I can't believe it's been one month since surgery! It seems like it was only a week ago. I have a lot to fill everyone in on, so just be warned this post is really, really long! I tried to break everything down by days, and I'm sure I missed some little things, but here it is!
Tuesday, March 24th:
When I did my last post, I was hanging out in my hospital room, had just started my "sparkling laxative" and was relaxing. My friend Caroline surprised me and stopped by to visit, and she insisted on creating a video. Of course she decided to come and do this right after I took all my make up off and changed into my hospital gown! :)
The guy you see briefly in the video was my nurse, Ken. He was there that whole night, and he was awesome! He is Filipino, so we were talking about the lead singer of Journey and somehow we started talking about lumpia. He was raving about it. I had never had it, but it's some type of egg roll. Ken also gave me a kidney pillow, and a liver one too. He gave me the liver pillow in case I ever have too much to drink and need an "extra" liver, haha. The pillows have a marker with them so people can sign it, and you can use them to protect your abdomen after surgery. I've seen them in pictures, so I was excited to get mine!
Around 9pm that night, I had to change into the hospital gown and had an IV started in my hand. That actually hurt quite a bit, and made me a little light headed, but I was ok after a little while. I wasn't allowed to have any food or water after this point. I was getting kind of nervous at this point, because the laxative hadn't kicked in yet, and now I was hooked up to an IV so if I had to use the bathroom I would have to get someone to come in and help me. Not an ideal situation if all of a sudden you have to go. Every time he would come in and check on me, I would ask when it was supposed to start working. He said sometimes it takes a couple hours. A few hours passed and it still wasn't working. He paged the surgeon to see what they should do, and she said if I go, great, but if I don't it's not a big deal. Between people constantly coming in to check on me, worrying about the laxative all of a sudden kicking in, and not being able to figure out how to turn the TV off, I did not get much sleep that night!
Wednesday, March 25th:
I don't remember exactly what time it was, probably around 3am, the party was ready to get started! I had all kinds of people in and out of my room. My mom, dad and sister arrived. I had to wipe my entire body down with these weird wipes and change into a new gown. A word of advice to any females having to use these wipes: don't wipe your private area with them, unless you enjoy a burning, stinging sensation down there! Remember the laxative I drank the night before? Well it decided to finally kick in about half an hour before they took me back for surgery. I guess that's better than spending all night doing it!
Dr. Perry, my surgeon, came in to go over final details and sign her initials on my left side to make sure they took the correct kidney.
After that, it's all kind of a blur to me until I got to the operating room. All kinds of people showed up to take me to the OR. I feel really bad, because I wanted to make sure I gave my parents & sister a hug and tell them I loved them, but I honestly don't remember if I did. At that point, I was freaking out inside because I was afraid I was going to have to poop while they were taking me to the OR and I didn't know what to do if that happened! It sounds silly, but that's exactly what I was thinking about that at that moment.
It was exactly 5am when they wheeled me through the doors of the OR. They warned me ahead of time that the room would be really cold, and they weren't kidding! They started putting warm blankets on me right away. They transferred me from my bed to the operating table, which was really lumpy. They taped some sort of sensor to my middle finger on my left hand. I'm guessing it was to monitor to my heart. I had to state my name, date of birth, and tell them what I was having done. I think throughout my hospital stay, I said my name and birthday at least a hundred times. The anesthesiologist was saying that they usually joke and tell people it's so cold in the OR because they need to keep the meat fresh, but this time that was actually true! Dr. Perry leaned over me and told me she hoped I wouldn't remember him saying that, but of course I did. Then they put the oxygen mask on my face and told me to take deep breaths. The anesthesiologist put his hands over the mask to make sure it fit tightly on my face. Someone said "ok, this is going to sting a little bit." I assumed they were getting ready to put in another IV or something, but then I could tell they had started pumping the gas. I remember taking two, maybe three breaths and then I was out!
Since I already had a room at the hospital, my family was allowed to stay there while I was in surgery so they could relax and have more privacy. One of the nurses or assistants in the OR had my mom's phone number so she could call her with updates. My mom said they called her around 5:45am to tell her they had started the surgery. Todd's wife was also having her surgery in Rochester around this same time. I can't even imagine how Todd felt, having his wife and his donor going through surgery at the same time and knowing that by the end of the day he would have a new kidney!
I think my mom said it was around 9:00am that the surgeon came to my room to let them know surgery was done, everything was great, and I would be in recovery for about an hour or so. Dr. Perry also told them that she forgot to take a picture of my kidney. I had asked for one because I thought it would be cool to see what it looked like. She contacted Todd's surgeon in MN and he said he would get a picture for me.
