@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

Hi @davidgenebarnes. It's a pleasure to have a new person in our conversation! Although I'm sorry that your health is not optimal I'm confident you will find compassion and support in this group. I will be getting a kidney transplant in the next year so I do not have the answers or insight into your particular situation but I am confident you will get plenty of assistance at the Mayo Clinic. If you have not had your appointment yet, and no one on this chat has responded to your questions Yet (I'm behind in with my emails and reading all the new posts), the Mayo Clinic website is where I often turn for basic medical answers. You can look up your condition by name and/or symptoms and the explanations are clear and concise with bold words with links to further information if you need it. I have found this source of information a way to help me create a list of questions for my doctor, eliminate unnecessary worry, and sometimes take questions off my list. Hang in there, you will be in good hands at the Mayo Clinic!

@davebarnes - I'm sure as you look to the future it might seem bleak but try to take each day, even each hour, at a time. I know that is easier said than done and I am not feeling sick like you, but I do know others who have had similar experiences and are doing well now. It is hard to carry on when you can't see the light at the end of the tunnel but it sounds like you are doing the right things to take care of yourself. I do know that it is humbling to have to accept help but that is part of life. I have had plenty of times in my life where all I could do was "take" from others. I needed physical and emotional support but eventually I have been able to give back as my life has settled down. I'm preparing for a time of taking again as I get a kidney transplant in the next year but I am confident that there will be a time for me to give back in the future. Please keep plugging along knowing that what you are able to do is just fine because it is the best that you can do at the moment.

@lcamino Lynn, I too go often to the Mayo as a reliable site for info. When I was checking some Medicare coverages the Mayo popped up and even had info about what I was looking for! I was wondering about the difference between Wellness visits and physical exams. Mayo seemed to support wellness visits saying that if additional tests were necessary they could be billed separately and paid at 80%. My PCP will only do physicals. He has some excuse for that but it would seem to me that the biggest reason is that since Medicare does not pay the full amount when he does physicals the patient has to pay all of it. 🙁
JK

@davebarnes - Thanks for sharing at such a difficult time in your life. So many men do not have the courage to reach out as you have so give yourself a pat on the back! I'm glad you found this source for an outlet and information. I'm sure you were feeling at the end of your rope when you offered your wife a divorce but she is there to be your support. I'm sure she wants to take away your pain and the best way she can do that is for you to allow her to help you. Accepting help is humbling but your journey will be harder if you push people away. I encourage you to be each others sounding boards because good and honest communication is what gets couples through the worst of stressors (and I think your health situation ranks quite high on the list of life's stressors).

@contentandwell - I'm afraid I can't give you any suggestions on that.

@contentandwell - Thanks for encouraging me to get back to exercising more regularly. I have been lax lately, only exercising once or twice a week. I need to make it more of a priority again so thanks for giving me reason to get back on track.

@ contentandwell and @hopeful33250 - I completely agree with JK but I must add that sometimes even the best of doctors are going to struggle with issues. While I think there is a lot of benefit going to a teaching hospital, or hospital where the specialists will work together, sometimes things are just really difficult to determine. After my daughter died we were referred to a metabolic specialist and he said if he had seen our daughter in the ER he probably would have not put all the pieces together. I do not think he was just saying that to make us feel better. There were so many more common things to think were the problem that by the time he might have found the answer it would have been too late. The same thing happened when another family member was diagnosed with Ankylosing Spondylitis. The blood work was inconclusive so the most logical/common diagnosis was made and surgery was done to "fix" the hip pain and for awhile the pain was alleviated. When the problem reoccurred they realized their first diagnosis was incorrect but the second diagnosis was so much more rare that they did the most logical thing first. Sometimes doctors need to eliminate the most obvious solution when tests are not available or inconclusive. It is hard for us as patients, who want answers, to realize that being a doctor is as much an art as a science. I also find it eye opening when I learn that there is not a test for every diagnosis - there is so much doctors do not know. Having said that, you should never give up searching for answers, as JK put so well "You have to be your own best advocate."