6 posts tagged “member”

“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

Posted May 19th, 2014 by

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about living with IPF below.

Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like? 

My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results.

Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t send up any alarms [although looking back at both 2005 and 2008, I can see where there was a definite indication that I was heading towards restrictive breathing problems]. Inhalers only made the coughing worse. The respirologist said I had “sensitive lungs” – gee, doc you think?

Then, in November 2010, I was laid out with another chest cold, coughing my lungs inside out, barely able to walk 10 feet. So the new family doctor calls me. This time, the x-ray report came back that I was showing signs of interstitial lung disease (ILD). What? So onto the computer and in to see the family doctor. When the doctor suggested sending me back to the local community-based respirologist I had previously seen, I said NO BLOODY WAY!

Instead, through a friend who is a thoracic surgeon at the University Health Network (UHN) in Toronto, I got a quick appointment at the ILD Clinic at Toronto General Hospital (TGH) in January 2011. Since I hadn’t yet had a HRCT, I was sent for one and returned to the clinic in June. The initial diagnosis was probably IPF, but maybe NSIP since my HRCT didn’t show the UIP-pattern. The decision was made to treat as IPF so no harmful treatment was undertaken. A biopsy was discussed, but was considered too early for that invasive test and that instead my disease would be monitored via non-invasive tests.

My ILD/PF specialist continued to monitor me and after another exacerbation early in 2012 and the PFT showing a progression of my lung disease, we decided to send me for a VATS biopsy. The September 2012 biopsy clearly indicated the UIP-pattern of lung damage and the IPF diagnosis was confirmed.

Over the last few years, I’ve learned a great deal. I know that the road to diagnosis is often long and complex with not all the pieces of information presenting at the same time — seldom with one test or series of tests taken at one point in time. I feel I’m fortunate that first I had that very unsatisfactory experience with the local community-based respirologist and that through my husband’s work we had met and become friends with a thoracic surgeon who is on the lung transplant team at TGH.

So even though I “naturally” followed the recommended course of action to get myself to an ILD/PF expert, my path to diagnosis wasn’t instantaneous. My biopsy could have just as easily shown that I had a treatable form of PF — still not good news but a different path.

Now with a confirmed IPF diagnosis, I’ve been assessed for transplant (June 2013) and found suitable but too early. But another winter of exacerbations and my ILD/PF specialist is now talking about going on the waiting list.

Another PF member, Lori, spoke about her “new normal” – how did your diagnosis change daily life?

Yes, life with PF has certainly been a series of adjusting to the “new normal” but up until February 2013 when I started oxygen therapy, the changes were small. I had to explain to people why I broke into coughing fits while talking on the phone or in person. I had to explain to people who offered water that thank you but it didn’t help since it was just my lungs telling me to talk slower or shut up. I had to explain to people that I wasn’t contagious when coughing. I had to explain to people that the huffing and puffing were just the “new me” and that they didn’t need to feel they had to jump in — that I would ask when I needed help.

But since going on oxygen therapy with my new facial jewelry and my constant buddy, I don’t have to explain that I have a disease but some people still like to ask questions and I enjoy answering them.

Life with PF and supplemental oxygen is definitely more complicated. I started with high-flow for exertion (6 lpm) and liquid oxygen (LOX). So I can’t spontaneously take off overnight (I would have to make arrangements about a week ahead to have  equipment and supplies delivered at my destination) and I probably can’t fly. But I’m a homebody so that has affected me very little. But I can’t leave the house without considering how long I will be and how many of my LOX portables to take with me.

I still do my own driving, shopping, cooking, housework, and one or two 2-mile walks per day on the farm property — over hilly landscape — because I’m de-conditioned after this past winter. I’m currently having to use 8-10 lpm for those walks but I’m doing them. Use it or lose it!

What made you decide to get so involved in the PatientsLikeMe community and how has it helped you better understand your own PF?

