Before the surgery had even started they told my sister that most recipients are in the hospital for 5-7 days. However, since she has Lupus they would most likely want to keep her a little longer to make sure everything was going okay. She was discharged on the morning of day 4!
She got her grocery bag of new medications and we all went back to the apartment. Our days are now spent walking around the parking lot of the complex. It's nice to be outside again.
Thursday, February 14, 2013
Day 3 - Discharged and Pregnancy Pictures
Morning came and the doctors did their general drive by. All looked good so I was being discharged. Sweet!
I'll be honest these meetings often made me feel a little swept under the rug. I know they are busy but they still felt cold and left me feeling ignored. I only met my donor advocate and psychologist for 30 minutes that one day a few months ago. I think this is horrible. There are so many emotions after having this surgery and the hospital does nothing to address these or even prepare the donor for them. It's almost like once the surgeons get the kidney the hospital could care less about you... I know it isn't like this exactly but I think the hospital (at least ours) was severely lacking in this area.
Either way the nurse came in and told me I could put on my real clothes and wait around until my discharge papers came through. Great! I had bought some comfy pants a size up just for this day. When I tried them on, however they were too small! And not by a little. Awesome.... I looked in the mirror the first time being able to see all of me and not just a baggy hospital gown. I looked pregnant. I should have bought some maternity pants. Luckily I also had some stretchy yoga pants and those seemed to fit okay.
My digestion still wasn't up to par so my stomach was a bit distended. As in it was rock hard if you touched it. It has to go back to normal eventually. Right?
Since the surgery was in Florida and I lived in Kansas being discharged didn't mean going home, or even my parent's house for that matter. The transplant center is a ways from my home town so my parents rented a 2 bedroom apartment where we were all staying. It was a nice place though, and the only real struggle I had here was trying to sleep. Sleeping flat is not an option. I made a sort of sloping contraption out of three pillows and snuggled on those. It seemed to be mildly effective. I think it is still too soon after surgery to expect much more.
I'll be honest these meetings often made me feel a little swept under the rug. I know they are busy but they still felt cold and left me feeling ignored. I only met my donor advocate and psychologist for 30 minutes that one day a few months ago. I think this is horrible. There are so many emotions after having this surgery and the hospital does nothing to address these or even prepare the donor for them. It's almost like once the surgeons get the kidney the hospital could care less about you... I know it isn't like this exactly but I think the hospital (at least ours) was severely lacking in this area.
Either way the nurse came in and told me I could put on my real clothes and wait around until my discharge papers came through. Great! I had bought some comfy pants a size up just for this day. When I tried them on, however they were too small! And not by a little. Awesome.... I looked in the mirror the first time being able to see all of me and not just a baggy hospital gown. I looked pregnant. I should have bought some maternity pants. Luckily I also had some stretchy yoga pants and those seemed to fit okay.
My digestion still wasn't up to par so my stomach was a bit distended. As in it was rock hard if you touched it. It has to go back to normal eventually. Right?
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| How many weeks would you guess? From this side you can't see any incisions so I really do look pregnant! These are the pants I bought up a size that won't even go over my hips and were also giving me serious wedgie :) |
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| Yoga pants are SO much better! |
Day 2 - Swelling
At some point during the night I was switched from a normal bag of fluids to one with Potassium Chloride. I am not sure if this was something particular to me or if this is common but this stuff was painful at the IV site and by the next morning I noticed some odd swelling. I was only swollen on my left side. Only my left side. It was explained to me that as the fluids came in my body was processing them and taking a little bit to normalize but with a constant supply entering my left blood stream it couldn't process it fast enough and was swollen a bit. It was really weird but it didn't seem to effect much.The doctors came and went. Bowel sounds? Not much. Using the Incentive Spirometer? A lot. Incisions? Looking good. Any questions? Just the swelling. Alright, you're doing great.
I had forgotten to mention it in my previous posts, but during surgery they also shut down your lungs and put a tube down your throat to breathe for you. Pneumonia is a main concern afterwards so they give you a device that you inhale through trying to keep a little button in the smiley face as long as possible. They recommended 6-10 times an hour when awake. If this doesn't work well enough they want you to cough. I'm not sure how often I used it but it was a lot. A cough felt like someone poured hot acid on my diaphragm where the muscles had been cut. That little smiley face was my best friend for a few days.Right after they left the nurse came in and said since I wasn't using my pain pump so they were going to take it away. I could just request a shot if I needed it. I guess it's a use it or lose it type of thing and they keep a pretty close watch on it. Although, I was happy to see it go. Besides the other side effects I was having, the narcotics slow down digestion so it really wasn't worth me using.
