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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Ophthalmology

Building Your Care Team & First Visit Prep

At a Glance

CMV retinitis care works best when a retina ophthalmologist, infectious disease specialist, and HIV or transplant team share information. Before the first visit, bring immune-status, CMV blood-test, kidney-function, blood-count, and medication records.

Managing Cytomegalovirus (CMV) retinitis is a team effort. Because the virus affects both your eyes and your overall immune system, you will need a group of specialists who “speak the same language” and share information quickly [1][2]. Being the “manager” of your own health records can ensure that no critical detail—like a drop in your kidney function or a change in your immune status—falls through the cracks.

Your Core Care Team

A well-coordinated team typically includes these essential specialists:

  1. The Retina Specialist (Ophthalmologist): This is a surgeon who specializes in the back of the eye [1]. An ophthalmologist diagnoses lesion activity from characteristic retinal findings [3]. They will perform your dilated exams, take retinal photos, and administer eye injections if needed [1][4].
  2. The Infectious Disease (ID) Specialist: They often manage the “systemic” (whole-body) antiviral medications like valganciclovir [2]. They monitor your blood work for side effects and assess if extraocular disease requires organ-specific clinical assessment [2][5].
  3. The Primary Condition Team: Depending on your situation, this is either your HIV/AIDS specialist or your Transplant team (oncology, hepatology, or nephrology) [6][7]. Their job is to manage your immune recovery, which is the ultimate key to stopping the virus long-term [7]. You must never reduce immunosuppressants without the transplant team.
  4. Pharmacist and Case Manager/Social Worker: Optional but critical members who can help manage medication interactions, access to valganciclovir, transportation for urgent visits, and adherence.

Preparing for Your First Visit

Your eye specialist needs more than just an eye exam to treat you safely. When you arrive for your first appointment, try to have the following data ready (printed or available in an app):

  • Recent Relevant Immune and Transplant Labs: For HIV patients, your most recent CD4 count [1][8]. For transplant patients, know your transplant type, donor/recipient CMV status, prophylaxis, and current immunosuppressants [9][10].
  • CMV Viral Load: Any recent blood tests (PCR) showing the amount of CMV in your bloodstream [8][11].
  • Organ Function: Your latest Creatinine and eGFR levels (kidney function) and a Complete Blood Count (CBC) [12][13]. Many CMV drugs are cleared by the kidneys and can affect your white blood cell counts, so the doctor must know your baseline [13][14].
  • Medication List: A full list of your current HIV meds (ART), transplant-rejection drugs, allergies, over-the-counter drugs, and pharmacy contact information [6][7].

Ensuring Coordination

The biggest risk in complex care is “siloed” treatment—where one doctor doesn’t know what the other is doing. You can help bridge this gap by asking specific coordination questions:

  • “Who should I call first if my vision changes—your office or my ID doctor?” [15]
  • “Will you be sending your exam notes and retinal photos to my transplant/HIV team after every visit?” [16]
  • “If we need to adjust my immunosuppressants to help my eyes heal, who will make that final decision?” [7]

The Role of Imaging

Ask your specialist if they use Ultra-Widefield (UWF) Photography [17]. Standard eye photos only capture the center of the retina, but CMV often starts at the very edges [16][15]. UWF cameras capture a wide angle, providing a “map” that helps all your doctors see where the infection is and how it is responding to treatment [17][18]. Having these photos shared between your specialists is one of the best ways to ensure everyone is on the same page [16].

Specialist Primary Responsibility Key Shared Data
Retina Eye exams, injections, surgery Retinal photos, lesion activity
Infectious Disease Antiviral prescriptions CMV viral load, drug toxicities
Transplant/HIV Immune system management CD4 counts, rejection status

