• New with so many questions

    Posted by Margo on March 11, 2024 at 9:12 am

    Hello, I am new here. My husband was diagnosed with IPF the week before Christmas. (Merry Christmas, right?) We went through the shock the first month or so. He started on OFEV shortly after being diagnosed. I am trying to get our house cleaned up so the air is better for him. We had our old carpet removed this last weekend and I purchased a couple of air purifiers. He quit smoking a few weeks before his diagnosis, but his Father, who lives in our basement, smokes and I am wondering if that is hurting my husband. I know he should be eating a healthy diet, but I can’t take his chips and beef jerky away from him. That would just be a fight. He wants to start getting things checked off of his bucket list, so I’ve been looking into going to Hawaii. But I read he needs to stay away from areas that have high elevations. I want to do everything I can to help him, but he thinks I am being anal about it. So many questions. Are there any other caregivers here who can give me some tips?

    Margo replied 3 weeks, 1 day ago 15 Members · 23 Replies
  • 23 Replies
  • MKE

    Member
    March 12, 2024 at 2:31 pm

    Hi Margo,

    I heard the list of things that you were trying to do for your husband. You are trying to do everything all at once, and it doesn’t sound like you’re doing anything for yourself. Maybe he doesn’t want his life and that way. If you’re trying to do every thing all at once, it’s hard to do any of them well. my recommendation to you is to pace yourself. It’s not a sprint. It is a journey you can’t help. Take care of your husband if you don’t take care of yourself. As for your father-in-law smoking in the basement, for me, that would be a hard no way. However, there’s always outside. Don’t forget to breathe. Fatigue is a huge part of IPF, perhaps you are trying to help, but for him it may too much all at once. I wanted water chestnuts OK

    • Margo

      Member
      March 13, 2024 at 9:24 am

      Hi Mike,

      Thank you for your reply. It’s funny, somebody else told me the same thing the other day that I need to take care of myself and I replied with “how do I do that”? You’re right, I do try to do everything all at once, but it is out of love for my husband and I feel like I am doing everything in “my” power to keep him healthy and with me longer. I will take your advice and slow down a little bit and enjoy the time we have together, especially before this horrible disease progresses.

      Thank you,

      Margo

      • david-bennett

        Member
        March 19, 2024 at 2:33 pm

        Oxygen is about 21% throughout the atmosphere, but air density and pressure decline with altitude. The reduced pressure results in all atmospheric gases being reduce roughly equally. So you are correct in that with a slight correction as to why. Stay within a range that your activity level and atmospheric + supplemental oxygen keep your sats at a reasonable level.

      • david-bennett

        Member
        March 19, 2024 at 2:52 pm

        Regarding another question about oxygen and flying, you should definitely consult you pulmonologist, an hour after take off is not the time to discover that you need oxygen. Not needing supplemental oxygen at sea level is not the same as normal. Your lungs have a huge reserve capacity that needs to be lost before you need oxygen. And you don’t know how much you’ve already lost.

  • jud

    Member
    March 12, 2024 at 3:41 pm

    Regarding avoiding high altitude it’s a big deal

    a little science…O2 at sea level is around 21%. At 7000 ft above sea level it drops to around 15%…. big difference.

    Side story… I took my son skiing at Taos New Mexico last March. I felt out of sorts as soon as I landed as the day progressed it got worse and started to look gray and feeling dizzy. My buddy suggested I go to the medical tent. They checked my out. I explained I had IPF and that I had a heart attack 2 months earlier ( dr’s said big side effect of OFEV was cardiac issues) ….daaaa… now you tell me.

    When I told this to the nurse she looked at me and said… and I quote ” what are you.. a dumb ass”. She was right.

    I was sent by ambulance to the base of the mountain. It took me a few days to recover. On top of that the hospital forgot to plug me into wall O2. The cleaning guy pointed it out to me.

