19 posts tagged “PF”

“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

Posted January 1st, 2016 by

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March.

We had the chance to connect with her recently, and here’s what we learned …

1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time?

I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother and I were forced to change our lives as well as our homes and lifestyle. She moved us to a town ten miles from where I was born. I went to college at PALOMAR Jr. College where I majored in boys. I married my husband, George, in August of 1963, and became a mother June 1964. You know the plan to wait a few years just didn’t work for us. You remember I said I majored in boys. Seems I didn’t know how to count and messed up the birth control pills ‍‍. I became a stay at home mom and our son was born four years later. Amazing how quickly you learn to count when needed. As my children grew, I became restless and went back to school. I discovered I wanted to become a nurse and take care of others so that was what I did. The kids were growing up and we were all going to school. I graduated with my R.N. in 1979 and became an oncology nurse specialist. That progressed to orthopedic nurse, home care nurse, then a MDS coordinator. I retired in 1996 after my son became ill with testicular cancer. He healed, my father-in-law died, I had ovarian cancer and one Thanksgiving night after everyone went home I suffered a heart attack at 53. During the next year I had seven stents that failed, had a triple bypass and did really well until last year. Then I caught the lingering cold everyone was catching, but mine wouldn’t go away. On my birthday I finally went to the doctor after four weeks. I was placed on ABT’s inhalers, and steroids. One week later I returned unable to breathe. It was at that time I was told they heard crackles and the X-ray showed IPF scarring. I had purchased a cruise to Hawaii for our Christmas present, but was unable to go. I was on oxygen and not feeling better. The 13th of Jan. I was in the hospital with pneumonia. My life of playing bingo, gaming at the casino’s and cruising was over as I knew it. I was still able to read, enjoy my backyard, and the glorious sunsets and the multitude of hummingbirds I feed. My life was changed but not over. I was able to enjoy the little things that made me happy. I was lucky to have my husband of 52 years with me, my daughter and my ten-year-old grandson as well. They are all my daily blessings and sources of enjoyment. Don’t get me wrong, it is not always sunny, but we are managing, one hour at a time. I have my moments full of tears, but, also joy in the little things. I try to deal with what cards I have been dealt with grace. Some days are better than others.

2. You’re very supportive to others in the forum. In a recent post, you said to another member, “We care, we know, we too are frightened by our diagnosis. Don’t feel alone, that no one cares. We may not be there physically to hold you in our arms, but you have many arms around you that DO CARE.” How have you, in turn, felt supported on the site?

I try to visit the site on a daily basis and interact with my family here. If they don’t post for a while I fret and worry. They fill my need to help others to help myself. This place is my safe place. I truly believe we are family and here to help each other. I am free to tell those who understand how miserable it is on some days. They understand and perk me up with their prayers and responses. I love that we are free to share everything or nothing. This is another part of home!

3. As a former RN, how do you think your past experience informs the advice you give to others?

Most often I have to censor myself because of my prejudices toward the medical profession today. I feel I know enough to give good information and resources if needed. I am not afraid to tell it like it is. We are not here for the fairytale version of what is happening to us. We are here for truth and knowledge that what we feel is normal or not. I listen to everyone and what they say to learn for myself. I hope they can feel the love that is offered even though there is such little hope at this time. I think the main thing I give is knowledge and comfort. At least I hope so.

4. Tell us about your diagnosis. What did you do/feel in the moments following it?

Like I said, it was very sudden when it finally showed up. A few years before before I was symptomatic, it was mentioned and I recall ignoring it, saying we would worry about it when we needed to. I was breathing and living a normal life and was truly not interested in it since it was incurable and not affecting me at the time. I think I knew last year when I was diagnosed my easy time was gone. I never wondered why me, never got mad. Why not me! I think what has affected me most is I promised my grandson to take him to see the glaciers in Alaska. I cannot afford the medical supplies that includes any longer and I hate that I didn’t take him sooner. I would love to book a cruise right now, but can’t afford to lose all that money if I get worse. I investigated it earlier last month and renting the portable concentrators that go high enough and the extra batteries and the scooter make it seem so much like a dream. I think the day I realized my dream to see my grandson’s face when he saw Glacier Bay and the calving was over was the day I felt the worst. I felt my dream die and even now it brings tears to my eyes and pain to my heart. My advice to my friends and family here is do what you need to do while you still can. Don’t let this disease kill your dreams if you can still do them. DO THEM IF YOU STILL CAN.

5. How would you best describe the feeling of living with IPF to someone who doesn’t have it?

I find it can be overwhelming depending on the day and what you want to get done. I am no longer independent and able to plan ahead. I need help with shopping because the cart won’t hold my oxygen and the weeks worth of groceries. I spend several days visiting different doctors every week between me and my husband, rather than going out to do what I want. I look good, feel pretty good for all that is wrong with me, I just can’t breath good. I tend to tire more easily than before and sometimes it is hard for people to understand. Like I say, I look well just sitting there with the cannula and oxygen tank or 50′ of tubing I walk around the house with. I have a love hate relationship with the oxygen. I am grateful for it making my like livable, but hate the way it looks, the constant noise and the dry nose and mouth.

Most people don’t know anything about IPF. I TELL THEM IT IS A TERMINAL DISEASE WHERE YOUR LUNGS QUIT EXPANDING AND COMPRESSING. They have two new medicines that may help prolong life with a better quality. Nothing out there to my knowledge will cure it. A lung transplant is a possibility for some but not me. I have already had my chest cracked when I had my bypass. I am too old and too fluffy to get one. So I live each day the best I can.

6. What advice would you give to a newly diagnosed person?

TALK, JOIN, DISCOVER ALL YOU CAN. THIS IS YOUR LIFE, KEEP UP WITH NEW INFORMATION. MOST OF ALL LOVE YOURSELF AND BE HAPPY YOU CAN CHANGE THINGS TO MAKE THEM BETTER with your attitude! You may not like it, but make the MOST of it.

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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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