12/30/2022
Hello! Welcome to my kidney donation journey!
Why would you want to donate? Are you nuts? What if you need it later? What if your child, husband, or other family member needs it? Do you really know him? Can't his family donate to him? What if there are complications? Why would you do this for free?
It's normal for people to ask many questions and wonder about the unknown. I had many questions in the beginning too, but I read and asked questions. I'm here to tell you my side and why I chose to go on this life changing adventure.
Let’s start at the very beginning. About five years ago, I was a Girl Scout leader. Another leader came to my house to take care of some scout business. We got on the subject of her looking for a kidney. She wasn’t ready for transplant but was searching because her doctors told her that it was going to be hard to find a donor due to her blood type. I looked at her daughter and thought, how could I not help her? If I was her, I’d want someone to help me. So, I did the testing and was a match. I was officially approved to be a donor. Four years went by, and we didn’t talk. She was never at the point that they would approve a transplant. I went on with changes of job, a new husband, and much more so I decided that it just wasn’t in the cards. It sat in the back of my mind over those years. I told myself that one day at the right time I would do this for someone. I felt like I was meant to do it.
January 29, 2020 – I was on my way to a management meeting at work and a co-worker came up to me asking if I had seen Jason’s page. My heart sank. I remember to this day the feeling of reading the words on that page. He NEEDED a kidney! He had worked in my building a few months before and then moved to a new building. I was in disbelief to what I was reading. How did this guy who looks to be in great shape have kidney disease? He had this the whole time I worked with him and no one knew? I went into that meeting in shock. I didn’t hear a word anyone was saying. I just kept thinking; I knew that I needed to get tested. I knew being blood type O+, the odds of me matching was pretty good. Finally, I took a screenshot of his FB page and sent it to him. Inside I was yelling at him for not telling us. I was so mad. We have so many buildings on our campus full of people that could get tested. How did he not spread the word? Why didn't he ask people to volunteer to be tested? I told him I would get tested.
January 31, 2020 – I called transplant and after asking me questions they said my blood draw kit would be arriving the following week.
February 6, 2020 - Received my bloodwork kit in the mail.
February 10, 2020 - Had my blood drawn and was told it would take about 7-10 days for results to come back.
February 20, 2020 - I got the call. They said I was a match! I could barely keep the excitement to myself. I wanted to tell him right then but I wanted to see his reaction when I told him. After telling a few people at work we decided to surprise him with his wife present. I was so excited to tell her. I had never met her before. The only thing I could think of was to message her on Facebook and hope she didn't open it with him around. My luck, she was sitting on the couch next to him. I told her we were a match but not to tell him. She said "How am I not supposed to tell him?". I know it had to be hard for her but this was going to be so much better. We decided 4 days later we would meet at BW3s with a bunch of people from work that we were close to.
February 24, 2020 – Buffalo Wild Wings Surprise party to tell Jason we were a match.
February 25, 2020 – I went back to work the next day excited that I finally got to tell Jason the news. It was so hard to keep it for those few days after getting the results. Co-workers were telling me how proud they were, hugging me, and asking questions. The word spread fast. Every day someone new would hear and would start asking questions.
February 26, 2020 - I received my paperwork and donor insurance card in the mail. This card is what you use instead of your own insurance. It paid for all of my labs, doctor visits, the surgery, and medicines.
February 27, 2020 - The following day I received all of my lab work papers in the mail. This included orders for bloodwork, urine study, chest x-ray, EKG, and Pap Smear.
March 5, 2020 - I was ready to get going. I went to the hospital lab and picked up my urine jug. I had them do my EKG and X-Ray's while I was there. These two tests were really quick and was out within 30 mins. The hospital was locked up like Fort Knox! A person at each door asking the basic Covid19 questions. Have you had a fever? Have you had a cough? Have you been around anyone who has had the basic symptoms? I got my sticker that says I passed my 5 wellness questions. I had to go alone. Only the person being seen was allowed in the hospital. Anyone else would have had to wait in the car. The EKG tech was amazed by my story. She said that it was so sweet of me to do this. It's crazy how different people along this journey such as nurses, techs, doctors, and others outside of the medical field like co-workers would know what I was doing and their whole mood would change. They would be in awe of how someone would volunteer to do such a thing. The blood lab nurses would always be rushing through to get people in and out but then when they asked what I was getting blood drawn for they would stop and ask questions. It's amazing what things like this will do to people. It makes people stop and think. They get curious.
