I decided to write this as a way to share my experience, start to end, of being a living kidney donor. Not only to educate and enlighten anybody wondering about the process but also to share the story with my friends and family in a more thorough way than a 5 minute conversation could facilitate.
If you or someone you know is interested or looking in to becoming a living kidney donor, don’t hesitate to pass along this page or send them to the Contact Me page to get ahold of me. I’m open to answering any questions they may have. If you have questions, do the same or you can even post a comment on this page.
I fully expect this page to change over time as I remember other anecdotes or informational points from the event, and as I continue my recovery.
It was January 2014 when I got the call from my wife. She had received a “share” on Facebook (I wasn’t on FB at the time) about a fraternity brother of mine who had been diagnosed with end stage renal failure – the fancy way of saying his kidneys were all but dead. His wife had put up a page on Facebook to try to get the word out and see if anybody they knew would be willing and able to undergo the necessary testing and procedure to become a living donor for Brian.
Rewind 15 years when I first met Brian at Iowa State as a member of Triangle Fraternity. I was fresh out of a bad high school experience as a geek/nerd/all-around uncool dude and Brian was, most would agree, about as outgoing and social as one could imagine. The life of the party. Always up for anything. Through my 4 years at ISU, he and I became thick as thieves, especially on the weekends when we would frequent the various social establishments in the area. Brian knew everybody by name, and everybody knew him. Eventually we had the idea to start a website called AmesBarfly.com and make it a social hub for all things campustown. Drink specials, events, sharing with your friends, etc. It could have been Facebook before Facebook was Facebook. But alas.
At any rate, Brian was basically the big brother I never knew I always wanted – and in fact could probably have used throughout my life. He showed my awkward Asperger\’s self the ropes of social interaction, trying numerous times to get “you can’t do that” and “nah, that’s not how it works” though my thick skull in various situations. I like to think he succeeded, if only mildly :)
So when my wife called me with the news about his unfortunate health, my first words to her were “is it ok if I go get tested?” Being a mother of 2 boys (at the time, 7mo pregnant with our 3rd) and knowing Brian had 2 little girls and a wife at home, she immediately agreed.
And so my journey began.
I contacted Brian that day:
Subject: Broseph, what’s up
Hey man, I’m not sure what else to do or who else to contact so I just thought I’d send you a message directly.
Jennifer just called me as she got an invite on Facebook regarding your health situation. I can’t tell you how dumbfounded I am.
When she told me what was going on I immediately asked her “is it ok if I see if I’m eligible?”
So there it is. I want to help. You were such a massive part of me becoming who I am today with the years amount of time we spent hanging out I simply cannot sit by.
Please let me know what I have to do to get the process started. For what it’s worth I have never undergone any major surgeries, never had any health complications whatsoever barring lifelong environmental allergies. I recently had a physical where all my numbers (cholesterol, BMI, etc.) were either “normal” or just above normal.
Let me know what I have to do, bro. My family and I will do whatever we can.
Much love to you and yours
Now you have to know me a little. I don’t have too much of an “emotional” side to my decisions but at this point that’s about all that took over. My friend needed help.
Brian gave me the information for Northwestern Memorial Hospital in Chicago with whom he was coordinating everything, and – never one to hesitate – I pushed ‘Go’.
I was informed of the 4 phases of Kidney Donation by my Donor Advocate at NMH:
- Contact the hospital, have everything explained, ask any questions, fill out health history questionnaire
- Undergo blood testing, EKG, chest X-ray
- Another history check & and physical from a doctor from NMH. I had to travel to Chicago for this.
- Repeats step 2’s tests with a final blood cross match, and pre-surgery preparation
While we waited for test results and appointment days, Brian and I talked almost weekly after not having really talked to each other for quite some time. I found out that he was doing 8-9hr of dialysis at home every evening as he slept. When we talked it was usually at night after our kids had gone to bed and he always sounded just completely drained to me. Like he would pass out any minute – almost drunk. It always made me realize why I was doing this. How much I wanted to hear my friend sound like his old self again.
I asked him everyday questions and I asked him tough questions. My logical brain took over. Why hadn’t he told anybody about this before now? I mean, he had been on dialysis almost a year. Why didn’t he say something when I saw him the summer before at a wedding? “We were still processing the gravity of it. We weren’t ready to tell everybody yet.” I understood. The more I talked to him the more I realized I couldn’t imagine having to face the decisions he’d had to face in the preceding months.
