My Hemochromatosis Experience
I have a question for all of my readers. How often do you go to see your doctor for regular checkups? I go about every 3 months or so. One day my blood results came in and I was told that I have high amounts of iron (overload) in my body. So I scheduled for another visit to see my doctor. What is this disorder I have and what is it called?
I was later diagnosed of having "Hemochromatosis". I was a bit startled not knowing the seriousness of this disease. What is that I wondered. Further testing was needed to find out more about my current condition. So I went in for a biopsy for my liver. When doing a biopsy, they remove a tiny piece of your liver and examine it under a microscope. This way they can see how much iron content there is and to see if your liver is damaged or to what degree. My test results came out normal.
Here I will tell you basically about the disease and what is involved as a patient being treated with this disease.
* "Image courtesy of [gameanna] / FreeDigitalPhotos.net".
A Silent Killer
The problem with this disease is that of having too much iron stored in a person's body.
When we have too much iron, it basically begins to accumulate and starts the damage process to major organs and tissues in a person's body eventually leading to fatality. This iron buildup specifically attacks the liver, heart, and pancreas.
So how does one get this disease?
One way is when both parents have the mutation of the faulty HFE gene called C282Y. A person born with 2 copies of it would most likely develop Hemocromatosis. This results in one having the inability of regulating the amount of iron absorbed in their bodies from their food intake or consumption. Hemochromatosis is found to be an inherited disease which mostly affects Caucasians of Northern European descent. These ones fall under the Primary Hemocromatosis category.
So why do I have it?
I have taken a blood test recently and have found out that I don't have the gene that causes Hemocromatosis. I fall in the Secondary Hemocromatosis which is caused by other health disorders such as anemia and also alcoholism. Yes, it is not just a hereditary disease, but different factors also do play a role when it comes to this and a person's health.
The Silent Killer !
Helpful Books for Hemochromatosis Patients
All you need to know to help cope with the disease.
How to Diagnosis this Disease
Hemochromatosis is rare and many doctors may not think to test for it. The disease is not often diagnosed or treated and that is why this can be a scary disease. Many doctors who you go to may check for general things such as liver disease, heart disease, or diabetes. But they may not know if you might have a problem with the high iron overload problem that causes hemochromatosis. So it's good to get a regular routine checkup as always in general just in case.
This is how they found out I have it. Next time you do a blood test you might want to ask your doctor to check and do a transferrin saturation test. This test tells the doctor how much iron is bound to the protein that carries iron in the blood. Any Ferritin levels higher than 45 percent are considered too high. If it is too high, they may do a liver biopsy. Most likely though you probably do not have it or fall in any risk of getting this disease.
My Treatment for this Disease
Back then when I was first diagnosed in 2006 (having a ferritin level of 1,307), I then had to lower that amount to 50 and below. The process of treating this disease is called phlebotomy in which they draw some blood out of you as they do at the blood banks when people donate their blood.
I was sent into another room and I found myself surrounded by cancer patients ! It was like a wakeup call. They were all undergoing chemotherapy. This sort of gave me a what's next for me thought. It sort of blew my mind. But I am fortunate to not be in that situation yet and hope ever not to. An uncomfortable feeling came over me.
After turning in my medical records to the nurse, she took me to an empty chair to sit in. I sat down and she asked me if I wanted to take a shot first to help numb the pain before she draws blood from my vein. Being my first experience, I took the shot. She then placed a bottle on the arm rest right next to me and she took out the the biggest needle I ever saw ! It was quite thick as well. After applying the rubbing alcohol she then started to lightly slap on my arm to where she might be able to find a vein. It was a game of hide and seek, not much fun for me. She finally found one and then slightly jammed it into my arm. Sometimes the vein is elusive and several attempts has to be made. But finally it was in and she connected the plastic tube like thing into the huge needle that follows into the bottle on the other end where the blood flows into. But OH MY! Being that I guess I had so much iron or something... it flowed very slowly and slushy like the drink. Yes !!! the Icee drink that you can buy at 7 eleven. Dripping little drops and slushy thickness.
After about 30 minutes they got out a pint out of me. It doesn't always take that long. Sometimes my blood flow nowadays only takes about 10- 15 minutes. They then have you rest for a bit and then take your blood pressure. They take them while you're sitting down and then a little while later they take it while you are standing up. If you don't feel dizzy and your blood pressure is good, then you are allowed to leave or rest a bit. I do phlebotomy about every 3 months now. As I get better I may go less in a year. It all depends on your iron level situation. Today my ferritin level is at 32 which is good. It should be 50 and below. Today it is the year 2013, and this has been my experience.
My Own Phlebotomy Treatment
My Blood Collection...The End Result
How Does This Disease Affects You?
Do you or know anyone with hemochromatosis
Medical Help Video
A Cookbook for Hemochromatosis Patients
Maintain a Healthy Diet with the disease.
What is Neonatal Hemochromatosis
My heart goes out to Mrs. Diana Vasco... who's newly born son had passed away and was later diagnosed with having Neonatal Hemochromatosis.
This was my first time I have heard of this disease. So I had to look this one up.
Today, researchers are finding a way to screen pregnant women and help detect unsuspecting NH mothers before they give birth to a severely ill NH baby. In some
cases a liver transplant or the antioxidant IV drip treatment have been used.
Here are more information about Neonatal Hemochromatosis.