Common questions in this guide

Which doctors should be on my CMV retinitis care team?
A retina-focused ophthalmologist examines the retina and may give eye injections. An infectious disease specialist often manages systemic antiviral medicine, while an HIV/AIDS specialist or transplant team manages immune recovery and immunosuppressive medicines. A pharmacist or case manager can help with interactions, access, and adherence.
What records should I bring to my first CMV retinitis visit?
Bring your latest CD4 count or transplant details, CMV PCR or viral-load results, creatinine and eGFR, CBC, and a complete medication and allergy list. Include doses of HIV or transplant medicines and your pharmacy’s contact information. These records help the eye specialist plan care safely.
Why do kidney function and blood counts matter during CMV treatment?
Medicines such as valganciclovir are cleared through the kidneys and can lower white blood cell counts. Creatinine, eGFR, and CBC results give clinicians a baseline for safe dosing and monitoring. Your care team may need to respond if kidney function or blood counts change.
What is ultra-widefield photography used for in CMV retinitis?
Ultra-widefield photography takes a broad view of the retina, including areas near the edges that standard photographs may miss. It creates a shared visual record of lesion location and activity so specialists can compare changes over time.
Who decides whether transplant medicines should be changed?
For transplant patients, the transplant team must make decisions about reducing or changing immunosuppressive medicines in coordination with the eye and infectious disease specialists. Do not lower or stop these medicines on your own, because that can put the transplant at risk.
What should I do if my vision suddenly changes?
A sudden change in vision or a curtain-like shadow can require prompt assessment. Ask your ophthalmology office for the after-hours contact plan, and use the urgent or emergency service they recommend rather than waiting for a routine appointment.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who is the specific point of contact in your office if I notice a sudden 'curtain' in my vision after hours?
  2. 2.How do you and my transplant/infectious disease doctor communicate about my kidney function and blood counts?
  3. 3.Are you comfortable using ultra-widefield photography to track my peripheral lesions, or do you rely primarily on manual exams?
  4. 4.What is our plan if my white blood cell count (neutrophils) drops too low while I am on valganciclovir?
  5. 5.Do you have experience managing 'Immune Recovery Uveitis' in patients whose immune systems are getting stronger?

Questions For You

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References

References (18)
  1. 1

    International consensuses and guidelines on diagnosing and managing cytomegalovirus (CMV) retinitis by the Asia-Pacific Vitreo-retina Society (APVRS), the Asia-Pacific Professors of Ophthalmology (AAPPO) and the Asia-Pacific Society of Ocular Inflammation and Infection (APSOII).

    Hwang DK, Ng DSC, Qian Z, et al.

    Asia-Pacific journal of ophthalmology (Philadelphia, Pa.) 2025; (14(5)):100248 doi:10.1016/j.apjo.2025.100248.

    PMID: 41038280
  2. 2

    Management of Ganciclovir Resistant Cytomegalovirus Retinitis in a Solid Organ Transplant Recipient: A Review of Current Evidence and Treatment Approaches.

    Fu L, Santhanakrishnan K, Al-Aloul M, et al.

    Ocular immunology and inflammation 2020; (28(7)):1152-1158 doi:10.1080/09273948.2019.1645188.

    PMID: 31621449
  3. 3

    Classification Criteria for Cytomegalovirus Retinitis.

    American journal of ophthalmology 2021; (228()):245-254 doi:10.1016/j.ajo.2021.03.051.

    PMID: 33845015
  4. 4

    Cytomegalovirus Retinitis in a Human Immunodeficiency Virus-negative Cohort: Long-term Management and Complications.

    Jeon S, Lee WK

    Ocular immunology and inflammation 2015; (23(5)):392-9 doi:10.3109/09273948.2014.985385.

    PMID: 25760914
  5. 5

    Prognostic factors of cytomegalovirus retinitis after hematopoietic stem cell transplantation.

    Kim JY, Hong SY, Park WK, et al.

    PloS one 2020; (15(9)):e0238257 doi:10.1371/journal.pone.0238257.

    PMID: 32877457
  6. 6

    Active cytomegalovirus retinitis after the start of antiretroviral therapy.

    Heiden D, Tun N, Smithuis FN, et al.

    The British journal of ophthalmology 2019; (103(2)):157-160 doi:10.1136/bjophthalmol-2018-312406.

    PMID: 30196272
  7. 7

    Oral antiviral drugs for treatment of cytomegalovirus in transplant recipients.

    Razonable RR

    Clinical microbiology and infection : the official publication of the European Society of Clinical Microbiology and Infectious Diseases 2023; (29(9)):1144-1149 doi:10.1016/j.cmi.2023.03.020.

