Monday, September 02, 2013

Liver cysts

My stomach hurts.  A lot.  It hurts right under my breastbone, and when I press on it, it feels tender.  But I'm not sure if it's tender because there is an infection/ulcer/gallstone/alien parasite, or if it's just because my liver is coated, yes, COVERED in cysts.  That was a revelation from my first MRI at Beth Israel.  It was shocking, even as I was prepared for it.

After dealing with this pain for a few months, it's time.  Time to get it checked out.  Sigh.  I could go to my nephrologist, but I don't know if she can help if it's stomach/gall bladder related.  I could go to a gastroenterologist, but then I'd have to explain why my abdomen is such a mess.  (My gyno, for example, was shocked when he palpated my abdomen, and said he was glad I told him that my kidneys could be felt anteriorly, because otherwise he would have suspected serious uterine growths, or something else crazy.  He also said giving me a hysterectomy would be a real bitch.  Okay, he was more professional than that, but that's what he was thinking, I promise you.)

I mentioned it to my GP, who happens to go to church with me, and he said, "See me first."  Sigh again.  Not that I'm opposed to seeing my GP, it's just that I'm trying to minimize my interaction with doctors.  Because I hate them.  I mean, not as individuals.  They're nice enough, I suppose.  I just hate spending my life in doctor's offices.  It's a drag.

So, anybody else have painful liver cysts?  Because if it's not liver cysts, I can imagine a long line of testing with no light at the end of the tunnel, and a lot of surprised doctors along the way who have barely heard of PKD, much less palpated kidneys anteriorly.



Anonymous said...

Yep - painful liver cysts keep me from sleeping on (what used to be) my 'good side'. My nephrologist first trained as a internist and seems to know enough about PKD. However, as for the liver cysts there is not much that they can do before it gets really bad. And by that time it is time for drastic measures such as removing part of your liver. Sorry to hear you are in pain...

Anonymous said...

P.S. I hate doctors too. However, if you are not sure whether you are in pain from liver cysts, it does make sense to first go to your GP. That way, you can rule out some usual suspects (or find -a treatable- one!), and prevent entering the 'wrong' funnel of specialized doctors for nothing.

Anonymous said...

huge hugs to your ward friend GP for hearing what was up and asking to see you.
bigger hugs to you for making the appointment and going. I'm glad you didn't put it off, even though it meant another person to get confused by your medical history. I totally get how hard it is to add new medical people, and how things have to be pretty bad to want to have new paperwork and new people to explain things to. which is why I had to congratulate you!

Good luck making choices on what to do and who to see and what to poke and how to poke it, as you move on with your MRI results.

I enjoy following your blog, and have done so silently for years. I struggle with chronic pain and comparatively mild liver problems. Bad back surgery led to permanent nerve damage in my spine/hip. Somedays I am so slow as I walk down the hallway of treadmills at the gym. Working out helps the pain in the long run, some days are easier than others. On the really hard days, where I get passed by people with walkers and wrinkles, I feel pretty miserable (I'm in my 30s). I used to bitterly look at people running and jogging on treadmills. Look how healthy they were, they could RUN! Look how skinny the were, they could move! Why can't I be healthy, or more slender?

On days like that, a post you shared a long time ago smacks me upside the head pretty quickly. Something about not judging you because you were skinny, you worked out to stay healthy and be ready for the day you needed a transplant.

So my mind is reminded that Running on a treadmill and being skinny doesn't mean one is healthy or medical worry free. And it helps me not feel so alone, and makes me wonder who else is having a bad body day. And that leaves me treating others kindly at the gym, instead of putting my headphones on and head down.

So i'm trying to say Thank you, thank you for making my painful days less lonely, and letting go of mentally judging/comparing myself to others who walk and talk more healthy than myself.


Kade Mount said...

Aloha PKD,

I have PKD ruptured a cyst in motorcycle crash really painful 20yrs later I have an anyersum of my aortic root my heart beats really fast haven't been able to keep down food have gag reflex my lower back stomach hurts too be well alohas kade

Anonymous said...

I was the same place you are two years ago. Went to Mayo Clinic and Dr. Nagorney removed over half my liver. I was back to a very demanding job 6 weeks later and now live pain free and look normal. Don't be afraid of the big surgery. Don't wait too long. The worst news to hear is that you waited too long and are no longer a candidate for surgery and then there is nothing to do.

Anonymous said...

How are you doing? Any news from the doctor yet? I hope that you are feeling better.