Looking for the Highs: Lorrie Martin
When I was first diagnosed with PAH in May of 2020, I couldn’t have been more surprised. My family doctor saw me because I had trouble breathing and my oxygen levels were at 70-75%. He referred me to a local cardiologist the next day and she was so concerned after the echocardiogram I was referred to a bigger clinic at the University of Iowa Hospital. She said I needed a right heart catheterization.
I was terrified all that night and could not sleep. Of course, I hopped right on the internet and started reading and torturing myself with all the negative information about life expectancies and surgeries. I have learned after these nine months not to rely so much on what you can read on the internet.
My son Zak had gone through testicular cancer when he was 21, so we know the hospital well. He is 33 now and has been in remission all this time. He and I have always been doctor appointment buddies. So, Zak drove me to the hospital the next day, where a battery of tests were done, our usuals, echo, etc., and I was put in a room to speak to the head cardiologist, Dr. Cadaret. She explained to me what was going on and I was gobsmacked! What, I was in heart failure? I’m dying? What’s going on? I was in total shock. I asked what we would do and she said, “Well, we are admitting you to the hospital right now.” An hour later, I was in a bed.
Her assistant came in to visit me and she told me something I keep repeating to myself because I need to remember, “This diagnosis is going to be a forever journey. Think of it as a roller coaster. You will have highs and lows.”
I had a port put in place that supplies me with remodulin 24/7. I also take nine other drugs, two inhalers, and often times I use an oxygenator. It has been a lot to process. Just mixing the remodulin and maintaining and ordering all my monthly supplies takes a lot of organization. I have been caught unaware while traveling and the spare pump in my pack stopped working. I had to get an emergency one from a pharmacist on Thanksgiving day.
I’ve learned that the teams and people you work with are critical, and I have been extremely lucky on this journey to have caring, helpful partners. I have found it difficult to “unload” on family when I don’t feel well. They are so understanding, but rarely is there anyone to get into my real nitty gritty feelings.
Often, we can focus on the lows. I am trying now to find the highs:
1. PAH has made me focus on my diet and eating right.
2. On the many Facebook pages, I am able to offer encouragement to others on this journey.
3. I have lost 55 pounds.
I will continue to look for 4, 5 and 6!
Lorrie received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.