Treatment & Management
Patient Compliance
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Patient compliance is crucial to successful treatment.
Most patients tolerate phlebotomy treatment well. For the majority of
patients, compliance with phlebotomy treatment is related to
the:
- Patient's understanding of the importance of lifetime treatment.
- Skill of the phlebotomist.
- Patient's confidence in the clinician.
Patient complaints related to phlebotomy treatment include:
- Fatigue as the most commonly reported problem.
- Discomfort or other problems from needle puncture.
- Tediousness of treatment.
- Concern that overbleeding may lead to anemia.
- Blood disposal as opposed to transfusion.
(EASL 2000)
Encourage patients to:
- Drink fluids before and after treatment.
- Avoid vigorous physical activity for 24 hours after treatment.
- Continue phlebotomy treatments.
Download a print-friendly
"Phlebotomy Information for Patients with Hemochromatosis."
(PDF–61K)
Phlebotomy is the most simple, inexpensive, and effective treatment
for hemochromatosis. There is no evidence that hemochromatosis can be
treated by diet alone. However, many patients are concerned about their diet
as an adjunct to phlebotomy.
Although studies are inconclusive about the dietary factors associated
with high iron stores (Fleming DJ 2002; Garry PJ 2000), the following general diet modifications are
suggested for hemochromatosis patients: (Barton JC, 2000; CDC Expert Panel on
Hemochromatosis, 2000 and 2002)
- Avoid iron supplements.
- Read the label of multivitamins to make sure they do not contain iron.
- Limit vitamin C supplementation to 500 mg/day. Vitamin C speeds up
intestinal iron absorption. Eating natural foods that contain vitamin C is
fine.
- Avoid eating raw shellfish. Hemochromatosis patients are susceptible
to infections with Vibrio vulnificus and Salmonella enteriditis; raw
shellfish can contain these bacteria.
- Avoid more than moderate alcohol consumption, one drink per day for
females, no more than two per day for males. Patients with liver damage
should avoid alcohol.
A dietitian who understands hemochromatosis can help formulate an
effective diet plan if the patient has complex dietary requirements.
Compared to the importance of phlebotomy in managing iron overload,
dietary factors probably play a minor role.
Download a print-friendly "Diet information for patients with hemochromatosis."
(PDF–59K)
Patients should be informed that blood collected during phlebotomy
treatment is usually safe for transfusion and is an untapped resource for
augmenting the U.S. blood shortage.
Myth: Blood from a patient with hemochromatosis or iron overload
is iron rich.
Fact: One unit of blood contains about 200 mg iron, the same as blood
from any other person. Excess iron is stored in an individual's organs, not
in the blood supply.
Myth: Blood from a patient with hemochromatosis or iron overload
is unsafe.
Fact: In 1999, the Food and Drug Administration (FDA) announced that
blood from patients with hemochromatosis and iron overload (who pass the
standard donation screening interview) is safe to use, but a blood donation
facility must meet the following criteria: the blood collection center may
not charge for therapeutic phlebotomy, and the blood center must apply to
FDA for exemption from existing regulations. As part of that exemption, the
blood center must collect and submit specified data to FDA. FDA will
consider exemption applications case by case. Patient questions about blood donation
can be referred to the Iron Disorders Institute.
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