written on October 23, 2014 and October 27, 2014
Day 6 (Thursday Oct 23) post-transplant and I’m starting to feel better.
Don’t get me wrong. The first three days in the hospital I felt incredible – mostly because I was on high-dose prednisone, which gives you a tremendous amount of energy. Luckily the side effect of moodiness never took hold, so with a new working kidney, my first three days were amazing.
Then Tuesday they started removing the tubes and they lowered my prednisone to 10 mg for the day (it was 500 mg on Friday, 250 mg on Saturday, 100 mg Sunday and 50 mg Monday). They also released me from the hospital on Tuesday afternoon. They removed the foley catheter (the one that was draining my bladder for me) around 8:30 am and I had to start peeing on my own. There was a bunch of excitement to have that catheter removed, until the pain of having to pee set in. I think the anesthesia was still affecting the bladder, because starting to pee became the most painful, impossible thing to do. Sometimes it would take up to a minute, to stand there as your bladder muscles throbbed in agony, trying to get the stream started but nothing would come out. Yet the urge was still there – I still had to pee.
Finally this morning the pain has subsided quite a bit. Now I’m not so afraid of peeing – it doesn’t hurt nearly as much. But that took the last two days to get to that place. There’s still some pain. Nothing as bad as Tuesday or even yesterday though.
I know I said I would be writing at least one blog entry every day from the hospital, to keep everyone updated. The truth is I have not been in the mood to write. All day yesterday I just laid in bed, wanting to sleep, not being able to and dreading every time my bladder would fill up.
Today I feel better and I decided it’s time to write again. And to share my experiences in the past six days. Fair warning – this is going to be a long entry. It’s also going to be an over-share – as those who know me are already aware, I like to share knowledge and experience. If it can help just one other person, it’s worth it to me. But oversharing here means I’m going to be mentioning some parts of my anatomy that you don’t normally ever hear anyone talk about, especially not in polite conversation. I figure for the sake of full disclosure, and in case there are any men reading this who may one day have to go through a kidney transplant, this is what you can expect…
It all started on Friday the 17th...
We checked in at Cedars on Friday around 11 am. It took about an hour to get through admissions and get all our paperwork filled out. Then they took us upstairs to the fifth floor waiting room. Nicole was called in to her pre-op room almost immediately. I sat outside for about half an hour while she was prepped. Then I got to go in and see her. We talked and joked and basically couldn’t wait for the surgery to be over. They came to take her to her operating room just after 1. There were a few tears, but all in all, we were both in good spirits. Neither one of us seemed that anxious or afraid.
I went back in and they started prepping me. My blood pressure was still high – I think it was 160/110 or something like that, but no one was worried. A nurse put an IV in my left arm (an 18-gauge, which is a big, painful needle and usually only used in hospital settings. She gave me some lidocaine beforehand though, and I didn't feel a thing) and I had to strip down and put on the gown. It was cold in the room, so they brought me some warm blankets (I love the fact that hospitals warm the blankets for you). My parents arrived to visit shortly after the IV was in. Then I laid there. The surgeon came by to say hello a little later, told me that everything would be great, the anesthesiologist would take care of the blood pressure and when I woke up later I’d feel like a new man. He left and my Mom went to let my Dad in (they only allow one visitor at a time in pre-op). My dad and I talked for a few minutes and then I fell asleep. I mean, I was out.
The anesthesiologist woke me a little before 3:30, to introduce himself and let me know that they were ready for me. At this point the cough I’ve had for the last two weeks had gotten really bad, and it was very productive. He assured me he’d take care of that also.
Then they wheeled me down the hall to my OR and I wasn’t nervous or scared at all. Thank goodness for that. The day before October 7 (the original surgery date), my nerves were on edge thinking of all the things that could go wrong. So one definite positive from the postponement – somehow it allowed me to let go of all of my anxiety.
