[Patsy]

Hi Keith,

Thanks for your story. It blew me away to hear that you contracted this disease from scuba diving. Never knew this could happen.

I’m over 50 in California and was diagnosised with ILD complicated with autoimmune in September 2015. The first diagnosis was IPF but my pulmonologist was hesitent to prescribe any drugs to help due to the autoimmune involvement. So, I started seeing a nutritionist who at least got me on supplements that helped me feel better while I waited for my second opinion at UCSF. Long story short, my Rheumatologist and pulmonologist there diagnosed me with ILD and dermatomyostis. I was also prescribed mycophenolate and prednisone which really helped. I continue to take several supplements one of which is called PneumoVen. It has lots of herbal properties that combat inflammation. Because of the difficulty I’ve had sleeping (byproduct of prednisone) I started using edible cannabis. I began using it in January 2017 and it really works. I do it only at night and eat about 10mg daily. I’m also on O2 at 2 lpm intermittenly, mostly when I sleep or engage in physical activity like exercise, gardening or shopping.

I want you to know that this regimen has worked very well for me for the last four years. All docs are pleased with test results and unless I get a cold or the flu, the good days outweigh the poorer ones. At my last appointment my local pulmonologist reviewed the bloodwork, PFT and cat scan results and said he believes I have many good years ahead. I’m very hopeful he’s right.

Regards,

Patsy

[Patsy]

Hi all, I’ve tried pineapple to help with coughing too. I don’t have gerd nor do I suffer from acid reflex, but the acidity in this wonderful fruit does do a number on the inside of my mouth, so I do it in small doses. I found a great supplement through my nutritionist that has bromelain (pineapple extract) as its main ingredient. It also includes other natural ingredients that reduce inflammation. It’s called PneumoVen. 60 capsules in each bottle made by Premier Labs. I tried to purchase it directly online, but found it’s more available through Amazon. It provides me with the properties of pineapple without giving me sores in my mouth. Winner!!

Hope this helps,

Patsy

[Patsy]

Hi all,

Karl, thanks for your imput. I totally agree with you.  I completed pulmonary rehab soon after my diagnosis and most of what we learned included diet and exercise. It’s a lifestyle that can be obtained if we can realize how making even small attempts at exercise increases quality of life. And the equipment you want to use Charlene, are exactly what they had us using. I occasionally work with small weights too.

Jean-Michel, I appreciate your enthusiasm and how you and your wife are enjoying golf. I don’t play with other PF patients. But my golf buddies are very supportive of my efforts when I want to play. A portable concentrator is perfect to use on the course. I still have a hard time with the cannula and the hose so I still choose to take it off when I take a shot. Maybe it’s more comfortable for me since I’d played long before I got sick. Here where I live, there are many municipal courses from which to choose and like to visit them all for variety. I play for fun & not very seriously. I’m also a fair weather player, so the last time I played was in October. When the sun comes back out I’ll play 9 holes maybe 3 or 4 times through the summer. I’ll go to the driving range and practise my putting more often. If you can walk the course, I’d recommend that. But I’ve progressed a little bit with this disease and it’s just not in the cards for me. So, I rent a golf cart and still enjoy the ride!!

Patsy

[Patsy]

Hi @jeanmichelf, and Charlene,
Thank you for bringing up this topic as those of us with this disease need to find lots of different ways we can still participate in sports with IPF.

I was diagnosed with IPF in Sept 2015 and started using O2 in 2016. Prior to that I had been an avid golfer and grieved at the thought I could no longer play along with the other classes I regularly participated in, like yoga and zumba. Very early on, I asked about how I could be active with O2 and was advised by my oxygen supplier that I had options that Medicare would pay for. When you play golf here in California, the golf pro immediately sees you have special needs when you are wearing a cannula and carrying a tank. They offered a discounted cart that has a flag on it so the golf Marshall knows you are disabled. They allowed me to drive the car off the cart path and up to but not on the green. My own personal preference would not be to wear my backpack but it was with me in the cart. Somehow its weight and movement would alter my shot. I’d take it off, leave it in the cart parked close by, take the shot and put my O2 back on. It really allowed me to continue playing for at least 9 holes for a glorious day of great fresh air and exercise.  It’s a little different at the range or doing pitch and putt, but still very doable. I hope this helps others and maybe encourage those who are looking for a low key activity they can do while they are managing IPF.
Patsy

[Patsy]

Hi Charlene,

When I read this, I started tearing up because I can really relate to this experience. It’s one of the downfalls of having a disability that isn’t evident though many of us use supplemental O2.