Later, while we were both in/recovering from surgery, his family would inform my wife of something he never told me – the doctors had told him he only had about 10 years to live if something didn’t come through. With a 3-year-old and 9 month old at home. Heartbreaking.
They first sent me a packet of information which I was to review with my wife, seriously consider, and then ask any questions of my Donor Advocate until I felt fully informed. The packet itself was quite informative, going even so far as to show exactly on the body where the incisions are made during the procedure. It also explained all the phases and included forms for me to fill out and send back if I did decide I wanted to move on.
I had forms signed and sent back to NMH the next day.
This phase wasn’t that big of a deal to me. I saw it as education and just “knowing what I’m getting myself in to” and not much more. When my wife and I talked about it, my remark to her was “let’s just see how far I can go before I have to make a decision – this might not get past the next phase, so why worry too much now?” Ah, there’s my only-logic side making an appearance.
About 2.5 weeks later, I headed to the local clinic/lab to get the blood draws, EKG, and chest X-ray done. My situation was somewhat out-of-norm in that I wasn’t having all the testing done at the transplant hospital. So before I did this they did some checking to increase their confidence that the place I was planning to go would be ok billing them for the charges incurred. They eventually sent me the orders and billing instructions to take to the clinic with me.
In my haste eagerness to move forward I forgot to fast when I first went to the clinic – they still performed the EKG and X-ray when I went in.
This marks the first of many encounters with people who have been touched by kidney donation or issues that I would meet throughout my journey. I showed up at the clinic with this paper that had 20+ blood tests on it – not the usual “pee in a cup drug screen” they were used to. The one nurse looked at me and said “if you don’t me asking, what is this for?” When I told her I was being evaluated to be a kidney donor she stood up, came around the counter, and hugged me. Then she told me the story of her daughter who, at the age of 16, was literally on her death-bed waiting for a kidney. Through her church prayer chain, somebody donated to them and she was water skiing on family vacation 6 weeks later. She was brought to tears telling me her story, and telling me what a wonderful thing I was doing. I think like most people you see on TV being praised for their actions, both me and my wife didn’t – and still don’t, really – see it that way. We were doing what we could to help somebody we cared about. Everybody should do that, right?
The following Monday I went back in after having fasted and got all the blood draws done. Incidentally my orders also included a 24-hour urine collection, so I did that over the weekend as well. This was probably the first time it really got real for me. Peeing in a jug for a day, at home, directly affecting your life and being a constant reminder of the function of the organ you’re giving up was the first time I remember thinking to myself “Yup, I’m really doing this. Ok. Here goes.” And becoming very conscious of my decision.
It was a few weeks after this that I also had a CT scan performed – something they’d normally have done during Phase 3, but since they were having good luck issuing orders to places local to me they let me have this done locally as well.
The CT scan was weird. They inject you with some dye or something, and it puts a weird taste in the back of your throat, then immediately your midsection gets very warm and you feel like you just wet yourself. The nurse told me this would happen as she was pushing the dye in the IV and I didn’t quite believe her but sure enough. It was freakin’ weird.
It all worked out, and the doctors reviewed the footage from the scan and said I was good to move forward.
It was around this time that we started to tell people what I was doing and why. Enter kidney story #2. Turns out, our neighbor and close “couple” friends had a kidney story of their own. The wife was born with only one kidney! We’d never known this, and she didn’t either until she was pregnant with her first child and they did an ultrasound, “um… did you know you only have one kidney?” It’s pretty amazing she had no idea, goes to show that having 2 really is just nature’s version of having a backup :)
Thus far we’ve not even escaped January – the month I found out about Brian’s predicament. I had the forms filled out and the testing done before the end of the month. Afterward I was in pretty constant, probably annoyingly so, contact with the nurse and advocate team at NMH to find out how things looked, what the results were, etc. In the midst of this there was a bit of a billing mishap, but things eventually got sorted out.
It’s worthwhile to know that donors incur no medical charges throughout the whole process. This was something I was unsure of when I started the process. I didn’t know if they billed my insurance – which might flatly refuse to cover it on grounds that they don’t want me to do it – or if I’d be footing the bill, or what. That question was asked and answered during Phase 1, and was also in my patient handbook. As it turns out, the hospital bills the recipient\’s insurance for all charges incurred including donor testing and the procedure and hospital stay. My recommendation to any donor doing this is to never hand over your insurance card to the places you’re having labs/tests done; this is what NMH advised me when we started the process as well.
It was only a few days after completing Phase 2 that my 3rd son was born.
