@colleenyoung it’s taken me some tome to think how to respond to this, and even after much thought I do not see anything remarkable or particularly inspiring about my journey, so I will just try to sum it up as best I can.

My journey apparently started long before I realized it! The first symptoms I had that weren't vague were episodes of confusion, some minor and fleeting and some more serious that put me in the hospital. Even with that it took almost a year and a half for me to get diagnosed. When I did finally have a diagnosis I was able to see how many other symptoms I had that were basically not given serious consideration - lowering platelet count that had been occurring for about 10 years, trembling hands, diagnosed as “essential tremor” (my hands no longer shake), worsening handwriting, cold all the time, sleep difficulties, diabetes and I think there are a couple more but they elude me right now.

The diagnosis was finally made when an HE episode put me in the hospital. My neurologist suggested liver problems (I was seeing him because my PCP thought these episodes were neurological). They tested my ammonia and it was quite high, which led to a CT scan and the diagnosis. So, with what led up to that I know now that I will never again go without a diagnosis for more than a few months, I will get myself to a major medical center. When I went to Boston the hepatologist there felt that I had probably had cirrhosis for about 10 years!

Second lesson, if people gift you with a special, costly wine, DRINK IT! I had some very nice wines that I put aside for special occasions but then suddenly I could no longer have alcohol ever again, despite my cirrhosis being from fatty liver, not alcohol. Some friends were recipients of some very nice white wines and champagnes. This last part of course is my attempt at some levity.

I started seeing the hepatologist in Boston in June of 2015. On my frequent visits there it was suggested that it would probably be April of 2017 before I would get a transplant. At the next visit the prediction was after the first of the year (2017). Then at the next visit it was November (2016) at the earliest. Starting in Mid -August things went downhill. I was miserable with extreme edema and ascites. My husband and son thought they were going to lose me (of course I didn’t know that until after my transplant). I got the call on September 22 and was transplanted on the 23rd. Hallelujah! From the reaction of my hepatologist and her NP I think they too may have thought I wouldn’t make it. They were beyond excited for me. Since then life has been wonderful. Having that second chance at life changes you more than you can imagine. Only problem now is that I had a knee replacement 3 weeks ago and am still in a lot of pain, much worse than I anticipated. This too will pass though.

I can only say that we need to be grateful for every day, and also we need to take the best possible care of ourselves that we can. I had let myself get very overweight while raising my son and daughter and very out of shape. I don’t think I will ever let that happen again. The weight was the cause of my problems. I knew it could cause heart problems but I never realized how many other problems it can cause. I’m a bit wiser now. It’s never too late to start an exercise program. Sure, you have to start slowly, but it’s a start.
JK

Colleen thanks for that information and your story. I didn't know much about my liver when l first got the diagnoses l was shock since it didn't run in my family. Some of the things you experienced I did too. I had the tremors but it was said to me it was the antidepressants which l knew l shouldn't have been on. And tried to let them hear me to know avail either that or go back to the mental hospital. My hands were cold but it always have been a lot of my relatives have cold hands so that didn't mean anything to me but l was told l was anemic. Then as falling l had been falling since my tub and when it got worst my doctor didn't listen so l finally tore my acl.praise God l had a wonderful orthopedic he does survives on some of the professional players. Then it was bipolar then schizophrenia to find out it was actually symptoms of viral and autoimmune encephalitis and now it's HE, which is not in my family but when l asked my previous gasterentogist he said it was the medicines. So it could be the antidepressants which they have taken me off since this diagnoses or it could be from ibuphron, diuretics, or maybe seizure or high blood pressure meds. Who knows?? So that's why l wanted to know why l was going to the gastroenterologist/ hepatologist since l only seen the gastroenterologist before. Yes my stomach is hurting my upper stomach hurts and l am gaining so much weight. I was never this heavy only since l was taking the antidepressants and told about my HE and when l tell the doctors and l have told more than one they don't seem concerned. Only the vascular medicine doctor and the Mayo Clinic. He told me about my shunt that is open. So l didn't know if it's a slow bleed or what. He told me if everything was ok he would call me but he didn't l was just setup up with a consult and not told why. And l asked why l was having a consult but of course they won't tell you. You must talk to a doctor in that department and the doctor who sets it up and they don't tell you over the phone. So l was wondering what was the difference but only told they do both. But l said why l am not seeing just the gastroenterologist and l was told he specializes in the liver. I wanted to know if that ment another TIP surgery or if it was more than just that? So l guess l will find out next week but l just wanted to be a little knowledge about it because you know how they explain things and you have to tell them to break it down to layman's terms. But l do want to know about when you had to wait for your liver were you on dialysis or you had to take special meds? But it seems like you overcame and you got the victory...

Hi Lisa, Just to clarify, that inspiring story about her liver transplant was written by JK @contentandwell.