• Home
  • About Us
  • Blog

Pulmonary Hypertension RN

  • What is Pulmonary Hypertension?
    • What is Pulmonary Hypertension?
    • Pulmonary Hypertension Symptoms
    • Types of Pulmonary Hypertension
    • Causes of Pulmonary Hypertension
    • PH vs. PAH
    • Diastolic Heart Failure vs. PAH
    • WHO Group 3 Pulmonary Hypertension, IPF & COPD
    • Pulmonary Veno-Occlusive Disease
    • Hereditary Hemorrhagic Telangiectasia (HHT)
      • Hereditary Hemorrhagic Telangiectasia (HHT) Treatment
    • Functional Classification of Pulmonary Hypertension
    • Congenital Heart Disease
      • Eisenmenger’s Syndrome
      • Update on Management of PAH-CHD
      • Congenital Heart Disease & Sleep Apnea
      • Complex Congenital Heart Disease
      • Atrial Septal Defect and Pulmonary Arterial Hypertension
    • Pediatric Pulmonary Arterial Hypertension
    • Sickle Cell and Pulmonary Hypertension
    • Stimulant Associated Pulmonary Arterial Hypertension
    • Porto-Pulmonary Syndrome
    • Research, Life Expectancy & Prognosis for PH
  • Diagnosing & Monitoring PAH
    • Pulmonary Arterial Hypertension Diagnosis
    • How Am I Doing? Assessing Your PAH.
    • Blood Tests
    • Cardiopulmonary Exercise Test (CPET)
    • CT (Computed Tomography) Scan
    • Echocardiogram: An Overview
    • Echocardiogram: A Detailed Look
    • Pulmonary Function Tests (PFTs)
    • Right Heart Catheterization
    • Six Minute Walk
    • Ventilation Perfusion Scan (VQ Scan)
    • CTEPH
      • CTEPH: WHO Group 4 Pulmonary Hypertension
      • PTE (Pulmonary Thromboendarterectomy) Surgery
      • Adempas used to Treat PAH and CTEPH
  • PAH Treatment
    • Pulmonary Hypertension Centers
    • Pulmonary Hypertension Treatments
    • Continuously Infused Therapies Used to Treat PH
    • Prostanoids for Treatment of PH
    • Adcirca and Revatio Used to Treat Pulmonary Arterial Hypertension (PAH)
    • Adempas used to Treat PAH and CTEPH
    • Tracleer, Letairis, and Opsumit Treatments
    • Oxygen Therapy for Pulmonary Hypertension
    • Salt and Water Restrictions
    • Exercise & PAH
    • Diuretics
    • Blood Thinners
    • Getting the Most Out of PAH Therapy
      • Letairis
      • Opsumit
      • Sildenafil (Revatio)
  • Research
  • FAQ’s
    • Implanted Remodulin Pump, Right Heart Catheterization, PAH & Pregnancy
    • Oral Treatments, Care Centers & Hole in Heart
    • FAQ’s: Altitude, Cold & Allergy Medications
    • FAQ’s: Psoriasis, Idiopathic PAH, Contraceptives & PAH
    • FAQ’s: Causes of Pulmonary Hypertension, Symptom Frequency & Care Centers
    • FAQ: PAH Experts, Pregnancy, Mild PAH & Vacationing
    • FAQ’s: CTEPH, Blood Clots, Corrective Surgery & PAH Care Centers
    • FAQ’s: VQ Scans & PAH Curable?
    • FAQ’s: Mild Pulmonary Hypertension?
    • FAQ’s: Boating, Swimming & Eating with PAH
    • FAQ’s: Borderline Pulmonary Hypertension, Hand Swelling, Children with PAH, Costs

What We Learn From Our Patients

January 20, 2016 By Dr. Jeremy Feldman

Dr. Jeremy FeldmanI recently lost a friend and patient of almost a decade.  Her battle with familial pulmonary hypertension started when she was a young girl and her mother died from the disease.  I met her in her early twenties when she already had severe PAH.  Her brother had been treated for severe PAH for several years prior.

When I first met her, she had a young daughter, the light of her life.  With the help of a supportive family and an aggressive treatment regimen, she improved greatly and experienced overall good health for almost a decade.  She raised her daughter to be a lovely young woman.  In the past year, though, she started declining.  We adjusted her therapies but she continued to decline.   We were able to list her for urgent lung transplantation but her heart failed before we had donor lungs.

As a doctor, I am learning all the time.  My patients teach me how great the human spirit is.  They teach me how the power of positive thinking can propel even very ill patients forward and allow them to make deep and lasting friendships and find joy and satisfaction.  Simply getting out of bed and putting one foot in front of the other may be a challenge.  It may cause shortness of breath, fatigue, lightheadedness.  This particular patient navigated a very difficult road.  Nonetheless, she never complained about her lot in life.  She never sought pity from those around her.  She chose to focus her positive energy on raising her daughter and connecting with those around her.  Despite severe PAH she traveled and lived life to its fullest.  It was an honor and a privilege to care for her for almost a decade.

As a physician that has cared for PAH patients for much of the past two decades, I am reminded that despite our advances PAH remains a deadly disease.  We must redouble our efforts to raise money and awareness.  We must continue to improve our care systems.  Most importantly, we must push forward with basic science, translational and clinical research until we don’t lose any more patients like her to PAH.

Filed Under: Living with PAH

PAH Life Expectancy

PAH Research

Research, Life Expectancy & Prognosis for PH

Major Developments in Pulmonary Hypertension Affecting Prognosis 1.     Approval of

Where to Get Treatment?

CCCs for PAH

Pulmonary Hypertension Centers

Where to get treatment for pulmonary hypertension? Pulmonary arterial hypertension is a

Popular Posts

Researching PH treatments

Scrotal Edema

By Dr. Jeremy Feldman

Swelling of the Scrotum with Pulmonary Arterial Hypertension. We recently received a great question about scrotal edema

PH TEAM

2016 PAH Comprehensive Care Center Update

By Dr. Jeremy Feldman

One of the great challenges in medicine in general and Pulmonary Arterial Hypertension in particular is finding a doctor

good news in pah

 

Disclaimer

Recent Blog Posts

  • In Memoriam:  Greg Ahearn, MD June 16, 2024
  • Sotatercept (Winrevair) Approved! June 1, 2024
  • Disappointing News for Rodatristat Ethyl October 11, 2023

Categories

Archives