Once in the OR, I met another nurse (I jokingly commented that it’d be another person to see me naked – just the gown on at this point, which they weren’t going to operate through). They moved me from the gurney onto the operating table, then strapped my left arm down. They lifted the arm rest for my right arm above me and held it there for a second – it looked like some kind of huge black insect. Kind of strange. Once it was passed from one nurse to the other I saw it was the armrest. The anesthesiologist came over, injected something in my IV and announced he started. I asked if he was using Versed, and he said yes. I smiled – Versed is probably my favorite drug of all time. It’s an IV sedative that prevents you from forming memories. I said out loud – “I love Versed. What a wonderful drug.” And that was the last thing I remember.
Next thing I know I’m being wheeled out of some room and my parents are waving at me, saying they’ll see me tomorrow. I hear someone tell them to take my cell phone with them and my first thought was to disagree. But I don’t think I was able to speak at that point. I just kept thinking that was a bad idea. Apparently my wife was wheeled over to see me at this point - I don't remember it at all. She said she waved hello and told me she loved me and then they wheeled me away (she had gotten out of her surgery a few hours before I got out of mine).
I opened my eyes again and all of a sudden I was in a hospital room with my charge nurse, my RN and my clinical partner, all introducing themselves. It was about 9:40 at this point – I only recall that because I looked up at the clock. As they were talking to me, things started to come back into focus. I had some soreness in my abdomen, but it was more numb than anything. I felt better, like something had changed. I was awake, I was becoming more alert and I started to really feel wonderful. Within minutes I couldn’t even remember how bad I’ve been feeling the last five months. Everyone who told me that the new kidney, if it worked, would make me feel immediately better had not been lying (and the 500 mg of Solumedrol (IV form of Prednisone) didn’t hurt either).
About 10:30 I asked the nurse to get my wife’s room number so I could call her. I didn’t have my cell phone, but I had the hospital phone. I called her room, she answered and was surprised to hear from me. She asked why I hadn’t responded to any of her texts – the ones she sent to my phone, that was with my parents back at the apartment, along with my laptop. We talked for a few minutes – so wonderful to hear the voice of the woman who saved my life. We didn’t talk long – we were both pretty tired.
Unfortunately, I didn’t get much sleep that night. Mostly excitement, mixed with steroids, mixed with sleeping on my back (I’m a side-sleeper by nature). I spent most of the night talking with my RN and Clinical Partner. They were both assigned to me and the other transplant patient from that morning – an older woman who received a kidney from her son. So everyone had time that night.
Saturday was a whirlwind. Between the doctors, the residents, the surgical residents, the new nurses, my family, my wife’s family, a couple of friends, a blog entry and several emails and phone calls, it was quite busy (I discovered there were at least 12 people in the operating room watching my surgery - all of them seeing me lying there naked, finally introducing themselves to me after the fact. It doesn't really matter if I had known they were in there, but it's always kind of surprising how many people attend surgeries at teaching hospitals). The surgeon came by to say hello, even though it was his weekend off. He said the surgery couldn’t have been more smooth. From the time he received my wife’s kidney until it started working in me was about 25 minutes. He told me how beautiful it was to hold it in his hand. Turns out they connect the vein first, then the artery, then they hold the organ for about 10 minutes to watch the blood profuse through it. Once it starts making urine (which they can see happen), they connect the ureter to my bladder. Then they have to sew everything back up.
This is kind of the weird part, because they put a new kidney in your lower abdomen (in the front), and they leave the old kidneys intact (it’s a much riskier surgery to remove the old ones and the recovery time increases by several weeks). But to put a new kidney in your abdomen, they have to cut through your abdominal wall (all muscles) and then they have to take out some fat and push the intestines around to make room. I’m so glad I wasn’t witnessing it as they did it – I’m pretty sure I wouldn’t be able to take that.
