Posted anonymously by admin with the patient's agreement
The system is broken. Such a lack of communication between providers. I’m always worried that one Dr might give a medicine to my husband that would further damage his liver (stage 4 NASH cirrhosis). Thankfully our PCP, gastroenterologist, and hepatologist seem to all be good at communicating and seem very knowledgeable of the disease.
It’s when we have to go to the ER or be admitted that’s the problem. We use a local hospital from where he is listed and it’s like every time the ER wants to run every battery of tests known to man and “re-diagnose” him. Example. He had bronchitis a few weeks ago. The PCP’s nurse practitioner saw him. First time we’d ever seen her. He had a 10 lb weight gain in about two weeks so she sent him to the ER to make sure it wasn’t ascites. The ER did two CT’s one of his lungs to rule out clots for the shortness of breath and one of the abdomen to check for ascites fluid. (He had just had an ultrasound as an outpatient 5 days earlier to check for ascites and there was none). Everything came back clear. But the ER Dr was trying to figure out the fluid gain. Finally after 8 hours in the ER I said look, we’ve dealt with this fluid gain and loss like this for two years now. ( I knew my husbands compliance with his meds and diet) he was wheezing, coughing and no other symptoms. I’ve had asthmatic bronchitis off and on my whole life. I know what it’s like. And I’m no Dr, but really? Finally the Dr said, just nothing makes sense. I spoke up and said, could he not just possibly have bronchitis? He was like well yea that is possible. Diagnosed him with bronchitis, gave him an inhaler and cough meds FINALLY. We then got to walk out thru a very crowded standing waiting room only in the height of flu season getting exposed to who knows what.
On another note, the transplant team wants to know everything but they don’t want it to help with his care it seems, more to just use the information to monitor the progression of his disease. That’s what we’ve learned anyway. Outside of them receiving info and monitoring him yearly any time we have an issue we use his local pcp or gastroenterologist. His gastroenterologist trained at his liver transplant hepatic Dr. So we’re lucky in that sense but for folks who don’t have good local Drs their care can be mismanaged.