Updated: Aug 10
Recently, on my Instagram page, Organ Donation Heroes, I received a message from one of my followers. Organ donation has been a huge part of her life, as she received a kidney transplant.
Check out her story here, as she shares it with me:
"I grew up with Cystic fibrosis and it was always “there”. So, it was hard to see in my early years because I was “healthy”. It wasn’t until my first hospital stay that it started “acting up”. I guess I knew that I always had it, but it never “bothered” me. I have a sister Colleen and a brother Kevin. The weird thing is that Kevin doesn’t have cystic fibrosis and Colleen and I do. People always find that weird. They say, “oh how did Kevin not have cystic fibrosis?” and I go “God.” My faith has been extremely important in this journey and that’s one thing that I want people to understand. Without my faith I wouldn’t have survived this storm that has been the last five years of my life. I live in Cleveland Ohio in a suburb called Brecksville. But now I live in a condo with my cat. So fast forward to 2016 my health was starting to really go downhill and such. The doctor I had Kimberly McBennett decided that it would be a good idea to have a conference with me and my parents. She sat us down while I was in the hospital and said, “I think it’s a good idea to start exploring transplant.” She said that since UH didn’t have a transplant center that I would go to the Cleveland Clinic. The Clinic is literally not even 10 miles away from where I was at the time and the side of the hospital that I was on was NOT caring for me properly. Which is probably the reason that soon after I needed a transplant so bad. The clinic said that I would qualify for a transplant and so they began the process of doing all these insane tests. But because I was at UH so much, they arranged the tests to be done at UH and then just transfer the results to the Clinic.
Soon my health started REALLY going downhill and it would become a huge deal. I needed oxygen when I slept and when I moved. I had to use 3 liters for both and soon had to hire a home healthcare private nurse. She was a wonderful lady who originally helped my mother when she broke her ankle. Miri would stay on with us and become our life line. I did outpatient rehabilitation at a UH care center but soon couldn’t continue because my blood pressure and heartrate were all through the roof. So, in November of 2016 my doctor began to talk about admitting me every 3 weeks. The problem with being admitted is the medication they use to help you destroy your kidneys and dehydrate them. But i needed these medications! I couldn’t go to college because every time I would start a class I would have to be hospitalized and the college didn’t want to lift a finger to help me. I had a fiancé at that time and while we didn’t make any specific plans on our marriage, he was very concerned. Later we would breakup and he would say horrible things to me but that is another story that I will get to in a minute.
December rolled around and Cleveland winters are extremely hard. Plus, the fact we were doing some work on our home (before I got my condo) and had to stay at a hotel. We could barely travel and needed to be in town in case the call came. I was in the hospital for about 2 months when things REALLY started to go downhill. My uncle Tom my dad’s oldest brother was diagnosed with pancreatic cancer, and it was getting bad. It didn’t help that the man was 70 some years old and mentally ill as well. My brother lived in Chicago but came home frequently. My sister-in-law was expecting her first child and my sister and her husband were expecting their first child via surrogate. Everyone was really excited about the impending births, but we were all on edge because we just didn’t know what would happen with me.
On New Year’s Eve I woke up and I felt off. And the thing of it was when I felt off, I was usually right. My nurses always knew that when I woke up feeling weird or “off” they knew a storm was coming. And boy did it ever. I developed Kidney failure and a fever. My kidneys desperately needed a break from the IV medications, so they literally threw out the rest of the IV’s and hung at least 3 bags of water. These were GIANT bags of water I’m talking like 4 gallons at least. My parents were at a new year’s party and when they got the call from the doctor about my kidney function, they left immediately despite me telling them to try to enjoy themselves. I had spent a few hours at home during Christmas because this would be Tom’s last Christmas with us, and I begged my doctor to let me see him one last time. It was a good thing that I did because I didn’t get to go to his funeral. I hugged him and told him I loved him and while I still have regrets about that time, I’m glad that I saw him and now my doctor is too.
