• Rebecca Talkie became a registered member 5 months, 3 weeks ago

    • Hi Rebecca,
      I wanted to welcome you to the PH forums. I am one of the moderators with Colleen Steele. It’s so great to see the forums growing with new members. I can see from your profile that you are a retired nurse and you also have a new diagnosis. I’m sure that it must be scary and overwhelming for you to have this diagnosis especially after working so long in the medical profession. Is PH something that you came across with your patients that you had? I know that personally it was something that was very new to me even though I was living with congenital heart disease my whole life. Know that all of us here on the forums are here to support you in any way we can. Please feel free to reach out any time, post your own topic for discussion, or add comments to topics that have already been started. Looking forward to building connections with you.

      • Thank you for your kind welcome. In 34 years as a cardiac nurse, I can only remember one PH patient. He was starting on a new medication and had to be monitored closely. He was supposed to be in the Cardiovascular Unit but got moved out because of other more severe patients. We were scared to death of him because we had never dealt with that particular medication. We all got through it. Yes, I am dealing with a new diagnosis – I think. In the testing phase right now. I was going to a new pulmonologist who was confused as to why my Pulmonary Function study had gone so far downhill in 4 years. So I had a CT scan of my chest and there it was – an enlarged Pulmonary artery with the words Pulmonary Hypertension. So far I have had a VQ scan which was negative for clots and a Bubble Echocardiogram which was a new one on me. Still waiting for those results. I think my next stop is a Right Heart Cath, something I have never had to my memory. I was born with a Congenital Heart Defect – a Patent Ductus. This was in 1955. It was not fixed until the hospital got a heart lung machine in 1959, made by Dr. Michael DeBakey himself. I was patient #9. At the 50th Anniversary of Cardiac Surgery at the hospital, I was the only child found alive. Doctors kept telling me it was fixed and I shouldn’t worry about it. I had 3 children. I developed asthma courtesy of my Father’s and coworkers smoking habits. I went to a continuing education course on Pulm HTN when I was still working and something the man said bothered me. It was about kids born with congenital heart defects having problems down the road with Pulm HTN. So I asked him after class. He just looked at me and told me to be on the lookout for right sided heart failure even though my defect was called “minor” . So, here I am, increasing shortness of breath and fatigue are my only symptoms. I do get swollen feet, ankles and even legs if I don’t wear my ugly TED stockings but have always been told I have poor circulation, much like my Uncle. But he smoked. I have a life planned. ( Don’t we all ) I am going on a cruise the end of August. Right now, I am floundering in the unknown. I may have been a cardiac/telemetry nurse, but I dealt with older people with heart attacks, renal disease and congestive heart failure ( left sided mostly ) with maybe some pneumonia thrown on top. I was a CHF educator for a short while. I retired because of ongoing back problems. I would like to say that I don’t have this, but isn’t the CT of the chest pretty accurate in finding this? I will check back in and ask more specific questions as time goes on. Thanks again.
          • Rebecca, the CT and Echo are steps towards diagnosis but the right heart cath is the only way to accurately and officially diagnose PH. If PH is diagnosed than you will continue to periodic right heart cath’s to monitor the disease and to assist your doctor with prescribing the proper treatment. Here is brief article that explains further. http://pulmonaryhypertensionrn.com/right-heart-catheterization-rhc/

            I know when PH seemed apparent in my son’s CT and Echo his doctor didn’t want to officially diagnosis him until he viewed the results of a cath. You have already been through so much in your life but I’m sure you are feeling even more overwhelmed now. Our forums are followed by very supportive PH patients, caregivers and medical professionals whose personal stories may help you. Feel comfortable asking questions and making comments.

            As a nurse you are probably already aware that if you are diagnosed, it is best if you see a PH specialist to follow the disease closely. You are in my thoughts. Update us when you can.

      • Welcome Rebecca to the PH Forums! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany, know if you have any challenges using our site. I look forward to learning more about your personal journey.

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