I had my blood drawn at 5:30 in the morning (typical for a hospital) and by 9 am I had the results back. My creatinine was down to 2.3, from 5.4 the day before (from 9.8 at the end of the September, and 15 back in May when my kidneys failed – normal is anything less than 1.2 (I said 1.5 in my earlier post – the transplant nephrologist corrected me)). Potassium was normal (like 5.4 I think – less than 5.5 is good) and my phosphorus was low (around 2 – this is the mineral I’ve been struggling with all summer. It peaked over 9 back in June and it’s been a struggle for me to keep it down every since, mostly because phosphorous is in EVERYTHING you eat). I still felt great. And when they weighed me, I came in at a slim 153 pounds. What?!? When I got to the hospital on Friday, I weight a little over 168. Talk about weight loss!
The nurse said I peed 15 liters from 10 pm to 7 am the night before. 15 liters. Yes, you read that right. And from 7 am to 7 pm on Saturday, I peed another 13 liters. Let’s do a little math – a liter weighs a little more than 2.2 pounds. So that means I peed 28 liters, which equates to approximately 61.6 pounds of fluid in less than 24 hours (keep in mind I had IV fluids being pumped in, so most of that was a 1:1 ratio – whatever I was taking in I was just peeing out).
My wife came to visit me for a little while before she was discharged. She was in a lot of pain. I felt horrible about that. I knew it would happen, because everyone said the donor gets the short end of the stick. The only positive is her recovery is going to be much faster than mine, so she should be completely pain-free and back on her feet weeks, or even months, before my pain and soreness go away.
Saturday night I managed more sleep than Friday night. But only in hour increments – my urine collection bag kept getting full and backing up into the catheter, which kept giving me the sensation of having to pee. If you’ve ever had a foley catheter, you know that the sensation of needing to pee when the catheter is in is not comfortable. So every hour a nurse would come in and have to empty my urine collector.
Sunday I was starting to feel the lack of sleep. I had some visitors, fewer than Saturday – a different surgeon, the head of the kidney transplant clinic, my original nephrologist who I started this journey with back in 2007, my family and my wife’s family and my wife, another couple of friends, another phone call or two. The rest of the time I spent watching TV shows online and surfing the web. I weighed 151 pounds Sunday morning, my creatinine was down to 1.5 (wow!), potassium was a little higher (I had been eating as many potassium foods as I could get my hands on on Saturday – mostly potatoes. I hadn’t eaten potatoes in 5 months! I had to make up for lost time). Phosphorus was still low, so they started me on phosphorus pills (can you believe that? All summer I’ve been taking these horse pills called Renvela to remove phosphorus – 3 or 4 pills every time I ate something. And now they were giving me another horse pill to increase my phosphorus. The human body works in mysterious ways sometimes). And to top it off, my blood sugar was high (around 192 on Sunday morning) so they had to start giving me insulin shots. Turns out one of the most common side effects from Prograf (aka Tacrolimus - one of my anti-rejection medications) is high blood sugar. So I started having insulin shots with every meal. The kidney was still working great!
Sunday evening the Clinical Partner (CP) came in to give me a sponge bath. Luckily I don’t get embarrassed easily. It’s always weird to be naked in front of strangers, but at the same time, feeling warm soapy water washing away the dirt and antibacterial stuff they put on my skin, wow, what a great feeling.
Here’s where the too-much-information part comes in – fair warning! If you keep reading, I’m going to be talking about my privates. Because for any men who may have a transplant someday, no one will tell you about this part. But I will – because it totally freaked me out.
So as I’m removing my gown, I’m trying to be careful not to touch the catheter. Having a plastic tube coming out of the tip of your penis doesn’t feel good, and anything that rubs against it gives you a nice jolt of pain (the tip is very sensitive). But as I’m trying to avoid the catheter, I notice something wrong with my penis. It’s all black and blue. And it is so swollen – the nurse caught a glimpse and her only comment was “it’s so huge.” (I’m not saying that to brag or gloat or anything – it was totally disgusting. Some guys have penis envy – I do not. I am the way I am and I’m fine with that). And my scrotum was huge! It’s like some of that urine I had been peeing had skipped my bladder completely and just kept going down. So between my legs I’m seeing things I’ve never seen before and I’m worried. The CP had never seen anything like this before either so she couldn’t help me in figuring out what was going on. The rest of that night I was getting more and more anxious hoping there wasn’t something seriously wrong.