The doctor wanted to admit me to the Intensive care unit right away when my parents got there. She came down to my level (I was laying down) and said that she wanted me to go there. I asked her crying “Am I going to die?” and then she said, “not on my watch.” Kimberly McBennett saved my life. She made the right moves and without that I would have died for sure.
The days that followed in ICU were bad. Colleen maintained contact with Kevin and Stacey (and everyone else) and would call Kevin and say, “I don’t think she’s going to live through the night” or “You don’t need to come home everything is okay”. Kevin, my parents, Bryan (my brother-in-law), Colleen, and Stacey lived and died over me.
There was one time that my parents were there, and my mom came out and looked at my dad and asked, “Do you think she’s going to die tonight?” and he just said, “I don’t know.” So, she said “Let’s call the pastor”. My mom is Catholic but didn’t convert until later in her marriage. I converted when I was in high school. My dad grew up Catholic and wanted his family to be the same.
They called a former pastor of my mom’s former church John Thelinhaus. He is a wise godly man and very comforting in situations like this. I don’t know to this day what he did when he prayed but according to my mom, he prayed so hard and so powerfully that when they walked into see me after an hour, I was not all the way better but a little better. And wouldn’t you know day by day I got better! My mom says that the power of family and prayer helped me get better. I believe that too.
When I reached the step-down unit the doctor at the Clinic transferred me there. Marie Budev is now head of the transplant department at the clinic and at that time was my doctor. She made it so I would be sent there to be watched until the call came.
I remember before I left Dr McBennett came in and sat next to me. It was about an hour before I was taken by ambulance to the Clinic. She said she was so proud of how brave I was and to fight for myself and advocate for myself. She said all of this with tears in her eyes and my eyes were full of tears too. Just writing this makes me emotional.
I was sent to the clinic right away and watched there until I got the call. I was on about 10 liters of oxygen and a Bi-pap machine to get the CO2 out of my lungs. While I was used to tests and being poked and woken up nothing could have prepared me for what transplant was really like.
I think it was about 2 weeks before I got the call and let’s just say the waiting was AGONIZING. It was my definition of hell. Every time my phone would ring, I would jump out of my skin thinking this could be the day!
January rolled around and soon the call came.
That night I was with my mom, and we were in my bed watching the Golden girls. The nurse came into check on me and make sure everything was alright and then another nurse came in. She was excited about something and said to the nurse that was in my room “You need to take this call”. She took the call and I wish I could describe the look on her face because it was PRICELESS. She handed the phone to me and the person on the line goes “Jackie Weiler?” “Yes?” After verifying my name and information she just goes “We have organs for you.” And that was all I heard. I started hyperventilating and handed the phone to my mom who up till this point was like “WHO’S ON THE PHONE?” she verified that we wanted the organs and hung up. We called my fiancé (who’s now thankfully out of my life), my brother, sister, and my dad. My poor dad had gone home to see my cat Chloe and get some rest but as soon as he laid down BAM, we had to wake him up and get him down there! My brother lives in Chicago and my sister lives locally. I was the one to tell them both that I got the call. My sister started to cry hysterically when she heard the news. I told her I was scared and she just said, “I’m going to be by your side through everything I promise.” She probably doesn’t remember that, but I certainly do. My mom told Kevin that he didn’t have to worry about rushing because the surgery wasn’t until the morning and it was shortly after midnight at this time. He said to my mom “Mom we’re already in Indiana”. I guess that they had a bag by the door packed in case this happened or in case Stacey needed to go to the hospital for something. Stacey and Kevin were champions through this whole thing. Stacey would be in a chair in my room reading and I wouldn’t even know because she was so quiet. Bryan who had a double lung transplant and a liver transplant at the same time came to my room one day and just sat down and answered all my questions. I would get quiet, and he would look at me and literally say “What’s on your mind? What are you thinking tell me.” The compassion these people in my life have shown me is something that you rarely see today.