So the day basically passed the same as before; pee, walk, sleep, repeat.
In the afternoon, my hand had become really red in addition to the swelling. They had wanted to move the IV to the other hand but I had accidentally gotten that hand caught on the bed and ripped it out the night before. They were going to put a new one in and put me on oxygen and had me watch the TV to avoid what happened last time but she said it wasn't quite working and gave me a break from the IV instead and clamped it off. It was really weird to walk the halls without the IV pole to lean on. You get so used it and it becomes a comfort almost. A few hours later though and I was back on the IV.
It had also been decided at some point that my lack of bowel sounds needed to be addressed. My sister on the other side of the hall had a bunch! Curse her. It was quick, unpleasant, and it worked. I don't think any other details really need to be given than that... I could also eat real food now too.
So back to the normal routine.
Sometime in the middle of the night one of the nurses had come in to check my vital signs and saw my IV hand and called in the other nurse. She also suggested moving the IV to the other hand but this time I was hooked up to the vitals machine. At the mention of another needle my pulse shot up and set off the alarm on the machine. The nurse pleaded with me to calm down. She said there was an order put in to disconnect my IV once this one finished and I would be done. So I opted to leave my other hand alone and just wait it out. My hand was killing me at this point but I was still terrified of the not breathing episode and wasn't keen on trying it again. The other nurse said he would record my pulse from before the IV was mentioned :)
I tried to sleep the rest of the night to pass the time quickly and it was removed about 4 hours later. Oh happy freaking day! It's crazy how they can cut through muscles and tissue and the pain is bearable but my hand has a reaction to something and it's horrible.
She also let me know that I would most likely be discharged the next day!
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| My niece loved playing with the hospital beds. |
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| My Parents, brother, sisters, 2 nieces, and me. |
Monday, February 11, 2013
Day 1 Incision Pictures
These are three of the four holes used for the instruments. The fourth is on my left side about the bottom of the rib cage. You can kind of see in the middle one some of the writing that the surgeon wrote during pre-op to mark the kidney they were taking. There is also a weird indent on the middle incision. I'm not sure if that came across in the picture too well. Along the bottom is an old scar from a boating accident about 10 years ago.
You can see the bottom incisions here where they pulled the kidney out of and the top incision is still covered by the hospital gown. You can also tell all of the swelling/bloating here too as you can't even really see my hip bone.
Day 1 - Walking
After transplant you become very, very used to discussing your bowel sounds and passing gas. This is important for most surgeries but even a little more so here since your intestines and bowels have to be moved out of the way to get to the kidney. I often had a stethoscope checking for sounds that my bowls were waking up. I seemed to be a little slower in this category... Yay.
Either way they cleared me for a liquid diet. Before hand I had lofty ideas of making my own juice and broth but I didn't have enough time before and definitely wasn't going to put in the effort afterwards. So I stuck to the broth and 100% juice they gave. It was actually better than I though. I didn't touch the sugar free popsicle or Ensure drink with high fructose corn syrup.The first day passed rather uneventfully. I was still on an IV and was drinking on top of that, so need less to say I had to pee a ton. As in every hour, two at most, and in a little basket on the toilet that kept track of how much. Yeah it was weird but you get used to that too. At least it kept me up and out of bed. After the trip to and from my sister's room I found that walking was pretty easy so I was allowed to walk the halls independently with my IV for support. I still had to keep the "Fall Risk" bracelet on though and got some funny looks each shift change :). I spent the day alternating between walking the halls, napping, and hanging out in my sisters room with my family. I used the Morphine a little bit but the pain wasn't that bad when moving around so much.
