Patient story

Joyce ImanJoyce Iman

My Amazing Race

I was a caregiver before I was a patient and my caregiver was a patient before he was a caregiver which makes us both a patient and a caregiver simultaneously! My husband was diagnosed as bipolar about 13 years ago so chronic illness was not new to me. When I was diagnosed with pulmonary hypertension (PH) I didn’t ask the common question “why me?” I’d already been down that road and knew the answer was simply “because that’s life.” Life happens to all of us and we each have to decide what we will do with it. I choose to be a winner. I’d like to share with you some of my strategies for coming out on top.

My story starts in January of 2004. Over the last several years I gradually had more difficulty with walking up hills, stairs and lifting. I talked to my doctor in January ‘04 and got the traditional answer. He chuckled and said I was out of shape and needed to lose weight. He was partly right! Being the obedient compliant person that I am, I immediately found a walking buddy and started walking at the mall. One of my strategies is to be compliant with what the medical professionals say to do. I gain peace of mind when I know I have done everything within my power to get better.

I was not able to walk as fast as I thought I should. He again saw no concern. After walking 3 times a week for 9 months my body started protesting. Chest pain and dizziness symptoms started. This got his attention and he ordered tests. It was obvious something was wrong but being the staunch optimist that I am, I was sure it could be figured out and fixed. I was put on oxygen November 11, 2004. Little did I know then that this was the first of many life-style adjustments. I thought, “Hmm, oxygen, that sounds pretty serious. I don’t have any friends or co-workers walking around with oxygen.” I just couldn’t imagine having anything serious, so I felt this was a temporary annoyance until the problem could be found and fixed. I took this in stride, did what I was told and kept on with my busy life as best I could.

Joyce Iman's husband I continued to have chest pains off and on and they scheduled a cardiac catheterization for December 21, 2004. I was admitted to St. Mary’s Hospital in Jefferson City, Missouri. After the cardiac cath and an open lung biopsy I was diagnosed with scleroderma lung disease and secondary pulmonary hypertension.

God’s presence was so strong while I was in the hospital. I never felt alone. I had to work through the news of my diagnosis and find a place to put it in my heart and mind. I remember feeling like my life was never going to be the same: no work, new medicines, side effects, etc. My doctor told me that 2005 was going to be a rough year. He was right! I felt like I was standing at the edge of a big chasm. I had to go forward but I had no idea what life was going to be like. I was standing at the edge of a cliff in the dark. On my side of the cliff there was fear, anxiety, an unknown future, doubt and panic. God was on the other side of the chasm offering peace, hope, comfort, strength and understanding but the space between was dark and I couldn’t see across. I remember in my mind, taking a step off of the cliff into the darkness and landing in the loving arms of God. That was my lesson in faith.

The staff at St. Mary’s handled my stay in a professional and pleasant manner. They were supportive and yet honest about the conditions of my disease. I told the doctor who broke the news that I was always preaching to my staff at work about having a positive attitude. Now I would have to follow my own advice even under difficult circumstances. I was discharged on Christmas Eve still in shock and wondering what life would bring.

I am amazed at the power this disease had to change my life. I had to quit my job and apply for disability. My first year of treatment included steroids and chemo for the scleroderma, and Tracleer and sub-cutaneous Remodulin for the PH. Not a fun time. I immediately saw that it could be really easy to focus on just me. I made a promise to do something for someone else every week. It may be a gift, food or just a card but I have reached out in some way every week since I’ve been diagnosed. This has been such a blessing to me as I find myself looking for someone else who needs cheering up or is going through a rough patch. I’ve learned that there are others worse off than me and I’m thankful for what I have and what I can do.

With all the meds we tried I still got worse and was put on IV Flolan in March 06. In May I wasn’t much better. My doc said if I wasn’t better when I came back in August he would refer me for transplant evaluation. I needed to lose weight and he told me I would feel better if I just lost weight. I got really serious about the weight loss and finally started getting better. Oh my, what an experience to finally have healthy energy and to look better than I have in years. I’ve lost over 40 pounds and will lose another 25. The combination of weight loss and Flolan has finally made an impact on the progression of this disease. The wonderful doctors and dedicated staff at Barnes Hospital in St. Louis were very happy for me and encouraged my continued efforts to lose weight. I’m looking forward to improving in the next year and feel there are new possibilities before me.

I’d like to encourage others to think positive, give it your best shot and ask for help and encouragement when you need it. Life is better when shared with friends, and life with PH is better with support and encouragement. A Pulmonary hypertension support group is just getting started in our city. Find and join a support group if you can. My husband and family, friends at church, the office and the community have kept me going throughout my illness. My husband and I struggle daily with our dual roles of patient and caregiver. Sometimes it feels as if this amazing race is wearing us out but we know that God’s amazing grace will get us through.

© 2006 Joyce Iman


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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.