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Pulmonary Hypertension Patient and Caregiver Stories

Patient and caregiver stories about pulmonary hypertension provide support, and let others know they are not alone.

Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand the profound agony death presents to friends and loved ones…

Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine…

Brother Alan: Systemic Scleroderma I was diagnosed with Scleroderma three years ago and "too many times ten" doctors later, here I am…

Darlene: Diffuse Scleroderma (New Jersey) Now that I have become more knowledgeable about scleroderma, I feel I can cope with it better…

Debbie G: CREST, Lupus, Interstitial Lung Disease and Pulmonary Hypertension It has been a very long and bumpy road at times but somehow through all the hospital visits and other illnesses I have managed to stay ahead of the game by a step or two…

Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST…

Gaynor: Morphea and Possible Systemic Sclerosis I was diagnosed in 2003 with morphea. It began as a bruise-like patch on my upper right arm…

Gerald: Spouse of Scleroderma Patient She would often comment how she wished they could figure out what was wrong, give her the pill to fix it, and she would feel fine again…

Irja: CREST, Limited Scleroderma I'm a 34-year-old woman from the land of Santa Claus, Finland. Ive had CREST since 1998…

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure. We both started with Raynaud's…

Joyce T: Scleroderma with Pulmonary Hypertension My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it…

Judy Tarro: Diffuse Scleroderma, Sjogren's, Pulmonary Fibrosis and Pulmonary Hypertension The best we can figure, I was diagnosed with diffuse scleroderma in 1956. I am now webmaster of SD World…

Laura Jean: Pulmonary Hypertension/UCTD Two weeks later I was diagnosed with severe pulmonary hypertension and a pulmonary embolism in my right mid lung…

Lori: Surviving Daughter of Father who had Scleroderma We held his hands and told him how much we loved him and watched him take his last breath at 5:50 p.m. on October 6, 2002…

Lynn S: Diffuse Scleroderma and Pulmonary Hypertension No one believed me; I guess because I look healthy. I would always hear, 'You are too young for this!' It is hard for people to understand…

Monica O: Daughter of Mother with CREST It is awful to see how she gets worse day by day…

Patty S: Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband…

Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate…

Sharon: Limited Scleroderma, CREST, Sjögren's and Pulmonary Hypertension Unfortunately it revealed that I now have Secondary Pulmonary Hypertension…

Sheena: Systemic Sclerosis with Watermelon Stomach None of my doctors could understand how all my other complaints went with the watermelon stomach, but I knew they did…

Sara P: CREST Syndrome (Update) I was just diagnosed last week with early stage pulmonary arterial hypertension…

Susie: CREST Syndrome (Update) I was diagnosed with PAH three years ago…

Sparky: Diffuse Scleroderma My pulmonary disease worsened only slightly over the past year. I now face the decision to take cyclophosphamide…

Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's The physician's assistant noticed that my hands went really blue…

Tony B: Systemic Scleroderma with Pulmonary Fibrosis, Pulmonary Hypertension and Raynaud's It has taken me some time to come to terms with this disease…

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