Involvement with PatientsLikeMe was more of a knowledge-based decision. I believe that knowledge is power and knowing as much as I can about my disease helps me to manage the disease. For me, support is sharing what I have found and providing directions to that information for others. Then it is up to them to read the information and decide how, or if, it applies to them.

I believe in being my own medical advocate in charge of my medical team. I’ve probably had a natural propensity for that but my way of thinking in not being a traditional patient was affirmed by Dr. Devin Starlanyl, a doctor with fibromyalgia who wrote The Fibromyalgia Advocate. Fibromyalgia is a matter of living with and managing the symptoms and dealing with different medical specialties to achieve that BUT also accepting that you as the patient are central to treatment and management.

I believe that living with PF is that way as well. The doctors can only do so much. There is no single silver bullet that they can give us, no matter what type of PF, to make it all go away. We have a core set of symptoms BUT we don’t all have all the same symptoms. We have to take ownership for our disease management.

So at PatientsLikeMe, I seek to not only learn but to share what I’ve learned. If I can help one other person shorten their learning curve then perhaps I’ve helped.

On your PatientsLikeMe profile, you reported using a pulse oximeter in 2013 – how did you like it? What did it help you learn?

I found that I was having to slow down too much or struggle too much to breathe. My walking test was not yet indicating that I qualified for oxygen therapy but rather was on the cusp of requiring supplemental oxygen. I was concerned about the damage to my body.

I purchased an inexpensive pulse oximeter to check my saturation. I soon realized that being short of breath was not a reliable indicator that my oxygen saturation had dropped below 90%. Having the oximeter to give me a measure of my saturation helped me to better interpret and listen to the other biofeedback that my body was giving me.

The oximeter helped me to manage my activity so that fear didn’t turn me into a tortoise that either slowed way down or seldom moved. I got a better handle on just how much and how fast I could do things to keep active, to keep my body healthy, to exercise all the parts of my respiratory system, and yet to do it SAFELY!

Looks like you use your profile tracking charts and reports a lot on PatientsLikeMe- why do you donate so much health data, and how do you think that will change healthcare for people living with PF?

Again, my propensity. I love learning! I love sharing what I learn! I keep my own spreadsheets with my medical data but that only benefits me. I know that one of the problems for researchers is accessing a sample population large enough to make meaningful inferences from their findings. And finding a large population in a given geographical area for a rare disease is difficult. Going outside the geographical area is expensive. So hopefully the remote sharing of information will be the answer.

We are all so very different and so many of us also have other health issues on top of the PF. So who knows what comparing us will show? But throughout life I’ve been amazed at how seemingly inconsequential, seemingly totally unconnected pieces of information can come together at a later point and TURN ON the light bulb!

So why not share my health data? It really is anonymous. Unless I provide more identifying information, I’m just a name and a face but maybe with enough names and faces we can get some answers that will benefit us all.

 Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted March 27th, 2014 by

 

This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire!

If you missed one of her previous interviews you can find those here.

 

 

You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal?

For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance equals muscle efficiency. The more efficiently the body can use oxygen, the easier it is to breathe. Right now, I can do 30-35 minutes on the treadmill at 1 mph. I’m not setting any records, but I am moving, and that’s really the key to all. Activity is difficult for anyone with PF because oxygen sats plummet so quickly. So all you can really do is move as often as you can for as long as you can. I marked a 600-ft circuit (4 laps) in the house and practice my 6-minute walk several times a day (600 feet in 6 minutes is a baseline standard). I go to Rehab every week, and I have a pedal exerciser that I use while I watch TV. It sits on the floor for use with the feet, or I can put it on a table for use with my hands. Every little bit helps!

Plus, I have discovered a calorie-burning secret weapon available specifically for PF patients — breathing. My pulmonologist told me that the average healthy person expends about 2% of total daily energy on breathing. People with PF expend 20% on breathing, and someone who is end-stage like me probably uses more than that. Dragging air into these stiff old lungs is hard work! My transplant coordinator agrees, and warns her patients that post-tx, we really need to watch what we eat because we aren’t spending nearly the energy we did before on breathing or anything else.