    You learn to smile thru the rapids 😀

    Jud

    • Margo

      Member
      March 13, 2024 at 9:57 am

      Hi Jud,

      Thank you for your words of wisdom. My husband is not on oxygen yet, so hopefully we won’t have any problems with traveling to Hawaii in September. I guess time will tell. Good luck to you and thank you.

      Margo

      • Babe

        Member
        March 19, 2024 at 6:15 pm

        Before he flies it would be a good idea to get a High-Altitude Simulations Test (HAST) to confirm it is safe. The airlines are not happy with people who get on a flight and then need oxygen they could have planned for. It could hurt your return flight.

  • david-ota

    Member
    March 12, 2024 at 5:44 pm

    Hi Margo, I was diagnosed with IPF back in 2011 so I have quite a history with IPF. I read your post and chuckled. I have some insight into bucket lists and diet that my caregiver wife may not completely agree with so take it with a grain of salt 🙂

    If you take away your husbands chips and beef jerky he may or may not live longer, but each day will seem much longer and less fun. I personally recommend cheese burgers and bacon ranch fries. Losing weight is an idea though, since IPF is progressive so carrying extra weight is harder everyday.

    Bucket lists are great. Flying with oxygen is not. If he’s not on oxygen, traveling is much easier. The airlines can get pretty strict with extra batteries and such on a plane. High altitude did not affect me greatly while I flew with IPF, I flew right up until I got a lung transplant, your mileage may vary. I have heard of altitude triggering Acute exacerbation of IPF, it did not for me. If you’re going to go, now is better than later. I recall Charlene Marshall, one of the moderators on this forum going to Hawaii with IPF several years ago. She may have advise on bucket lists and travel.

    Smoking was awful for me, It would trigger coughing fits when I was around it. Coughing and IPF pretty much go hand in hand. I would cough so hard I would pull muscles in my back.

    Good Luck

    Dave

    • Margo

      Member
      March 13, 2024 at 10:03 am

      Hi Dave,

      I understand about not being able to eat what you want. I just tell him sometimes he should dial back on the junk food. I know how hard that is because that’s what I love to eat too.

      Since my husband is not on oxygen yet, I am hoping it will be a smooth trip in September. Do you think we should get oxygen for him in case he needs it on the flight?

      Thank you for replying.

      Thanks,

      Margo

  • john-fraze

    Member
    March 12, 2024 at 6:10 pm

    Hello Margo,

    My name is John. I have had IPF for 7 years. I have been taking OFEV for over 5 years. I also have a heart condition know as Afib.

    I have been to Hawaii many times. If you do go to Hawaii you will need to fly. Planes are all pressurized for 8,000 feet. So it feels like you are at 8,000 when you are really at 35,000 feet. People cannot survive at 35,000 feet, not enough oxygen but most people do quite well at 8,000 feet. So if you go to Hawaii your husband will likely need a portable oxygen concentrator. They run on a battery and you will need enough battery to last 20 hours. 150% of flight time. Most state university hospitals have a booth that can measure the amount of oxygen you need @ 8,000 feet. Medicare bought me one but it’s not suitable to take on an airplane as it was the size of a suitcase and had to be plugged in. I bought my own portable oxygen concentrator. They are expensive, $3,000 including the extra battery. You will need an Rx to buy one. The small battery powered ones are about the size of a book. The weight about 6 pounds including the battery.

    You father in law should, smoke outside or at the very least get a purifier for his space. Costco has good ones on sale for $99 for a few more days.

    Done for the day. Good luck.

    John

    • Margo

      Member
      March 13, 2024 at 10:07 am

      Hi John,

      Thank you for the information. Is your Afib caused from the OFEV?

      If my husband is not on oxygen yet, do you suggest still getting some to take in case he needs it on the long plane ride?

      We live with and take care of my father in law, so it’s hard for us to ask him to not smoke, but I will look into getting an air purifier for downstairs.

      Thank you,

      Margo

      • john-fraze

        Member
        March 17, 2024 at 7:45 pm

        My Afib was not caused by OFEV. I’ve had Afib for over 20 years.