I remember waking up in recovery. I remember knowing where I was, but not really sure what was going on. I was trying so hard to keep my eyes open to see what was going on, but it was impossible. The first thing I did was put my hand on my neck to see if I had an IV there. The night before, my anesthesiologist told me that sometimes they need to put the IV in the neck, and he wanted to warn me so I didn't freak out if I woke up with one. Thank God I didn't have one! People kept coming up to me, asking what my pain level was on a scale of 1-10, and I think I kept saying 10. I also remember that as I first woke up, whoever was behind the curtain beside me was freaking out after he woke up and was trying to rip out his IV and all the things attached to him. All of his machines were beeping, and people kept rushing over to him to calm him down. I don't know if I was imagining this, or if it was real, but I remember hearing someone talking to the guy and I think he said his name was Jerry and he was there to do an ECG. I don't think I mentioned this before, but Jerry is the guy who did my ECG during my pre-op appointments the day before surgery, and he was very good looking! When I heard him behind the curtain helping the other patient, I was trying to think of something I could do to get him to come over and see me, haha! But then, I think I passed out. I'm not really sure if it was him or not, and thinking back now, I don't really think it was because it doesn't make sense for them to do that during recovery, but maybe they do. Maybe I had one too while I was asleep. I guess I'll never know for sure!
I don't really know for sure how long I was in recovery, but I think it was longer than expected. I remember having a really hard time waking up. I don't remember leaving the recovery area or riding in the elevator or however I went to go back to my room. I do remember that as they were wheeling me through the doorway to my room, I felt like I was about to burst into tears, but I don't think I did. I want to say it was around 11am or so when I got back to my room. Those next few hours are pretty foggy. I think I would pretty much wake up, push my pain pump to give myself morphine (which I could do every 8 minutes, and it was wonderful!) and fall asleep again. I vaguely remember people coming into my room and talking to me. My friend's daughter works at Mayo and I remember waking up and her being there to tell me her mom had been asking about me, but I don't remember what I said to her. I had this little breathing thing that I had to take 10 deep breaths into every hour to measure my lung capacity and make sure I wasn't getting any fluid in my lungs. The worst part about doing that was that my mouth & lips were so dry from having the tube down my throat during surgery. I was so thirsty, but was only allowed to have ice chips at that point. At one point, my parents had just left my room to go get food or something. My ice chips had melted enough that I had a cup of water. I was so thirsty, so I drank it. Shortly after, I started heaving like I was about to get sick. I think I freaked my little sister out because I was making noises but couldn't really talk. She asked if I was ok and I motioned to her that I was going to get sick. She didn't know what to do, so I pressed my call button to get a nurse. She came over the intercom and asked what I needed, but I could barely talk and she couldn't hear me. I tried again and said as loud as I could that I was about to get sick. Someone came in with a bag right at the point where I couldn't hold it in anymore. Talk about a painful experience! It's bad enough to get sick, but imagine doing it right after you had your abdomen cut open! I guess that's why they only let you have ice chips!
By late afternoon, I was starting to feel more alert, and I wasn't pushing my pain pump as often as I was before. Right around dinner time, they had me get out of the bed and sit up in a chair. That wasn't too bad. I also had these pads wrapped around my legs that constantly massaged my calves to help prevent blood clots in my legs. And how could I forget to mention the catheter?! Before surgery, that was probably the one thing that scared me the most. I don't know why I was so worried about it, but it turned out to be not bad at all. It was a weird feeling though. I would get the urge to pee, but then the feeling would just go away. I was kind of worried because I hadn't peed at all. I remember saying something to my mom about it, about having the urge to go but then it was gone and that it probably wasn't good that I haven't peed. She told me I had been peeing all day. I said no I haven't, I haven't actually gone. Then I discovered the bag beside my bed, filled with pee. I thought that you still had to actually "go" and it would just go through the tube. I didn't realize the tube just takes it out for you, and you don't have to do anything! I wish I could have one of those all the time! :) The only time it bothered me was when I would have to stand up. It wasn't painful, it just put pressure on the bladder, which felt weird.
After I was sitting up in the chair, I was allowed to order dinner. I ordered a smoothie and banana pudding. My friends Anissa & Courtney stopped by to visit. While they were there, my nurse had me walk a lap around the hall way. I had a big walker to hold onto for support. About 30 seconds after leaving the room, I got sick again. Apparently the few sips of smoothie that I had didn't agree with me. After that, I never got sick again.
