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Travel and Telling siblings and children after diagnosis of f-IPF
Hi everyone,
I already posted this today but on another forum. I believe perhaps the place this should be located is here.
I recently joined the IPF forum after learning I have IPF on May 10, 2023. So I am a new member and although my younger brother died of IPF in 2016, none of my siblings or I even knew that IPF has a genetic component. Now I am feeling very sad and anxious that I have to tell my 6 living siblings about my diagnosis. My brother, David, was diagnosed at age 54 and lived for 8 years. He likely would be alive today after he had a lung successful transplant. He was walking around the next day without his oxygen. Unfortunately he died two days later of a pulmonary embolism. We are a very close family and my siblings are going to be devastated for me and likely for themselves. My pulmonologist told me that I should tell them to have a HRCT scan. But does anyone know if there is genetic testing available for this disease? I have read a lot and see that they have identified gene mutations, but am not sure if you can actually be tested. Any help from you members would be greatly appreciated. Also, has anyone with IPF had to advise family members that this has a genetic component? .
My next dilemma is travel. I will turn 70 on July 1. My husband and I stalled all of our travel during Covid. We were just beginning to travel again. I know that some destinations are out of the picture now, but I am having a hard time finding elevation information on my travel sites. For instance, we want to go to the Galapagos islands in November, but all I see is that the highest elevation is the top of a mountain at 5,000 feet. I am sure we will not be climbing that, or perhaps any mountains in the Galapagos. But how do I find out what the actual elevations will be on each of the stops? Is there a place where I can find this information? Nothing on the travel site provides the highest elevation of the excursions.
I am so glad to have this forum. I know that my brother and his wife used this forum when he was diagnosed. There is something about conversing with someone who knows where you are coming from.
I feel like I have a good attitude about my diagnosis. I have lived my life with a “glass half full” attitude and no matter what happens to me in the future, I have so much to be grateful for. I do feel that my younger brother was so unfortunate to have been diagnosed at only age 54. I am hopeful that my disease will progress slowly and I will continue to live my life the way I believe every single individual should be living. And that is like ever day could be our last. Wouldn’t our world be such a kinder, gentler place if we all thought today would be our last? I think it is a good way to live.
During the 8 years of my brother’s illness his motto was Carpe diem. That has become our family motto and we have t shirts and sweatshirts that we wear to remember this. Our e mails always end with Carpe diem. I would like to mirror the way my brother lived his life and handled his illness and that was with a great amount of dignity.
Carpe diem
Lynn -
6 Replies
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Hello Lynn, Just read your introduction to your new life. Yes, it is challenging. I was diaganoised in 2020. It was thought it was Covid, so that is how they treated it. That was completely wrong. At the 3rd hospital, there was an surgeon who took one look at me and said she knew what my problem was and she would see me the next day in surgery. She did a biopsy thru the side of my rib cage and discovered I only had 1-1/4 lung left and the quarter part wasn’t working. So, she took it out and had a sample sent to Rochester, Mn. The diagnoise came back as IPF. From there it has been a daily challenge. I first was on the oxygen cylinders, then bought a Inogen 5. Worked for awhile, but doesn’t put out what they say. Only about 4 and as you progress, it doesn’t keep up. So back to the cylinders.
Altitudes. I am hoping to make a trip this fall back to my old home city. There are the Rocky Mtn that are too high to go over for me. So, I worked out a different route and goggled the altitudes to see if I could make it. Also planned out stops for oxygen resupply, motels. That is what you’ll need to do for your trip too.
Hope I didn’t scare you in my ramdition, but thought you might like to to read about someones else’s experience. I’m a terrible speller. If you have any questions, let me know, I will try to answer them for you. This is a good forum for info. Everyone here has the same problem IPF.
