Results

Last week was pretty busy, what with a liver biopsy on Monday and then an echocardiogram on Thursday as well as some more blood labs drawn. For me, the stress of actually waiting for results is sometimes worse than the anticipation of the procedure itself.

 

I could probably come up with some pithy way to reveal my results here, but I think I like my doctor's emails better:

 

From my gastroenterologist -

"The biopsy shows very mild inflammation and some iron deposits in the liver- on a scale of 0-4, the iron deposits are 2- halfway there. It should be 0. So, minimal damage to your liver, all good, the iron deposits will improve once you have had iron removed by phlebotomy, although it may take 2-3 years. No need for a follow up liver biopsy but monitor blood tests every 6-12 months. Please let me know if you have any other questions."

 

This relieved me immensely. I have read so many stories from people with this condition who find out they have various levels of cirrhosis, even liver cancer. Hemochromatosis seems to be such an individualized condition, varying from person to person afflicted with it that there does not seem to be very much rhyme or reason as to whom gets hit with what at what point in their life. I am thankful that it appears to have been revealed early enough that treatment can be so effective.

 

From my hematologist -

"Good news. The echocardiogram of your heart is normal. (I sent a copy of the report by mail last week). Regarding your ferritin level, it is very minimally decreased (not sure if it's a true decrease or just lab variation), and it is still very high, so I strongly recommend to proceed with phlebotomy at this time."

 

So, at this point, I feel I can breathe easier. I have been steadily making changes in my diet (still have to work on that whole walking thing, which is really dumb as I have a treadmill in my garage...). Amy has really been doing an amazing job trying to become more aware. Sometimes I think I am annoying her by telling her about different sites and different foods, menus, info, etc.

 

I have to admit, however, that the more research I do, the more I am coming to the conclusion that no one has the final answers as to what one should or should not do; its up to the individual. Some things are obvious, some are not. Some people express opinion to the extreme while others take a more "calm" approach. Moderation has to be the key. I have already seriously cut down my red meat intake, changing hamburger to turkey burger for example (hamburger was perhaps where most of my red meat came from, with steaks being more of an every now and then sort of thing). I am having a serious dilemma over sushi, though. From what I understand, the "ban" on sushi stems from the bacterium they may foster, not the iron. But here is how I look at it: I have eaten sushi and raw shellfish (i.e., oysters and, more recently, lobster sushi) for upwards of 30 years now. Still alive. Yet some opinions I have come across say that people with my condition shouldn't even handle raw seafood, and even one commented about not being able to even walk on the beach. That seemed rather alarmist, to me. You see what I am up against here, right? I am wondering if there are any others who have my condition as well reading this blog who would like to comment with their own experiences, opinions, thoughts on this. Tell me what seems to work for you. I am trying to keep an open mind in order to make the changes that seem to make the most sense, but it does seem that a lot of the "information" I am coming across is really more "opinion" than anything else. Let me know.