breathethelove
My blogs
Blogs I follow
- 5 Acres & A Dream
- Breathe In, Breathe Out. Repeat. Stay Hopeful.
- Cake Wrecks
- Enjoying Toledo
- Focused on Fortitude
- Living On O2 for Life
- something made different
- stretching beyond
- The Beached Scientist
- The Tip Of The Iceberg
| Introduction | I am a mom in my 30s who has been living with pulmonary hypertension since 2012. I have three school-aged kids and am a former scientist and midwife. I am suspected of having pulmonary capillary hemangiomatosis (PCH) which is a very rare cause of pulmonary hypertension (PH). My lung scans suggest I have PCH, but it is very difficult to definitively diagnose PCH without a risky lung biopsy or an autopsy of the lungs. There is no additional treatment either so no real benefit in confirming the diagnosis. My PH was very advanced and I was diagnosed in the worst clinical stage. So far, my medications (IV Flolan/Veletri and Revatio) have stabilized my condition and I hope to continue in this state for as long as possible. The only "cure" for PCH/PH is a double lung transplant. Of course, lung transplant is very serious and is not an easy solution. Rather it is exchanging one set of problems for another. |
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| Interests | Gardening, raising children & chickens & dogs, natural childbirth, microbiology, reading, knitting, journaling, and |