In one day. It doubled in one day.  

I’ve already been diagnosed with plenty of other illnesses:  POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, MALS (Median Arcuate Ligament Syndrome), EDS (Ehlers-Danlos Syndrome), Intracranial Instability, Cerebral Medullary Syndrome and MCAS (Mast Cell Activation Syndrome).

Do I really need anything else?  Isn’t that enough?

I walked into a surgical consult fully expecting two more.  I was mentally (kinda) ready for that. But in a 30 minute appointment they actually added seven more things wrong with me. Seven!

Two of them I already kind of knew about:

  1. Nutcracker Syndrome
  2. May-Thurners Syndrome

That’s why I was there – to hear about a big, long, rare, and hard surgery. I’m not a newbie when it comes to big, long, rare and hard surgeries. You’ll learn this throughout hearing more about my journey and my monsters. But having already had one stomach surgery and 3 brain surgeries, among others, I was shocked to hear I have to get a kidney transplant. An auto-transplant, actually. 

Yes, you read that right. Because of my Nutcracker syndrome, my left kidney/renal vein is being compressed to where my legs, back, and whole body is not getting blood flow. It causes debilitating all-over body pain. I can only stand for 2 or 3 minutes at a time, and need to use a wheelchair for things like shopping or walking very far. I have similar issues with my arms. 

The surgeon will take my left kidney and transplant it to the right side. I will have 2 kidneys on the right side. Who has ever even heard of that? Isn’t that bad enough? Apparently not, because he rattled off a few other things he has to take care of while he’s in there.

While messing around inside me, he told me he is also going to:

  1. Remove my appendix for future precautions because if my appendix were to burst it would compromise my kidneys. 
  2. Biopsy a tumor on my liver that I didn’t know I have.
  3. Fix an umbilical hernia I didn’t know I have.

OK … That should be enough.

Nope … It’s not.

Also, he told me:

  1. I have some ovarian cysts. They’re harmless unless they rupture. I’ve had them rupture before and it’s excruciating!
  2. I have a bicornuate uterus. 

Did I know what that was? Absolutely not. But I’m learning, and that’s a story for another day as well.

Needless to say, I’ve been overwhelmed trying to digest all those little tidbits from one appointment. I went from 7 diagnoses in 8 years to another 7 in 20 minutes. 

It will be hard. It will be a long recovery. No doubt about that. But with the support of those around me and feeling like I’m in the best possible hands with my doctors, I will be ok. The pain relief and the quality of life this should give me after all these years, will make everything worth it in the end. Hope is a powerful thing to hold onto, so I have to remind myself to hold on tight for this bumpy journey ahead of me. 

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Jen

Jen