Marianne
Forum Replies Created
-
Hi all –
It is something you need to discuss with your doctor. I would suggest going on antifibrotics as soon as possible. I was diagnosed with IPF in May 2019 and was started on OFEV a few months later. So far it seems like the OFEV is keeping my lungs stable. Usually I tolerate the medicine pretty well. Occasionally, I have a flare up and have to add steroids for a bit. I also have GERD, HP, Type 2 diabetes, hypothyroid. In March 2021 started on supplemental oxygen on exertion.
Hope this helps.
Marianne
-
Hi all –
I have IPF – diagnosed in May 2019. Taking OFEV. In 2021 – I had 3 episodes when coughing up thick foamy mucous. Pulmonologist prescribed steroids. He said it was a slight flare up.
Hope this helps. I usually have a dry unproductive cough. I also have GERD.
Marianne
-
Hi Michael –
I have 2 adult children. My youngest, a son & his wife, were with me when I received the diagnosis from my pulmonologist. I was diagnosed in May 2019 after 8 months of testing. One bright spot on my diagnosis day before my appointment they told me I was going to be a grandmother for the first time in January 2020. My grandson arrived in December 2019. My children, now 35 and 40, still don’t like to discuss my disease. They know it is a serious, chronic disease. My youngest was really concerned and upset when I had to start oxygen in March 2021. He and his wife had recently lost her grandmother to lung cancer. She had been on oxygen for a few years. Right now my disease is stable and I only use oxygen on exertion. I do not yet need it at night. Both are aware of what this disease does to people. My oldest, my daughter, a veterinarian, has many friends in the medical field who she frequently reaches out to find out extra information about IPF. She actually reached out to a local cardiothoracic surgeon before my lung biopsy. She lives in different state than me. Hope this helps. I think the sooner you tell your children is better. Good luck.
Marianne
-
Hi – I believe different transplant centers have different requirements. I know that Ohio State University – Columbus, OH has a cut off date of age 70 for a lung transplant but I have heard that isn’t always a firm decision. I am quickly approaching that age. I believe other centers will transplant up to age 72-73. I do know that OSU is doing some research into using lungs from people who have drowned for transplant. If centers are keeping firm on cut off dates based on age many of us might age out before needing a transplant. This is just one small consideration for a transplant.
Marianne
-
I used to have cats and both my adult children have dogs or cats. I do not have any animals now. When having tests to determine which ILD I had it was discovered that I am highly allergic to dogs and cats. So with having lungs issues I decided not to have any animals in my home. Hope this helps.
Marianne
-
Hi Annette –
I was diagnosed with IPF in May 2019 after a lung biopsy. It was a few months until I started on OFEV. I have had a few stomach issues but nothing major. I found with OFEV you need to definitely make sure you space the morning and evening doses 12 hours apart. I am now on 2 lt of oxygen on exertion. My lungs have been relatively stable for 2 years. I have portable oxygen and take it when I travel, go to the gym and shopping. I do not yet required oxygen at night or 24/7. Everyone has to make their own decision regarding medicine for any lung disease. I feel that OFEV has kept my lungs stable over the past 2 years. I was more concerned with going on oxygen than taking the medicine. I have been on steroids a few times when I had a flare-up. I am not a fan of steroids. Hope this helps. Enjoy your trip.
Marianne
-
Hi all –
Ordered the book in early December. It has been shipped and should arrive this Saturday. Not sure why it took so long to be shipped. Looking forward to reading it.
Marianne
-
Hi all –
Not sure but think both Esbriet and OFEV require prior authorizations before patients can get either of these medications. I live in the US. I have been on OFEV for 2 1/2 years and I have a prior authorization that is good through the end of 2022. I assume this is something your doctor fills out to show that you medically “qualify” for these drugs. Both these drugs are very similar in costs and co-pays are very high. I am on Medicare but was not when I began taking this OFEV and the co-pays were very high. Hope this helps.
Marianne
-
Hi all. I believe in some of the public libraries in Ohio you can pick up a self-test free of charge. Here the self-tests are flying off the shelves. Stores and pharmacies get them in a couple times a week. A few hours later and they are sold out. I believe the cost of these is around $25, if you can find them.
Marianne
-
Hi Wendy –
We missed you. Glad you are feeling a bit better. Have you tried any over the counter nasal sprays? I use Simply Saline Nasal Mist by Arm & Hammer. It is drug free. It seems to help me. I don’t get any sore throat from it. I only use it as needed. Also, have sometimes use a saline gel and a lubricating gel which is water based. I use these to help keep my nose from being so dry with the oxygen.
I do not currently take any medicine for my cough but I am considering it as my cough has been increasing recently. Many of the cough products doctors in the states prescribe are pretty powerful. I don’t want to take any more medicine than is absolutely necessary. Pretty sure from last PFT and 6 MN walk test that doctor will be increasing my oxygen.
