It was a long weekend. My mom has always said that the third day after surgery is always the worst and Friday certainly was the hardest day.
I got out of the hospital on Wednesday morning (the day after my surgery). I was amazed at how quickly they discharged me. I learned this is because you heal better when you are at home and comfortable and there is less opportunity for infection when you are isolated at home.
The entire time I was in the hospital I avoided even moving my legs to avoid moving the muscles in my abdomen out of fear it would hurt (and it did hurt my muscles for the first few days). I tried to get out of bed twice on Wednesday morning with no luck. The first time, my night nurse encouraged me to try to get out of bed to get my weight, and to just stand next to the bed on the scale. I got both of my feet off the side of the bed but it hurt my incisions and stomach muscles hurt too much to lean forward and put my weight above my feet. I told my wonderful nurse, Eric, that I couldn’t do it and painfully laid back down, defeated. He encouraged me that the next time would be better. A few hours later, after the shift change, my new nurse came in to tell me that I was ready to go home, I just needed to get up to walk to the bathroom. They had recently pumped a bunch of fluids into my body to keep me hydrated, but since they were getting ready to take the catheter out they put a diuretic, Lasix, through my IV to get the extra fluid out of my body. This time around I made it to my feet but felt very lightheaded and had to sit down. My nurse didn’t let me get discouraged because a side effect of the Lasix is being lightheaded. I sat back down and ate my breakfast and drank a pitcher of water, a cup of juice, and a cup of milk. That took care of me being lightheaded.
By 9 AM they had my discharge papers in order and just had to take my catheter and IV’s out. Me, being the anxious person that I am, had a wave of nausea as soon as they told me they were there to take my catheter out (it’s never easy is it!?). They gave me more pain medicine and nausea medicine and waited for it to kick in. I was honest with my nurse about being anxious about the removal of the catheter and she told me not to be, that it is very easy to remove and won’t hurt a bit. She was right. A quick five minutes later I was done and they were taking out my IV’s.
Before surgery they started one IV (they had given me a shot of novocaine then inserted the IV with no pain whatsoever). When I woke up from surgery, I also had another IV on my other arm (with multiple marks from failed attempts and a blown out vein. The last thing I remember before going under was a doctor at my head explaining to someone how to do something, maybe how to put in an IV? Oh well, at least I wasn’t awake. My arm is still black and blue; I told my sister the other day I wondered if people thought I was on drugs because of it. Anyways, they took my IVs out and had me ready to be discharged by early afternoon.
My sister came to pick me up and took me home. I kept having moments where I thought to myself, “I only have one kidney!” I felt like I wanted guidance on what I should be eating or if I can have a cup of coffee. Everyone kept reassuring me that I am still a normal, healthy individual and I have no restrictions. I do have to drink a TON of water. My mom and I have drinking contests to make sure we drink our eight servings out of our 16 oz. cups. That’s a lot of water, especially for someone that has never liked to drink anything and my mom who has been on a restricted liquids diet for like ten years.
Initially I was surprised that my incisions didn’t hurt as much as I thought they would. Then it got worse, then better again. Immediately after surgery I was overwhelmed with not knowing what was a ‘normal’ or ‘okay’ amount of pain. I kept asking for pain medicine until I finally got an explanation for the types of pain itself and then the means that I should take to relieve or just get through the pain. There are multiple types of pain that a donor will experience. This is what I experienced:
- Surgery Incisions – during the beginning of my recovery I thought I was having menstrual cramps but I later discovered that the pain from the kidney feels like the worst menstrual cramps you have ever had, but slightly below your ribcage (for the donor). My mom and I both had a similar pain. At times I also felt like I had a badly pulled muscle in my side. I think it was just sore from using secondary muscles while the others are healing. It is also painful at times to breathe in deeply. I am still working on this because it feels like my lungs can’t fully expand. The laparoscopic incisions themselves no longer hurt. My dog did step on my stomach on the side of my incisions on day two and that brought me to tears, but aside from that they have not hurt very much. I have three laparoscopic incisions to the left of my belly button and the main incision is low on my hips, three inches wide and very similar to a c-section scar. I have internal stitches that will dissolve on their own and steri-strips over all four cuts. I was surprised the laparoscopic incisions were on the front on my body – I thought they were going to be more on the side. The laparoscopic holes were for the camera, a surgical tool, and a tube to inject gas into my body cavity. I still am unable to swivel all the way to my sides and still have to use my upper body to get out of bed. I wish I had done more arm workouts and pushups to prepare for the surgery. 😉 I have made some progress here, after four days I could laugh without it hurting, I could push the footrest down on a recliner after five days, and I am starting to be able to use some of my core muscles to assist myself when I try to get up out of bed but I still use a lot of my arm strength.