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Hi Randy, thank you for replying to my post. It certainly sounds like it was a tortuous process for you to get a diagnosis. I can see how it will be necessary to plan all of our car trips in advance to provide elevation information, as well as areas where I will be able to obtain oxygen. I am wondering if you have flown at all since your diagnosis, or has the degree of your IPF made that prohibitive? My husband has also been diagnosed with an Interstitial Lung Disease and we are waiting for him to have a bronchoscopy, although his breathing problems seem to be much worse than mine right now. Between the two of us, we are a mess. He was already told that whatever is going on with him, does not look at all like IPF. It will likely be another few months before we have an answer about him as we are driving north to Rochester, New York to have his bronchoscopy done there. We live most of the year in Naples, Florida. All of our relatives live in upstate New York.
Keep me posted about your trip. And good luck staying healthy.
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If you’re on 5L within a few hundred feet of sea level, you will be struggling at more than a few thousand feet. How high is tolerable is undetermined and up to you and and your activity level and physiology.
The genetic mutations, like everything IPF, doesn’t mean you will develop IPF. The mutatations have a higher incidence in IPF patients, but are also present at lower rates in the general population. Many things are associated with IPF, but nothing is definitively causative. Would having the genes change anything? There is no evidence for any behavior to prevent IPF. For my family it would just be a needless expense and something to worry about that you can’t control. That’s my perspective, but yours might be different-
Incidentally, air pressure drops about 10% per 3000 ft. of altitude, so that’s 10% less air and oxygen in each breath. It became noticeable to me when I was young, healthy, and hiking above about 6000 ft., noticeable but not debilitating. I’ll be exploring my limits more this Fall. All you can do is explore and evaluate. Good luck
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Hi David. Thank you for your reply. Your information was very helpful and I intend to use that information in the next few weeks when I tell friends and family about my diagnosis.
For anyone who is under the impression that at a certain age (like 70) you would no longer be able to obtain a lung transplant, I have heard otherwise. My girlfriend has an 83 year old friend who had a lung transplant at Columbia Presbyterian 9 years ago at age 74! He is still doing great. We need to remined ourselves that hope runs eternal.
Carpe diem
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Hi Lynne,
I am very sorry to hear about your diagnosis.
I have asked my pulmonologist about genetic testing, and there is a test that will identify the genetic markers associated with IPF. The lab that performs the test is in Canada, and we agreed to return to this topic if my young adult children want to know if they have the genetic predisposition to IPF that I, my dad, and his mom all seem to share.
I am happy to hear that genetic counseling is required to proceed with the testing, and I am also happy to know that genetic counselors will be well prepared to lead our family through the discussion when we are ready to have it.
For the moment, though, we are telling ourselves that (a) knowing one way or the other would not lead to any change in our lifestyles; and (b) the science and available treatments for IPF will change dramatically before our young adult children reach the age when they might be affected by the disease. We will likely end up testing at some point, but we are not in a hurry.
With siblings well into their adulthood, however, perhaps the calculation is different. None of us older folks have time on our side quite like those in their twenties, IPF or no IPF!
I would encourage you to ask your pulmonologist about testing for your family. Certainly, with the anti-fibrotic meds. Ow available, I would want to get a diagnostic workup if I were your family member. I personally had the good fortune of an “early” diagnosis, and was able to begin OFEV about a year ago.
As for travel, I believe the effect of altitude would vary wildly from person to person. If you are still breathing fairly well at home, I doubt 5,000 feet will be too difficult; I spent parts of last year at 5,000-10,000 feet and just felt like an old dude who was out of practice hiking in the mountains, but I did not experience any dramatic loss of breath.
The bigger issue when traveling is how or whether to stay on OFEV, which I find pretty unforgiving of changes to my food and rest schedule. I think I made a mistake to stay on my meds when traveling last year, and have adjusted my expectations about future trips.
Good luck! I hope this is helpful. Enjoy the day—
Bruce
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Vanderbilt University has an ongoing study of familial IPF: https://medsites.vumc.org/pulmonaryfibrosis/familial-interstitial-lung-disease-program
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