A Journey of Positivity and Discovery - by Taleena Koch

Updated: Apr 3, 2021

Taleena Koch works as a pulmonary fibrosis advocate through the Breathe Support Network. Our team had the distinct privilege of partnering with Breathe Support to work towards a collaborative effort to raise awareness of IPF. Taleena lost her mother in 2009, approximately six years after being diagnosed with the illness.

This is her story.

Our Journey of Positivity and Discovery

My mom, Beverly Hart, was diagnosed with idiopathic pulmonary fibrosis (IPF) on November 26, 2003. As with most who are diagnosed with any form of PF, we had never heard of the disease. As with many who are diagnosed with any form of PF, mom had been previously misdiagnosed with another disease.

Mom started seeing doctors in her 40’s with shortness of breath, clubbing of the fingers, and a dry non-productive cough. Because she was a smoker, the doctors automatically told her she had symptoms of emphysema, a form of COPD. The doctors just told her to stop smoking and her lungs would eventually get better.

Fast forward 20 years. Mom finally stopped smoking in July 2001, after many bouts of pneumonia that year. She made a choice between smoking and breathing, quit smoking cold turkey after 47 years, and never touched a cigarette again. She was also put on supplemental oxygen to help with her low oxygen saturation. Her doctors still maintained that she had emphysema and even with pulmonary function testing, never mentioned any other lung disease.

Mom continued struggling with pneumonia multiple times a year. She was living in Montana and I was in Washington. Trying to help her long distance was nearly impossible. Finally, in May 2003, I was able to move her out to Washington with me. We flew to Seattle on May 31st. On June 2nd, we were in the emergency room and she was being treated for congestive heart failure (CHF).

During that ER visit and with the help of Lasix (a medication to reduce fluid build up in the body) mom lost 9 ½ pounds of fluid in a few hours. Her breathing was somewhat better ,but she still needed to see a cardiologist for a full work up. This started us down her path to discovery.

We immediately got her into a cardiologist who found that, aside from some manageable CHF, her heart was in great shape. He didn’t know why she was still struggling with shortness of breath, even while on supplemental oxygen. We got her set up with a new primary care doctor. He too didn’t know why her breathing was still so bothersome. It felt like no one was able to help her feel better. I finally asked them to refer her to University of Washington Medical Center in Seattle.

Once mom got there, the doctor in the Interstitial Lung Disease (ILD) department started all sorts of testing. They were talking to us about various diseases: pulmonary hypertension, sarcoidosis, scleroderma, and other things we had not heard of or knew little about. PF was never mentioned. Finally, in October they needed to do a lung biopsy. Mom had the biopsy and it took another 4 weeks to get the results.

On November 26th, while we waited in the exam room, we discussed that we hoped it wasn’t cancer or pulmonary hypertension (PH). We knew of PH because I had a friend who had recently passed away from that. We felt that lung cancer would be a death sentence. The prospect of chemotherapy was so frightening. We hoped it would be something else. Hindsight is 20/20: lung cancer might have been a blessing.

Dr. Ganesh Raghu, the head of the ILD department came into the room and introduced himself. This was the first time we had met him. He sat down to give us mom’s diagnosis – idiopathic pulmonary fibrosis.

He explained to us that the disease was already quite advanced, that it was progressive, that there is no known treatment or cure, and that it was terminal. We listened to all he had to tell us and then I asked the dreaded question, “How much time does she have?” He said, “2 years, at best.” He told mom to get her affairs in order. He talked to us about drug trials and lung transplant. He set up a follow up appointment for mom. Based on her 6 minute walk testing that day, he increased her oxygen from the setting of 2 ½ on pulsed tone to 4 LPM (liters per minute) continuous flow. This would be what helped her to not experience as much shortness of breath as she was experiencing.

Mom and I drove home in silence. Stunned.

