My frustration level has increased since Gene developed iron deficiency anemia. I just have to get some things off my chest. I read how others have doctors, especially hepatologists, who take the time to answer questions, give advice on symptoms and treatment and generally are there for you. Gene and I are literally on our own. What advice we receive is usually more detrimental than helpful and our doctors simply do not know or do not care what happens to him. There is no one doctor in charge. Even the hepatolagist says she can only prescribe diuretics and nothing more.
Gene tries to eat properly and take only the safe supplements. Unfortunately, we have had so many negative experiences with doctors in general and hepatologists and GI specialists who won't take the time to answer our questions or who give us poor information or just don't know. This has happened again and again so I no longer have confidence in our medical services through Kaiser.
This has forced us to listen to our instinct and research things on the Internet. Just for a few examples, Gene was told by his surgeon to eat alot of animal protein prior to his surgery. No wonder he fell into a coma a few hours after his preop physical and treatment for his cancer was cancelled. At this time, Gene was also placed on iron supplements because his hemoglobin was low following a bleed from his second endoscopy. The ER room missed the bleed and low hemoglobin. Only the surgeon caught it the next day when we brought the lab results to him. Of course the ER didn't want to release the records to me initially.
Gene's first hepatologist never did an endoscopy. Perhaps if he had, Gene's cancer would have been discovered ten months earlier and Gene might have had a chance for surgery. This same hepatolagist did not mention to Gene until his second appointment that he should take small doses of Lactulose only if he didn't have one or two bowel movements a day. Now this information came several months after Gene was diagnosed with cirrhosis and much of that time he was near coma levels from paracinthesis, failure to check enzymes or replacement of albumin. We researched this on the web but the doctors refused. Also, Gene's hepatologist turned as he was walking out the door and casually mentioned not to take iron.
Then there was the doctor who put Gene on medication to prevent hepatic portal hypertension still without doing an endoscopy. We were not warned that Gene's blood pressure could fall dangerously low. Had I not phoned a pharmacist after reading about Inderol on the Internet and been told to monitor Gene's bloodpressure closely, he would have died. Even when I called Kaiser and explained the system they didn't know what to tell us.
The next liver specialist we saw said, oh you've never had an endoscopy; we'll take care of that. about four or five months later when the doctor was about to go on maternity leave, Gene asked again about an endoscopy. This time she scheduled it for us and the rest is history. This doctor was the best of the four doctors in the GI clinic. Another doctor cancelled a recheck on Gene's stomach ulcer because he had already had two biopsies on his esophagus and didn't even check with us as to why it was scheduled. The last doctor refused to treat Gene's cancer through less invasive procedures saying Gene would bleed to death and besides, the surgeon was his father in law and they didn't get along. Since the surgeon refered us for this endoscopic treatment, we were turned away.
Now I said the specialist we continue seeing is the best of what is available at our local medical facility. Fifteen months ago this doctor said she didn't need to see Gene anymore as there was nothing more she could do for Gene. Now she is the liver specialist. I ranted and raved and she eventually agreed to see Gene every two months and then every three months. Most recently, Gene asked her to check his iron levels. She faxed the results to us but never commented on the low iron or what to do.
Diet; discuss diet with our HMO doctors. Not a chance. The best they could tell Gene with his edema was to keep his hands off the salt shaker. We even consulted with two dieticians regarding his liver and what was safe and what wasn't safe. It turned out that as novices, we knew more then they did.
In three years of fighting to keep Gene alive and stable through our incompetent medical care, we have found two Doctors at another Kaiser Medical Center about an hour away who are knowledgable and seem to care. Gene sees their hepatolagist on the 27th and I hope he can help us determine how much iron Gene can safely take and how best to use antibiotics. Even though it's extremely difficult for Gene to get to Walnut Creek, I'm hoping he will continue his care under the one Hepatologist we trust.
I've been holding all this in for too long. I'm about to explode so decided to put my thoughts down.
Thanks for staying with me,
LIVE IN THE MOMENT!
Hugs and Prayers