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Gaining Quality of Life

I, Ann, am 10.5 months out from my bilateral lung transplant. My days with oxygen attached to me are gone! I am truly blessed for the gift of organ donation. Once I reach 1 year (July 4, 2025), I am to the point of having less of a chance of rejection. It will always be a risk, but less after the first year.

Prior to my diagnosis of hypersensitivity pneumonitis, I was very active doing outdoor activities, going to my kids sporting events, and my career of teaching was going strong. Within a week my career ended. My outdoor pursuits gradually declined, but I tried to keep active to have strength after my surgery. I’m so happy that I did because it hastened my physical recovery after surgery.

Updates (22)

September 24, 2025

I am happy to say that my journey after my lung transplant is going fairly well. I was excited for summer since last summer was the hospital. A couple thing got in the way of enjoying outside. First, we had bad air quality from the Canadian fires. If it wasn't air quality it was rain. Menomonee Falls was hit hard with 14.5 inches of rain over 3 days. The streets were like streams, parking lots became ponds, one street had a sink hole, and a lot of houses were flooded with up to 4 feet of water! Our basement had some water. We spent days running 2 dehumidifiers, fans, and using the carpet cleaner to soak up water.

I enjoyed time up north at my parents lake house. My mom is starting to remodel so I have helped with that. We got a new pontoon boat, which everyone has enjoyed. The sunset cruises are fabulous. The air is so pure up in the north woods, unless Canadian fires send their smoke. My dog, Honor, enjoyed swimming with her new life vest and being around my parents.

On a sad note, my Dad's health has declined significantly. His need for oxygen has gotten to the point of needing a constant 3 liters at rest and up to 5 with movement. He had had short term memory loss for a long time, but now he gets delusional every so often. His co2 is high, but wearing the external respirator is difficult because he has has a shit ton of Moh's surgery on his face and head. His sense of humor still shines through. We love to talk stupid and laugh!

My husband and I were in a bad accident this summer. We collided with a motorcycle. I was so worried about my sternum and my lungs. Xray and CT scan were done. I was lucky that I walked away with a broken rib, bruises, and some nights of nightmares. The van was totaled, so we hunted for a new vehicle. We got a 2023 Toyota Highlander. A very nice vehicle.

I am getting infusions of Belatacept to, hopefully, hold my kidney function where it is, stage 3 kidney disease. I have infusions for 5 times every other week, then once a month. I'm not sure how long that will go on. I had a bad reaction to the first infusion landing me in the E.D. with a migraine and flu symptoms. My second one left me with a headache that lingered all day, so much better! I still stand by "if my team isn't worried, then I won't be". Of course they are concerned but are taking the steps needed to hold what kidney function I have left.

Steve continues to be my rock! Our bond is strong. We are US!

Braden and Declan are living at home. Declan is in his first year of apprenticeship in being an electrician. Braden is going back to school to be an engineer.

I am blessed and thankful for every breath I take. I'm still blown away by the lung transplant

July 6, 2025

I celebrated my 1st Lungaversary with family and friends on July 5th (my actual day is July 4th). It was a wonderful gathering. I have to thank my sister-in-law for getting the planning started! From there, my brothers, Dan and Glenn, my husband, Steve, and my mom pulled everything together. The week prior to the 4th was a roller coaster of emotions. I reflected on my journey so far. 1. My diagnosis one month after my dad's double lung transplant (different disease, same outcome), my abrupt end to my teaching career, the start of wearing oxygen, and the help that I was ashamed to ask for.2. The person that lost their life and generously donated their lungs to help me live longer and get my quality of life back.3. The grief the family must be enduring during this time saying goodbye to a loved one. I have written the donor family a letter, but have not heard back.4. My gradual loss of my quality of life over 6 years since being diagnosed. I felt trapped and my time dictated by my battery in my portable oxygen. It was frustrating combined with much sadness. Out in public, I sometimes felt judged. The first thing that people would ask me was if I stopped smoking. I'm very much against smoking or use of tobacco products. As a teacher, though, I was happy to teach others about hypersensitivity pneumonitis. I lost memories that could have been made with my three boys. The one thing that made things easier was my transparency with everyone, especially my boys.5. My surgery. Although I don't remember anything after saying "see you on the other side" to my husband and responding to the nurse about my anxiety with "I'm cool as a cucumber", I know my body wen't through an extreme amount of trauma. 6. My support. My husband is my rock! He was by my side almost every day in the hospital stay of 7 weeks. His support and love for me defines "for better and for worse". He helped me with things I never thought he would have to do until we are in our 80's! We laughed and cried together, our bond became stronger than I ever thought possible. My family and friends sending messages and visiting me in the hospital. I had, and still do, have complete faith in my lung team at UW Madison Hospital. They truly work as a team! The nurses and other staff that took care of me and put up with my shenanigans while recovering. 7. My major depressive disorder. My psychiatrist and psychologist helped me, and still do, with the mental aspect of this journey. They helped me with my toolbox of skills to help cope with my emotions.8.. My recovery. This will be for life, but I'm happy and fortunate that I can take on this challenge. Once home, I endured a lot of isolation to let my lungs get used to their new environment. I am slowly regaining my strength, endurance, balance, and ability to be out and about. I am blessed to be alive! I am happy! I am stronger! I am doing well! I have so much to look forward to!I can't say enough thank you's to everyone that have supported me physically, emotionally, and financially. The money raised so far has off set part of our expenses while in Madison for 7 weeks. We are grateful for that.

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Guestbook

May 20, 2025

Hugs to you Ann.

Marnie Sullivan

August 5, 2024

Hi Ann, congratulation on your new lungs. My prayers are with you as until you have lung issues you do not realize when you cant breathe nothing else matters.
I was diagnosed with Pulmonary Hypertension and Pulmonary Fibrosis in Nov. 2022 tested for double lung transplants in Chicago but, was told they were not able to deal with current heart issues. I was sent to Cleveland Clinic who could better handle both issues. Then before I could get there Dec 2023 I had a merkle cell carcinoma removed from my finger. As its a skin cancer I have to be cancer free for 2 years...so at 74 years old im not sure that will be possible. It makes me happy to see others fighting the good fight and as they say Keep Hope Alive..Best wishes and my prayers to you for a good revovery.

Mike Lessner

July 12, 2024

We are very glad to hear that you are doing so well. We wish you all the best. Jeannie and Arthur Waldman

Jeannie and Arthur Waldman