Tagged: chronic illness, coping, holiday, IPF, lung disease, PF, planning, vacation
- This topic has 9 replies, 6 voices, and was last updated 2 years, 1 month ago by Mark Koziol.
May 18, 2019 at 7:57 pm #19199Charlene MarshallKeymaster
If you’ve been part of our forums community for awhile, you’re likely aware of my deep passion for traveling. If given the choice, I’d happily give up the structure and security of my daily life and travel the world. One of my favourite quotes about travel is: “if traveling were free, you’d never see me again”. In addition to being aware of my love of traveling, you’ve probably also read in my columns or other forum posts that my biggest fear after being diagnosed with idiopathic pulmonary fibrosis (IPF) was that I’d lose my ability to travel. I am so grateful to say that this hasn’t happened…. yet.
Not only do I love the physical act of traveling and seeing different parts of the world; I also love the planning aspect of all of it. In fact, I’d argue that planning a vacation helps me cope with my lung disease.
I am currently in the thick of planning a three week solo trip to Hawaii and while it is overwhelming at times, it has been beneficial for me in many different ways. I was recently speaking to an elderly woman who is also traveling to Hawaii via a cruise from Vancouver in September, and I was stunned to hear the high price she paid for her trip. On the contrary, she was so interested in learning how I’ve saved money and have planned my trip to/from Hawaii at a very reasonable cost using online resources. We both laughed when she called me “gutsy and young”, as she stated she’d never be able to plan a trip or go on her own like I plan to do come September. What I neglected to tell her is how beneficial planning this trip has been for me. Nor did I tell her that it helps me cope with life as a young adult living with a fatal lung disease. Let me explain.
There are many different ways that planning my trip to Hawaii has helped me during difficult times with IPF, here are some of them:
- It gives me a goal to work towards.
- It is something positive to focus on and look forward to.
- It requires me to be intentional about my budgeting and save for something exciting. When you work hard at saving/budgeting for something, the reward just feels so much better!
- Makes me feel normal. Traveling is a normal activity for young adults, and I am thankful it is still one I can participate in despite the abnormality of living with a life-threatening lung disease at thirty one.
Can you relate to the benefits of planning a trip and how it helps you cope with IPF/PF?
Maybe it isn’t planning a trip, but something else: what activity/action helps you cope better with your lung disease?
May 20, 2019 at 12:50 pm #19222JeannieParticipant
I really want to get my Portable Concentrator when I get it I’m planning a trip to see fall foliage. Living in Houston we don’t get much fall weather and I miss seeing the fall colors. Planning the trip takes my mind away from oxygen levels, coughing, the general everyday problems. I love finding bargains, and planning trips. I know it is going to be more complicated now that I am dealing with IPF but it does give me something to look forward to and keeps me busy. I hope you have a great trip to Hawaii. My brother has gone to Hawaii several times and loves the islands.
January 28, 2021 at 9:31 am #27037Nancy BorloParticipant
Are you on oxygen I love to travel and have been all over the world. I especially love cruises but most are to places WE WANT TO GO are over seas and I am not sure how to deal with long plane rides and altitude Any suggestions
January 28, 2021 at 1:08 pm #27040
Hi Nancy, you can fly with an FAA approved portable oxygen carrier. Almost all of the machines are the pulse oxygen type. Please speak with your physician about traveling by air and request the HAST to see how much your o2 requirements will change. Here is a link to learn more about the test. https://www.nationaljewish.org/conditions/tests-procedures/pulmonary-physiology/gas-exchange/high-altitude-simulation-testing-hast
Take care, mark
January 28, 2021 at 1:29 pm #27042
Nancy, I should of also stated that when flying you should try to stand every half hour to hour. Standing up and walking around will be good for your leg circulation especially for an overseas trip. There are also simple exercises you can do while sitting. Here is a link to use as examples but a google search will get you a variety of exercises. https://www.google.com/amp/s/www.godsavethepoints.com/10-simple-circulation-exercises-for-airplane-flights/
May 20, 2019 at 7:29 pm #19228Charlene MarshallKeymaster
What a great idea and goal to work towards Jeannie! I remember planning a driving trip with friends to see the fall colours in late 2017, which was one of my biggest car trips since starting to use my oxygen more regularly. It was a very beautiful and rewarding day. I hope your trip is the same. If you can, remember to get a car charger with your concentrator, it makes a huge difference. So glad you share this commonality with me, in terms of how much planning a trip can be beneficial for us! Let me know where you decide you go when you’ve planned your next trip 🙂
Thanks for your kind words about Hawaii!
January 23, 2021 at 9:50 pm #26975Dana KelleyParticipant
We are planning a trip in our Airstream in April for however long we want to be gone, not sure yet. We do love to go to the mountains. The last time we were there i had a hard time breathing and now I know why. Just thought it was something everyone had trouble with and just went on. I’m not on oxygen now but wonder what I could buy to have with me to help out.
January 24, 2021 at 7:10 am #26979
Hi Dana, please speak with your physician and state your upcoming travel plans. Ask them if you could have a High Altitude Simulation Test (HAST) administered. This test will tell you at which height you will need oxygen and how much. They should be able to prescribe you supplemental oxygen for your travel. Here is a link that can explain the test. https://www.nationaljewish.org/conditions/tests-procedures/pulmonary-physiology/gas-exchange/high-altitude-simulation-testing-hast
take care, Mark
January 27, 2021 at 3:06 am #27016Mike MsesParticipant
My PF has progressed some where I am now on oxygen 24/7 at 4 liters. Did some additional testing at University of Louisville in December and it was decided that it is time to be put on the List. They estimate somewhere around 2-4 months for the transplant, then I will be recovering for anywhere between 3 months, maybe up to a year depending on many things, including being 72 this coming June. Their thought is that they want me to do this while I am still if pretty good health to make recovery easier. Kind of scary, since I have never spent the night in a hospital before (hell of a way to start!).
We are planning a getaway to Florida in March for a week or two. My transplant center has said that if I feel good enough to go, just go and have a good time. They will just take me off the call list until I notify them that I am back. They do not want me to sit around just waiting for the phone to ring. I will get my second COVID shot on Feb 6th, but it is still a little risky getting out among people. Anyone else have similar concerns? I am OK moving around and shopping as long as I am on oxygen, plus doing rehab 3 times a week. Getting tired of sitting around watching old TV shows for most of the past 18 months, but I don’t want to get real sick and jeopardize my transplant.
January 27, 2021 at 8:37 am #27019
Hello Mike, ultimately the decision to go on vacation will be yours. If you are going to go, take your precautions to remain safe as possible from the virus. If I was in your shoes I would most likely go especially after the approval of your transplant team. Go by the notion that everyone is positive for Covid, I think when we let our guard down is when most people become susceptible to the virus. Stay vigilant as you have been. Take care and whatever decision you make will be the right decision. Mark
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