I told my mom & sister about all of this a few weeks later. They were remarkably calm about it and heard me out. They remembered Brian from my wedding – again always the life of the party. When I explained to them that the fortunate thing for Brian was that he was a universal recipient, my mom immediately asked. “Then why you?”
She had a point. If Brian was a universal recipient (due to his blood type), then why did it have to be me? Why did a guy with a wife, career, and 3 small (under 6yr old) children have to be the one to give up an organ?
Here begins the real introspection and another kidney donor story.
I mentioned at work that I was going through this process and our talent management rep said her brother had donated a kidney to a friend of his 10 years ago. She offered to put me in touch with him that I might see a real-world end result of my decision. He offered to come to my house, and my wife, him, and I chatted for a good 2 hours one evening.
One major thing stuck with me from this conversation. He’d had his procedure done at the University of Minnesota hospital here in the Twin Cities. When he went in for his Phase 3 appointment, the doctor looked at him and explained something that made quite an impact on me. I remember it as:
We are going to take very good care of you. You are not sick, you are not hurting, you are in perfect health or we wouldn’t let you do this. Here you are 100% healthy walking in here and saying “cut me open, doc.” We take very good care of you for that reason.
This made a lot of sense to me, and obviously I remember it to this day.
It was during this conversation also that my wife finally opened up. Up until now she had been letting me push this process forward and do whatever I needed to do to make that happen. This evening she finally voiced her concerns. She needed me to slow down, to really take time to understand the implications of what this meant not only to me, but to our family.
After hearing her – and if I’m honest with myself – I looked back and saw that I had been blinded by the emotion I was feeling for Brian – damning all else. Sure, I had thought about the “what if’s” of this decision, but I had shrugged them off.
- What if my one remaining kidney got injured in an accident afterward?
- What if my wife or one of my boys needed a kidney later in life and I couldn’t give one?
- What if I died?
Some of these were eased by the transplant team, but of course they’re still there, in the back of your mind. She was right, I hadn’t given this the proper gravity it deserved. It was always in my head as “I’m just helping my friend” it wasn’t “I’m undergoing major surgery. I’m losing an organ”. It should have been more drastic to me, but it just wasn’t. I was “just helping a friend.”
And so it was around the time of the birth of my son – early April – that I spoke with the donor advocate at NMH. I told them that, given the fact that Brian was a universal recipient, and I was a husband and father of 3 small children, I wanted to “pump the brakes” a little. Was there any way we could wait and see if somebody else would come through? Somebody with perhaps fewer responsibilities and dependents?
They completely understood. I was labeled a “backup donor” and – since insurance mandates only one person can be undergoing testing at a time – they opened up the pipeline for other people to answer the call.
This was the hardest part for me. I texted Brian and informed him of my decision to slow things down. He was gracious and appreciative of everything I’d done thus far. I never felt pressure from him, or from NMH throughout this decision. I was grateful for that.
Eventually throughout conversation and careful consideration my wife and I both became more comfortable with the idea. I was checking in with NMH and Brian pretty regularly to see if anybody else was going through testing.
Phase 3 became a go. For this phase I have to meet with a doctor from the transplant team for a physical, as well as meet face-to-face with all the people I had only e-mailed or spoken with on the phone up to this point.
One of these people is a social worker. She had a conversation with me, my wife not present, about why I was donating, how I would feel if this or that happened, who was supporting me, who would help take care of me afterward. It was during this conversation that another deep question was asked:
Will you regret this decision if it doesn’t work?
I simply hadn\’t thought about it. This was going to work – period. Because Brian’s a good guy and because it’s the right thing to do. That’s why they were doing all these tests, right? Turns out you can\’t predict things with 100% accuracy – who knew ;)
I had to think a bit as I answered her. No, no I wouldn\’t regret it. Would I be disappointed? Absolutely. I think we all would. But would I regret trying to help a friend? No.
It was also during this phase that I learned a couple of interesting facts about kidney donors:
- If you’re ever in a position where you need a kidney later in life, you are put at the top of the list. This was explained to me as a kind of “gentlemen’s agreement” between the hospitals in the United States.
- Your kidney grows about 20% in size to assume overall ~70% function from what you had before donation. Normal people can function down to ~35% kidney function before they even notice anything is wrong. I\’d still be good to live a normal, long, healthy life.
The doctors also served to put my mind at ease regarding my boys. As it turns out, the reason they ask so many health history questions and do so many blood tests is not only to see that one is a match to the recipient, but also to give a predictor of how likely it is the donor may have kidney issues in the future. I didn\’t know this at all. I thought it was all about whether or not it would work. But going back to what the U of M doc told the other donor I spoke with – they are looking out for me very closely.
