A Necessary Trip, and a Heartfelt Plea for Help That Paid Off

A Necessary Trip, and a Heartfelt Plea for Help That Paid Off

 Just breathe, passionate help for the PF journey

Two months ago, I took a bold step to ask for help

My husband and I had just returned from a trip to southern California to visit our family. We drove the 800-mile round trip, breaking it up into 200 miles per day because I get so exhausted traveling by car. By the time we got there I was crying and exhausted, and was starting to face the reality that I wouldn’t be able to tolerate the 4,000-mile round trip drive from Sacramento to Houston for our son’s wedding in early May.

It’s been a year since I last was able to fly on a commercial plane due to my increased need for oxygen when flying. I used to fly with my portable oxygen concentrator, but as my pulmonary fibrosis has progressed, that machine no longer produces enough oxygen for me to fly safely.

We were sitting in our hotel room with our son, who had flown in for the memorial service for my husband’s father. He could tell I was really struggling, and he said, “Are you still going to be able to come to the wedding?”

My heart broke … I knew I couldn’t drive or fly, so I said, “I wasn’t sure.” We all got teary eyed, but he knew I would come if it were possible.

Taking a motor home, larger vehicle, or the train wasn’t a possibility because I can’t handle being in a vehicle that long.

I scoured the internet for other possibilities, because I wanted to go so much. I discovered I could charter an air ambulance equipped with big tanks of oxygen to fly to Houston. A wonderful solution … but very expensive. It cost $39,000 for this round-trip flight, including the plane, gas, oxygen, pilots and a medical person on board to monitor my oxygen levels, plus their expenses in Houston.

Paying for this would be difficult under the best of circumstances. It is especially challenging now, because we have spent $50,000 out-of-pocket over the last three years for my treatments for breast cancer and pulmonary fibrosis. Plus, I am no longer able to work, and my husband is only working part time to help at home. You get the picture.

So, I created a fundraiser to see if friends might help. My husband and I are blessed to be connected to lots of people. I posted my need on social media to let those others know. It was a lot of work to set up, but worth it, because this is the one event I wanted to attend before I am no longer able to travel.

You know what? It happened!

In total, 169 people donated $39,400 to fly me to our son’s wedding! I just got back! Their generosity and kindness made my dream come true! What an indescribable blessing to me, and I hope a blessing to them as well. I discovered that people feel bad about what’s happened to my health, and feel helpless. This was an opportunity for them to do something to help.

It was a wonderful trip, and I’m beyond blessed to have gone. I soaked in every precious moment, and enjoyed the celebration of their wedding, and time with family and friends. These are moments I will treasure forever!

It wasn’t easy to do. It was hard to ask for help. I had to work through the discomfort of feeling vulnerable, and my fear that I would ask and very few people would respond. I pushed through these difficult feelings, and put my need out there because it was important … really important.

Pulmonary fibrosis has taken so much from me, and it will eventually take my life. I wanted to fight as hard as I could to make sure it didn’t take away my chance to be at our son’s wedding. I knew I would be devastated not to be able to go, and also didn’t want their wedding day to be tinged with sadness because I couldn’t attend.

I share this wonderful story with you for several reasons:

  1. To glorify God for His wonderful provision for me through the kindness and generosity of others. I am also so grateful to Him for the many ways He has sustained me these last 3½ years.
  2. To say thank you. So many people gave, prayed, and shared my need on social media, and with their friends. So many people celebrated with me each step of the way, which has been so fun! Here’s a video I made to say thanks!

  1. To speak to your heart. You have your own medical costs, and no doubt your finances have been decimated by this disease. I wanted you to see an example of a way to raise money for something near and dear to your heart. I’m laying it out here. We have limited time left to live. We need to make the most of it. If you need help, please ask for it.

So how about you? What do you need help with?

  • Do you have an event you really want to attend?
  • Is there a piece of medical equipment you could purchase that will increase the quality of your life (a chair lift for stairs, or a ramp or scooter)?
  • Is there a type of treatment you want to try?
  • Is there a trip you want to take, or dream you want to fulfill while you still can?
  • Is there a legacy you want to leave for your family, friends or community?

Please listen to your heart about the answers to these questions. If they require finances to accomplish, consider doing a fundraiser or asking for help from others in your life.

You matter. What is important to you matters.