As everyone who experiences this, there were so many things going on in our minds. So many questions we had. So much shock from having a diagnosis of a disease we had never heard of. How did she get it? The doctor couldn’t answer that question. Her lung biopsy showed absolutely no known cause of the PF, thus the term “idiopathic.” While she was a smoker for 47 years, he said that was not the cause. Because mom had worked on renovating old buildings for a number of years, worked in plastics production plants, and around other possible exposures, Dr. Raghu expected to find signs of an exposure. None were found. She had the hallmark “honeycombing” scarring pattern that accompanies IPF (whereas other forms of PF have a different scarring pattern). We truly had no idea how she ended up with this disease.

Upon reflection over the years, mom remembers as a child not being able to keep up with other kids. She would get more easily “winded” (i.e. short of breath) when trying to run and play. But born in 1939, not a lot was known about lung disease. Is it possible she had this disease most her life? That is something we will never know. Her own mother had “emphysema” as well. But again, as a smoker, emphysema was “assumed” without any testing. Was it possible mom and grandma both had IPF? We will never know. My sister also had emphysema, but too was a smoker. She too has passed away, so again, we will never know if she also had IPF or if it was just emphysema.

Mom’s diagnosis set us on a new journey together. For her, it was a journey of positivity – living as good a life as possible for as long as possible. For me, it was a journey of learning – researching and learning as much as I could about IPF and every single thing that came with it. For us, the journey was just being together and having as much quality time as we could.

Two weeks after mom’s diagnosis, she told me “If I have 2 years to live, I’m going to make it the best 2 years of my life.” I always tell people how positive mom was. How she always found “the silver lining around every cloud” and how “her cup was always half full.” I have been told by some that these are clichés. They may be clichés, but they are truly how my mother lived her life. Especially in those last 6 years.

Yes, 6 years. Those “2 years, at best” turned into 6 amazing, wonderful years with my mom. They weren’t 6 easy years. PF is a rollercoaster of a disease. Each day can be up and down. She had many other medical problems that cropped up. We met every one of them head on. I continued researching and learning so that I could talk with her doctors and ask the questions that needed to be asked. It also helped me be able to advocate for better care for her when her care was not what it needed to be.

Mom was an amazing patient. She didn’t like being at the clinic or the hospital. She grew tired of the tests and being “poked and prodded.” When she would talk about being tired of it, I would ask her honestly “Do you want to continue to try to live or are you done fighting?” For 6 years, she told me she wanted to keep living. She often said “PF is not going to take me until I’m ready.” She didn’t let PF define her. She did what needed to be done, until she was ready to be done.

I remember her 70th birthday on February 27, 2009. She was SO ELATED to blow out that “70” candle. She took a photo to her appointment with Dr. Raghu in early March to show him. At that time, she was having a fairly severe progression of the disease. Her disease had progressed to the point of her needing to increase her oxygen liter flow again. She was now on 12 LPM of supplemental oxygen. This meant carrying around a lot more tanks every time she or we wanted to go anywhere. It was also time for her to give up driving. I know losing that independence was hard for her.

She did start to slow down more at that point. We noticed her being more tired. Sleeping more. Generally, not able to do as much. But she kept her positive attitude and she kept smiling. She shared her smile with everyone she met. She didn’t complain. She didn’t ask “why me.” This was to a fault. Earlier into her diagnosis, her primary care doctor didn’t even believe she was sick because “she smiled too much” when she would see him for her appointments. That is just who my mom was. She felt that if she couldn’t change it, she might as well accept it and make the best of it. This is how she lived those amazing, wonderful 6 years.

That summer was tough. I had foot surgery. Mom got sick with a bladder infection. The first of a series of 3. My husband was caring for both of us, as well as our two young boys. Finally, I had to have my sister come stay with mom and help out. That August, mom told us girls these words: “I’m just so tired.” We knew what that meant. We knew that she was done. We knew the next time she got sick would be the last time.

