This and That and Talk - My Transplant

@davebarnes I am trusting that you will get some relief at the ER. As you feel comfortable doing so, keep us posted. Teresa

@davebarnes, I'm sending prayers from Kentucky. Rosemary

Thank you. In ER about to get CT scan for paracentis I hope

@davidgenebarnes, You are in a good place to receive a diagnosis and treatment. One of the realities that many of us experience is that visits to the ER become a routine. I am sorry for this unplanned visit for you; I am happy that you are getting checked out.
I sometimes wonder if I had been treated by Mayo when I was first listed for a liver transplant, that maybe some of my complications could have been avoided. I try not to dwell on that, though.

Prayers do work. I'm sending more.
Rosemary

@rosemarya I thankfully had no avoidable complications from my cirrhosis, just those miserable but typical effects -- fatigue, low platelets, low iron, HE, but I sure wish when they they couldn't diagnose me for so long up here that I had gone to Boston then. I am confident they would have figured it out. I guess the outcome would not have been much different but going a year and a half not knowing was really frightening. The only thing they zeroed in on was the confusion-delirium and thought there was a brain problem, like some type of post migraine damage,seizures, and of course the PCP I had been going to before I dropped her, thought it was Alzheimer's. No one connected the dots until I ended up in the hospital and the hospitalist sent for an ammonia test.
JK

@contentandwell Your story is really a good one, JK. It helps to educate us all in continuing to look for answers even when they don't seem to be readily or easily available. Your symptoms were so varied that I can see how the real reason could have been overlooked or even misdiagnosed. I'm so happy for you that your story had a good ending.

If you could give one piece of advice to someone who is searching for answers, what would that be?

Teresa

@davidgenebarnes Prayers from Michigan as well! Teresa

@contentandwell, I'm sure that this was quite frightening for you and your family to go thru. In my case, my PCP noticed that my liver enzymes were elevated. And he referred me on to GI who consulted with a liver specialist to get my diagnosis for liver disease. So for around 7 years, I was closely monitored for any signs of progression to cirrhosis. And then, it hit me with a vengeance (Fall '08) and I was referred to Transplant dept at University of Kentucky. I guess that my ammonia levels were monitored because of the liver diagnosis. I received excellent care at UK, but when complications inside my bile ducts and inability to get a firm diagnosis about possibility of cancer in bile ducts, I needed to be removed (Jan '09) from transplant list until I was seen at Mayo. Unfortunately for me it was during that interval that my kidneys quit and things spiraled downhill very quickly. I was flown out of ICU to Mayo (late Feb.09)......and here I am today:-)

Isn't it a blessing that we are here today!
Rosemary

@hopeful33250 Teresa, first I say research, research, research. I, not being a medical person, never put my always being cold, my fatigue, and low platelet count together with my HE episodes. I believed that my team of doctors would somehow do that, you know, like on that TV show "House". When a certain amount of time went by and they were still spinning their wheels I should have gone to Boston.

So my second piece of advice would be to give your locals a chance but if they can't figure anything out then head to closest, highly reputable medical center, even if is a distance. My hematologist tried to figure out my platelets by doing a biopsy and some other test, I forget which. Of course he was not putting it together, he was looking at my low platelet count from a totally different angle. My neurologist also was looking it from the angle of a brain problem. Had I gone to the gastro center at MGH, to one of the hepatologists there, as I did after the cirrhosis was finally diagnosed, I am so sure I would have gotten the answers. I have been so fortunate at MGH. All of the doctors with whom I have been involved with for anything even slightly ongoing have been great.

Don't give in until you have the answers you need and deserve to have. You have to be your own best advocate.
JK

@rosemarya Rosemary, it truly is a blessing that you are with us today. You are a guiding light in these boards.

Funny, my PCP never thought anything apparently about my liver enzymes but he now expresses concern about my creatinine. It was 170 last week, down to 160 this week, drinking even more water than before -- glug, glug, I'm drowning here. My surgeon is not concerned yet, my meds were changed recently and will be changed again shortly.
JK