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Long-Term Monitoring and Life with HHT

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Managing Hereditary Hemorrhagic Telangiectasia (HHT) requires lifelong surveillance and specific safety precautions. Key steps include regular lung and blood screenings, using IV air filters during hospitalizations, taking antibiotics before dental work, and daily nasal care to prevent bleeds.

Key Takeaways

  • • Lifelong surveillance with routine scans of the lungs, brain, and blood is essential to catch silent changes early.
  • • HHT patients must take antibiotics before dental work to prevent dangerous brain infections, unless lung AVMs have been definitively ruled out.
  • • All IV lines during hospitalizations or surgeries must be equipped with an air-line filter to prevent stroke.
  • • Daily use of nasal lubricants can protect the nasal lining and help prevent frequent bleeding.
  • • Women with HHT require specialized screening for lung AVMs before or early in pregnancy to prevent life-threatening complications.

Living with HHT is a marathon, not a sprint. Because the condition is lifelong and symptoms can change over time, staying healthy depends on two things: a proactive surveillance schedule to catch “silent” changes and daily habits that protect your fragile blood vessels [1][2].

Your Long-Term Surveillance Schedule

Screening intervals can vary based on your specific genetic mutation (HHT1 vs. HHT2) and what your previous scans showed. However, most experts follow these general guidelines [1][3]:

Organ Primary Test General Frequency
Lungs Bubble Study (Echocardiogram) or Chest CT Every 5–10 years (or more often if AVMs were found) [1][3]
Brain Brain MRI (typically without contrast, using specialized sequences like SWI) At the time of diagnosis, regardless of age (including infants and children) [1][3]
Liver Liver Ultrasound or CT Usually only if blood work or symptoms suggest heart or liver strain [4][5]
Blood CBC & Ferritin (Iron) Every 6–12 months (more often if you have heavy bleeding) [6][7]

It is normal to feel “scan anxiety” before these tests. Remember that finding a change early is the best way to prevent a crisis [8].

Three Essential Safety Precautions

Because of how blood bypasses the “filters” in your lungs, there are three specific situations where you must take extra care:

  1. Dental Work & Antibiotics: All HHT patients must take antibiotic prophylaxis before dental work unless a recent screening has definitively proven they do not have lung AVMs. This prevents mouth bacteria from traveling through a lung shunt directly to the brain, where it could cause an infection (abscess) [8][9].
  2. IV Air Filters: If you are hospitalized or having surgery, all IV lines should have an air-line filter [10][11]. Because hospital staff may be unfamiliar with HHT, you should explicitly wear a medical alert bracelet and carry a printed HHT safety card (from organizations like Cure HHT) to hand to your care team [8].
  3. Scuba Diving: Diving may be permissible only if a specialized HHT center has recently and definitively ruled out pulmonary AVMs, though avoidance remains the safest general rule [1]. The pressure changes can cause nitrogen bubbles to form in the blood, which can bypass the lung filter and cause a stroke [1].

Daily Management & Quality of Life

Managing HHT on a day-to-day basis focuses on reducing the “burden” of the disease:

  • Preventing Bleeds: Use nasal lubricants (saline gels or antibiotic ointments) every morning and night to keep the nasal lining from drying out and cracking [8][3].
  • Managing Fatigue: Chronic iron loss is the main cause of exhaustion in HHT. While normal hemoglobin levels are usually 12-15 g/dL or higher, keeping your hemoglobin above 9–10 g/dL is often the absolute minimum safety floor targeted to prevent severe heart strain [12][13].
  • Pregnancy: Because increased blood volume during pregnancy dramatically increases the risk of rupture for unscreened lung AVMs (which can cause fatal pulmonary hemorrhage), women with HHT must be screened for lung AVMs prior to pregnancy or during the first trimester [14][15]. You should be managed by a multidisciplinary team that includes a high-risk OB-GYN [14].
  • Mental Health: Coping with an unpredictable, genetically inheritable disease carries an emotional toll. Seeking therapy or joining support groups through organizations like Cure HHT can help manage the anxiety and guilt that often accompany a genetic diagnosis [8].

By staying consistent with your screenings and daily care, you can take control of HHT rather than letting it control you [2][16].

Frequently Asked Questions

How often do I need screening scans for HHT?
Screening schedules depend on your specific genetic mutation and previous test results. Generally, lung scans are recommended every 5 to 10 years, blood work every 6 to 12 months, and a baseline brain MRI is done at the time of diagnosis.
Why do I need antibiotics before dental work if I have HHT?
In HHT, abnormal blood vessels in the lungs can bypass the body's normal filtering system. Antibiotics prevent mouth bacteria from traveling directly through these abnormal vessels to the brain, where they could cause a serious infection.
Why are IV air filters necessary during surgery or hospital stays?
If you have abnormal blood vessels in your lungs, small air bubbles from an IV line can bypass the lungs' natural filter and travel to the brain, potentially causing a stroke. An IV air-line filter catches these bubbles to prevent this dangerous complication.
Is pregnancy safe for women with HHT?
Pregnancy increases blood volume, which dramatically raises the risk of a lung AVM rupturing. Women with HHT should be screened for lung AVMs before pregnancy or during the first trimester, and should be cared for by a high-risk obstetrician.
How can I manage and prevent daily nosebleeds from HHT?
Applying nasal lubricants, such as saline gels or specific ointments, every morning and night keeps the delicate nasal lining from drying out and cracking. This daily habit is one of the best ways to reduce the frequency of nosebleeds.

Questions for Your Doctor

  • • What is my specific screening schedule for the next five years, and which tests (CT, MRI, bubble study) will I need?
  • • Can you provide me with a formal letter for my dentist explaining why I need antibiotic prophylaxis?
  • • If I need surgery, can you ensure the anesthesia and nursing teams are briefed on the use of air filters for my IV lines?
  • • How can we optimize my iron levels to reduce the fatigue that's affecting my daily life?
  • • If I'm planning to get pregnant, who is the high-risk OB-GYN in our network who has experience with HHT?

Questions for You

  • • How do I manage the 'scan anxiety' I feel before my follow-up tests? Would talking to a counselor or joining a support group help?
  • • Am I consistent with my daily nasal moisturizing routine, or do I only do it when I'm already bleeding?
  • • Do I carry a medical alert card or wear a bracelet that identifies me as having HHT and the need for air filters and antibiotics?

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This page provides educational information about living with and monitoring HHT. It does not replace professional medical advice. Always consult your specialized HHT care team regarding your specific screening schedule and treatment plan.

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