INTERVIEW WITH PAIN REMINDS ME I’M ALIVE

INTERVIEW WITH PAIN REMINDS ME I’M ALIVE

At what age did you get diagnosed with iron overload / hemochromatosis?

56

At what age did you start feeling symptoms?

53

What were your symptoms?

  • Knuckle pain in fingers
  • Pain in joints like hips or knees
  • Arthritis
  • Abdominal pain
  • Weight gain
  • Weight loss
  • Shortness of breath / difficulty breathing
  • Dizziness
  • Muscle weakness
  • Brain fog
  • Anxiety
  • Depression
  • Heart flutters / abnormal heart rhythm
  • Low sex drive
  • Impotence
  • Diarrhea
  • Bloat
  • Hair loss
  • Shaking / trembling
  • Fatigue / feeling tired
  • Insomnia
  • Abnormal liver enzyme levels
  • Liver problems
  • Ringing in Ears
  • Sleep Apnea
  • Foot and leg cramps/spasms
  • Finger cramps
  • Foot and toe pain
  • Numbness on bottom of feet
  • Big stabbing toe pain
  • Migraines
  • Facial Ticks
  • Eye Fluttering

How frequent were your symptoms? 

Day and night

Did your symptoms affect your daily life, such as your ability to do your job or your relationships?

It affects me relationship-wise because it's kept me from having a new relationship.

How did you discover you had iron overload / hemochromatosis?

High AST / ALT / MCV MCH levels

Got a Ferritin test…Results were 3 times higher than normal. I am at 1,100... the high is 380.

Got an HFE test... confirmed I have two sets of the H63D mutation.

The Celtic Curse... both parents are of Irish and Scottish descent

If you know your test results from when you first got diagnosed, would you be willing to share those numbers so other people can compare?

  • Ferritin - 1,100
  • % Saturation - 37
  • Iron Binding Capacity - 292
  • Iron, Total - 108
  • Alpha-Fetoprotein - 6.7 (High)
  • AFP-L3 - 10.2 (High)

Did you get a genetic test for iron overload? If yes, what were the results of the test?

2 sets of H63D

When you got diagnosed, what was the treatment plan your doctor gave you? Did you make any diet or lifestyle changes?

Phlebotomies 2x per month

MRI ordered to determine iron storage in liver

Limited alcohol

I changed my diet…Gave up breads, pasta, eggs, dairy, sugar, high fructose corn syrup…

How did your family, friends, and peers react when you told them you have iron overload / hemochromatosis?

My Dad has heart disease and pre- cursor diabetes, horrible skin rashes and drinks daily.

Mom had diabetes and skin issues as well.

When I told them about the disease, they wanted to know more.

Did you continue to experience any symptoms after your diagnosis? How do you feel today?

Today, my legs and feet are cramping and I'm unenergetic and tired. But when I lie down, that's when the cramps are the worst.

Do you have any tips or advice for others struggling with iron overload / hemochromatosis?

I'm on a daily regimen and try to stay consistent. I'm not a doctor...but this is what I am doing to manage the disease:

4am - drink 32 oz. of water to give liver a cleanse

7am - drink 32 oz. celery Juice

10am - fresh fruit smoothie w/ blueberries, mango, banana, a handful of cilantro, and a squeeze of honey.

Lunch - a salad with chicken and falafel

Mid Afternoon - eat a whole apple

Dinner- some healthy homemade chicken soup or chicken stir fry

Fun facts:

Born in Laguna Beach, California.

I love music and play piano, guitar and bass, thankfully blessed to be able to play by ear.

I'm in a band that gets together a couple times a month to practice - my favorite time.

I love to cook and now that I've changed my diet, I've really embraced making healthier choices and discovering alternative foods that will heal instead of create more problems for me.