Madeline’s Story

Site created on December 14, 2018

To keep everyone informed about Madeline's health, we are putting up this site. No donations please. We are doing fine.

Madeline is listed on the lung transplant list in our region around Minneapolis. Her cystic fibrosis has caused her lungs to deteriorate such that we are currently high on the list due to her lung allocation score. She is currently checked into the University of Minnesota Fairview Hospital awaiting the lungs she needs. We will keep updating our journal as we go. She is in good spirits and feeling optimistic. Thanks for visiting.

Newest Update

Journal entry by David Elmhirst

Dear Friends,
With Madeline being home the last five weeks, we have obviously been focused on her routine and care. I sincerely apologize for not posting since May 12th.  It has been a great five weeks and I will let Madeline tell you what she has accomplished in that time.  She writes:

Today marks three months since my lung transplant. It is a significant milestone. I had a clinic visit today and the doctor was very pleased with my progress. He reminded me that they like to measure the time of recovery by holidays. Just like grass that grows daily but only needs to be cut occasionally, recovery takes time to develop. Daily progress can be small, but over time it adds up and the gains become significant. I am definitely having significant improvement and I’m feeling much stronger than I did just a few weeks ago. 

 

My transplant was March 19th. I was very weak and debilitated; even standing was a challenge. I left the hospital a month later, just after Easter and could barely get up the step from the garage to the house. I used a walker for several weeks to help me get around and I still needed oxygen occasionally. I needed to have a caretaker 24/7. By Mother’s Day I had been to my first concert and I started out-patient pulmonary rehab. By Memorial Day I was able to climb the basement stairs and stopped using the walker and my supplemental oxygen during the day. By Father’s Day I was feeling much stronger and was given permission to drive again and to spend time by myself.   One of my current challenges is figuring out what to do with my time during the day. I used to spend 3-4 hours doing Vest therapy.  I know I still have a long way to go which is really exciting. I can only imagine how great I’ll feel by Christmas!


We are feeling really great about her progress.  Through perseverance, patience and humor she has moved closer and closer to what many people might describe as a normal life.  While the many drugs she takes can cause some issues, the trade-off is much in our favor.  Side effects of having some trouble with her stomach and some hair loss are tolerable because she can breath, move, talk, walk, and live.  

On this day, the three-month anniversary of Madeline's transplant, we would like to say thank you to everyone who has followed her story and lent incredible support through many kind notes and gestures.  So many times I would read a short note to Madeline in the hospital, both before and after the transplant.  She would listen intently, taking in the good wishes and turning them into resolve and sheer willpower.  There had to be times, even if she did not show it very often, when she was at the end of her rope.  Recovering from her dry run when the lungs turned out to be unusable, coughing up blood from her dying lungs, dealing with endless vest therapies four times a day, having 20 people listen to her lungs every day for no reason, giving blood, checking her blood sugar 5 or 6 times a day, getting the vitals taken every three hours, and eating cold mediocre food.  All these challenges were made so much easier because she knew that all of you were with her in spirit, and cheering her on.  Your comments meant and still mean the world to both of us.  We could not have made it without your kindness and good wishes.

Since Madeline walked in the door, we have had great support here at home.  Many people have come to take care of Madeline as I went back to work in April.  Madeline was not allowed to be alone for several more weeks.  Many friends came over to spend the day with her, and some people came every week and several times a week.  Not only were they here, but they would take her to the clinic several times a week, sometimes for several hours at a time.   I could call people and they would come through time and time again.  It was good for me to get back to my routine and be present for my students, and it was good for Madeline to have a great group of friends to spend time with.  So thank you to all our wonderful caretakers who shared of the their time and energy these past several weeks.

My work colleagues have been incredibly supportive.  I missed about 25 days of school this spring.  I was covered and supported in every way.  My two band colleagues covered all my classes along with a great sub.  The entire music department had my back and offered so much emotional support.  My principal and all the wonderful people who have become friends over the years offered so many kind words and gestures, that I was truly overwhelmed.  I cannot begin to tell all of you how your patience and kindness helped both of us during the past year.  

Our families have been great.  Through visits, notes and phone calls, we have felt their love from miles away.  And the visits were great.  And it was great to reconnect with some family that we do not get to see very often.  Thank you for your presence in our lives.  

I don't think we truly appreciated how fortunate we are to have the family and friends that we do.  We are the first to admit we are complacent in keeping up with everyone.  We are just so thankful for everyone's love and support.  From long-lost college buddies, to friends of friends of friends who have posted notes to us on this site, we humbly say thank you. 

We are going to end the blog tonight.  I hope to make Madeline a book of all the posts and comments, so we can look back when things get tough and feel that support again.  Please reach out to us on facebook, by phone and in person.  We are committed to rejoining the world in every way possible and reconnect with all our friends.  We love you all, and thank you so much for your continued support.  

Dave and Madeline.


 

 

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