Fast forward to after we called everybody. My mom turned on the lights and started getting everything together because the nurses couldn’t hold the room unfortunately. When we were wheeled down to the ICU my family was there. My fiancé included arrived just on time and sat with me. Even though he’s my ex now I still have a photo of him holding my hand and comforting me. I haven’t been able to delete it because it reminds me that maybe that moment was genuine or maybe he was just a good con artist. Anyway, the day that I got the call a few things happened. I got to take a shower, my best friend Katie visited me and a priest friend of mine visited and blessed me. Father Walt was the head of Saint Basil in our town at the time (before he retired) and always came to see me. He came around 10 pm that day and it was as if he knew it was going to happen. He even said something told him to come see me and he couldn’t explain it. I remember seeing my good friend Katie. She inspired and continues to inspire me so much. She said that after I fell asleep watching the movie, she closed my laptop and walked out but before she left she stared at me because she thought this would be the last time that she saw me.
In ICU they were prepping me for the surgery and making sure that everyone knew what was going to happen. I think we were just waiting for the surgery team to be ready because the organs were already there. We did not know where they came from, but we did know whoever it was they were a minor. I didn’t hear that until after I woke up. My sister came in and hugged me. Due to Cystic fibrosis and cross contamination, Colleen and I are not allowed to hug usually but since this was a special thing, we put all that aside and did a hug. She was wearing a gown, gloves, and a mask. So was Bryan. At that time, we were just waiting. Kevin arrived shortly after my sister, and I had a moment with Stacey. Stacey’s little belly was popping out currently, and she was enough along but not anywhere near ready to have the baby. I asked her if I could touch her belly and she said yes. They knew they were having a girl and told me when I was in ICU at UH and I was the only one that guessed it. I said to her belly “Baby girl it’s Aunt Jackie. I’m getting ready to get new lungs can you wish me good luck?” And the baby delivered a strong kick that it made my hand bounce. That baby is now a beautiful five-year-old girl.
The whole family gathered around me when it was time to go down. I started to cry because I was so scared that this would be the end. After kissing my fiancé and a quick group prayer led by my dad and mom,
it was go time.
Every time that I have a procedure, I ask them to play Michael Jackson’s music. But here’s the twist. It can’t be slow or emotional. It must be fast tempo. So, they played “Scream” a duet with Janet Jackson his little sister.
The doctor introduced himself and soon I was off to dream land. When the surgery was over, the doctor came to greet my family. The surgery was 12 and a half hours. The surgeon said he was pleased with everything, but the damage was obvious. Cystic Fibrosis is a progressive disease and without proper treatment can be fatal. He said that while everything went okay, he needed to keep my chest cavity open for a few more days so that the swelling could go down. My family was shocked, confused but grateful that I had made it. The next hours were critical, and it would be tough. When my mom asked the surgeon how much good tissue of my lungs, I had left the doctor shook his head and said “She had days, maybe hours left.” Things could have been very different if I didn’t get that call when I did.
My family had spent hours in hotels, a restaurant, and the hospital while I was being transplanted. They went out to celebrate after seeing me in ICU and then going back to their rooms to finally catch some sleep.
The process to wake me up was long and grueling. I would wake up and then fall back asleep. I don’t remember much of this, but I do remember waking up for the final time after sedation finally wore off. I woke up what seemed like moments after being put to sleep and I thought that I had died and gone to Heaven. I always believed that if I died, i would go to heaven and see Jesus. Ironically, I thought that I was dead and that the doctor (or maybe nurse) was Jesus. When I finally came to, I saw my family there staring at me. My mom walked over to me holding my hand and softly said “do you remember what happened?” I shook my head no. “You had a successful double lung transplant. It was hard but you’re alive and you’re safe.” According to my family, I just burst into tears. I remember this because I felt the joy and relief. It was almost conformation for me. “Okay the hard part is over now we can begin to recover.”