While Anissa & Courtney were visiting, guess who else showed up? My nurse from the night before, Ken, with lumpia! I guess he was serious when he told me he was going to bring some for me. He came in on his night off, just to bring me lumpia. Unfortunately, I had no appetite at that point, but my family enjoyed them, and I had some once I was home from the hospital. They were pretty good! My friends Caroline & another Courtney also came to visit that night. I was feeling much better as the night went on.
My mom was keeping tabs all day on Todd & Jennifer in MN. Jennifer's surgery went well. I got a text from her sister around 4:30pm that day, saying Jen was doing great and that my kidney had just landed in Rochester. She sent another text around 7:30pm to let me know Todd's surgery was a success, and his new kidney was already making pee! His surgery went a lot faster than what the surgeon expected. I was so thankful to hear that!
Thursday, March 26th:
It was definitely an early morning! The nurse came in before 6am to make me get out of bed to weigh me. Seriously? I feel like that did not need to be done that early in the morning. I also had blood drawn shortly after, and a shot of heparin in my belly, to help prevent blood clots. I also had antibiotics & an anti inflammatory and another type of pain killer given to me through IV.
I also heard from Todd bright & early that morning!
I was so happy to hear he was doing so well. We talked on the phone for a few minutes shortly after. My family came back later that morning, and the day was filled with a lot of sitting around, walking the hallways, and napping. They removed my pain pump & my catheter that morning as well. My appetite was back, so I had a cheeseburger for lunch and pizza for dinner! I was really looking forward to the food there, because their cafe food is so good, but the hospital food is definitely not the same. Honestly, it was pretty gross. I don't remember if it was this day or the day before, but I started to feel a couple twinges of pain in my left shoulder. I assumed these were the dreaded gas pains that I had heard so much about. When they do laparoscopic surgery, they fill your abdomen with gas, and a lot of it is usually trapped in your body after they close you up. For some reason, as the gas is trying to escape, it tends to settle in the shoulder area, causing a lot of pain. Most people say the gas pain is the worst part about donating. I was very fortunate, because those couple of twinges were the only gas pains I had. They switched me over to Percocet for the pain. I had one pill around 10:30am, and another at 6:30pm, and after that I never had to take another one.
I almost forgot to mention...on Thursday, I got to meet Jessica. Jessica lives in WI and we connected on Facebook because we happened to have the same coordinator at Mayo. We also have the same frustrations with her, haha! Jessica was donating a kidney to her cousin, who lives here in Jacksonville. Her surgery was two days after mine.
Friday, March 27th:
Another early morning, with the same routine. Wake up to be weighed, have blood drawn, get shots, etc. I think I got my IV out sometime that morning. I was scheduled to be discharged that morning, but there was confusion between the nurses as to whether or not I had to have a bowel movement before I could go home. I was peeing & passing gas, but no bowel movement. Eventually, they gave me the all clear to go home, since I was passing gas. :)
I got home around noon and pretty much slept the rest of the afternoon.
My mom & sister left to go back home on the 28th, and my dad stayed until April 3rd. It was a pretty boring week! Lots if sitting around, watching movies, and running a few errands here and there. One week after surgery, I had my first big outing. My dad & I went to zoo. We were there for a few hours, and I only needed to stop and take a break once. I had a couple of visitors at home, got a delicious Edible Arrangement, and I recieved dozens of cards. My dad had given my address out to people at church back home, so I was getting cards from all sorts of people, most of them I didn't know. My mom put together a huge "basket of sunshine" and brought it to the hospital. It was full of just about anything yellow she could find!
All the cards and gifts were great, but I received a few things that were very, very special. My sister sent me a necklace that she had made for me with 3 different charms. She included a note telling me what each charm meant. The "sisters" charm for me to know she's always with me, the angel wing charm to have a guardian angel watching over me, and the white charm for my pure and giving heart. My sister and I have not had the greatest relationship throughout our lifetime, so for her to give me such a thoughtful gift really meant a lot.
Imagine my surprise when I recieved a little blue box from Tiffany's in the mail! Todd and his wife sent me a beautiful bean necklace that looks like a kidney. I absolutely love it, it's perfect!
The necklace was more than enough, but a couple days later Todd sent me another gift. He sent me a trinket box with an engraving on the top. It's hard to tell from the picture, but it says "Kari, you are the reason the sky is blue..." I love how he incorporated the title of my blog. :)
My recovery has been great! I went back to work on April 6th, just shy of two weeks post surgery. I had my two week follow up on April 8th. My GFR (basically my kidney function) was at 43%. It was about 90% before surgery, and 39% the day I was discharged. My creatinine (something that measures kidney function) was at 1.4. Normal range is 0.8 to 1.1, so I'm doing pretty well. At this point, my incisions have healed pretty well. I had a piece of the internal stitches poking out last week, but it's since dissolved and fallen off. Below are some pictures.