The effort to make it happen is worth it, because you are worth it!

I’d love to hear from you. What made sense or stood out to you? Are there extra steps you’ve taken, or ways you’ve asked for help to improve your quality of your life? Is there a goal or dream you want to pursue while you still can?

Please share this post with anyone you feel could benefit, or on social media. We’re in this together …

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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9 comments

  1. Russel J Fabre says:

    Awesome news about your memorable trip! My wish? Share those little things that make our lives somewhat tolerable. I was diagnosed three years ago and require oxygen at 4-10 LPM but I love to travel in our RV and work in my shop. So, I get pretty creative. Here are a few things that have helped me cope:
    1) Two regulators married together with 1/4 tee in a backpack with two D cylinders to provide mobility (my portable unit no longer gives me enough O2). Draw back- it’s heavy, but I get my exercise!!
    2) Command strip Christmas light hooks. Hang them anywhere to make your hose less of a tripping hazard for your significant other.
    3)In-line quick disconnect couplings. This allows me to adjust the length of my hose just by adding additional sections. I put these sections in different locations throughout the house. I no longer have to drag a 50 foot hose everywhere. It has an additional benefit. It makes unraveling the airline kinks very easy.
    4)In-line airline valve to control my airflow as needed. No longer need trips to the concentrator to adjust the flow. I placed it right on my cannula.
    5)Plumbing the RV with 1/4 inch airline hoses with discrete quick connect outlets in the walls. The concentrated will be located in the lower storage bay.
    When I discover a new challenges presented by this disease. I try to find something that will mitigate the impacts to me and my wife. Anybody have other ideas?

    • Russel…you are amazing!!! I love your ideas, and ingenuity to minimize the negative effects of tubing and oxygen use. Brilliant…thanks for sharing. Thanks too for your congrats about my trip. It was amazing! See below for link to the Mother-Son dance we shared.

  2. Esther Landers says:

    So happy that you got to go to your sons wedding. My husband has ipf and he just went to a new lung doctor which he likes. He is referring my hubby to pulmonary rehab to help him hopefully be able to strenthen his muscles and also ordered ofev. The other doctor really didn’t suggest either of these. Praying these treatments will be beneficial.

    • Thanks so much Esther. It was a wonderful trip, and I am so grateful. See below for the link to the Mother-Son video I was able to share with my son.

      I’m so glad your hubby is seeing a new doctor. I had the same experience, first lung doctor not helpful, but second one sure was! Blessings to you both 🙂

  3. Thanks for your lovely comments. It was such a wonderful trip! Here’s the link to the Mother-Son dance I shared with our son. It was so precious and meaningful. Get your kleenex…I broke down with tears of joy afterwards. I am SO GRATEFUL to all who gave to my fundraiser so I could go. After each precious experience…I would think, “What if I missed this?” … and then the tears of joy would flow again. https://youtu.be/1uDtlqbrDao

  4. Kels Kirkland says:

    Hi Kim I have written many times but never get a response. I am so happy that happened for you!???I live in Southern Carlsbad, California and I have had very chronic Asthma since birth I was first on a vent at 2 years old. I know have IPF and I am getting a lung transplant. I am so happy you made it to the wedding, that means a lot to me because this disease takes so much from people. Have you thought of lung transplant? I am out of options. I just woke up with this at 32 and my life has stopped. Because I needed so much steroids all my life my bones have just taken a beating. I want to ask you and everyone else what side effects have you gotten from O2? From chronic dry mouth it made my teeth chip and I lost them all. Now I never smile I need 15,000 dollars for teeth. That really depressed me. The cost is high due to needing to be done in the hospital. What side effects from o2 has others experienced? I am now getting on the list for a lung transplant at UCSD. Please if anyone is in California and needs a friend let me know I feel so alone! love 2 all

    • Hi Kels, Good to hear from you. I think I have responded before…so sorry if I’ve missed some of your comments. It is always good to hear from you. I’m so sorry for all the hardships you are going through. Very good to hear you are on the transplant list now. That is wonderful. Unfortunately I have to wait two more years to be considered. My PF was from chemo and radiation for the treatment of breast cancer, and I have to go 5 years cancer free before they will consider me. Two more years to go! I have experienced dry eyes from O2, but not many other side effects that are from O2. Good to hear from you…sending you warm wishes.

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