OUR JOURNEYS

Patient story

Michelle Snyder

I am at the very beginning of my "Journey with PH.” My story is unusual in that my PH was discovered quite by accident. Since the age of 33, I had found several lumps in my breasts--two of which were removed through excisional biopsy. They were deemed precancerous and I was put on Tamoxifen under the care of a wonderful oncologist. After I had been with her a year, she said she wanted to do a breast MRI that we could used as a baseline when I came off the Tamoxifen. The MRI showed what appeared to be a pericardial cyst next to my heart. My doctor ordered a follow-up echocardiogram to get a better look. The cyst was fine and did not pose a threat. However, the echo showed my mean pulmonary arterial pressure to be greater than 40 and that I had mild tricuspid regurgitation. None of that seemed too worrysome to me. II was glad the cyst turned out to be nothing. But my oncologist suggested I see a cardiologist to discuss the findings.

My appointments with my cardiologist have left something to be desired. I do not feel as if I am getting all the answers to my questions. He has conducted an EKG, and exercise EKG and he did a transesophageal echo (TEE) to rule out any structural causes for my PH. He has since diagnosed me with IPAH. He has not ordered an RHC yet, which bothers me. I have an appointment with my PCP tomorrow to discuss a referral to a pulmonary doctor who specializes in PH.

As far as classification of PH, I am somewhere between Class I and Class II. Most days I can do my daily activities without becoming too tired. I have had to scale back on yard work, heavy lifting and other strenuous activities. I have found that doing those wipes me out for several days. Days like today, though, I get tired and SOB just walking.

So begins my journey. I do not look forward to the myriad of medications, the maze of insurance forms or the daily struggles that will certainly come my way. I have, however, come to terms with my diagnosis and know that if this is what I am given to deal with, then I will deal with it to the best of my ability—"I will call upon the Lord who is worth to be praised." My faith and my family will sustain me, now and throughout my journey.

Blessings,
Michelle Snyder

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.