So, by doing this they also – in essence – predict the likelihood that my boys will have issues. Since it’s not likely I will, by their measure, then it’s not likely my boys would either. That was good to hear. They only person they couldn\’t really predict was my wife and, standing right there, the doc asked her a few simple questions and determined it probably wasn\’t likely she would have issues in the future, either.
As we sat in the exam room during our visit, my wife fired up her phone and opened the calendar. She was picking the date. Right there. Again it starts to get more real.
I had more blood drawn and gave yet another urine sample while in Chicago for this phase.
After step 3, there is a mandatory 7 day cooling off period. So though at this point we knew we wanted to go through with it, they wouldn\’t even hear me to schedule a date until after at least 7 days. In addition to this cooling off period, throughout the entire process and nearly every time I spoke with somebody they made sure to let me know I could change my mind at any time and pull out of the procedure. These things make me feel comfortable and helped to ease any pressure that might have been there.
We also used this time to really prepare my oldest two boys (6 and 4 years old) for what was going to happen in a few weeks. My wife started the idea of telling a story about Daddy’s kidneys. The boys named the one that was going to Brian “Kenneth” and the one that I got to keep “Bob”. Looking back, I can see Bob being a guy that would like to stay at home on the couch eating potato chips & watching TV. So it makes sense. (Sorry Bobs that might be reading this, no offense intended)
They made up the story that Kenneth was going to Daddy’s friend Brian because Brian’s kidneys were no longer working and Kenneth could do their job all by himself. My oldest looked up kidneys on the Brainpop app on his PC and proceeded to tell us all about nephrons and how kidneys clean your blood and make urine, “but we call it pee giggle”. And how without kidneys the poisons stay in your blood and make you very sick, which is why Brian needs Kenneth. And since you have two, you can give one up and still be OK. I think much of the gravity of the situation was lost on the boys due to their age, but at least we knew they understood as much as they could of what was going to be happening to our family.
Since my wife had had a C-section with our last baby, we also explained to them that Daddy will be sore and can’t play with or lift them just like Mommy couldn’t after she had the baby.
Bonus challenge: Count the number of 7s
And so the countdown began. After tossing up dates in August and July, we settled on 7/17/2014 as the day of the procedure. All the while the team at NMH made sure to let me know I was free to change my mind at any time. “We’ve had people prepped and ready and they’ve decided they couldn’t do it” – I can’t imagine.
Since I wasn’t local more coordination needed to happen as they needed another round of everything from Phase 2, but within a specific time frame and from both Brian and me.
So on 7/7 I went in to the local lab and Brian went to downtown Chicago. This time I had a new technician and was telling her my story when she remarked “the pastor at our church just had a kidney transplant, the donor was another pastor at our church.” Enter yet another kidney story!
A few days later while talking to Brian he asked where we were staying in Chicago while we were in town for the operation. The nice thing about NMH was if you are >3hr away from the facilities they put you up in a hotel close to the hospital after the procedure so you can come back for your 1wk follow up without the stress of having to travel. So our room & board while in town were taken care of that way which was nice.
We were pretty much set on driving down (6hr or so from the Twin Cities) and driving back until Brian mentioned he had a friend ask him if there was anything he could do for his donor, including pay for transportation. What a blessing! It was from this that we flew to Chicago on 7/14 and booked a rental car for our return trip (shouldn’t fly for 3wk afterward). Thank you Brandon! (Yup same name as me, how cool)
I coordinated with my mother and sister to arrange for care of the boys while we were gone. Our house was quite busy while we were away as my sister brought up her 2 kids, so there were 2 adults and 5 children running around for most of the days we were in Chicago! They were such a blessing to use throughout this – one less thing for us to worry about.
The morning of 7/16 we headed to the clinic for the pre-op appointment. This consisted of more blood draws, another urine collection, another EKG, and a final meeting with my donor advocate, nurse, and a transplant surgeon. At this time we also watched a video on being a living donor. My wife and I both thought that the video should’ve probably been presented before this time (surgery was already scheduled for the next day!) but oh well :)
It was at the end of this visit that I also received the infamous “bowel prep” – 10 ounces of “lemony” (yes, printed right on the bottle) saline solution. And you know what saline does to you.
I had a light lunch that day (because, yeah) with Brian and another fraternity brother who recently landed a job at the exact hospital we were having the procedure done. Then it was back to the hotel room… close to the bathroom.
