Ttck15

[Corriemay15]

I had liver transplant in 2016, now suffering from low sodium and need to get a nuclear gastric emptying scan, has anyone had this test and what was the outcome.

[Fides]

When you say low sodium, can you give your test score?

[Corriemay15 in reply to Fides]

It can range from 118 to 130

[Fides in reply to Corriemay15]

I tried looking back at my results post transplant and mine have only ever been high, the score range on Mychart for me shows the green normal range as 133 - 146 mmol/L, it doesn't give a numerical value for the yellow range, but Dr Google says 120 is critical, in as much as you can rely on google for anything, what did your medical team say?

[Corriemay15 in reply to Fides]

My medical team which is gastro, neurology, diabetic team and the liver transplant team at Edinburgh out of all of them has been my GP who says it could be one of my many medication, so he took me of my water tablet and my lisinopril. First few months sodium levels 122/126 and my last test was at 130 which is still better than 120, my next test in a week so find out if there part of the cause🤞So now I am going for a nuclear gastric emptying on Tuesday because of malnutrition and bad anemia, just to see how stomach is digesting food and for any blockages, and check my insulin, with taking adoport for the digestion of food, it's difficult putting it all in words, but in the long run it can still effect the bile duct and my pancreas has that is chronic pancreatitis. Sorry to go on but that's the shortest I can put it far far more going on. Do any of the medication I mentioned ring a bell, just a thought with what my doc are trying. Ttck15

[Fides]

So I haven't had a nuclear gastric emptying, good luck with that👍I have had a lot of problems from my medication, particularly Adoport and Mycophenolate. I don't seem to be developing ascites thankfully or at least I hope not, but post trasplant and I keep getting oedema for 2 weeks or so that settles down again, mainly in my feet. Adoport causes renal failure for me, so they have tried decreasing the Adoport and increasing the Mycophenolate, but Mycophenolate comes with it's own problems.

They have tried scanning my kidneys with ulrasound and found nothing wrong, but I keep getting problems with low urine output, they are not clear where the fluid is going. but they oddly want me to increase my fluid intake.

Addenbrookes Hospital were originally testing creatinine and sodium levels which kept spiking as it looked like renal failure, they finally decided this was most likely because of my Mycophenolate, but since my hand over to the GP there have been no follow up tests to see whether this is actually the case.

I do get that the hospital want to hand over responsibility to the GP asap, but the GP is not picking up the slack and not organising the tests, apparently have to wait for medical review with the GP and stuck in limbo between the two, while waiting for medical review with GP.

Anyway my main point was the problems I keep getting from Adoport and Mycophenolate.

[Corriemay15 in reply to Fides]

I definitely understand about wanting to hand you over to the GP, but I am lucky enough that I get my bloods done at the surgery. Has for the renal and sodium I have to reduce fluids to 1.5litres a day, take 3 X 600mg of sodium tablets a day, but at Edinburgh they think that it's the lisinopril and water tablet that are damaging my kidneys, so they have stopped them, and now trying to find out if my digestive system is doing it's job and taking Creon with food to see if I am getting the nutrition I need. Everything is trial and error, but hopefully I will get some feedback from the gastric emptying 🤞.