September 25, 2009 was that next time. Mom had another bladder infection and this one had become septic. That day, a beautiful sunny Friday afternoon, I met mom and my sister at the clinic. They were sitting at a picnic table waiting for me. Mom was sitting there smiling, enjoying the sunshine and warmth. No one would know that anything was wrong. As I started talking to her, I realized she had no idea who I was. Then I realized she had no idea who my sister was. She was just sitting there with us, not a care in the world and a big smile on her face. My sister told me the doctor couldn’t find a thing wrong with her. I told my sister “I think she has a bladder infection” and we needed to take her back inside. By this point, mom couldn’t even walk on her own. We got a wheelchair and took her back inside the clinic. They ran a test to confirm a bladder infection. The doctor explained (as had been explained with her previous two that summer) that in older people, bladder infections often cause problems with memory and cognitive ability. This is why mom didn’t know us and why she was unable to walk. They called an ambulance and took her to the hospital because they suspected she was septic.

At the hospital, they immediately started her on the medications for sepsis since those cultures take 24 hours to come back. By Saturday, mom was doing better. She knew all of us again and she was able to walk around. Her body was responding well to the medications. She had a little scare Saturday night where her fever went up suddenly and she was having some breathing problems, but manageable. They got everything controlled and she was better. Sunday she was doing even better and the doctors were talking of sending her home on Monday or Tuesday.

Sunday night at 7:30 pm that all changed. Mom’s fever shot way up again and her breathing became suddenly difficult. They had her on 100% oxygen and she was not able to maintain her oxygen saturation. Her vitals were all over the place. She couldn’t even talk because she was so short of breath. Unfortunately, she was not in the hospital where Dr. Raghu was. She was in a different hospital and her doctor admitted to me that he knew very little about PF. He heard a little fluid in her lungs but nothing that would cause what was going on. He didn’t know what to do and he deferred to me. I told him she needed to be moved to the ICU where they were more equipped to deal with this and I also told him (as I had learned in a support group I had recently joined) that her breathing might be helped with Morphine and Ativan. He agreed and ordered the meds. It took forever for the nurse to give them and I watched mom get more anxious and struggle to breathe even more. I had a bad feeling so we had everyone calling and talking to mom, though mom couldn’t talk back, but at least she could hear her loved ones.

The doctor and nurse both asked mom multiple times if she wanted to be put on a ventilator if it came to that and mom shook her head “no” every time. She knew if she went on a vent, she wasn’t coming off.

Finally, it was time to move her to the ICU. My sister and I gave her a kiss and hug and told her “We’ll see you in a couple of minutes.” It was literally just a few minutes from her room to the ICU. In that time, mom went into full respiratory arrest. The ICU nurse asked us again if mom wanted to be on a ventilator and we told her no. The nurse said “then it’s time to come be with your mom.”

My sister and I stayed with mom. The wonderful ICU doctor, who had experience with PF, continued with the medications to calm mom’s breathing so she wouldn’t suffer. We let nature take its course.

We lost mom shortly after 11:00 pm on September 27, 2009. Just a few hours after all her major struggles started. For that we are thankful. She didn’t suffer very long. We had doctors who treated her with compassion and gave the care that is needed for someone with end stage lung disease. That compassionate care helped give her a peaceful transition.

We miss her terribly. We always will. Life has not been the same and never will be. While it has been nearly 12 years, not a day goes by that I don’t think about her. I still learn from her. I try to be better – to do better – to be more positive. She was always the optimist to my pessimist. 😊 She will always be my amazing mother but also my favorite teacher, my most ferocious cheerleader, and my best friend.

My mom is the reason why I became a PF advocate. She is what drives me to help others. We did most of her 6 year journey alone. We didn’t find support until a month and a half before she passed away. We had her amazing medical team, but we knew no one else living with or caring for someone with PF. This is why I stayed in support and why I have the Breathe Support Network. I don’t want anyone to have to walk this journey alone. Everyone should have support. I know I can’t reach everyone in the world who needs support, but if I can help one person, then it’s all worth it.

I told mom before she passed away that I would make sure her fight was not in vain. That I would ensure others get the help and compassion that they need. That I would share her journey with the world. I have been doing that since that fateful night in 2009. I will continue to do so until my last breath.

#LIVEwithPF #BREATHE #BreatheSupport

Taleena Koch Breathe Support Network PF Advocate for Patients and Families

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