The days in the ICU were long and HOT! It seems like they have no central air conditioning there. The days were filled with doctors, nurses etc. I remember having a catheter in me and going to the bathroom. I worried because I was unable to move so I asked a nurse where my urine was going. She pointed it out to me, and I said it was “magical”. I remember my dad going from nursing home to the hospital to see me and his brother. His brother was suffering from Cancer, and I kept telling my dad one thing. “Tell Uncle Tom that I said hello and that I love him.” There’s a bit of a long history with my uncle and without getting into it that’s what I wanted him to know. My dad was obviously comforted by that and proceeded to tell him every time they met. Eventually in February of that year, my uncle would die from cancer after about 5 months. He was diagnosed in late October of 2016 and died that next year in 2017 just a few short weeks after my transplant.
The ICU staff taught me how to walk, sit up and stand again. When you have a transplant, you tend to lose all ability to do normal things. For several weeks after my transplant, I couldn’t go to the bathroom normally because it hurt! I didn’t expect all this trouble when I got new lungs. Stupidly, I thought it would be a sinch after the surgery part was over. But I remember the words that Dr Budev said to me when we first began this process. “This will be the hardest thing that you have ever done in your entire life.” Boy was she right. And I know that she didn’t say that to make me afraid, she said it to prepare me for what was ahead. I eventually started rehabilitation in the regular part of the hospital. This included sitting up, standing, and getting in and out of chairs. It included strength training and a lot of working out but at a minimum. I was so lucky to have this chance to breathe and the thing is it didn’t register with me until I got home.
I have this cat, Chloe. She’s a black cat and i adopted her in 2012. One day someone was at the house facetiming me and Chloe was on the line. When she saw me, she rubbed her head against the phone. And when I came home, she ignored me for about an hour because she was mad at me for leaving. But soon she sat next to me, and I caught her up on the details of my surgery. We had a fantastic neighbor who came by to not only feed her but play with her and keep her company for an hour. She was very lonely while everyone was gone. I think that she felt abandoned. She’s sitting next to me as I write this.
I remember the one day I saw my surgeon again. His name was Ahmed Zeeshan. He is the loveliest man on the planet. He’s one of the top surgeons in the country! He came into my room, and I had to ask him “Are you, my surgeon?” because I didn’t remember! He smiled and nodded his head, and I reached out to hug him right away. He was so humbled by my joy that he had tears in his eyes. I met a lot of surgeons and most of them were lovely people but this one had to be one of the kindest, sweetest surgeons I have ever had the pleasure of knowing. I’ll never forget what he said to me. “This is why we do what we do. This is the payoff. When we see our patients without oxygen and tubes, we know we have done our job right.” Imagine one of the top surgeons in the country not only operating on you but saying something so humble! When he greeted my family, he hugged every one of them out of joy and just relief. He went to shake my brother’s hand and my mom took a picture of the moment when my brother said, “no I want to give you a hug.” He’s a surgeon in Florida but the way the system works is whoever is in town does that surgery. And if that isn’t amazing enough, he did a 12-hour surgery before me! Basically, we were all blown away by this man and he rocked our world.
2018 rolled around and with it came a lot of difficulty. The second year should be easier than the first, but it wasn’t. I had rejection, which is even still very common, developed CF related diabetes, my last grandparent died, and my fiancé proved to be an asshole. I was admitted to the hospital for not only rejection, but diabetes. The team of diabetic doctors blamed ME for the high sugars. Keep in mind that I didn’t know what my sugar even was until I tested it. My grandma was 101 at the time and in a nursing home. She was going downhill for some time but the one day my mom called and told me she was dying. This was weird for me to comprehend because every other time my grandma had gone downhill, she proved to be a bad ass and got better instantly so please forgive me if I thought that she would be fine. I remember almost laughing a little bit and being like “yeah right she’ll be fine!” and my mom picked up on this. She said to me that this was serious, and that grandma was seriously dying.
My grandma was a faithful woman. She believed in God, and she wasn’t afraid to defend her faith. Someone would get in her face about it, and she would get right back in theirs! She made it public how much she loved the lord. She was not shy about it.