- Gas from Surgery – during the surgery the doctors pumped some kind of gas into my torso to make room to move around and get my kidney out. The gas eventually dissipates out of your bloodstream and bowels but in the meantime it causes a lot of pain, especially in your shoulders. My coordinator told me that this is especially worse in people who are fit and have tighter muscle mass. It felt like charlie horses in both of my shoulders and under my shoulder blades. The best thing to do for this was to drink water and walk to try to help the gas dissipate faster. I am still having some of this pain six days out from surgery but it is definitely less and less. This was brutal but I have been taking Gas-X to relieve the pressure as it travels out of my body (I am unsure if this is actually medically helping the gas or if it is in my head).
- Constipation – This kind of speaks for itself, but I was constipated for more than 4 days form taking pain medication. This was probably the worst part of my pain because I couldn’t do anything to fix it, because what I was doing wasn’t working. I took a stool softener twice a day (prescribed), servings of fiber like a Metamucil, prunes, and what ended up working the best was over the counter Miralax. I took seven doses (17 grams mixed with 8 oz. of water) on the hour, every hour, which isn’t bad because it is completely tasteless. I still went overnight without a BM. I started again the next morning and took 2 more doses before having success. I would recommend being serious about taking something from the beginning to not get stopped up. I felt infinitely better once I had a bowel movement.
- Hormonal – I found out that for both men and women who are living kidney donors, they have significant hormonal changes after the surgery because of the gas they use to fill up your body cavity. In women, it moves your ovary around so it often brings on your menstrual cycle either immediately or just earlier than normal. Lucky me, I got it on day 4 after surgery. In men, there is some side effect that causes temporary swelling in the left testicle which I guess, is pretty painful. I think women definitely have it better in this situation, but it has been brutal to have to deal with your cycle among all the other issues going on during recovery.
- Emotional – fear, anger, and sadness are normal feelings. I had a breakdown on Sunday because my mom was having some bladder and catheter issues and had to go to the emergency room to have a new one put it (because it was a weekend, not necessarily because it was an emergency). I found myself being very emotional and scared and angry wondering if we went through all of this for nothing. I wish they had warned us ahead of time that there would be procedures that my mom would need to get her bladder up to speed since it is like a muscle that hasn’t been used in years. I thought if we woke up and everything was working that we would be in good shape. It scared me that my mom might have a great kidney but her bladder was struggling to keep up. My mom is okay now that she has a new catheter that will stay in for two weeks to strengthen her bladder. I just had to acknowledge my feelings and have a good cry.
Once I could identify what kind of pain I was having and what I could do to relieve it, much of my anxieties went away. Most of the time I just wanted to know what I was experiencing was normal. I didn’t expect to wake up from surgery feeling like nothing was wrong. I just wanted to understand what I should tolerate and what I should take a pill to help me to tolerate since I had never had a similar experience to relate the pain to.
In addition to all of my pain management woes, my wonderful sister went home on Sunday. She was so helpful in taking care of my mom and I both. I think after years of helping to take care of loved ones you know what they need without ever having to ask. She always had my water and pain pills ready for me just when I needed it and still remembered to take me out for a walk and hounded me in just the right way to drink my water. I love her for taking care of us so well. As she was leaving us, my Aunt Kris came in from California to help us. My dad is on spring break this week also so he is around to take care of us too. We have wonderful family and friends (and dogs) to take care of us and spoil us with texts, prayers, visits, and calls just when we need it.
We are slowly getting better every day! Today has been a great day for my mom and I. She has had doctor’s appointments every day since the transplant. I just sit back and wait to heal. My first follow up appointment is two weeks after the surgery. As I sit and edit this, I have not had pain medicine in 16 hours. My prayers have been answered that we are healing properly and the pain is becoming less and less. With that being said, I will probably take a pain pill tonight to go to bed. It’s good for healing to not be hurting. Sometimes you don’t know how bad the pain was until it leaves you.