Friday, February 8, 2013
Waking Up
I have heard that some people are put under and not a second has passed before they open their eyes. This was not the case for me. It felt like a jolt hit me and I was suddenly awake, aware that time had passed and incredibly uncomfortable. I remember in the first moments they were trying to cover me up with a blanket and I was kicking it off having a difficult time explaining that I was hot. After a few seconds things seemed to settle down and I realized that I was in the recovery area. I heard the nurses talking back and forth about pain medication and one said that I was given a few shots of Morphine but thought I should be on Dilaudid since most people will not have adverse side effects with this. So they set me up with a pain button that I could push up to six times and hour. After a few minutes my Mom and other sister (not the recipient) came in to see me and told me everything went well and my sister would be coming in soon. I dozed on and off during this time and don't remember much other than giving an air-high-five to my sister once she woke up from the anesthesia too.
After a while they wheeled me away into my hospital room and my entire family joined me while waiting for my sister to get in her room as well. I talked with them a little bit but still continued to doze and don't really remember much until after they left that night.
At this point I started to get nauseous and threw up so the nurse gave me a shot of Zofran. Apparently, its an anti nausea medication that most people find amazing. However, after about an hour I threw up again and much more severe. I couldn't have any more Zofran because I had already had a rather high dose. I thought it might be the pain medication causing the nausea so I resolved to fall a sleep without touching the pain button again. Let me be clear that throwing up at this point is really painful in itself. A few hours later I woke up with incredible pain but not from the incisions. Before the surgery they pumped me with air and pulled most of it back out but can't get everything. All the left over air had settled into my shoulders. I read one website that compared this pain to child birth. I could see it as a possibility. It took about 8 pain pushes before it became better at which time I was nauseous again so I got another shot of Zofran. About another hour later I threw up. Again... I refused to push the pain button but needed to move the air out of my shoulders so the nurse suggested I get up and walk to visit my sister. Walking was actually much easier than I had expected and I made it to her room with no real issues, and the nurses help. At this point it was about 6am so I had made it through the first night.
After a while they wheeled me away into my hospital room and my entire family joined me while waiting for my sister to get in her room as well. I talked with them a little bit but still continued to doze and don't really remember much until after they left that night.
At this point I started to get nauseous and threw up so the nurse gave me a shot of Zofran. Apparently, its an anti nausea medication that most people find amazing. However, after about an hour I threw up again and much more severe. I couldn't have any more Zofran because I had already had a rather high dose. I thought it might be the pain medication causing the nausea so I resolved to fall a sleep without touching the pain button again. Let me be clear that throwing up at this point is really painful in itself. A few hours later I woke up with incredible pain but not from the incisions. Before the surgery they pumped me with air and pulled most of it back out but can't get everything. All the left over air had settled into my shoulders. I read one website that compared this pain to child birth. I could see it as a possibility. It took about 8 pain pushes before it became better at which time I was nauseous again so I got another shot of Zofran. About another hour later I threw up. Again... I refused to push the pain button but needed to move the air out of my shoulders so the nurse suggested I get up and walk to visit my sister. Walking was actually much easier than I had expected and I made it to her room with no real issues, and the nurses help. At this point it was about 6am so I had made it through the first night.
Pre-Op
Now that both of my sister have been discharged for a little while I'll go back and go through pre-op and the days following the surgery.
Pre-op started the day before the surgery. We had to show up first thing in the morning to get blood drawn, another EKG, get a special soap and meet with an anesthesiologist, our surgeons, and our coordinator. I found out during this time that my original surgeon was out of town and met the actual surgeon who would be performing my nephrectomy. He also realized that no one had asked me my opinion on the type of incision and he went over the two. The one I was told I was having was with an incision across my belly button. This one is a little harder to recover from and is a little more painful, however it is safer as they do not have to reach as far for the kidney. The other option was an incision along the bikini line which doesn't cut through as much of the abdominal muscles thus easier to recover from, and although both are safe, this one is slightly riskier as they have to reach up from the bottom to get to the kidney. I decided to stay with the belly button incision. After this my sister went to dialysis one last time and we were given tentative surgery times of 7:30am for me and 8:30 for my sister. We had to call and confirm that night to make sure a higher priority surgery didn't come up to push our times back, but nothing did so I was required to show up at 6am and my sister 7am.