Can you tell us a little about how you get your Lung Allocation Score and what that means for placing you on ‘The List’?

Everyone who is approved for the lung transplant waiting list receives a Lung Allocation Score (LAS), ranging from 0 to 100. The LAS is used to determine your location on a Transplant Center’s waiting list, and is based on medical urgency and the potential for survival post transplant. When I was listed in February, my LAS was 62, and four weeks later it was increased to 71. The average LAS at Barnes is in the 40s. I am neck and neck with another candidate for the #1 spot — luckily we have different tissue types, so we are looking for different donors.

Since my score is so high, I am re-evaluated every two weeks. Anyone with a LAS below 50 is re-evaluated every four weeks. The bi-weekly eval includes a PFT (FEV1), 6-minute walk, chest x-ray, blood tests and meeting with a pulmonologist.

It’s important to understand that being #1 on the list doesn’t mean that I will get the next lungs that become available. They still have to match size, blood and tissue type . But, because of my high placement on the list, I will be considered first for every donor lung.

And did you have a ‘fake’ heart attack?!

This was one of those “blessings in disguise.” At Barnes, the evaluation for transplant list is a 4-day process. My husband and I were there for Day 1, Test 1 — blood work and an EKG. Pretty routine stuff that I never have an issue with, except this time. When I shuffled from the chair where they drew blood, to the table where they hooked me up to the EKG, my sats dropped (normal) and my heart started to pound (also normal). The tech gave me a few minutes to recover and then ran a strip. She got quiet and left the room, then came back and ran another strip. She left the room again, came back and ran a third strip. I was wondering what was going on because no one ever runs three strips and she kept asking me if I felt okay (I felt fine). Then suddenly, the room was full of people (the acute response team). Among them was a resident who informed me I was having a heart attack. I assured him I wasn’t. He said something about inverted waves and the EKG looking like I was having a coronary. The only problem was, I felt fine… not just fine, completely normal! They sent me to the ER anyway, where multiple EKGs and blood work showed no signs of heart attack. But, a comparison with an EKG I’d had 6 months earlier showed a slight change, so they admitted me.

I ended up having a heart catheterization, which I was scheduled for later in the week anyway. The cath was clear, beautiful in fact. And, they decided to complete all of the tests I’d had scheduled that week as an inpatient instead of an outpatient. In exchange for three days of lousy food, I was able to complete the eval without the stress of driving to and from Barnes everyday in sub-freezing temperatures. My husband got a nice reprieve, too!

You talked a little on your own blog about ‘Life on the List.’ Can you share with the community what that means for you day-to-day?

Getting on the list was a goal I’d had for more than two years. In that time, it had almost become a destination in itself — everything was focused on losing weight and getting on the list. Once I was on the list, everything would be fine. But getting listed is just the beginning of a whole new journey where I have a lot less control over what’s happening. It would be easy to become overwhelmed with frustration or fear or panic — I’ve felt all of those at one point or another. Instead of giving in to these emotions, however, I’m trying very hard just to let go and focus on the things that I can have an impact on. I can’t change when my donor match will be found, but I can keep myself as active as possible so I am ready when the call comes. I can’t predict what my recovery will be like or how long I will survive afterwards, but I can be present and involved right now in the lives of my family and friends. So for me, Life on the List is pretty much a one day at a time kind of thing. I hope, I pray, I plod, and I wait.

I noticed on your PatientsLikeMe profile that you’ve been consistently using your PF Severity Score and symptom report. What do you find helpful about these tools and what inspires you to donate so much data? 

I did it for the t-shirt. Kidding! I really love having one place where I can get a complete picture of what’s going on — not just test scores or symptoms, but also how I’m feeling in relation to everything. The various questions help me tune into my mental, emotional and physical states. And the more I understand about what’s happening with me, the better informed I can keep my doctors, and that helps everything.

As for donating data, I am happy to do it. The treatments and techniques that I am benefiting from today were developed with information from patients who came before. Sharing my info is the best way I can think of to pay it forward.