Going to the grocery store some days takes a lot of effort. It’s an activity that I sometimes look forward to because it gets me out of the house and, for the most part, gives me a sense of accomplishment that I have engaged in some of the exercise we so desperately need. Other days, it is indeed a chore. On those days, I can feel my energy waining. By the time I get to the cashier, I’m sweating and ticking up my supplemental O2 a notch or two just to finish with this task and get back to my car so I can recover a bit. I have encountered feeling rushed many times by not only other customers who are behind me in line but by the cashiers! My first response is to smile, make eye contact and engage in friendly banter so they “see” me. It helps a little but not always. Part of my effort to help them understand my limitations is to request my bags be as light as possible as I’m just not as strong as they are. At that point, they often make those small adjustments that help.

On a brighter note, I’ve found a grocery store with cashiers who, as soon as I enter their station, greet me with a friendly smile and reassure me that they will make sure I won’t be rushed. Kindness is still alive and well. Obviously, that’s where I shop the most now!

Thanks for this forum. It gives me hope and a place to not feel alone with some of these issues we face.

Patsy Archibald

 

 

[Patsy]

A good friend said recently, “you’ve really taken the bull by the horns while you manage this disease”.  So, I guess I’d also use the word fight. By engaging myself in this way, I feel more in control and have some sense of power over the limitations associated with PF.

Hopeful, Patsy

[Patsy]

Hi, the chills and struggles to get out of bed that Julie’s dad is experiencing, are the early, icky symptoms I experienced too. I was diagnosed in 2015 after many months of the doctors taking test after test trying to identify my illness. They kept treating me for pneumonia that, thankfully, never put me in the hospital. While I had an overall feeling of having a chronic flu and chronic cough, the major symptoms I could not shake off were the horrible chills and muscle aches that wouldn’t even allow me to roll over in bed without tremendous pain. Even though I was taking antibiotics and steroids in those early days, the one thing that eased the deep aches and chills was ibuprofen. Once I got a firm diagnosis and was prescribed cellcept, prednisone and supplemental oxygen, did most of those symptoms start to subside. For about a year I continued to experience what I now call “flare ups” but they were less severe and not as frequent as time passed. I still wear more clothes to keep me warm, even in the summer (I live in California). And you’ll often find me under a blanket. BUT, I gradually began to improve. I take supplements that are loaded with natural anti-inflammatory extracts and eat foods that do the same.

Now, back to your dad, Julie. One of the best things that was prescribed for me was pulmonary rehab. Mine was an 8 week course that I attended at a hospital nearby. There were 6 others in my class that attended 3 mornings a week. We learned about our diseases, what to expect and taught how to exercise appropriately for our limitations (so important). It was so cool to watch each other improve over that period of time. Now, each one of us who suffer from IPF is different, but there is hope when it comes to managing our symptoms. I applaud you for taking an interest in helping your dad. I know he appreciates that assistance.

Patsy

[Patsy]

I was diagnosed in September of 2015 and am on supplemental oxygen. The progression of my fibrosis has slowed. Although anxious about it, and with the help of this forum, have recently taken my first airplane trip to Mexico. I would like some topics to be how nutrition helps and hurts; adjusting medication and activities when feeling weaker; exercise and rest; how to treat when getting the flu or pneumonia; and alternative supplements.

[Patsy]

Hi Kathie,
Your husband is so lucky to have tou in his life sharing this journey. Cuz it is a journey. When I was diagnosed I lived alone. Don’t get me wrong, I wasn’t actually alone. I had a great support system of friends but most were still working and others lived about 4 hours away. Initially, I was so sick that simple things were hard if not impossible to do. Luckily, I enjoyed the friendship of neighbors who came to my assistance at a time when I most needed help. What I can tell you that I discovered during my journey (3 years) is that feeling of overwhelm is only temporary and like most difficult challenges in life, we adapt. Once I got over the deep depression, which took about 5-6 months, I started accepting my situation. The medicine/treatment started working and I began to get my life in order. Reaching out is a great first step. If your husband can get to pulmonary rehab, you can join him. It teaches you about this disease, shows you ways for coping and gets you excercising to help with the inactivity that plagues us. My insurance paid for it and his pulmonologist needs to prescribe it. It worked wonders for me.
Hopeful for you,
Patsy

[Patsy]

Frank, Oxygen levels that low is dangerous if sustained for very long. It puts a strain on your heart and deprives your brain of much needed oxygen to think clearly in that moment. I carried a portable tank whenever I left the house for any task as the activity of walking had my numbers go lower than 90, which is your target number to stay above. I found that while it took some getting used to, it allowed me to remain active for longer periods. It’s been 7 years since my diagnosis and I’m doing better. I’m able to go to the grocery store without the supplemental O2 along with other activities as long as they are short in duration. I just use it at night or when I have cold/flu symptoms to help me get thru the day. Thank you for bringing this subject up and I wish you the best of health going forward.

Patsy