The next morning we all woke up at 5am and my sister and I grabbed another shower with the soap they had given us (we had to use it the night before too). Then we went and checked in at the hospital. Pretty much as soon as we got there I was taken back to have some last minute blood drawn (I believe a final pregnancy test which was taken at pretty much every step) and to have one last urine sample (which is difficult when I hadn't been allowed to drink the night before). After that they took me into a curtained room and had me change into a hospital gown and get into a bed. Two people were allowed to be there with me but my mom and dad just traded places after a while so both my sister and I would have someone. Then the nurses came in to give my an IV and that's when things got a little scary for a moment. I am not afraid of needles or blood but I have been known to pass out occasionally. So after they placed the needle and catheter in my hand I let them know that I wasn't feeling so well. I sat back and the next thing I know I was waking up from a dream with a lot of people around. I guessed I had passed out, started to shake, and had stopped breathing. Needless to say my mom was a little freaked out too. They said it was a "vagal"reaction that some girls have although the shaking and not breathing wasn't normal. Luckily it didn't alter anything for the surgery. My surgeons came in next and let me know they were altering the procedure and I would actually have the bikini line incisions as I am "so small and compact" and they decided that the other incision wouldn't be as safe on me. Last person to visit was the anesthesiologist who explained some things and had me sign some forms and then I was wheeled off.
I had elected not to have anesthesia before leaving the curtained room so I could see the OR. There was a ton of people walking there with me especially since this was a teaching hospital and several students were watching as well. Along the way one of the doctors was quizzing them on the procedure. Once in the room they had me transfer to the operating table and started there pre surgery checks. I didn't understand a lot of it but I know he asked someone what kind and how much antibiotics were on hand and the same thing for blood. It seemed like each answer came from a new person responsible for monitoring only one thing. In the middle of this one of the students covered my mouth with an oxygen mask and after a few moments they started giving me the anesthesia. Then I was out.
Pre-op started the day before the surgery. We had to show up first thing in the morning to get blood drawn, another EKG, get a special soap and meet with an anesthesiologist, our surgeons, and our coordinator. I found out during this time that my original surgeon was out of town and met the actual surgeon who would be performing my nephrectomy. He also realized that no one had asked me my opinion on the type of incision and he went over the two. The one I was told I was having was with an incision across my belly button. This one is a little harder to recover from and is a little more painful, however it is safer as they do not have to reach as far for the kidney. The other option was an incision along the bikini line which doesn't cut through as much of the abdominal muscles thus easier to recover from, and although both are safe, this one is slightly riskier as they have to reach up from the bottom to get to the kidney. I decided to stay with the belly button incision. After this my sister went to dialysis one last time and we were given tentative surgery times of 7:30am for me and 8:30 for my sister. We had to call and confirm that night to make sure a higher priority surgery didn't come up to push our times back, but nothing did so I was required to show up at 6am and my sister 7am.
The next morning we all woke up at 5am and my sister and I grabbed another shower with the soap they had given us (we had to use it the night before too). Then we went and checked in at the hospital. Pretty much as soon as we got there I was taken back to have some last minute blood drawn (I believe a final pregnancy test which was taken at pretty much every step) and to have one last urine sample (which is difficult when I hadn't been allowed to drink the night before). After that they took me into a curtained room and had me change into a hospital gown and get into a bed. Two people were allowed to be there with me but my mom and dad just traded places after a while so both my sister and I would have someone. Then the nurses came in to give my an IV and that's when things got a little scary for a moment. I am not afraid of needles or blood but I have been known to pass out occasionally. So after they placed the needle and catheter in my hand I let them know that I wasn't feeling so well. I sat back and the next thing I know I was waking up from a dream with a lot of people around. I guessed I had passed out, started to shake, and had stopped breathing. Needless to say my mom was a little freaked out too. They said it was a "vagal"reaction that some girls have although the shaking and not breathing wasn't normal. Luckily it didn't alter anything for the surgery. My surgeons came in next and let me know they were altering the procedure and I would actually have the bikini line incisions as I am "so small and compact" and they decided that the other incision wouldn't be as safe on me. Last person to visit was the anesthesiologist who explained some things and had me sign some forms and then I was wheeled off.
I had elected not to have anesthesia before leaving the curtained room so I could see the OR. There was a ton of people walking there with me especially since this was a teaching hospital and several students were watching as well. Along the way one of the doctors was quizzing them on the procedure. Once in the room they had me transfer to the operating table and started there pre surgery checks. I didn't understand a lot of it but I know he asked someone what kind and how much antibiotics were on hand and the same thing for blood. It seemed like each answer came from a new person responsible for monitoring only one thing. In the middle of this one of the students covered my mouth with an oxygen mask and after a few moments they started giving me the anesthesia. Then I was out.
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