March 12,2020 - National Kidney Day- Jason and I were supposed to go downtown to the Indiana State House and volunteer at the free screenings they were holding that day. Covid19 was just starting to get bad and it had other plans for us. The screening was canceled. Jason had this cake made but since the event was canceled he had it brought to his building at work to enjoy.
March 16, 2020 - I received the email that said testing was stopped until further notice. They said only essential surgeries would be happening and all testing was frozen. They said the minimum would be two weeks. Well, those two weeks turned into 2 1/2 months.
May 6, 2020 - Jason said he heard that some hospitals were starting to resume testing and surgeries. I wrote my coordinator and she said that it was safe to resume. We were so busy at work being a healthcare distribution warehouse, that I couldn't find time to go.
May 30, 2020 - Finally, I found time on a Saturday to squeeze in some labs. I filled my urine jug for the past 24 hours. Every time you urinate for 24 hours you have to put it in the jug and keep refrigerated. It was definitely not an exciting Friday night, let me tell you! I carried it back in the hospital in the brown paper back as if I was carrying in a bottle of whiskey from a liquor store. As awkward as it was, it was the norm at the hospital. They were supposed to draw 15 tubes of blood that day but only could take 14. The 15th couldn't be done on the weekend due to it being for TB. I went home and waited for the results.
June 1, 2020 - Results were all back within 2 days. My cholesterol was elevated but everything else was within normal range. I did go in and get my TB blood work drawn. I might have been flipping out for a few days while I waited for my coordinator to call me with the results. I could see the results on my online account that shows all of my medical records. I read everything I could find about high cholesterol. Would they say I couldn't donate? Would they say I had to get it down? I didn't want to tell Jason and worry him but, I did anyways. We would text back and forth every time we had any kind of appointment.
June 5, 2020 - My coordinator called and said everything looked good. What??? Good?? How was my cholesterol being high a good thing? It was highlighted red meaning out of normal range. That couldn't be good. She said it was fine. It wasn't too high and it could vary. It was nothing to worry about unless there was other issues or got higher. I was relieved but mad that I had stressed about this for a few days.
June 15, 2020 - Time to meet the doc. They did a CT scan with dye and decided my left kidney would be the one they would remove. I also had some more labs done. One was for parasites. Later that day, I had a zoom call for a psych evaluation.
June 25,2020 - Only thing left was having a couple more zoom calls but this time was with a social worker and living donor advocate. They wanted to makes sure I really wanted to donate. They also want to make sure no one was forcing me to do something I didn't want to do. It is their job to make sure you are making the right decision on your own.
June 30, 2020- The selection committee reviewed my case. They APPROVED me for donation. They talked to Jason's team and they told my team that Jason wasn't ready yet. He still had too high of a number for his kidney function.
Every month Jason was getting labs done to check his function. We were really impatient. We wanted to do the surgery. On August 27, Jason named my kidney, Larry the Lifesaving Kidney. I called him, Lefty Larry
August and September went by with more news that he wasn't ready. We wanted to get it done before the holidays and it wasn't looking too promising.
October 2, 2020 - Jason received his lab results back saying his function was at 19!!! Anything under 20 meant he should be approved to have the surgery. At 3:36pm he text me at work telling me his number. This was a Friday afternoon. He left his lab results with this transplant coordinator but didn't hear back. I had talked to my coordinator while he was waiting for confirmation from his team. They penciled us in for Oct. 23rd and Oct 30th. This way if the panel said he was ready, we would have a choice for an appointment.
We waited all weekend going crazy.
October 7, 2020 - Jason's team agreed that it was time. His coordinator was reaching out to the medical director to see if they agree with proceeding with surgery.
