[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 continued to do this for as long as I was able to go to the meetings. I didn’t really know her before this.

 

[Christine]

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 Montefiore and told them my his Tory. They asked me to have my testing results sent to them from B&W.  Within a week or so they called for me to come down for evaluation. They did a few more tests and put me on the transplant list on 4/23/2018. On 8/14 I received a right lung! Within 24 hours of surgery I was on room air and walking. I’m home now and doing very well.

[Christine]

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 impaired (15 liters if I’m doing anything but sitting!) so this works for me. Regards, Christine

[Christine]

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

[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

[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 can find the backpacks online. More are available for the smaller C cylinders but they are also available for D cylinders.  Hope you find one that works for you.

Regards,

Christine

[Christine]

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 person.

It is actually very nice weather here (Connecticut) today. It’s 80F and not too humid. It’s forecast to get hotter and more humid the next couple of days. I’m going to sit outside for awhile.

Always happy to hear from you,

Christine

 

 

 

[Christine]

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 been on oxygen just over 1 1/2 years and have gone from using 2 Liters when I walked, etc. to my current 8 liters at rest and 15 liters to walk, shower, etc. I still go out and maintain as much activity as possible, I just have to bring lots more O2 with me. It sucks but it’s better than giving up more quality of life than necessary.

If you don’t have one, be sure to get a good sun hat.  I bought a Scala Women’s  Cotton big brim hat with upf 50+ protection online and I love it. It comes in many colors. Hope you enjoy the beach. I am so looking forward to being in the sun!

[Christine]

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 rash in a short time.

So while I was fortunate that I tolerated Esbriet well  it wasn’t effective for me. Of course, I had just received via Fedex a refill from my speciality pharmacy when my doctor’s unsaid not to take it anymore. No sense enduring the side effects when I’m not benefiting. I hadn’t even opened the shipping package but the pharmacy won’t let me return it. It’s policy.

Bottom line I have an unopened bottle of very expensive Esbriet (30 day supply, 270 capsules) that will go to waste. If anyone wants them, let me know.

[Christine]

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.

[Christine]

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 keep at least a day’s worth of pills with me when I go out so I am prepared when the alarm goes off.

[Christine]

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 time for me so there was quite a lot of sniffling and coughing going on. Since many years ago I had been a smoker the medical oncologist ordered a chest Cat scan to check for cancer. They showed no cancer but he said my lungs were in terrible shape. I was referred to a pulmonologist and was shocked to find out that I had IPF and was told I qualified for supplemental oxygen! 3 months before that I had been downhill skiing.   At first I was very emotional and cried fairly often at the prospect of dying “in 3-5 years”.

I resisted getting the oxygen for several months. After returning from a month long camping trip I couldn’t resist any longer. I started with 2 liters and didn’t  Use it all the time. I am now at 8 L 24/7. Even this isn’t enough for many things like walking uphill or stairs. Fortunately I have a wonderful husband who does so much for me.  I still do as much as I can I just have to bring plenty of O2 with me. I go shopping and out with friends and I belong to an art league and take art classes. I use to go to the gym 3 times a week and travel a lot. I still exercise at home to try to stay in good physical shape. I have a treadmill, mini cycle, and free weights. I have to use much more O2 while exercising. One pulmonologist told me I had a 1 in 2 chance of being alive next year and a 1 in 4 chance of being alive in 2 years without a lung transplant. Fortunately, after having been turned down by 2 hospitals I have finally been listed for a transplant.  All the testing has revealed I am in otherwise good shape and my goal is to stay that way until my number comes up for new to me lungs! Admittedly it is harder to do requiring more O2 to do everything. I try to keep my spirits up and look for humor in as much as possible.

I am now hopeful that I will live long enough to see my oldest grandson graduate from high school. He’s currently a freshman.

I think keeping a positive attitude is the best coping method . I don’t give up anything without trying first.

No matter what stage of life you are in, this is a cruel disease. I am especially sorry for young people whose life is greatly affected by ILD.

 

 

[Christine]

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  endured to hunger until my body finally felt satisfied with less food. I would drink water to help me feel full and lessen the craving to eat. I could only suggest that you have some cut up veggies to snack on when you must eat something.  I have been fortunate that medications have not made me nauseous.

You didn’t say what kind of work you do but any kind of exercise you can get during the day is helpful in both burning calories and keeping you fit. If it’s sitting at a desk just standing up and sitting down several times in a row increases your heart rate and strengthens  your leg muscles. This can be done several times throughout it day. It also encourages good  circulation.

Wishing you good health,

Christine

[Christine]

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 ignore them. I kept a small note pad with the info.  If my weight went up I could see why. Sometimes it would be water weight if I had eaten too much salt. In any event I would be more careful of what I ate until my weight dropped. It worked for me.

Since you said you get fatigued after a full day of work, you must still be employed. I am a retired senior citizen. But I still try to stay as active as possible. I still do housework, grocery  shopping and go to my grandsons’ sports games. Although not as much as I used to. My husband has really stepped up to make life easier for me. I also belong to an art league and take 3 art classes a week. I just have to carry a lot of O2 with me. I’m not ready to just stay home. The important  thing is to keep moving particularly if you’re  older.

 

[Christine]

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.   When I was dieting, I didn’t count calories. I just stayed away from sugar and carbs as much as possible. I use to eat bacon and eggs with toast frequently for breakfast. I stopped the toast and only ate some bacon once in a while. I usually ate a salad with grilled chicken or some other protein for lunch with balsamic vinegarette. Other times I would make a shake with some plain, 0% fat Greek yogurt, a little milk, and blueberries. Or if I wanted a more savory flavor, I would use sundried tomato and basil instead of fruit. I would add collagen peptide powder for extra protein. It dissolves easily and has no flavor. For a snack I might eat a sliced apple with a tablespoon of natural peanut butter.  Dinner would be whatever I usually would make (protein, veggie, and starch) I would just eat a smaller portion and not deny myself. If I are dessert, it would be a sugar free pudding or jello cup.

The biggest help was that I wrote down EVERYTHING that I ate. I also weighed myself every morning before breakfast for the best comparison.

At that time I was going to a pulmonary rehab twice a week to exercise. I began exercising using 6L O2 but couldn’t exercise hard enough to be effective at that rate. I eventually got up to 10-15L with a mask to workout. Once I got turned down for the transplant, insurance didn’t cover it any longer.  I now exercise at home with a treadmill, mini-cycle which also works as an arm bike and I have Thera bands and small free weights. When I exercise, I use a mask and 12-15 L O2.
I Fortunately I have been accepted into a different transplant program and have been listed a couple of weeks ago! I can maintain an O2 sat of 92-93 on 2L if I am sitting still. However, if I stand up and walk I need minimum 6L if I move real slow but 8L is better.  Currently seasonal allergies are making breathing much more difficult.