        One of the side effects of OFEV is diarrhea, Imodium helps control the diarrhea and can be purchased at Costco for a much cheaper price.

        Also, if the diarrhea is very severe the his doctor might lower the dose from 150 milligrams twice per day to 100 milligrams twice per day. Also, important to take the dosage as close to 12 hours apart as possible, that will help cut down on the diarrhea some. I’m told that smaller people can take the smaller dose and still get full benefits from OFEV.

        A caution about oxygen. Don’t take more than is prescribed because there is such a thing as oxygen toxicity. In other words too much oxygen is as bad for you as not enough. Google oxygen toxicity or go to the Mayo Clinic website and look it up.

        Oxygen concentrators are considered durable medical equipment by Medicare and if you are on Medicare your doctor can get you one delivered to your house for free. Insurance companies may furnish them too, I don’t know. And they can be rented for short periods of time.

        I have probably overloaded you with information.

        Until next time. Goodnight.

        John

  • david-ota

    Member
    March 14, 2024 at 12:40 pm

    Hi Margo

    If your husband is not on oxygen, as a complete non medical professional, he probably does not need it in a plane. I flew for years w/o oxygen at the start of my IPF. It is a pain to lug and keep charged. I was on O2 at night from the start of my diagnosis, but traveled without it. I had to buy my own portable O2 concentrator, I recall it being $2000-$3000 10+ years ago.

    I found, walking slow and having patience with myself worked wonders.

  • Sandyman

    Member
    March 14, 2024 at 2:21 pm

    Hello Margo, It is my understanding you need a prescription from your doctor to obtain an oxygen machine. I had to have one. Your Doctor would be your best resource for advice for oxygen. IPF conditions can vary. I needed oxygen before I was even diagnosed and I didn’t know it. Good luck to you and your family.

  • don-moffett

    Member
    March 14, 2024 at 2:37 pm

    Hello Margo,

    Understand your concerns. Saying that, Ofev is an excellent manager, he will learn what he can eat or what will have a reaction with Ofev, it is a bit unforgiving. He needs to keep his weight up, so if he can eat jerky and have no adverse reaction, let him, my opinion. As far as travel, I am planning a trip that requires air travel, I talked to my doctor so he ordered a high altitude test and determined I would not have a problem. He said I would notice a minor difference and I should carry my inhaler and use it if I need it. The key recommendation I would make is that he take daily walks and keep active. It is a journey, Ofev and his body will manage him. As far as his dad, he needs an air filter in the basement, I don’t allow smoking around me at all.

  • jonathan-poland

    Member
    March 14, 2024 at 3:25 pm

    Hi Margo, It is quite a shock when you discover that a loved one has a serious disease. I’m sorry you are suffering through that shock. But this is a long-term illness and you and your husband will get through it.

    Here are random thoughts:

    I’ve been on OFEV for over 6 months. I get sick enough with it that I couldn’t imagine eating beef jerky or other snacks. However, the high protein in it might help with some of the drug side effects. Eventually, your husband will need to start a low sodium diet because salt holds water around the lungs that makes breathing harder than it would be otherwise. He’ll know when that time comes.

    If you are concerned about oxygen (O2), ask your doctor for a Pulmonary Function Test (PFT) and a 6-minute walk test to determine if he needs supplemental O2. And tell your doctor that he wants to fly. They probably will be doing these tests routinely to monitor disease progress anyhow.

    Buy a pulse-oximeter to measure his O2 at home. These are inexpensive and readily available. (Here is a suggestion: https://tinyurl.com/2yacqy4z) Your SPO2 number on a pulse oximeter should stay above 90%. If it goes below 88%, most doctors will prescribe supplemental O2, and if it stays below 88% for any length of time you need to visit the Emergency Room. Measure it several times during the day until you get comfortable with where his levels are, and then continue to monitor at least once a day.