7/17/2014 – 5:00am we take the short walk to the hospital. I checked in on 5th floor; am assigned patient #77. My wife and I head up to the 7th floor where we are escorted to pre-op bay #7. I’m visited by nurses, a transplant surgical assistant, anesthesiologists, and Brian. Who comes dressed like he’s going to church – hair done, nice jeans, a sweater and everything. While I\’m laying there in \”the gown.\” What a showoff. We shook hands, he asked how I was doing, and wished me luck.
The nurse, Dale, had an Army pin on his lapel – I knew he was going to be fun AND good at his job. Sure enough he nailed the IV with ease and started on my health questionnaire.
“Ever been under anesthesia?”
“Really, no tonsils, gall bladder, appendix, spleen, nothing?”
“Ok, full bag then!”
Yup, full bag. :) For a little while longer, anyway.
Another nurse came in and told me she had to give me an injection of something else – I don’t remember what. I remember that it couldn’t go in the IV because it had to be intramuscular so she needed to stick me in the thigh. So she does, then says “ok and burn BURN BURN ALMOST DONE BURN BURN ok done” – yeah. She wasn’t joking either. That sumb*tch hurt.
Army nurse rolled me on my side to put a huge butt-band-aid right over my tailbone. It was probably 10” in diameter. He told me it was to prevent bedsores during and after surgery as long as I was in the hospital. Not gonna lie, it made the bed a lot more bearable – like sitting on a pillow :)
Then I was visited by a surgical assistant who would be helping the actual surgeon during the operation. He marked my abdomen to note it was the left side they were taking (see pictures area). I had only found out the day before that it would be my left kidney going to Brian during our meeting with one of the surgeons at NMH. Today I got more curious and asked the assistant “why the left one?” His response was that the left kidney has longer connecting “tubes” to the main trunk of my body – arteries, bladder, veins, etc. So in almost every case they will take the left if they can. This is so when they get to the recipient, they have more to “play with” as they’re wiring things up; they cut these connections close to the trunk of my body. Makes sense – better to have and not need than to need and not have!
The anesthesiologist informed me they’d be administering primarily two drugs to me. The first would be a drug to help me relax before the surgery, “take the edge off,” she said. The second one would put me under during the procedure. She told me the first would allow me to still answer questions once they got me to the OR, but “it has an amnesic effect” – which means I might not remember anything.
I’ll admit I was starting to feel a bit nervous by the time they had told my wife it was time for her to head back to the waiting area, “your job is just to wake up” she told me, and that was it. Sure enough, no sooner did they wheel me out of the pre-op bay then she pushed the first drug, “Ok here comes the happy juice” she said – and I don’t remember a single thing after that until I woke up after surgery. I must’ve answered all the questions right because I’m still here :)
My surgery started at about 7:30am and lasted 3 hours. Brian’s surgery started around 1p and lasted, I think, about 5 hours.
That’s about all I got, here. I was under, remember? The part about this people usually find interesting is that they call the bottom incision the “hand port” and that they actually go in through the front not the back as most people assume when dealing with kidneys.
The worst part about this is the positioning of the hand port – it basically sits right on the spot where the waist line of your pants sits. Makes recovery a total pain – literally.
I found out that the operation, removal and insertion, all takes place in the same OR. I go in, have the kidney taken out, and then it goes to a cooler. Then about an hour later Brian went in to the same OR and it was put in to him. A nurse from the OR called down to Brian’s family and my wife and informed them all that the kidney was working before they even had him sewed up. What amazing news. I tell people that going in to this there were only 3 questions in my mind:
- Would I be OK?
- Would Brian be OK?
- Would it work?
I’m overjoyed the answer has been “YES” to all of them.
The recovery – part 1
The first few hours after coming out of anesthesia were horrible. Especially never having been under, I had no idea what to expect.
I woke up in one room where it was just me, and a nurse checking me every few minutes. No visitors, nobody talking to me, nothing. It wasn’t the same room I was in to recover overnight. It seemed like I was watching the world through a translucent piece of glass – everything was foggy. My eyes wouldn’t quite work. I tried to ask where my wife was, how Brian was doing, but the nurse just kept telling me to rest and that I was ok. It seems like about 30 seconds in my head.
Then the next thing I remember is the nurse in my recovery room as I woke up again. “Oh good morning! Say, I just wanted to let you know that while you were under, the Russians shot down a passenger plane.”
