Polycystic Kidney Disease (PKD) Support Group

I have a massively cystic liver that is taking over my entire body and it HURTS! I do have my native kidneys as well, but my nephrologist and I are quite confident it's the liver that is causing the majority of the pain by compressing all of the other internal organs in the abdomen (my colon and intestines are grossly displaced, my diaphgram no longer expands the way it should so my breathing is impaired, and the liver wraps around the my spine on both sides (except where it's pressed the spleen and stomach against the spine on the left side....plus it goes to down into the pelvis). It also presses on the the fascia and muscles and is trying to escape my body by any means possible, including expanding my rib cage, making me look pregnant, and compressing my stomach to the point to which it no longer expands.

I by no means seek pain medication or any other medication for that matter. If I had my way I wouldn't be on anything at all, not even BP meds, but that's simply not an option. This is real pain and I need relief (I have a very high tolerance for pain, but this is much too much for mere OTC meds).

My nephrologist provides all of my treatment, including my pain management.
I'm currently on OxyContin twice daily with oxycodone IR for breakthrough pain medication and diluadid for severe, "avoid the emergency room" breakthrough pain. It's a heavy duty pain regimen, but I have some really heavy duty pain (and it's taken years to lead up to this). I started with just Tylenol, then Percocet PRN, then very unwillingly ended up on OxyContin (been on and off it a couple of time, thanks to a couple of liver cyst sclerosing procedures that dealt with some of my larger liver cysts and dramatically reduced my pain for a period of time). Alas, there are no more cysts to sclerose and the pain is unbearable with some heavy duty medication. I still undermedicate, but that's out of choice, not because my doctor refuses to treat me.

I don't know where you and your patient are located, but there are a number of PKD specialist across the country who truly understand that PKD and the accompanying cystic liver hurt. A list of these PKD clinics can be found on the PKD Foundation website, www.pkdcure.org.

I understand when on dialysis, appointments with nephrologists are generally short and focus solely on the dialysis process itself; they no longer have the give and take and understanding that comes from a doctor/patient relationship that develops over years of care. If his nephrologist doesn't believe this is real, perhaps a consult with a hepatologist is in order. There may be some options to reduce the size of the liver (sclerosing, fenestration, liver ressection) and thus reduce the pain signficantly. A hepatologist may also be more understanding of the pain issue (understanding how ennervated the liver is and how it presses on the other organs, fascia and musclese) and thus more willing to work with the nephrologist on pain management.

Please let your patient know he is not alone; there are others out there who deal with this on a daily basis and many are in the same position he is with doctors not believing that the kidneys or liver can possibly hurt. I am very fortunate that my doctor believed me from the beginning; there was never any question that PKD kidneys or the massive liver hurt--he could literally see the pain on my imaging studies.

If you have any questions, please feel free to message me.

Best wishes,
Ruth

Thank you, thank you Ruth! I believe that my patient has significant pain. He has been on the same Oxy dose for quite a while and we all know tolerance can develop reducing the efficacy of the medication and it's also possible that his liver has grown even larger. His MD actually has verbalized to me that he doesn't believe that this patient is experiencing pain but that he is looking for "drugs". I am horrified that this patient is being left to suffer. i have referred him to a local pain management clinic. I am hopeful that they can help him. He is going in for a celiac plexus block at the end of the month. I am going to research MD's in our area for PKD specialists per your advice.

Thanks again for sharing!