Jenny's Story: PH and Lupus, Fibromyalgia and Sjogren's syndrome

In August 2010, Jenny Klick of Winter Springs, Florida found herself out of breath – she couldn’t even walk to the bathroom. She attributed her symptoms to smoking and her limited airway disease. However, she wasn’t quite sure and went to the doctor anyways. Her doctor ruled out upper GI problems and sent her to a pulmonologist who concluded she just wasn’t taking her Advair correctly. Still out of breath, Jenny goes to a cardiologist. He performed an echocardiogram where he determined Jenny may have pulmonary hypertension. Like too many patients, she was already in respiratory failure and immediately went to the emergency room. 

In order to confirm pulmonary hypertension, the cardiologist performed a right heart catheterization. However, Jenny’s doctor could not complete the procedure because her pressure was too high. Nonetheless, Jenny finally had a diagnosis – Class IV PAH due to the lupus that never really caused her too many problems. 

Though the diagnosing cardiologist noted she would eventually pass away from the disease, he didn’t faze her. Having several other chronic illness including lupus, fibromyalgia and Sjogren’s syndrome, Jenny understood she could not be cured but knew she could continue life with the positive outlook she’s always had. Once Jenny was placed on Revatio and Tracleer, she was released from the hospital and began to feel a lot better and continued life as usual.  

A few weeks later, Jenny made an appointment with Dr. Tarver, a well-known PH specialist in Orlando. Like many patients, Tracleer was beginning to affect her liver and began taking Tyvaso instead. Jenny began feeling better and stopped thinking about her new diagnosis. As Jenny describes, living with PH became her “new normal.”

It wasn’t until Jenny came across an issue of Pathlight did she realize how devastating the disease could be. Soon after, she attended her first support group where she met other patients and caregivers. Months later, she became a support group co-leader and is now in charge of scheduling guest speakers for the group. Jenny loves her role citing “everyone in the PH world is eager to lend a hand and tell their story.” Jenny’s involvement in the PH community extends to her participation in PHA’s 10^th International PH Conference and Scientific Session last summer. There, she met more supportive individuals who directed her to PH Family, a community-operated Facebook page. She remains active with the community on Facebook, PH Central, and goes to the PHA website frequently. Jenny is also a Tyvaso Peer Mentor for United Therapeutics’ Peer Network.

Though Jenny has been fortunate throughout her journey with PH, in January she was hospitalized for a week with a serious respiratory infection. Since then, she reports feeling like “a typical PH patient” as simple task like going up stairs is now very difficult for her. Her doctor concluded her limited airway disease decreased the effectiveness of Tyvaso so her dosage was increased from 12 puffs to 15 puffs though the average dose is 9 puffs. However, her heart rate is still out of control and hopes to find a solution soon. 

It is important to mention Jenny has a strong faith in God and has kept a positive outlook throughout the last couple of years. Though she lives with other serious chronic illnesses, she admits PH has been another beast and is thankful for the support she has received from her family and friends. Her husband especially has been a great caregiver to Jenny and has worked to learn as much as he can about PH. He even called family and friends to talk to them about her new diagnosis so she wouldn’t have to. Jenny knows she is “very blessed to have support and understanding” from those who care about her. She is also thankful for PHA and wishes for a day when she can receive the same great support for her other illnesses. 

By Imani Marks, Patient & Caregiver Services Intern

Based on an interview with Jenny Klick 

Anna Bower: Living and Thriving with Multiple Diseases

Being diagnosed with any chronic illness is difficult to handle. Being diagnosed with multiple chronic illnesses is even worse. You have to balance your life with your limitations. You visit doctors frequently. Your nurses know you by name, and you are sure your insurance company rolls its eyes when receiving a claim for you. You take so many medications you really have to watch supplements and over-the-counter medications for counter-indications. One day you may be ailing from one disease and the next day it is another. It is a lot for anyone to deal with. I have been diagnosed with systemic lupus, PH, hypothyroidism, mixed connective tissue disease, Raynaud’s, fibromyalgia, migraines, hypoglycemia, anemia, depression and gluten intolerance. I grew up with the hypothyroid, Raynaud’s, migraines and hypoglycemia. The additional diseases came after I finished high school.

I was diagnosed with lupus in 2004 at the age of 20. I have always been a very independent and active person, and the diagnosis changed everything. I was living on my own, going to college and doing the “college thing.” With this diagnosis, I was no longer able to continue college or support myself, so I moved back home. No more hiking, rafting or soccer. My hands hurt too much to write, and my feet and knees hurt too much to walk far. Depression had now become a part of my life. My lupus became more than lupus; it became what I call “Lupus+” — my doctor calls it mixed connective tissue disease and fibromyalgia. I had the diagnosis of SLE (lupus), but I also presented with symptoms of scleroderma and polymyositis, like PH. Anemia just kind of comes with the package. In January 2010, I was diagnosed with PH. I think my body just wanted to make life a little more interesting and added the gluten sensitivity.
I had to quit working. I could hardly exist, let alone work. Naps became a regular habit, and I could only go out for an hour or two. I had to give up my dog, my rabbit and my fish. Okay, I didn’t really have to give up my fish, but there was no way I could take care of a husky!

I had to avoid the sun because it could cause my lupus to flare up. Since hiking and rafting were out of the question, there went my desire to do photography. I loved to play the clarinet, but my fingers could no longer move fast enough for long enough, not to mention the lack of lung capacity! My life, in its current form, was no longer possible, and I became withdrawn.
At some point after my first year, I realized I couldn’t let my diseases define me. I began to figure out what I could do, instead of what I couldn’t do. After PH, oxygen became a permanent part of my life. I learned that I could go out in the sun if I remembered sunscreen, long sleeves and hats. I could go hike if I made sure to do an easy trail. I could walk if I found good shoes. Photography became a passion again! It is so wonderful to capture something that others take for granted. Knitting and crocheting are great exercise for my hands.
Then I returned to college and began taking classes again. I enjoyed spending time with other young people and exercising my brain. My college, Colorado Mesa University, offers support for students with needs. They supply carbon paper if I can’t take my own notes; some teachers allow tape recorders. Most classes have the PowerPoint slides on the school network. Each semester I meet with my teachers to discuss my situation. I offer to get documentation for them if needed and supply them with a list of days I will miss because of doctors’ visits or treatment. Financial aid is also plentiful for students in my position; all you have to do is talk to the office!

I just finished a six-month treatment of chemo for my lupus, which has been successful so far. This last December I finished my associate’s degree, and I am just about to start my next semester of classes on my way toward a bachelor’s degree in history. Napping is still a hobby, and my kitten and I enjoy them greatly! My boyfriend has been a huge pillar for me, keeping me motivated while remaining understanding, and my mom is always there for me.
It is okay that my life has changed. With my mind set and the support and love of those I keep around me, I am able to accept and enjoy what I have. Things have definitely changed, but that change doesn’t have to be bad. People ask me if I wish it were different. On one hand, of course! But on the other, this life has made me who I am and given me what I have. Why would I want to change that?
By Anna Bower, PH Patient
This was first published in Pathlight Spring 2012.