    The FAA limits the size and number of batteries that you can carry on a plane – even for medical aids. That limits the amount of time that you can travel. (I can fly from LA to Hawaii, but not from Boston to Hawaii…) Being in Hawaii should not be a problem; even in the mountains as they are just not that high.

    The other smoker in the house needs to stop for his own health, not to mention your husbands, AND your health! When the doctor prescribes oxygen for your husband, then the smoking absolutely has to quit! No candles or other open flames either. And your husband will have to stop cooking over open flames (like a BBQ or gas stove).

    If his doctor hasn’t suggested it yet, he needs to get in an exercise program that focusses on core strength and heart health. A medically supervised program called “Cardio-Pulmonary Rehabilitation” is absolutely the best choice and should be covered by Medicare or his health insurance when prescribed by a doctor. In my humble opinion, this will do more for his health than even OFEV.

    I’m guessing he might be a little overweight based on his diet preferences. The less you weigh, the easier it is to breathe. OFEV causes weight loss for most, sometimes severe. I’ve lost 20 lbs in the last 6 months solely due to taking OFEV. But if he needs to loose a lot: consider going on a diet as a life extending (saving) measure.

    OFEV’s manufacturer has a support program that will be helpful to you and your husband. It is called “Open Doors” and you can find about it here: https://www.ofev.com/support/open-doors. It has been very helpful for me and many others.

    Keep the questions and dialog coming on this forum. Getting support from others who are farther on in the journey is critical. Also, look for a local support group if you live in a larger metropolitan area. (Open Doors can help you with that…)

    All the best,

    — Jon

  • martin-denny

    Member
    March 14, 2024 at 7:54 pm

    Hi Margo

    Dont get too concerned about flying. I was diagnosed with IPF 7 years ago and am still not needing oxygen. I fly to and from the Cook Islands from Sydney frequently (5-6 hours) and have had no problems. Last year I flew from Australia to England and back, 20 hours each way. I checked my blood oxygen with an O2Ring and found that the levels dropped to 90% and I was still OK, no need for supplementary oxygen.

    After the first initial shock of the information that seems to be given with the statement “Your life expectancy is 3-5 years” it takes a while to come to terms with the condition. But the predition is no longer considered correct as nowadays the medications do slow down the condition. So, take it easy let your husband have his enjoyments while he can.

    All tne best

    Martin

  • carl-stidsen

    Member
    March 15, 2024 at 11:48 am

    I’ve been diagnosed with IPF for 7 years now , and I’ve found Oxygen to be the one thing you cannot do without , I don’t know why folks are afraid to start using supplementary O2 to bring their Blood O2 levels up to somewhere near normal ( mid-90s). I had two Air Force reunions in Colorado Springs (elev. 6,000) and Cheyenne ( elv 7,000) and was barely able to get around. That’s when I saw a Pulmonologist. When first diagnosed I fought the notion of taking a Concentrator along .on a flight to Europe, so I didn’t . BAD choice. At the cabin altitude of 8,000 feet , I couldn’t expand my diaphragm enough while sitting down , so I had to STAND in the back of the plane for most of the flight to breathe deeply enough . The Cabin crew (Aer Lingus) understood and let me stand there for 5 hours, not bothering them and staying out of their way.. Other Airlines may not let you do that. The “Suitcase” concentrator with a plug another person mentioned is designed for IN-Home use . Medicare wanted to send me Oxygen bottles to drag around . I said to hell with that , and bought a portable concentrator and a couple of ( expensive) batteries with my own nickel . I researched the field (and you should too ) and bought an Inogen One G5 . It’s not cheap ( around $2700 with batteries and a carrying case) , but relatively small and lightweight ( 5-9 lbs , depending on the size of the battery). but your husband can BREATHE and get around . Some people fight the idea of wearing a Cannula , because they think it makes them look sick or funny . NO – it brings LIFE to hubby’s lungs , and is a lot better than a CPAP mask . Ask your pulmonologist for a determination of how much flow settings work for him because it is a Prescription item. There is paperwork required to get the TSA clearance for him to get the concentrator aboard the Airline fight. that your AAA Travel Agent can help you with . Bring copies , because EVERY TSA guy will want a copy. . My last flight to Salt Lake City (elev. 4500 feet) , I lived on my concentrator – without it , my O2 level was in the mid 70’s. I decided to skip the chemicals (and their side effects) and just live the Quality (not the Quantity) of my remaining years. IPF is terminal Horrible to say out loud but a fact. Accept it and get on with your life . For me , Oxygen is life . Chemicals just make me sick and do not add to the quality of life , just the quantity. But that is just me. And tell your husband to knock off the cigarettes . He is just killing himself faster – and you too , from his second hand smoke ( my wife smoked for 30 years before she died from a series of strokes brought on by cigarettes). OR – take a (sea-Level) cruise to Hawaii. Takes longer but enjoyable if you like cruising ( I do). And most important – TAKE CARE OF YOURSELF. so you can take care of your Husband . Good Luck .