This was taken 3 days after surgery. The 2 smaller incisions on the right side are from the laparoscopic tools, and the big one below my belly button is where the surgeon inserted her hand to assist with the surgery & remove my kidney. The small bruises on the left side of the picture are from where I had the shots in my belly.
The next picture was taken 10 days after surgery.
The next picture was 17 days after surgery.
And this last picture was taken on my one month kidneyversary!
Overall, I'm feeling great! I never had to fill my perscription for pain killers and never had any gas pain. I would have some occasional discomfort, but nothing that Tylenol couldn't handle. It was uncomfortable to sleep for a while, because I'm a side sleeper, but after a couple weeks I was able to sleep comfortably on both sides. My energy level has been pretty good. The first week back at work was a little rough. I would be completely exhausted by lunch time, but it's gotten better and better each day. I'm definitely not as worn out as I thought I'd be. I still can't lift anything over 10lbs for a couple more weeks. I'm able to take a bath, go swimming, etc now that I've reached the 4 week mark, but I haven't done so yet. I still have a little bit of pain when I cough, sneeze or laugh, but it's not that bad anymore. My biggest problem has been forcing myself to rest and not over do it. I have felt so great that it's hard to remember I just had surgery, and I tend to try and do too much. I have to remind myself that I'm still healing.
Todd & Jennifer are doing great. They had to stay in MN after the surgery, but they were cleared to go back home to IL a little over a week ago. There was a little bit of a scare a couple weeks after surgery. Some of Todd's labs weren't very great, and they were worried he was having a rejection episode. Transplant recipients are put on a lot of medications after surgery, and if the levels aren't just right, they can be toxic to the kidney. Eventually, things balanced out and he was cleared to go home. As of this past week, his creatinine is down to 1.86! That's a big improvement! I'm praying a things continue to do well and improve. Todd & Jennifer got to meet some other members of our chain, and it sounds like everyone is doing well. I don't know much about them, and I'm still waiting to hear back from my coordinator (imagine that) to find out how everything went and to see if they were able to build on to the chain. Hopefully I'll get an update soon!
I have to say that the nurses and staff at the Mayo Clinic were phenomenal! I can not say enough great things about them. They all knew why I was there, obviously, but none of them knew I was donating to a stranger. I was honestly shocked by their reactions. Two of my nurses said in the entire time they've worked at Mayo (5 yrs & 15yrs) I was the first person they knew of to donate to a complete stranger. My parents said they talked to another nurse who had been there 16yrs, and she said I was only the second non-directed donor she had ever seen. Wow! I knew that non-directed donors were rare, but only 2 in the last 16 years?? That blew me away. That statistic needs to change. I'm currently exploring different ways that I can be a living donor advocate. I think there could be so many more living donors if there was more education, and I'm hoping to help change that.
I also want to give a huge shout out to my parents. I would not have had such an easy recovery if it weren't for their help. They cleaned, washed my windows, went shopping, did yard work and probably a million other little things. Thanks mom & dad! I love you!
And thank you to everyone for your thoughts, prayers, messages and support. I recieved so many messages and texts, some from people I haven't seen or talked to in over 15 years. It all meant so much to me.
This won't be my last post. :) I'll update everyone on my progress periodically, and I'll definitely share my kidney picture, if I ever get it!
February 2016:
It was technically a few weeks early, but in February I had my one year follow up at the Mayo Clinic. I couldn't believe it had already been a year! I had the usual urine and blood tests as well as the iothalamate clearance test. I even gave some extra blood for the Biobank to be used for research at Mayo. All of my results were great! My creatinine was 1.3 (it was 1.0 the day before I donated) and my kidney function was at 69%, so there was no longer any concern there! My incision healed normally and overall I felt great, so they sent me on my merry way until my two year follow up.
Speaking of my two year follow up, since I am waaaaaay late in posting this update, it's almost time for my follow up! I promise I won't wait so long to update on that. :)
Overall, my first year after surgery was great! I got really lucky and had a pretty easy recovery with minimal side effects. I ran my first 5k (without having to stop and walk) about 3 and a half months after donating. That was a HUGE accomplishment for me!
Over the last few weeks, I've had a lot of exciting things going on related to this whole experience...but I can't share all the details quite yet! ;) Soon though, I promise!
One last thing before I close out this update. Remember that picture of my kidney that I had requested during my surgery, but it seemed like I was never going to get it? Well I finally did!! Here's my left kidney in all its glory!
