Ellen and I decided to create this site so that all of our friends and loved ones could receive updates about Ellen's health. We noticed during her most recent hospitalizations that people were feeling, "out of the loop". Because we're so far from most of you geographically, and because there are so many of you, AND because we want everybody to have the same information at the same time, this site seemed like a helpful tool. Also, I don't do social media - which makes things less easy for many of you.
When Ellen is hospitalized, it's challenging for her to text people or post things on social media. For those who've never spent a day in the hospital with somebody who has Cystic Fibrosis, it's hard to imagine how may interruptions and activities occur. Nearly every conversation, phone call, or text message attempted by Ellen is interrupted by a knock on the door, a treatment, or some other necessary aspect of her care. Time in the hospital is not really a time of rest and comfort. It's a time of stress. There is no privacy, little control of personal space, a constant stream of strangers demanding communication, attention, and access to her body and her thoughts. Treatments themselves also cause terrible nausea and other kinds of discomfort.
Many of you may not know that Ellen has been experiencing a condition called DIOS for about a year now. This condition is fairly common for CF patients, especially in adulthood. Essentially, it means that her GI system isn't working as well and she now has to manage that in addition to her lungs and everything else. She asked me not to go into detail about this, so please Google it if you want to.
Ellen has had 5 lengthy admissions to the hospital this year. Despite this, and in spite of her usual regimen of home IV antibiotics and usual treatments, her lung function currently sits at 25-26%, which is around 20 points lower than three years ago. This means that any physical activity is incredibly hard on her. She is less and less able to take brief periods without oxygen supplementation and has also had to increase the level of oxygen she requires just to walk around the apartment. In fact, we will be moving to a ground floor apartment in 3 weeks because climbing just one flight stairs has become very difficult for her.
Many of you who have tracked with Ellen through the last few years may be wondering about her former plans to seek a lung transplant. In brief, Ellen is no longer pursuing that course fro many reasons. She or I can provide more background about this decision in future updates, but please understand that this is a well thought out, reasonable, and sane choice on her part. Transplant outcomes for CF patients, particularly those with the type of mycobacterial infection that Ellen has, are not reassuring. Additionally, there are only 2 or 3 transplant teams in the U.S.A. who are willing to offer transplant to people with Ellen's type of infection because the likelihood of re-infection of the new lungs is so high.
On a bright note, Ellen has been attending daily Mass at our Parish and is starting her first year at Biblical school one day a week at St. John Vianney Catholic Seminary. These are truly life-giving and wonderful things for her.
We hold all of you in our daily prayers and feel profound gratitude for all the love you share with us.
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Bless you all,