Getting my affairs in order was crucial following my IPF diagnosis
Planning ahead benefits both you and your loved ones, a columnist explains
Three years ago, my life looked very different than it does today. I was at the apex of getting my affairs in order.
I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), which is a chronic, progressive, and incurable lung disease. I still recall my doctor, Steven D. Nathan, the medical director of Inova’s Advanced Lung Disease Program and Lung Transplant Program, sharing that my prognosis was less than five years. During that same appointment, he recommended I get my affairs in order.
Initially, I thought my affairs were in order. I was wrong.
Making the necessary arrangements
Before my diagnosis, I’d taken many of the actions normally associated with getting one’s affairs in order. I had an established trust complete with medical directives, a medical power of attorney, and a do-not-resuscitate order. I had a habit of reviewing it regularly, so I was confident the trust reflected my desires.
At the time of my diagnosis, I was 59 years old. Although I’d prepared them, I wasn’t expecting that any of the documents in the trust would need to be be called upon anytime soon. Acknowledging that my health status had now changed significantly, I sat down with my financial adviser, my estate attorney, and my wife, Susan. I asked the first two to ensure that Susan would have no issues when the documents came into play following my passing.
I reviewed my property assets, the things I owned, to identify actions I could take immediately. If an item was solely registered to me, I added Susan as an owner of that property.
In addition, we took care of anything that would’ve posed an issue for Susan following my death. A good example of that was my motorcycle. I’d been a motorcycle rider for a significant portion of my life, but I decided to sell my bike following my diagnosis. It was bittersweet no longer having a motorcycle of my own.
I also arranged my own funeral. My youngest brother, Wayne, had been in the funeral business his entire adult life. Together, we established what I wanted and met with a local funeral director to execute the preneed contract for my funeral and inurnment, including making the payment. That took care of another item that would’ve required Susan’s attention.
By June of 2021, I was at the clinic almost weekly and had been on the transplant list since March. I required 7 liters per minute of oxygen and could see the concern on my care team’s faces during each clinic visit. Susan and I didn’t expect that I’d make it to Christmas.
I’ve shared my view with you that attitude is everything. During this time, I summoned every ounce of positivity I could and was completely at peace with what the future held for me. Remaining positive helped me get through this difficult period, without a doubt. It also held up those around me. (As a side note, I even told Susan I’d write her profile for a dating site in the event of my passing.)
Even if you think you’re prepared, take a minute to review your affairs. Do it not only to ensure your wishes are known, but also to give your spouse, partner, or caregiver time to grieve without worrying about legal matters, which can feel of little consequence in the moment. Getting my affairs in order is yet another way I can make every breath count.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Karen Carns
Thanks, Sam, for sharing this helpful information to others. We have been there, done that, and already made some revisions as life has progressed. You, and Susan, are so helpful to many, and I say THANK YOU for all you do!!
Samuel Kirton
Karen,
Thanks for reading my column and your continued support. It is far better to make this journey with friends than to travel it alone.
Sam ...
Randall Thornton
Hey Sam. I have put in a few entries here over time. Today it will be about getting your affairs in order. I have been on that list for amount of time I had left, since 2020. My Ipf has gotten worse over the years and my last visit with my lung doctor was the worse visit I had had. This was in Arpil. She said it was time for hospice. My oxygen is down to 60- 90 if lucky. I am now in hospice withn a nurse and cna that visit me weakly. I am also on liquid oxygen That's interesting sfutt. This last visit, I had a visit with the nurse this past week, she notice my fingers are curling, my feet are the size of footballs.I am sleeping on a hospital bed in my old bedroom. I don't do much of anything anymore. No energy nor oxygen if I bend down. Just enough to navigate around the house, kind of. I put both of our affairs in oder after I had gotten out of the hospital in 2020 and the funeral is all paid off. So no problems there. We don't have much and the kids said there is nothing here they want. The grandkids may like some of my toy cars but that's it.
So, that is it for me at the moment. My wife is in complete control of everyhthing in the house, house and vehicles.So I think we are ready. It you see anything I need to look over , write me back.
Randy
Samuel Kirton
Hi Randy,
Thanks for continuing to read my column and others here at Pulmonary Fibrosis News. I do recognize your name from other notes you have on columns. It sounds like you have made all of the necessary decisions needed at this moment. I also applaud you for openly sharing the different parts of your journey with the readers here. Continue to do what you can. Please come back to let me know how you are doing.
Sam ...
sue wislar
Dear friends,
I am a newly diagnosed IPF patient, still in a state of denial and working thru this new challenge. I have read all the articles that I
can find, many of which are helpful, but have not found anything on diet and nutrition. Would love to hear from you as to how best manage this important topic. Thanks so much! Sue
Samuel Kirton
Hi Sue,
Thanks for reading my column and for your question. Can you tell me where you are being seen for your IPF? If you are being seen in one of the Care Center Network (CCN) sites recognized by the Pulmonary Fibrosis Foundation then I suggest you make an appointment with the dietician who is a part of the care team. If you are not being followed in a CCN site I suggest using Google to search for Registered Dietitians in your area. Many associated with a hospital may off free classes on diet and nutrition. There is also a Certified Clinical Transplant Dietician who has experience and practices in a transplant setting.
If you have further questions please come back and ask. If you do please let me know where you are being seen for your IPF.
Sam...