@csbarm
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Christine replied to the topic The Impact of Spreading Random Kindness in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 10 months ago
While I have been very fortunate to have received a single lung transplant (I still have IPF in my left lung) , while I using lots of oxygen I kept attending my art league meetings as long as I could. Another member, Maria, would always insist on carrying my art materials and one of my oxygen tanks (I needed 2 E tanks for the meeting). She…[Read more]
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Christine posted an update 4 years ago
I saw on someone’s post about the use of Vaseline or nasal saline to keep the nasal passages moist. When I was on very high O2 my nose was always dry and got frequent nosebleeds. Then I found out about nasal saline gel. The name brand is Ayr but I found that pharmacies also sell a generic version. It keeps thd nasal passages moist longer than…[Read more]
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Christine posted an update 4 years ago
Charlene I saw that you booked your bucket Hawaii trip. Happy to hear that. It’s been 9 months since my right lung transplant and thank God I am still doing well. Of course I still have IPF and emphysema in my left lung. Cancer was detected in my left lung as well. In January I had a wedge resection in that lung and then radiation surgery. I’ll…[Read more]
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Christine replied to the topic Patient Support Group Poll in the forum Polls & Quizzes 4 years, 9 months ago
The support group near me meets only 2-3 times a year at Yale New Haven Health Services. At the meeting in March 2018 I learned that Montefiore Medical Center had just started a lung transplant program. I had already been evaluated and turned down by Brigham and Women’s hospital as a poor surgical risk. I came home from the meeting and called…[Read more]
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
Hi Steve, my name is Christine and I have IPF. While being evaluated for a lung transplant I attended pulmonary rehab therapy. One of the things taught was climbing stairs. They said deep breath in and go up 2-3 steps as you exhale. Stop and inhale, go up more stairs while exhaling. I don’t know how impaired your breathing is but I’m very…[Read more]
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
Online Walmart. I don’t know where it’s shipped from, but any result I get would be in u.s. dollars. I assume when you search Wal-Mart online your responses would be in Canadian dollars. I was I just trying to find one for you.
Nice day here, but hot and fairly humid.
Regards,
Christine
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
I searched “Walmart oxygen D cylinder backpack” and the a result was a backpack from Roscoe Medical for US $29.95
There are other sites out there with backpacks. Hope this helps you find one.
Sincerely,
Christine
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
Good morning Charlene.
I don’t have any backpacks for carrying the oxygen tanks. I don’t think it would be practical for me anyhow since I frequently need to have 2 tanks with me. Also it would be easier getting in the car with just the shoulder strap. I slip it off my shoulder and stand it on the floor next to my left leg while driving. You…[Read more]
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
If you have someone who can use the Esbriet I will be to mail it to them.
Yes, I still drive. I always have a full rack of D tanks (12) in the car. I have 3 of the carry bags for the tanks. I now have to bring 2 tanks into he grocery store if I’m doing a full shopping. I just hang them on the shopping cart. Fortunately I’m a pretty strong…[Read more]
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
I’m fine with you posting that I have a new, unopened bottle of Esbriet (270 capsules) if anyone currently taking this would like it. I’m not trying to sell it, but I would love to give it anyone who could use it. I don’t know what people are paying for this but it is very expensive.
I just happen to be one of those for who does not help. I’ve…[Read more]
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Christine replied to the topic Best way to take Esbriet in the forum Esbriet (Pirfenidone) 4 years, 11 months ago
I took Esbriet for about 18 months. I always took it after a full meal. At first I had a little stomach discomfort that didn’t last very long. Eventually I only occasionally had a little heartburn that a little milk would immediately take away. The SUN was not my friend. Any skin not covered or protected with SPF 50 would burn and break out in a…[Read more]
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Christine replied to the topic Keeping Track of Appointments with Pulmonary Fibrosis in the forum Upcoming Medical Appointments: Q&As 5 years ago
My phone is a LG android, not an iPhone so I can’t make any suggestions for yours.
I also take Omega3 everyday. It was the nutritionist that suggested it for overall health.
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Christine replied to the topic Keeping Track of Appointments with Pulmonary Fibrosis in the forum Upcoming Medical Appointments: Q&As 5 years ago
I have definitely noticed a decline in my previously excellent memory, which is frustrating. I now rely on the calendar in my cell phone utilizing the reminder feature. Everything goes into my calendar.
I also use the alarm on my cell phone to alert me when it’s time to take my pills. I take Esbriet which must be taken 3 times a day. I normally…[Read more]
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Christine replied to the topic How Pulmonary Fibrosis Impacts Patients at Various Life Stages in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 years ago
Hi Terry, I commend you for your determination to stay independent. I am 72 years old and was diagnosed with IPF 2 years ago quite by accident. I had had breast cancer (very early stage) and a simple lumpectomy took care of it. The surgeon required that I followup with consults from both radiology and medical oncologists. It was seasonal allergy…[Read more]
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Christine replied to the topic Diet and Exercise as a PF Patient in the forum Living with Pulmonary Fibrosis: 50+ 5 years, 1 month ago
Wow, you are so young to have to adjust your lifestyle to accommodate your disease. In perspective I have been fortunate to have enjoyed an active life for 70 years before my diagnosis. That was 2 years ago. I still stay as active as possible but it is difficult when you have to carry a lot of O2 with you.
While I was dieting I mostly just e…[Read more]
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Christine replied to the topic Diet and Exercise as a PF Patient in the forum Living with Pulmonary Fibrosis: 50+ 5 years, 1 month ago
Hi Charlene,
I did write down my daily weight and everything I ate for the entire time I was dieting. It was the only way I could be sure I as accounting for everything I put in my mouth. You know how easy it is to forget that “spoonful of ice cream” or those “couple crackers” you ate to satisfy your cravng or hunger. Those things add up if you…[Read more]
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Christine replied to the topic Diet and Exercise as a PF Patient in the forum Living with Pulmonary Fibrosis: 50+ 5 years, 1 month ago
I know how hard it is to diet and exercise with IPF. I did very well last year but I was very motivated trying to meet the BMI requirement for a lung transplant. I met the goal but was turned down anyway for other reasons. I had lost 18 pounds in 3 months. In the last 6 months I have gained back I pounds but have been maintaining my weight. …[Read more]
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Christine became a registered member 5 years, 1 month ago