Hi everyone. I know I promised a post surgery update long ago, but I was unable to write it until now. I'm sorry for being away so long.
On November 18th, 2011 I donated my left kidney to my aunt Shirlee. On February 6th, 2012 she passed away in ICU at OSU Medical Center.
When we checked into the hospital on November 17th, my aunt had over 20 lbs of excess fluid on her. She had not been on dialysis yet and had been trying to avoid dialysis since we knew the surgery date was coming up. She was late arriving at the hospital because she had been sick all morning. Once we checked in at the hospital they evaluated my aunt and said she had to get at least 10 lbs of fluid off before they could proceed with surgery. They ran dialysis through most of the night. She continually had complications with blood pressure during dialysis and her body didn’t seem to tolerate dialysis well. Surgery was rescheduled for later in the day, but she never lost enough fluid. Finally the doctor’s decided it was good enough and they released her for surgery.
They took me first for surgery. I was so excited to get it done. I just remember being so sad and tired of seeing her sick, I just kept thinking once it was done she was going to get better. I just wanted them to hurry so she could start feeling better. My whole family was there to pray with us and see me off. It was a touching moment to see them all lining the hallway, especially my husband. I looked into his eyes as they were wheeling me away and I felt so loved and reassured.
I’d been gone a little while when my aunt’s doctors called the surgical team and told them to stop because my aunt’s blood pressure was unstable. The surgery team said it was already too late, they already had me in surgery and had me open. They had to make the decision to continue with surgery at that point.
The surgery itself went very well. The doctor’s were impressed with the kidney and its health and size and said that it began working immediately. The kidney proceeded to flush all of the fluid off of her over the next 24 hours or so. It actually became hard on the rest of her system because the kidney was working too well and was stressing her other organs.
Recovery for me was hard. I’ve always been pretty physically strong and healthy and I’d never had surgery before and I knew I was unprepared for what it would feel like afterward. I never was able to decide if it was harder or easier than I thought it would be. The first two days after surgery were the most miserable of my life. Thankfully it’s pretty hazy due to the drugs. I just remember half of me wishing everyone would go away so I could be miserable in peace and half of me feeling pathetic and scared and not wanting people to leave me. There were times in the night when the pain medicine made me so sick and I think I finally knew what real pain and sickness really felt like.
At first my aunt did feel better. Everyone said to expect her to feel amazing and have all kinds of energy from the steroids and from finally having a functioning kidney after being sick for so long, but that never really happened for her. As we learned later, infection had probably set in almost immediately and it took a while for anyone to realize it was there.
Everyone said that they would be trying to get me up walking right away and I needed to walk in order to start feeling better. But that didn’t happen at OSU. They pretty much left me alone and I had to keep asking for them to help me get up. I was basically ignored the first couple times I asked and then finally an aid helped me to get up and walk to the bathroom. The hospital was actually trying to push me out before I had even walked out of my room (about 1.5 days after surgery), but I was scared to leave so soon. I pushed back and they kept me one more day, but they weren’t happy about it and they pretty much ignored me for the next 24 hours. The one thing I can tell you from all of my experience, avoid being in the hospital during the weekend if at all possible. It’s a totally different place. I felt like all the doctors and nurses went home for the weekend and I was basically ignored.
My recovery at home went really well. I’m an independent person and I hate having people do things for me, so I pushed myself pretty hard. I was off of the pain meds after two days at home and just took some Tylenol PM at night to help me sleep. I was driving after a week or so and could do things around the house (while being very careful not to lift things that were too heavy or to move the wrong way). I just tried to listen to my body and do as much as I felt like it could take. The biggest issue I had was being tired all the time and needing to nap. I also think I spent two solid weeks with that kidney pillow “glued” to my stomach. I was so thankful for it. It made me feel really secure and it helped with getting up and down and provided a cushion between me and the seat belt. I also learned I couldn’t walk around stores much. I’d get to the back of the store and then feel like my guts were going to fall out and be afraid I couldn’t make it back to the front. It was a horrible feeling. I went back to work for part days after 3 weeks. I had a desk job, but it was still very hard on me. Don’t listen to the people who say you only need a week off of work. Everyone said my recovery was amazing and fast, but three weeks was still almost too soon for me. Making a long commute, climbing stairs and sitting at a desk all takes a toll on you.