  • ReneeA

    Member
    March 15, 2024 at 7:47 pm

    I had no idea that antifibriotic drugs could cause this but I deal with it every night. Aquaphor is great for healing skin but I found they also have an anti-itch cream. I keep it in my bed and when I need to scratch I apply that first.

  • Charlene Marshall

    Member
    March 16, 2024 at 8:54 am

    Hi Margo,

    Thank you for sharing a bit about your husband’s story, I’m sorry he’s going through this. I remember the first few months post diagnosis; everything felt scary and like a scramble to make a ton of changes. As others have said, remember to take care of you through it all.

    Regarding Hawaii, if you ever want to talk more about this, feel free to reach out. I was diagnosed in 2016 and went to Hawaii for three weeks in 2019 and managed quite well. I took my portable oxygen concentrator with me, so happy to share any details with you. The other thing is: if your father/father-in-law could stop smoking in the basement, I’d say that is arguably the most impactful thing… or it would be for me anyways. As my IPF progresses, I can no longer tolerate cigarette smoke. Like, I’ve been hospitalized or had to have 911 called because I inhaled secondhand smoke in public and it impacts my breathing terribly. While this may not be the case for your husband right away, it could be eventually and I know smoking cessation can take a long time for some people. Just my two cents!
    Welcome to the forum though, and please don’t hesitate to reach out for support – we’re here for you!

    Charlene.

  • bonnie-thompson

    Member
    March 19, 2024 at 5:35 pm

    I have been on Ofev for 3 years 100mg twice daily. I have had only minor difficulties with it and that was helped by taking Imodium. My diagnosis of PF came 3 1/2 years ago. My most recent CT and Pulmonary Function Test showed no progression for the last year. I know Ofev doesn’t cure, but I am so grateful that (for me) it has slowed the progression. I hope my experience with Ofev will be encouraging to others, as these test results have been for me. Also, I am grateful for the help I received from “Open Doors” as has been previously mentioned in this forum. God bless you.

  • Babe

    Member
    March 19, 2024 at 6:31 pm

    I suggest your father-in-law smoke outside. He doesn’t have to like it. The nursing home might have a porch area where he can smoke.

    Medicare will help with one home concentrator. They won’t add a portable unit. Maybe more help if on Medicade.

  • Margo

    Member
    March 28, 2024 at 2:15 pm

    Thank you all for sharing and answering my questions. My husband had his 4 month follow up last week and his numbers haven’t changed much since the last time. The dr. said if it’s the same next time, he can start going in every 6 months. This is good, right? Although I have noticed more coughing lately, my husband doesn’t think that’s the case. I’ve found that the more I Google and try to read up on the disease, the more anxious I get. For now, I think the best thing for me to do is go on as if nothing is any different than it was a year ago and deal with things if/when they start to progress. It’s nice to have a place to ask questions to those of you who have been going through this longer than we have. I appreciate all the kind words. Thank you all.

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