What the HELL? Great, I go under the ONE time in my life and World War 3 starts. I made sure to get the TV turned on and the news going so I could know when to head to the nearest underground bunker. Of course then I learned (at that time) that nobody really knew what happened and we were still trying to piece things together. Thank God for that.
I fell back asleep and then remember waking up to my wife. The first thing I asked was how Brian was – he, of course, was still in surgery at the time. We talked and she eventually presented me with an oversize card that had wishes and thoughts from my Triangle brothers around the country. It was compiled and put together by another brother that lived in Chicago, delivered to my wife to give to me when I woke up. It was a really nice sentiment, and fun to read all the messages from guys I haven’t seen in years.
I don’t remember doing too much after this, just trying to manage my movements and get comfortable in the bed. The hand port being done through the ab muscles really makes you realize just how much you use those in everyday movement.
Far and away the worst experience I had while recovering was getting the dry heaves after coming out of anesthesia. Every time I would sit up or get up to walk – they had me walking about 5 hours after surgery – when I would come sit back down I would get nauseous. Dry heaving while having a cut in your abs does not feel good. I do not recommend it. Eventually I ate supper – lighter foods – but when I was done with a quick stroll afterward it all came back up which sucked.
When we talked to the transplant team beforehand about our accommodations afterward, we asked if we’d be in the same room. “Oh no, we’re going to be putting you on opposite ends of the building so you’ll be forced to walk to each other.” Worst best idea ever. They wanted us walking after surgery, and that was certainly one way to do it. We ended up not being on opposite ends but we were still a good 200ft down the hall from one another.
A few hours later my wife told me that Brian, aka patient #70, had arrived at his room. “He’s not doing well.” I was a little worried, then she explained he was not tolerating the pain well at all. I waited a little while and then decided to really piss him off. I walked down to his room.
He saw me and immediately said “look at you! walking, you bastard!” and then stifled a cry as he thanked me again. We both hugged as best we could and I sat down in a chair next to his bed. He had a whole container full of “liquid gold” hanging from his hospital bed, “Look at Kenneth kickin’ ass!” he said. Sure enough the kidney was producing quite the output. A great sign. We talked and cracked jokes and hated each other for making the other laugh because it hurt. However in what seemed like the universe smiling on this whole situation, laughing was the one thing I noticed I could do that hurt the least. Coughing, sneezing, being sick, all of those hurt way more than laughing. So laughing was something I grew to both love and hate. But only hate a little.
The nurses were impressed at my lack of need for pain medication. I mostly withstood the pain as best I could and would only ask for it when I really wanted to rest. So I made sure I was up on it throughout the night so I could get decent sleep. Without it I was constantly restless, which hurt because I would try to move around.
The morning after was when the Foley (catheter) was to come out. I asked the nurse what I should expect. “I don’t know, I’m not a male, and I’ve never had one… sorry” Great. Here goes nothing. What does it feel like? Like a lit match being pulled out. That’s what it feels like. But thankfully for only about 3 seconds. After that they just wanted me to go on my own, and then I would be cleared to go home.
They also took me off the IV pain medications and switched me to Norco, a Tylenol + Hydrocodone narcotic. I took one and told them I didn’t like the way it made me feel – like I was drunk. The room would spin when I moved my head, and I couldn’t really focus on things. The nurses explained there was the Norco, normal Tylenol, and then this stuff in between so I told them to give me the middle stuff, Tramadol, when I was discharged.
At noon that day I was on my way back to the hotel. Total time in the hospital from pre-op to discharge: ~31 hours.
During my stay in the hospital Brian & I would hang out in each others’ rooms, kind of cheating the whole “walking” system they had set up. The nurses were great, though, and would hunt us down to take care of whatever needed to be taken care of.
I learned through this experience, from Brian mostly, that kidneys don’t just clean your blood, they actually secrete hormones that control a variety of things. One of these is a hormone that keeps the calcification of your bones in check; without it your bones not only get very hard, but your arteries also start to calcify. So not only is he on dialysis, but also synthetic hormones. In addition I had no idea how much blood pressure figures in to your kidney function. High blood pressure can do a lot of damage and your kidneys, and aside from being subjected to the pressure of the blood, also secrete chemicals to help control it. So after the surgery I knew I wanted to keep an eye on my blood pressure.
