Living life to the fullest with IPF

Living life to the fullest with IPF

My husband Dave was diagnosed with IPF after a long and painful process of going to multiple doctors and getting numerous investigations done. He had been short of breath for 2 years before he was referred to the ILD clinic and the correct diagnosis could be made. I guess that I would like to start by thanking our lung doctors (ILD expert and pulmonary rehabilitation medicine specialist) for the support and care that they provided to my husband David and myself. Dr. Kalluri was with us since the beginning when Dave was first diagnosed with Idiopathic Pulmonary Fibrosis, and it was in the last year of Dave’s life that Dr. Richman

Eisenstat and AHS Home Care became involved. Together the clinic and the home care team make a very forceful duo let me tell you. As my husband’s condition deteriorated we realized we would need more and more support. He had been on oxygen for a year prior to this but his last nine months became more difficult. As he deteriorated and our needs increased, we became aware of the difficulties that we could have had if the wonderful home care team was not available to us.

Dave’s wish was that he remain at home: he so desperately wanted to be able to live his life until his very last breath and we were going to do our best to make this happen. We would talk about how fortunate we are to be living in this city and we kept saying we have everything at our fingertips. Through homecare, we were able to have a Case Manager who was also a Respiratory Therapist, a Physiotherapist and a Physio therapy Attendant all of whom came to our home to help us maintain a life style of sorts so that my husband could live at home. Our Pulmonary Rehab Doctor came to our home for home visits, and for team conferences where the home care team would come to our home at the same time as her so that we could all discuss with Dave what he wanted and how we could accomplish this. We also had a Pharmacist closely involved because we were changing medications on a constant and frequent basis to keep up with Dave’s ne

This team was wonderful: if I had questions or problems I could contact our case manager or doctor and anything that they could arrange would be done in the fastest way possible to keep him independent. The closer Dave got to the end stage of his disease, the more we needed this wonderful resource. We needed different masks to help him keep his O2 saturations up – these were brought to the house. We needed help with his physio – they came to the house. We needed a wheel chair and Home Care tried to make arrangements for it, but Dave passed away before it arrived. When it was time to call in the palliative care team, our doctor made arrangements for them to come to the house to meet with us, unfortunately we only met with the palliative care nurse once before we needed her to come back again to insert some subcut lines. When the call was made by our doctor she was here in what seemed to us only minutes. Medical supplies were ordered and support was there as needed when needed. I feel we were the luck iest people in that we received this wonderful care.

My only issue with this experience is that my husband had Idiopathic Pulmonary Fibrosis and no one with the home care team had ever worked with someone with this disease so they were not sure exactly what this disease was or what the limitations were. They did not understand that a nebulizer would not allow him to breathe easier and that there was not a medication or an exercise that could change his breathing or make it easier. It was amazing what the combination of morphine and fentanyl under the tongue could do to calm my husband’s breathing when a crisis occurred or as a preventative measure so that he could climb a flight of stairs, walk on the treadmill or go for a short walk outside, or walk in to an arena. This also worked even when he was using a scooter to get around. The shorter his breath became the more helpful these medications were for keeping him calm and able to breathe easier.

It was because of this group effort and combination of medications that my husband was able to do everything that he wanted to do when he wanted, right up to the day that he passed away. Dave
remained as active as his disease would allow him, and when it wouldn’t allow him, he pushed himself so that he could attend anything that he wanted.

I feel that we have a wonderful home care system but we need more in the way of support and
education for those who are dealing with IPF as well as those who are living with this disease. We need health care workers who deal mainly with IPF who know that this disease is not as rare as people think and that this is not a disease that you can make better when you are diagnosed with this disease. It is a death sentence; there is no cure. The only hope of survival is a lung transplant but the odds of getting a transplant are very slim considering that Alberta has the lowest donor rate in Canada and that between 5 – 10% of those diagnosed will actually get a transplant. These are not very high odds at all. So it is imperative that health care workers become educated about this disease and with the medications that work for breathlessness so that more people are able to stay home with their families. We also need support groups for individuals with this disease as well as their families.

It is imperative that we educate health care teams and support those with idiopathic pulmonary fibrosis as well as their families so that those who wish to stay at home will be able to stay at home comfortably, knowing that they have support until they draw their last breath, if that is there wish.

Darlene G

  1. I have IPF with about 50 percent of my lung and I thank you for sharing your information about Dave. It really helps. Hopefully someday a cure will be found.

    • Goodluck my mom has ild it sucks.. but there are good days.. I will pray for you my friend

  2. Stay strong my friends you are not alone I love you all

  3. Hi Darlene,

    It’s been 2 years since your post, but I wanted to thank you for sharing your story.

    My father is approaching the end stages with IPF. It shatters me emotionally to watch him struggle with the disease. He’s too old to be considered a candidate for a transplant, as as you’ve described, not much has changed with healthcare providers and their understanding of IPF (where we live, anyway).

    He is approaching the maximum flow setting on his oxygen concentrator, and I’m worried about his O2 saturation levels and his anxiety that inevitably accompanies feelings of breathlessness. Your story about Dave’s battle with IPF and the medications used to ease him through the final stages of the disease really helps me feel a bit more empowered as the representative and advocate for my father.

    Thank you..

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