Christine

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]

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]

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]

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

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

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]

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]

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]

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]

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.

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]

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]

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]

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]

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]