Kathy’s Story – Part 2
65_RedRoses is Eva’s story but we know there are thousands of other transplant recipients with compelling stories to share as well. One such recipient is Kathy Meier (featured left five weeks after her transplant), who received a double-lung transplant just over two years ago. In part one, she told us about living with CF. In part two, she tells the story of receiving her transplant.
Do you have a story? Contact us at: outreach@65redroses.com
65RR: Tell us about when you learned you would receive a double-lung transplant.
KM: On January 13, 2010, while in the hospital, my doctor came into my room and delivered the news that I had been chosen to receive my double lung transplant. I was in total shock. I had been very ill with numerous lung collapses but had only been on the list for 26 days. I thought it just wasn’t possible as the stats suggested it would be at least 3 months.
I had dreamt about this moment but never really went through what the emotional reaction would be. Panic comes to mind as I flash back to that moment. I was transferred to Toronto General Hospital and went into surgery at 4:00AM on January 14th. Saying goodbye to my husband and mom was so very hard as I wasn’t sure what the outcome would be. I was part of a study that involved EXVIVO profusion. The purpose of the study was to try and prolong the life of the lungs once removed from the donor as well as improve their function. The lungs were put in a dome and hooked up to a machine that inflates them with O2 for a few hours. It gives doctors a better idea as to whether the lungs will be good enough for transplant and possibly improve them. The lungs that I received were marginal before EXVIVO but became more hopeful a few hours later.
The surgery was nine hours long with some up and down moments. I was in ICU for four days when told I was having rejection and infection. I was treated with a steroid bolus and antibiotics. I remained on O2 for about three weeks, which was very discouraging. I was in quite a lot of pain. Getting mobile again was such a struggle as my kidneys also started to shut down, and I gained 25 pounds of fluid in a matter of days.
My family was truly amazing during this very rough recovery but four weeks post surgery I was released from the hospital, walking on my own and without O2. It was a pretty amazing feeling.
I remained in Toronto for 6 months for the mandatory exercise program at the hospital as well as clinic appointments, pulmonary function test, blood work and bronchoscopies. I always took precautions when going to the hospital with lots of hand sanitizer and wearing gloves and masks. I didn’t want to jeopardize my lung. They tell you to try and live life as normally as possible, but in my mind you can never be too careful.
I returned home in the summer of 2010 and was reunited with my family and friends. What an amazing moment. I had to wear a gown, mask and gloves when around my sister and brother as they were carriers of MRSA as well. That was really tough on all of us but we had to focus on how far I had come and one little slip up wasn’t worth it. Another thing I had to stop was hugging—that was hard. I was a hugger by nature but it was just too risky.
I returned back to work in September that year but only part time. I work at an accounting firm as a bookkeeper. It was really great to be back at work but really tiring at the same time. Everyone was very understanding. I still struggle some days when my coworkers come to work sick as it’s very scary to know how bad of a risk it is to me. I wish I could just not go to work on those days.
65RR: How are you doing now?
KM: I am thrilled that I have just had my two-year assessment and everything has come back great. There has been a few things that have sucked since transplant, one being a 100-lb weight gain, but I’m trying very hard to overcome this and keep up the exercising.
I am still only working part time and taking precautions as much as possible but not quite as many as I was a year ago. I no longer wear all the garb around my siblings and have been able to experience some main events like concerts, movies and parties with my friends. It’s been amazing. I try really hard to distance myself from those who are battling sickness and have lost layers and layers of skin from all the hand washing. Believe it or not, it really does work!
I wish I could have the opportunity to have contact with my donor family to make it known how truly thankful I am for been given this amazing gift. I sent them a letter through the transplant program but sadly did not receive a response. I understand that its hard to deal with when it’s the other side of the coin, as I am not aware of how they lost their loved one, but I do hope one day to hear from them.
65RR: Fewer than 20% of people in Ontario are registered as organ donors, and some people wait years for necessary transplants. What do you think is the best way to encourage more people to sign up?
KM: I really wish I knew what the magic trick was to make people more aware how important it is to register as organ donors. I must confess that I had no idea until I was in a position where I needed one. I remember renewing my health card about ten years ago and checking the box for organ donation not even really understanding what it meant but just thought, “Oh well, whatever.”
It wasn’t until after I received my card that I realized what it meant and to honest it really freaked me out. I couldn’t imagine being cut open and having my organs removed, but at that point I wasn’t seeing the bigger picture. I later realized that it would have been selfish not to have signed that card that day. I would be giving a gift that would be the most amazing gift ever, the gift of life!
I want people to understand that giving someone a second chance at life means more than words can even say. To be able to still be with my wonderful loving husband, my family, my two-year-old niece that means the world me and to be able to watch her grow, and my friends—it’s a miracle. And why wouldn’t you want to be a part of that?
For someone having to make the decision on behalf of a loved one can be very heartbreaking, so its very important for everyone to know what they’re loved ones wishes are. It is so sad knowing so many organs go unused when there are so many people out there who are fighting to have that second chance at life.
We don’t need our organs when we’re gone… but someone else does!