    PMID: 36963566
  8. 8

    Beyond CD4: Posterior segment findings and virologic-immunologic predictors in highly active antiretroviral therapy-naïve HIV patients.

    Hayat SC, Yilmaz YC, Gunduz A, et al.

    Indian journal of ophthalmology 2026; (74(6)):901-907 doi:10.4103/IJO.IJO_1957_25.

    PMID: 42200741
  9. 9

    The Potential Association of Delayed T Lymphocyte Reconstitution Within Six Months Post-Transplantation With the Risk of Cytomegalovirus Retinitis in Severe Aplastic Anemia Recipients.

    Mo W, Chen X, Zhang X, et al.

    Frontiers in cellular and infection microbiology 2022; (12()):900154 doi:10.3389/fcimb.2022.900154.

    PMID: 35694535
  10. 10

    Clinical features of cytomegalovirus retinitis after solid organ transplantation versus hematopoietic stem cell transplantation.

    Son G, Lee JY, Kim JG, Kim YJ

    Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie 2021; (259(3)):585-591 doi:10.1007/s00417-020-04871-w.

    PMID: 32761472
  11. 11

    Clinical manifestations and immune markers of non-HIV-related CMV retinitis.

    Passarin O, Hoogewoud F, Manuel O, Guex-Crosier Y

    BMC infectious diseases 2024; (24(1)):787 doi:10.1186/s12879-024-09653-x.

    PMID: 39107686
  12. 12

    Real-World Effectiveness and Renal Safety of Foscarnet for CMV Reactivation After Allogeneic Hematopoietic Stem Cell Transplantation.

    Kaynar L, Ali IA, Alrais M, et al.

    Journal of clinical medicine 2026; (15(16)) doi:10.3390/jcm15166365.

    PMID: 42652768
  13. 13

    Treatment for First Cytomegalovirus Infection Post-Hematopoietic Cell Transplant in the AURORA Trial: A Multicenter, Double-Blind, Randomized, Phase 3 Trial Comparing Maribavir With Valganciclovir.

    Papanicolaou GA, Avery RK, Cordonnier C, et al.

    Clinical infectious diseases : an official publication of the Infectious Diseases Society of America 2024; (78(3)):562-572 doi:10.1093/cid/ciad709.

    PMID: 38036487
  14. 14

    Navigating Cytomegalovirus Retinitis in a Patient With Myelodysplastic Syndromes Transitioning to Acute Myeloid Leukemia Post Transplant: A Case Study.

    Benyahia SA, Kahlon S, Paul S, et al.

    Cureus 2025; (17(2)):e78491 doi:10.7759/cureus.78491.

    PMID: 40051959
  15. 15

    "For your eyes only": ophthalmic complications following lung transplantation.

    Dhal U, Raju S, Singh AD, Mehta AC

    Journal of thoracic disease 2018; (10(11)):6285-6297 doi:10.21037/jtd.2018.09.156.

    PMID: 30622804
  16. 16

    Evidence and Consensus-Based Imaging Guidelines in Cytomegalovirus Retinitis: Multimodal Imaging in Uveitis (MUV) Task Force - Report 15.

    Leal I, Agarwal A, Berkenstock M, et al.

    Ophthalmology. Retina 2026; doi:10.1016/j.oret.2026.05.004.

    PMID: 42119730
  17. 17

    Ultra-widefield retinal imaging for early detection of asymptomatic cytomegalovirus retinitis after allogeneic hematopoietic stem cell transplantation: a prospective pilot feasibility study.

    Moll-Udina A, Pedraza A, Miguel-Escuder L, et al.

    Journal of ophthalmic inflammation and infection 2026; (16(1)).

    PMID: 42047905
  18. 18

    Ultra-Widefield Fundus Autofluorescence in Cytomegalovirus Retinitis.

    Tadepalli S, Bajgai P, Dogra M, et al.

    Ocular immunology and inflammation 2020; (28(3)):446-452 doi:10.1080/09273948.2019.1595671.

    PMID: 31136217

This page explains how to organize a CMV retinitis care team and prepare for appointments for educational purposes only; it does not replace medical advice. Contact your eye, infectious disease, HIV, or transplant team promptly about vision changes or medication concerns.

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