Marianne
-
Hi all –
Time for another pulmonary visit this week. Last week had arterial blood gas (ABG), high altitude simulation test (HAST), PFTs, liver panel blood draw and 6 MN walk test. Assume by results I will need to increase my oxygen levels as dropped to 84 during 6 MN walk test. PFTs dropped slightly. DLCO is still extremely low. Will let you know what doctor says about the tests.
Take care and stay safe.
Marianne
-
Hi everyone –
I was diagnosed in May 2019. Began taking OFEV later in 2019. Take 150 mg 2 times a day. Very few side effects. Occasionally, I have a couple of days of loose bowels. It seems like the OFEV has been keeping my IPF fairly steady until this year. My last two PFTs haven’t been great. After PFTs and 6 MN walk in February I started on 2 lt of oxygen on exertion. See pulmonary doctor on Thursday. I am assuming from latest 6 MN walk and PFTs tests that doctor will increase amount of oxygen. 6MN walk test was great for distance 1,950 feet (prior one was 1,700) but dropped oxygen level to 84 while on 2 lt of oxygen. Do not yet need oxygen 24-7 or at night. I am also coughing more. Sometimes now coughing up thick mucous. I also have high blood pressure, acid reflux and Type 2 diabetic. I have been walking more and going to the gym almost daily. Try to eat a healthy diet. Also have liver blood panel pulled every 3 months because OFEV medicine can damage your liver. So far my liver panels have look good. Slight decrease in numbers on PFTs this time. Looking forward to what the doctor thinks of recent tests. Also had an ABG and HAST to see if I can fly in airplane without oxygen. Pretty sure the answer to that is going to be no as I dropped my oxygen level under 89 after 5 minutes of breathing air similar to an airplane.
Marianne
-
Marisa –
I wanted to welcome you to the forum. Unfortunately, I don’t have answers to any of your questions as I have IPF and on oxygen on exertion. I understand about your numbers going down. One of mine PFT numbers took a drastic drop in February so oxygen was added. Hopefully, someone on the forum will have some answers to your questions. Hang in there.
Marianne
-
Joe –
It is a personal choice. Some people cannot tolerate some of the IPF meds. After talking with my doctor, I decided to take OFEV over Esbriet. My reasons for this were that some people who take Esbriet have to be extra careful when out in the sun. I do not live in a sunny place (Ohio) but have family and friends in FL who I enjoy visiting. That was put on hold because of Covid. Also OFEV is taken 2 times a day – AM and PM – 12 hours apart. Esbriet is taken 3 times a day. I am taking OFEV 150 mg and tolerate it with very few side effects. So far it is working for me. I have tried to get enrolled in a few clinical trials in which you can stack while using OFEV or Esbriet. So far trials I have tried have already closed to new participants, Found some recently which are in my area which I need to check out. Hope this helps.
Marianne
-
Hi all –
I always have a dry cough. I have IPF as well as GERD. Last week cough became a very deep bronchial and I began coughing up thick white colored phlegm. He prescribed steroids for 7 days. He knows I am not a fan of steroids as I have had adverse results from them in the past (before IPF). He prescribed 20 mg instead of 40 mg. He told me to watch out for yellow, green or brown colored phlegm as that would mean I would mean I had an injection. Also little energy and little appetite but no fever. My coughing gets worse as the day progresses and is much worse at night (probably because of the GERD). Doctor asked me if I was around anyone who was sick. My grandson has a cold and had an infection on his hand last week. So I am guessing that I picked up something from him. The cough reminds me of when I have had bronchitis but that was pre-IPF.
Still alot of coughing today but only on meds for 1 day so far. Hope it gets better quickly.
Marianne
-
Hi arice –
I was diagnosed 5/19, am on OFEV 150 and supplemental oxygen on exertion. I have issues with rash usually on arms, legs and sometimes on my chest. This rash comes and goes. It is quite itchy. I am not sure if it is related to the OFEV as I have in the past had eczema and was advised by dermatologist to avoid soaps, laundry detergents and basically anything with any type of scent. I switched to using Cetaphil Pro Restoraderm eczema moisturizing shower gel and a moisturizer. I also watch what I eat as doctors feel it might be food related. I have allergies but no known food allergies. Before switching doctor prescribed a cream to put on the rash. Hope this helps.
Marianne
-
Hi everyone –
I got back into doing crafts more since retirement and my IPF diagnosis. Things I make –
1. Fabric gnomes – usually make the hats out of t-shirt or stretchy material. Made some for family with different hats so can change hat with the seasons.
2. Ceramic coasters with paper napkins or fabric.
3. Resin art pictures with seashells, sand, alcohol inks, artificial flowers, etc.
4. Made lots of face masks during Covid – for family & friends
5. Made fabric dog scarfts and bowties, too.
Going to go to some local art shows this year.
