A Letter from the Board of Directors: Lenise Whitley
My name is Lenise Whitley and I have pulmonary hypertension (PH) associated with left heart failure. After three years of testing and being told nothing was wrong, except I had to lose weight, I found another cardiologist. She did a left and right heart catheterization, something my previous doctor never did, and found the PH on the left side of my heart.
I honestly had never heard of PH or pulmonary arterial hypertension (PAH). I thought I just needed another inhaler like the one I used to manage my asthma. Two different doctors told me that I was lucky I had the “easy PH” and that PAH was so much worse. I remember thinking about that statement as I was admitted to Mount Sinai Hospital NYC with fluid overload.
I was diagnosed in 2012 and was on oxygen by 2013. I had to retire in 2014 because of complications from PH. I loved my job and, didn’t want to retire at 61. Instead I was hauling around oxygen tanks and medical staff were telling me I was lucky it was “only” PH and not PAH.
In 2015 I decided to take charge of my life. I made three major changes. I started with a new doctor, this time a PH specialist. I found out the hard way that pulmonologists may treat pulmonary hypertension, but not all of them are certified specialists in the field. My new doctor sent me to pulmonary rehabilitation and I started seeing a registered dietician nutritionist. These changes were a win-win. My new doctor treated me as a PH patient, and the rehab built up my lung power and conditioned my body. My RD showed me how to eat for life, not just to lose weight and regain it later. I have maintained a weight loss of 105 pounds.
I made up my mind to do more than just sit on my couch and watch the world go by. I started volunteering at my church and became a patient advocate with Team PHenomenal Hope. Before the pandemic I became a tutor and taught adult women to read. I bake cookies and cakes for my neighbors, church members and friends, and I learned how to make bread and French pastries. I discovered little hidden gems in my adopted state of NY, and I am currently attending a Bible Institute as a full time student for the next four years.
I sit on the board of Team PH as a patient advocate, and I am the leader of our virtual support group. I attend events to represent the organization and have made many connections and new friends within the PH world as a result (see some pictures below!). I know I can lean on these people for support when I need it.
I encourage everyone not to let PH/PAH or any disease take over their lives. Make the changes you can, find alternative ways for other things, and what you can’t do, let it go and don’t beat yourself up.
Like many others I have multiple health issues. I jokingly tell people the only organ I have that is disease-free is my kidneys. They laugh but it’s true. There are days I cannot get out of my bed, and I don’t. There are days when I feel like family and friends don’t understand, and they don’t. However, there are many people who do understand. Reach out to them.
I have a deep faith base and rely on it daily. My faith gives me comfort and strength. Live your life the best way you can. Make changes where necessary (you know what they are). Join a support group, you know are always welcome to join Team PHenomenal Hopes Support Group on ZOOM.
Live each day as the gift it is!
One thought on “A Letter from the Board of Directors: Lenise Whitley”
Thank you, Lenise for sharing your experience of diagnosis with us! It really helps us all to learn more and more about what it’s like to have PH.