As for my aunt… she was home for about two weeks and just got sicker and sicker. She eventually ended up back in the hospital. She had several surgeries to remove infection and dead tissue. She never really made it out of ICU. After fighting for about 2 months in ICU, being on a vent, having heart failure, and multiple surgeries… she ended up going home to be with Jesus. I feel like I could write a book about what she went through and what me and the rest of my family went through, but for the purposes of this forum I’ll keep it short.
Basically, my aunt was much sicker than I think any of us really realized. I don’t think surgery was the best choice for her, but that’s something that we know now that we didn’t know then. On the other hand, I’m not sure she could have tolerated dialysis long-term either. Her body didn’t respond well to it any time that she had it before surgery or while she was in ICU.
I’m very disappointed in the transplant community after my experience. I feel like everyone is so afraid that if people knew the truth about how hard transplant is on donors and recipients then they wouldn’t want to do it. That’s not true. If I thought it would save my aunt’s life, I would do it all over again, even knowing what I know now. I’m just disappointed that people who are “in the know” spent so much time trying to paint this rosy picture and glossed over all of the possible negatives. I’m also disappointed that my aunt was so uninformed. She didn’t get any of the attention or training that I got pre and post surgery.
My aunt officially died of infection and intolerance to anti-rejection medication. I understand now that this is fairly common. Many people who have transplants are so sick to begin with that their bodies can’t fight the inevitable infections and can’t tolerate any of the different anti-rejection medications. Maybe it’s partially our fault. Maybe we didn’t want to hear the negatives, but I feel like it’s partially the transplant centers fault as well. My aunt’s other doctors had a lot of questions and reservations about her having a transplant, but the transplant team “poo-pood” all of their concerns. And then the transplant center ignored her worries after she went home and was afraid that something was wrong.
I just want to caution people to do research on their own. Everyone who talks to you has their own feelings and they’ll try to sell you on what they think is right. Get informed and try to make your own decision about whether surgery is right for you. I don’t regret the surgery for my sake, but the loss of my aunt irreparably damaged her daughter, my family and me. You have to decide if you’re prepared to lose your loved one after surgery, because it does happen.
As for me, I’m doing pretty well these days. I have a lot of emotional baggage that I’m trying to figure out how to work through. This is the first time I’ve been able to talk about the ordeal really. I find that most of the time I try to not remember any of it. Physically I’m pretty good, except that I do continue to have a good deal of pain in my side and lower back, especially after being on my feet for very long. I call it my ghost kidney pain. I don’t like looking at my scars in the mirror. I thought they’d be a sort of badge of honor reminding me that I honored God by sacrificing of myself for someone else. Instead they’re a reminder of losing my aunt and the fact that my cousin is now an orphan. I also have to deal with grieving family members. Some of whom even blamed me after my aunt’s death and didn’t want to see me. You never imagine that something like that can happen, but it can and does. It’s heartbreaking. But God has proven His love to me over and over again and I believe that there will be a day that He’ll make something beautiful out of this too.
I didn’t write this to discourage people from donating. I think giving a part of yourself to save someone else’s life is the most amazing thing you can do. I just think that you need to know that this is a gamble. Things can turn out wonderful or things can go all wrong. If you’re aware of that ahead of time you and your recipient can both evaluate your situations and both decide if the gamble is worth the risk to you.
If you have any specific questions for me, please feel free to ask. My own journey has been hard and disappointing, but I know others’ journeys have been miraculous and amazing and I still believe in the miracle of transplants. I would love to provide you with any information about my personal experience that you’d like.
Most of all, I wish you blessings upon blessings for your transplant decision and process. Remember that no matter what happens, this world is our temporary home. What comes after is what really matters. My greatest consolation is knowing that my aunt loved God with all of her heart and she’s with Him now just waiting for the day that we all join her for our eternal lives with our Father.
With Love,
Amanda
Topic: My Transplant Experience.... Finally. (Read 9263 times)