Perhaps the most amazing thing I learned was when I asked Brian what they do with the kidneys he has now that aren’t functioning after they take them out; could a person keep ‘em, just for kicks? “They don’t take them out,” he said. Say what?? “I could die with 8 kidneys in me!” Yup it’s true. They just keep adding and adding to the trunk if he were to need one or two more transplants throughout his life (let’s hope not! Right?). This is pretty crazy to most people – including me – when they first hear it :)
After the surgery when we went out to eat, Brian was very excited to have his first Coke in 15 months. Cola has phosphorous in it which is especially hard on the system of somebody without proper kidney function. It can build up to dangerous levels since the kidneys won’t break it down, and the dialysis he was on wouldn’t have taken care of it either. Brian also posted a picture of him having the last grapefruit of his life prior to the surgery. When I asked him what this was all about, he informed me that grapefruit has an especially bad reaction with anti-rejection medication, so he was now barred from having it for as long as he was on the meds which will be the rest of his life – and this was something he had daily for breakfast and really loved. When I heard about things like this for Brian it made me somewhat sad. I wanted this to be the cure for him. I wanted him to lead a normal life, albeit with a few pills in the morning and a few at night. I didn’t realize how much more this affects him than just having only one kidney; in essence I wanted him to have the same quality of life I was going to be able to lead – normal. I told him this and he assured me that I was doing more for him than I knew; He told me in just set up and tear down of his machine on a daily basis, I was going to save him 10+ hours per week – invaluable time he could be spending with his family.
4 days after the surgery I went back to the clinic for my follow-up with the nurses and doctors. This involved more blood draws and another urine sample. They check everything to make sure my creatinine levels (direct measure of kidney function) are trending in the direction they should be and that there is no protein in my urine. All things came back positive from this meeting.
It was at this appointment that I asked my surgeon how long it takes for the remaining kidney to pick up the slack and he told me 2-3 weeks. That was pretty remarkable to me. I thought it would be on the order of months, not weeks.
The Recovery – Part 2 (ongoing)
I’m still in this phase now, 3 weeks and 1 day after it all went down. So there might be some updates here as time goes on.
The hardest thing to do after being discharged was sitting down and standing up. Doing those motions without using the abs they cut through is not an easy thing. Likewise, when you sit everything tightens up and then you have to stretch it all back out again when you stand.
Getting out of bed is also a challenge. It takes some training to get your brain to make sure you’re relying on your arms instead of your abs – once you master it you’ll know. It becomes a lot less painful to get in and out of bed.
The weight restriction imposed was nothing more than 10 pounds for 6 weeks after surgery lest a hernia occur, and I wouldn’t want that. Unfortunately my baby at home was now over 5 months old and well over that, so that meant I couldn’t help my wife out with a lot of those duties for a while.
I mostly went back and rested in the hotel the first day. Nurses had told me constantly that walking was very important, so I was trying to walk around in the hotel room when I could, but I also just wanted to rest.
The next day I actually did do quite a bit of walking. The hotel we were at was at the north edge of the Magnificent Mile in downtown Chicago, so there was plenty to see and do. I estimate I walked a good mile that day. It felt good; the longer I walked the more upright I was able to hold myself and I began to take longer, though not yet full, strides. Stairs were only a problem going down which was an interesting observation. In particular as I stepped with the right foot so my left leg and side were holding my whole wait for that split second.
There were no restrictions on my diet other than a strict instruction to keep hydrated. Fluids were very important.
After the first night in the hotel with only the Tramadol, I called up the hospital and told them I wanted to get the Norco so I could take it at night. The Tramadol wasn’t cutting through the pain enough for me to get a good night’s sleep. They obliged and I picked it up that day.
I ended up using the Norco only a handful of nights, and then was completely on Tylenol for a number of days. After about 2 weeks I was completely off any pain medication.
The worst part of the recovery continues to be the hand port incision along the waistline. Driving a car every little vibration just rubs on that spot and you feel every single one. It’s very uncomfortable. Similarly sitting at a desk like I do all day means that part of my pants is pressed right in on it all day. I usually hike up my pants high then sit down – probably looks funny to people, but feels a whole ‘lot better.
It was 8 days after surgery that we took a trip to a small family reunion. Enter the latest kidney story. Turns out my wife’s grandfather – a healthy 81 years of age – was born with only one kidney. He said he had no idea until he was 41 and the doctors discovered it. This is a man that served in the military packing ejection seat mechanics on jet fighters. I’m feeling pretty OK having one kidney now :)
I went back to work about 10 days after the surgery since I have a mostly sedentary job. However after that day I was completely wiped out the next day, and then fell ill with some sort of stomach virus that eventually landed me in the ER. They said my symptoms were a combination of dehydration and the virus. So more fluids – again. Bonus of the ER visit, though, was that I had blood drawn and they said all my numbers, including kidney function, were spot on normal. This was something I wanted to have checked out anyway, so it was good to get those results. In the ER they also took my blood pressure – something your Kidney helps regulate – and it was a bit higher than normal for me. They weren’t concerned as “everybody’s BP is higher in the ER” – but I have been tracking it carefully in my HealthVault account so I can refer back to it later and also provide doctors with some data if/when they need it.
