now, and it has been very challenging as a bedridden person.
So as you can imagine, spending no more than 15 minutes upright a day to go to the bathroom and heat up food is extremely miserable. Basically, no quality of life. And the pain is obviously horrific. May-Turner can be debilitating and disabling, but Nutcracker is completely incapacitating for most people. Most people end up bedridden and a lot of us end up in wheelchairs.
By donating my kidney, it stops the diversion of flow on the left side, because you're taking out a bunch of the flow.
Your kidneys output quite a bit of blood, and the paralumbar veins are not really equipped to handle that volume of blood (which is how all of these symptoms arise).
I've also had to do a lot of traveling for the testing to become a living Kidney donor. Currently, the only way I can travel is to lay down on my side in the backseat of my car while it's being driven by somebody else. It's awful.
But, my surgery is coming up, and I am very excited to see how I feel afterwards.
I don't think it will solve everything, because unfortunately the stupid stent that they put in for the May-Thurner syndrome keeps clotting.
The hypothesis is that it was oversized and placed incorrectly, because I have clotted on virtually every class of blood thinners. Nothing has been able to keep this thing open. And, I do not have any underlying hypercoagulability disorders, and I am not allergic to the stent materials.
So after The Nutcracker syndrome is solved, back to the stent issue
I'm hoping to get the stent removed, but finding someone to do that has been extremely challenging. It's a very tough procedure, very dangerous, and only a handful of surgeons in the US perform it.
And unfortunately for me next year, I am stuck with very very shitty health insurance because of the expiration of the ACA enhanced subsidies.
And the only insurance that I can afford, restricts me to my state of residence, which is not where these surgeons are. :( I could try for an out-of-state
exemption to try to get care, but that usually ends up being a nightmare.
But maybe after the Nutcracker is solved and I'm feeling better, I will have the energy to keep pushing forward.
Dr. Ashley | Panicked Foodie