By the time one of the surgical residents came in (around 6 am, after the blood draw), I asked her to look at it and she was surprised by what it looked like also. She had never seen anything like it either. She said she would ask the surgeon about it and come back to let me know. Now I'm kind of really starting to worry - how is it that people who have been working with transplant patients have never seen this before? Am I the first male transplant patient they've had?
One of the surgical fellows beat her to it – she came in about an hour later and asked if I had any questions. I told her about what was going on, and of course she wanted to look at it. So here we go again – the third female nurse checking out my junk for me. I laugh about it now. I guess I’m somewhat comfortable with my body.
She said it was perfectly normal – nothing strange there. What happened was blood drainage from the wound was collecting in my scrotum and penis and that was causing the black and blueness, and the swelling was from the excess fluid build-up. Fun!
It made me feel better to know it wasn’t anything abnormal. I really wish someone had mentioned it to me ahead of time though – not something you want to see when you’re not expecting it.
Monday was my first “down” day. I only had 50 mg of Prednisone, after high doses all weekend (500 mg Friday, 250 mg Saturday, 100 mg Sunday) and my energy level was lower. Not too many visitors on Monday (thankfully). I just laid in bed most of the day, feeling tired. My weight was down to 148 pounds (this kidney was pulling fluid from everywhere!), my creatine was down to 1.3, potassium normal, phosphorus still low, blood sugar still high. But everything was good – my incision looked good, no swelling, no fevers, blood pressure close to normal.
That evening one of the surgical residents came in to remove my drain tube (this was a catheter they had sticking out of my abdomen above the incision, to drain whatever fluids I might be leaking internally and to make sure I wasn’t bleeding inside). He showed up right as I sat down for dinner and that hurt getting that removed. It was a really sharp, pinching pain that lasted about 5 seconds (not long) and then it ached for about half an hour. But then the wound kept leaking for three more days – I kept having to replace the gauze pad because it would get saturated.
I think I got more sleep Monday night than I had been getting – finally getting used to sleeping on my back. Tuesday morning another blood draw at 5:30 am (the nice thing about the nurses on my floor – they would pretty much leave me alone all night. They had to come in and check my vitals every two hours, but I could sleep through that. The only thing I couldn’t sleep through was the catheter backing up, but that was only every two to three hours by Monday night).
The nurse came in to remove the foley catheter about 8:00 – I made her stand there and wait almost half an hour just so I could calm down enough to have her pull it out (I know, I work myself up over certain things, but it's my penis, and I knew I would feel the catheter coming out - I was in a total panic and even when she started pulling, I wasn't completely calm). I knew it would hurt, but she went slow, thinking that would help. I’m not sure it did. But once it was out – relief! And that’s when the real pain started.
She told me it would probably hurt to pee the first few times – she was wrong. It hurt to pee for the next few days. Every time I would try to pee, I would feel this sharp stabbing pain in my lower abdomen. Sometimes that pain would last for up to a minute while I tried to squeeze my bladder muscles, to get them to contract and push the urine out. Those contractions were what killed me. Of course the burning every time urine came out didn’t help either. That was from the catheter having irritated the urethra inside the penis. That lasted until Wednesday afternoon. Let me tell you how horrible it is to know it’s going to hurt when you pee – it becomes something you don’t want to do. But I can’t hold my urine, not for very long. My bladder is smaller now than it’s been, but also, holding the urine in is bad for the kidney this close to the surgery. It’s possible if I tried to hold too much urine for too long, I could pop the ureter that they sewed onto my bladder. And that would require more surgery to go fix it before I died of urine poisoning. As well as requiring another catheterization.