Marianne
-
Hi everyone –
I was diagnosed with IPF in May 2019. All my PFT and 6 minute walk tests were good until Feb. 2021. On those tests I drastically dropped my DLCO levels and 6 MW test I dropped oxygen to 86. Doctor prescribed oxygen on exertion – 2 lt. I finally got a POC (portable oxygen concentrator) which I take when I go on long walks or to the gym to exercise. I see my pulmonologist as well as primary care doctor every 6 months. Have blood work every 3 months and PFT and 6MW tests every 6 months. I always take a list of questions to all doctor visits plus I keep in touch with my pulmonary doctor by email and phone as needed. If you have a doctor who is not listening to you, please find another doctor who listens to you and answers your questions. Mine is very knowledge concerning IPF. Also, if you can, it helps to take someone with you for office visits. I realize this might not be possible right now because of Covid restrictions. I live in Ohio and mask orders have been removed except not at hospitals and doctor offices. Hope this helps everyone. Have a great day.
Marianne
-
Hi everyone –
I finally received my POC which the doctor ordered back in March. I just got it last week. My oxygen supplier transferred me to another branch of their company. This one is even further away from where I live but it seems as this new branch is much willing to provide good customer service.
Another thought about exchanging equipment. If people live near a church or non-profit that loans out medical equipment free of charge to people, have them ask if they have POC’s available. My local church in Ohio has a Helping Hands Ministry which lends out hospital beds, wheelchairs, walkers, etc. They don’t normal have POC’s but someone recently donated one to them and they have it loaned out to someone in the community. When they no longer need it, it will be returned to the church to be lent out again. Not sure how many churches or non-profits provide this service. My church delivers and picks up the larger medical equipment. The people that use this service are so appreciative that it is available. Their is no charge to borrow any of the equipment.
As far as travel some of the oxygen supply companies in the US can help people who are traveling secure oxygen when they reach their location. My supplier is based out of FL and stated that they could set me up with home oxygen after arriving at my destination. They requested a 2 week notice before I traveled. I am planning a trip to FL in the fall. Right now I only need oxygen when exercising or on long walks. I went to the gym yesterday and then later walked outside. I would not have been able to do this with supplemental oxygen.
Hope everyone has a great day.
Marianne
-
I was told to contact my electric company to inform then that I am using oxygen in case there is a power outage. I know some people have generators in their homes. My oxygen supply company gave me portable tanks of oxygen as a back up in case the power goes out.
Marianne
-
I have never thought of contacting my insurance agent regarding using oxygen. I only use oxygen (a POC) when I am out and about. At the present time I do not use oxygen at home during day or night. I have a question about using oxygen when I am out and about. My doctor prescribed 2 liters on exertion. Recently when walking with 2 liters I have been dropping my oxygen to 88-89. I sent an email to my doctor. I am assuming that I need to up the amount of oxygen. I am wondering if the high temperatures we are currently having in Ohio are affecting my oxygen levels. Temperatures here are high 80’s and low 90’s. I don’t do well when temperature is too hot or too cold. Since I have only been using oxygen a short time I thought I would check to see if anyone else has experienced this problem. Thanks much.
Marianne
-
Hi Lora Lee –
Have you tried any receipts by Forks Over Knives. They are vegan so not vegeterian. I have found some really good recipes on their web site. I was eating strictly vegan for awhile, felt better and lost some weight. I got away from it. I am not found of soy so that limited some of my meals. I ate alot of beans for protein. I even carried black beans and kidney beans with me to restaurants to add to salads (this was pre-Covid). But salads are basically raw vegetables. Hope this helps you a bit.
Marianne
-
So sorry for your loss.
Marianne
-
Hi all –
I was diagnosed with IPF in May 2019 after a VATS lung biopsy. All other testing only told doctors I had a possibility of 3 different interstitial lung diseases. I have been taking OFEV since mid 2019. I take 150 mg twice daily. I tolerate it pretty well. All my PFT and blood work have been fine until Feb. 2021. My PFT showed a sharp decline in my diffusion levels. I recently started oxygen upon exertion. I was tested to determine if I needed it at night. Presently, I do not need oxygen at night but I am getting close. In the states to qualify for oxygen at night levels must drop into the 80’s or lower and stay there for 5 minutes. I was recently approved for a POC and still waiting on its arrival. I finally got some mini oxygen tanks I can carry on my back or on my shoulder. Most of my PFT numbers have stayed fairly steady until my diffusion levels dropped. Had more testing to rule out pulmonary hypertension. Planning to fly to FL in fall to visit relatives and friends. In late summer, I will have more tests to determine if I can fly with out POC. I will have an ABG and a high altitude stimulation test. I am not sick enough to be considered for a lung transplant. Might age out before I need a transplant. I will be 69 this year. My center usually has a cut off age of 70 but pulmonologist said that is not always the case. Hope this helps.
Marianne
bg