So today I had my first treatment for my Haemochromotosis. Phlebotomy number one complete! Anyone who knows me well knows that I am really no good with needles or blood draws, so I was really nervous about it. A bag a blood is a lot!
Luckily I have an incredible husband who went along with me. During the whole thing he kept asking me how I was doing and tried to make me smile. I did pretty good till the end when they took the little rubber band that makes your veins pop out off my arm then the spinning started. As per usual I feel sick and they have to lay me down and put my legs in the air so that I don't pass out. I am so awesome.
But I do have to say, it could always be worse. We were in the same room as 3 elderly people who were all receiving chemotherapy. I can't even imagine going through something like that. It makes me very grateful that my thing is so minor in the scheme of things.
I have a follow up exam in October where they will do some more blood panels and see where my levels are at. Hopefully since my levels were so low to begin with, they should be regulated and I won't have to do this again for quite some time. Yay!
Monday, September 13, 2010
Saturday, September 4, 2010
Diagnosed
Yesterday I was diagnosed with a blood disorder called Haemochromatosis. It is a genetic disorder that I have known about most of my life since my dad, 2 uncles, and grandpa all have it. Originally we were told that non of us kids would have it since you usually need 2 genes. One from you dad and one from your mom. When my dad was diagnosed my mom was tested and she does not carry the gene, so I only received one from my dad.
Well last month when running some blood panels with my doctor, my iron came back high. So she sent me to a blood specialist where he ran MORE blood panels along with a genetic test for haemochromatosis and it came back positive. Yay me! I defy odds!
Now it is a very easy disorder to handle, especially if caught early enough. It is basically when your body absorbs to much iron in your blood and does not filter it out correctly. The excess iron and eventually build up in your organs, causing some major problems. In order to correct the iron levels you have to do phlebotomy's. So basically they have you do some blood draws until the excess iron is out of the blood. Then you just have to go back every so often to maintain your levels.
My levels were fairly low. In a normal person the blood saturation percentage is between 15 - 50 %. Mine was 65%. They also have a ferritin serum levels of no more than 50 and mine was at 56. When my dad was diagnosed, his levels were over 100. So for now I'll have to go in and do 1 phlebotomy, then go in a month later to re-test my levels and take it from there!
In a way I am very lucky. We caught it extremely early so the chance of me having any liver damage (the first place iron stores up) is small. Plus we can get my levels under control hopefully with not much treatment. I am hoping as they get older, my little brothers will also get tested so that if by chance they defy odds as well, they can be as lucky as me.
And if I haven't said it before - Thank you Dad for all the wonderful genes!!! Ha ha just kidding, I love you!
Well last month when running some blood panels with my doctor, my iron came back high. So she sent me to a blood specialist where he ran MORE blood panels along with a genetic test for haemochromatosis and it came back positive. Yay me! I defy odds!
Now it is a very easy disorder to handle, especially if caught early enough. It is basically when your body absorbs to much iron in your blood and does not filter it out correctly. The excess iron and eventually build up in your organs, causing some major problems. In order to correct the iron levels you have to do phlebotomy's. So basically they have you do some blood draws until the excess iron is out of the blood. Then you just have to go back every so often to maintain your levels.
My levels were fairly low. In a normal person the blood saturation percentage is between 15 - 50 %. Mine was 65%. They also have a ferritin serum levels of no more than 50 and mine was at 56. When my dad was diagnosed, his levels were over 100. So for now I'll have to go in and do 1 phlebotomy, then go in a month later to re-test my levels and take it from there!
In a way I am very lucky. We caught it extremely early so the chance of me having any liver damage (the first place iron stores up) is small. Plus we can get my levels under control hopefully with not much treatment. I am hoping as they get older, my little brothers will also get tested so that if by chance they defy odds as well, they can be as lucky as me.
And if I haven't said it before - Thank you Dad for all the wonderful genes!!! Ha ha just kidding, I love you!
Subscribe to:
Posts (Atom)
