Well I obviously can’t really address the specifics of your situation, just generally. My son was referred to GI initially w/ his liver issues so that might be standard. He also takes an ACE inhibitor, iirc, for HBP, but they never discussed fluid/edema with us that I can recall. He’s supposed to drink more fluids/water & reduce salt intake. He has Chronic Kidney Disease/Kidney Injury presumably related to the years of HBP, including untreated years, somewhat my fault, see quote below.

PS In speaking with the Liver Transplant Intake Coordinator, she said that this clinic typically follows patients with abnormal Portal Vein issues. It made me wonder why all those years ago we were never referred to this Team when his Portal Vein abnormalities came to light. However, as I try to make sense (if that is even possible) of these many things it seems to me that it is actually a blessing that we did not receive such a referral. Had that happened way back (possibly about a decade ago) it is highly unlikely that the brain tumor would have been present then. In fact, had they done the brain imaging to check with the associated abnormalities of the brain at the time, we may never have unearthed the tumor issue until some types of symptoms were present. Since Josiah has so many medical (and other) complexities, it is possible that even if there were some symptoms of a tumor, they may have been blamed on some other of his many conditions. So, the bottom line is that I CHOOSE TO BELIEVE THAT THE LORD HAS EVEN BEEN INVOLVED IN THE TIMING of Josiah’s many medical services…and even working within our mistakes.

To that end, I had been mentally kicking myself for not having followed through on the original Neprology referral made by Cardiology way back nearly three years ago now. Michael was kind enough to point out that I was in the midst of the major Special Ed battle at the time, so that my “dropping the ball” was entirely understandable, given all the things that were (and were not) going on then. In fact, had I followed through with the kidney doctors then it would have also been unlikely that the brain tumor would have come to light, given the liklihood of its 1-1 1/2 year speculated existance. Fortunately the Lord is bigger than our “mistakes” and He is Still working in all things, for our good and his glory! Blessings again…(and as always, please forgive my mistakes here as I’m writing on one of the hospital computers with Josiah [im]patiently waiting, so I don’t want to take further time to work on fixing my mistakes above)…

Some of that material above was from this source Historical Email #3Posted Jul 11, 2012 4:51am & quoted here:

https://specialconnections.wordpress.com/2017/07/30/four-years-ago-today-a-transplant-tale/

My dad has gotten some relief for edema in the legs using compression socks so if you’ve never tried that you might give it a go. Reducing your stress levels is a good thing.

Now I don’t recall you mentioning hernias before. J was born w/ bilateral inguinal (in the groin) hernias as well as an umbilical hernia. All were surgically repaired when he was quite young. The ones in the groin involved a mesh, not sure about the belly button one. Whenever he has surgery or certain procedures I’ll mention the fact of the mesh for I don’t know how it was “installed” so there may be metal there though he’s subsequently had multiple MRI’s w/out incident.

I’ve had a couple liver diagnoses in the past myself & the whole thing can be a bit scary, especially when they mention the possibility of the big C word, thankfully that didn’t end up being my situation, ultimately…

Having dealt with really complex medical stuff for my son sometimes it can make that arena a tad bit too familiar. With all we’ve been learning over the last few years about how so much of the medical “establishment” is captured enemy territory it’s important to work with providers that you can trust & who take your concerns seriously and fully answer your questions. Getting second opinions is also always an option…

I find/found it helpful to write down some of the things I wanted to discuss before the appointment & then refer to the list to ensure the bulk of those issues/concerns get addressed. Also it’s Crucial to get diagnostic & other info IN Writing. Trusting your memory on the minutia is risky business, especially if the situation involves complexities that weren’t anticipated for you can kind of go into a mental/emotional shock as you’re being bombarded with info about your health/life & it’s actually very hard to process it in the moment or have reliable recall of All that is said. Getting those providers to put it down in writing can help everyone get on the same page 🙂

In Josiah’s case his body produced Adenomas in at least 2 locations, the Pituitary Adenoma/Brain Tumor & some of his liver masses, pre-transplant, were likely adenomas. He never had those tumorous scenarios revealed by blood markers, which would have been more typical. When the transplant was well-behind us I wanted him to get a full body scan to see if there were other “adenomas” or tumors elsewhere & convinced the transplant doc to refer us to the appropriate specialist, a type of oncologist, iirc. Anyway, that doc REFUSED to do any type of scan to search for potential other tumors & told us to come back after blood work indicated a tumor search made sense. The fact that Josiah had already had DOZENS of tumors in his body with no blood indicators of that condition whatsoever didn’t even make that doc blink, but it sure got my blood boiling!!!

When I get overwhelmed with the uncertainties & fears about health & life that’s when I finally realize, again, that I really can’t face such situations very well in just my own strength. I turn to the Lord in prayer & worship & often ask other people for prayer support to strengthen the sense of God helping to carry us during those stormy seasons.

You AND God have got This, Whatever This turns out to be!