Luckily none of those things happened.
Tuesday was my last day in the hospital. Several doctors came by to say good luck and see how I was doing. I met the doctor who created the ABO-incompatible transplant procedure – a really nice guy. He came by every day to see how I was doing. I think he likes seeing people who have blood-mismatch transplants doing well. It validates his procedure. He is a really wonderful guy. I’m so glad I got to meet him.
They hoped to have me out of there by 1 pm, since my post-transplant medication training happened at 10 in the morning (they have to go through the list of medications and when you need to be taking them before you can be discharged - missing even one dose of an anti-rejection med can do some serious damage to the new kidney). My parents showed up about 9:30 am and unfortunately I wasn’t discharged until 4:30 in the afternoon.
I still don’t understand why it takes so long for hospitals to discharge you. The doctor who came to discharge me came in at 1:30, while doing his rounds. He said everything looked good and I was good to go. He just had to write up the orders and have my IV’s removed (I had one in each arm). My creatinine was down to 1.2, my weight had dropped again to 145 pounds, I was peeing normally (well, aside from that constant pain) and I had my medications. I was ready to go. But the IV’s weren’t removed until 4:30, then they wheeled me downstairs, my Dad brought the car around and we went back to the apartment (we rented an apartment for me to stay in so I wouldn't have to be near the kids until my immune system recovers some. And the apartment is much closer to Cedars than our home in the valley). It felt so good to finally be out of the hospital.
For the next two days, I walked around the house with a t-shirt and robe on – nothing from the waist down because anything I wore down there put pressure on the incision and just didn’t feel good.
Wednesday the pain from peeing got really intense. I started to scream a little every time I went because vocalizing the pain does help. I ended up calling the transplant clinic to make sure feeling this pain was normal. And sure enough, it is. Some of it is brought on by the shifting around of things inside me. Some of it is because of the anesthesia paralyzing my bladder for days (and that effect might still be lingering) and also the swelling down below was contributing – it was essentially squeezing part of the urethra closed. So the solution? Scrotal elevation. Sitting on a towel or pillow and laying back with my stuff elevated higher than my legs. Sounds weird, but man, that did the trick. By Thursday morning the pain was definitely getting less. Still not gone, but better. And the swelling was coming down. Sometimes I’m just so amazed how gravity works.
I started doing laps around the apartment on Wednesday, just to get some walking in. Turns out walking is one of the best things you can do for yourself – it really does help to get things flowing. It also seems to help relax the bladder muscles so I don’t have to squeeze quite so much.
Walking…it does a body good.
Thursday was a good day – I felt like I was finally getting my energy back. My pain was easing up. I was walking more.
Friday was my first day at clinic, and I ended up in the ER again (more on that in a soon-to-be-published blog post). But the weekend turned out well.
And here we are today, Monday. Today has been a good day. No pain when I pee at all – some pressure, but not much else.
Since this blog is so long already, I’ll save details of today’s clinic visit (my first “official” visit) for another post as well.
It’s been an amazing journey post-transplant so far. I really love my wife’s kidney, and it seems to be loving me. I’m looking forward to a long life with this thing. I’ll be writing about that in more detail soon too.
Thanks for reading! And thanks for your support and caring. I wouldn’t be here without any of it (and I definitely wouldn’t be here if not for my wife’s love and generosity).
And I have to thank the wonderful staff of nurses, clinical partners, fellows, residents, doctors and surgeons who made this miracle happen. The four days I spent in the hospital seemed long and endless, but I’m glad they were there at my side, helping me start the process of healing. So many people to be grateful for having in my life. Even though I don’t name names in my blog entries, I hope that anyone and everyone who has helped me who reads this knows that my heart (and my kidney) admire and respect you more than I could ever say.
Stay tuned…