While this was all happening, I was getting ready to celebrate my anniversary with my fiancé Dave. He was nervous about us getting married because that would mean he would need a good job to support my medical needs. And my parents are both attorneys which intimidated him. My parents are very kind generous people who do well for themselves. My mom was a judge for 19 years in Garfield Heights and my dad was a law director in Broadview heights until his mayor lost. Then he went on to do jobs such as running a law practice successfully. I can understand why Dave was intimidated. What I didn’t and still don’t understand is why he decided to tell me over the phone drunk why he wanted to end our relationship. He told me that he didn’t want to deal with my health issues anymore and that it was becoming too much for him. It’s funny because it is STILL too much for me. And I always tell people that I can’t walk away from this. I have to take anti-rejection medications and see doctors for the rest of my life. Basically, he went to my dad and told him he wanted to end the relationship and so my dad had to be the one to tell me it was over. I’ve seen him cry over me, my sister, his mother, and his brother. But it was heart breaking when I saw him cry because he had to tell his daughter who was sick in the hospital that her engagement was over. And it wasn’t just like “oh we’re not getting married anymore.” It was genuinely like “no i hate you and i don’t want anything more to do with you.” Dave literally said some of the most horrendous disgusting things that I can’t even repeat.
Regarding my donor, I always say that he was so real to me. His name as I would later learn 6 months after transplant was John David. Just fifteen years old. His mother wrote to everybody who got his organs and introduced herself and her children. She said that John David was a musician, skateboarder, snowboarder and above all, her son. When I think about John David in that sense that she knew him, I instantly get emotional. There was a time after I got out of the hospital that someone would look at me a certain way and without any warning, I would start to instantly cry. I think those tears were just not knowing about my donor. I exchanged letters with his mother Cathy over several months to about a year. We talked in detail about our lives and the struggles that we both had. I won’t talk about the manner of his death because that is too personal. I received a letter detailing his death and was broken by it. It was absolutely devasting to me.
He was just 15 years old.
I think the thing for me that made it even tougher was I got to be 15. I had my first kiss, my first car, my first relationship and all the other firsts. John David didn’t even get to graduate high school. The year that he was due to graduate they gave his family a special degree honoring him. Cathy said in the letter that she was ready to meet me. We got her phone number and email through Life Banc which helps donor families and recipient families communicate. She spoke to my mother first on the phone and we arranged a time to go and see them. Before I knew it, we were at their door. And the stairs leading up to it were steep. But I can tell you that if they weren’t, I would have run. I didn’t know what to expect from this. I didn’t know if I would be met with love or anger. Anger about her son being gone, anger about the sickness that I’ve had in the last 2 years. The door opened and she was there. Immediately, she hugged me so tight. She said, “I’m so happy that you’re here.” It was like we were already friends. Her husband and other family members were there to greet us as well. I hugged her husband and said that it was an honor to meet him. We sat down at the table and ate lunch. My mother shared the story of my transplant, and it left us and Cathy in tears. She was visibly moved by this, and you could tell. Later, we spoke more about our lives and John David. His presence was there in her home. We met her daughter that next evening and we were absolutely blown away by her. She sang opera at a recital, and we thought she was the best one (because she was!) It was that evening after we returned to their home that my mother asked Cathy if she would like to hear her son breathe. She said yes, she would. My mom told her she brought a stethoscope and handed it to her. I sat down at the table and breathed deeply. Something I had been craving all my life I was finally doing. I was in tears as this was happening. I was happy crying because I had seen videos of this type of thing but never imagined that this would happen. John David was real to me from the start and always has been.
After our trip to see the family, we keep in contact. I text Cathy about milestones that I’ve reached, and she texts me too.
I wish that I could end this story with some profound wise thing, but I don’t have anything to say really. I guess that I was just a lucky person to receive these organs. While my battle continues five years later, I just hope that this story encourages all types of people in whatever their struggle is. That’s really all I want."