October 13, 2020 - The team met again and APPROVED that Jason is ready. Jason's docs told him to quarantine until surgery. He needed to stay safe because if he was to get sick then the surgery would be canceled. My doctors suggested I did too, so I took off the week before surgery so I could get the rest of my labs done and get things taken care of at home since I wouldn't be able to do household chores for awhile.
Getting closer...
October 19, 2020 - Met with coordinator who answered questions and signed paperwork. She also gave me such sweet gifts. I met with my coordinator, had labs done, and another meeting with the surgeon. Advocate called me and we talked some more.
October 22, 2020 - It's official, we were good to go. I was not even nervous. I will admit I was worried about my husband more than anything. He was so worried about me and now it just got real. I packed my bag and cleaned my house one last time. I was ready.
October 23, 2020 - See "THE BIG DAY"
First week home- I was exhausted, in pain, and so nauseated. I personally have never done well with any medicine. It usually makes me sick feeling, so I choose to only take necessary medicine in my day to day life. Any surgery you have where they make an incision you are going to hurt pretty good for the first few days. This one being 5 inches long was definitely pretty sore. The first week I was sore but I was numb around the incision. I am a stomach or side sleeper so sleeping was really hard to do. The first few days I couldn't figure out how to get comfortable. I put a normal pillow under my stomach but it felt too big. I tried a body pillow and that wasn't right either. I finally tried a round Purdue pillow that was filled with beads. You might be wondering if I am telling you a story about the Three Bears but it was a truly a process of trying different things. That Purdue pillow was my best friend for about 3 months. It was the only thing that made me feel comfortable on my side. It held my stomach up so wasn't stretching. Every time I got out of bed or tried to sit up it would pull my stomach if I tried to use my muscles to pull up. My husband would come pull me up or I would roll out of bed holding my stomach.
Week two - I was in so much pain because I wasn't taking my medicine due to them making me want to throw up. If I threw up it would pull my stomach something horrible which was causing more pain. I couldn't win either way. Remember when I said your Living Donor Coordinator is there for you? I should have reached out to her those first few days. Instead, I was miserable for no reason. She is there to help! If you have questions, concerns, can't manage pain, etc., CALL your coordinator! I finally emailed her, she then called in an anit-nausea medicine. After getting these, I could take my medicine and was finally comfortable. This week I was still exhausted. Walking to the mailbox felt like I had just ran a marathon.
Week 3- Jason was doing well walking miles already and kept asking me to meet up and walk. By week three I finally was not in pain anymore. I had moments where I hurt but not anything I couldn't handle. I decided to go to the park with Jason. We walked almost 2 miles before I was starting to get tired. I went home and slept the rest of the day. It was the best I had felt since surgery but also took everything out of me.
Next two weeks - I tried getting up and walking more but I was lazy and didn't push myself. Jason was already doing longer walks and feeling great. I was happy for him but at the same time I felt like a wimp. I just wanted to stay in bed and watch movies. Best part about having this surgery and being home all of November was Hallmark Channel had a million Christmas movies on!!!! I think I watched every single one.
Week six - I went back to work for about 6 hours a day. I sat at my desk a lot. I am a supervisor at a warehouse so I did do a lot of walking but was lucky enough to be able to sit when I needed to. I had a weight limit lift restriction. I think I could only carry up to 20lbs at a time. I tried not to lift anything at all just to be safe.
After about four months I finally was back up to my pre-surgery strength. I would get little pains in my stomach sometimes but for the most part was back to normal. I was still a little tired but not like I was.
At the six-month mark - My daughter had a cheer competition in Florida so we took a family vacation for the week. We stayed in a hotel and were on the 2nd floor. I had been feeling great. I was tired of walking to the other end of the hotel to go up the elevator so we decided to take the stairs. OH MY GOSH! I could barely make it up one flight without feeling like I had just ran. I had to keep stopping and was exhausted when I got back to my room. Who would have known that I was going to struggle with this. I thought I was better. Apparently my body wasn't completely back to normal. I also had my 6 month check up where they checked my vitals and kidney function. It is a quick blood and urine check through the lab.
Today- Most days I forget that I only have one kidney. I only have to go in for routine lab checks yearly now.