2 weeks after surgery I had a dentist appointment to have some work done. After informing them of my recent operation, the dentist looked up the guidelines and couldn’t find anything for donors as far as elective dental care. She did find, however, guidelines for recipients: no elective dental for 6 months. She said she wanted to do half that for me. So that got put off.
I also have received allergy injections since I was a child to treat environmental allergies. When I went in for that appointment about 2.5 weeks after the operation, my allergist said she, too, wanted to wait – as she could tell I wasn’t 100% so that got put off as well.
The nice part about both of these visits was that my blood pressure was taken at each. While it had been running higher (for me) prior to my visit to the allergist, when she measured it was back down to what it should be. I have contemplated getting a personal blood pressure monitor on the cheap, but haven’t pull the trigger yet. My employer has a free clinic that I plan to take advantage of for monthly blood draws and blood pressure checks to keep an eye on things.
Throughout the time that I’ve been back at home, Brian and I have been in contact daily. Checking in via text on each others’ pain levels, what we did that hurt, what we’re proud of that we’re finally doing again, and how our various doctor visits, labs, and blood pressures are doing. I’m happy to report that 3wk after the operation, he is still doing great. I hope to report the same for many months and years in to the future.
The story of the 7s
Were you keeping track? Here’s the rundown in case you didn’t catch them all.
It was something that dawned on my wife and I as we were in the pre-op bay getting ready for surgery… It really clicked when I, patient #77, was wheeled in to pre-op bay #7. On 7/17. “Ha, that’s weird. Hope 7s really are lucky!” we both said.
Then we realized we were also on the 7th floor.
Then Brian told us he was patient #70.
Then we also remembered both him and I had our pre-op testing done on 7/7.
Yes, 7s must be lucky. Now to head to the slot machines…
[Update: 3 weeks post-op]
I still have pain when I move around but it’s mostly only at my hand port incision, and mostly surface-level. Just this week alone I have noticed a marked improvement in my mobility; I can stand up faster, walk more normally. This reassures me everything is going as planned. Today I noticed that my upper laparoscopic incision isn’t quite healing the way it should be, so I have been in contact with the nurses & doctors in Chicago to keep an eye on it via pictures through e-mail. Hopefully it shapes up on its own. I fight with heartburn a bit more than I did before the surgery, but am hoping that will go away as well as all my innards figure out their new positions. Walking and moving around quickly – particularly turning side to side or rolling over in bed – feels strange. I can almost tell there’s a void inside of my body; it just feels “empty” and “sloshy” if I had to describe it.
By now Bob should have assumed about as much function as he will ever have. My body is pretty much back to normal as far as daily function – I eat pretty much whatever I want and notice nothing adverse from the operation. I drink more water than I used to now that I know the importance of it; I was never that good of a water drinking before the surgery so I’m happy to work on improving that in my daily life. It also forces me to get up and walk ;)
Driving is about the most uncomfortable thing I do right now. The lap part of my seat belt is a constant annoyance, and I feel every vibration and bump thanks to the waistline of my pants. Brian and I complain about this almost every time we talk; he feels the same. I will be so happy when everything heals to where I don’t notice that any more.
[Update: 1 month post-op]
I am happy to say that just in the past week I have noticed even more improvement in my mobility. I have, though I shouldn’t be according to the rules, resumed baby duty (caring, feeding, holding) and am walking at a normal gait & pace once again. This feels good to be helping my wife out once again and also be able to keep up with the family & friends when we’re out & about.
I still have what I’ll call “hypersensitivity” around my lower (hand port) incision. I’m not sure if it’s still nerves repairing themselves after being cut through, the hair growing back from being shaved, or a combination of both. The best way I can describe this is that every movement over an area about 1-2” around my lower incision feels incredibly powerful. The kind that make you suck in through your teeth whenever they happen. Untucking a shirt, sliding my pants up/down, things like that. I still wear my pants low when walking and pull them up over the incision before sitting down. Jean waistlines right on top of the incision don’t feel that pleasant. I have also had, since the surgery, similar but not as intense sensitivity at the bottom of my back & on the sides – the “love handle” area if I had to describe it. I really only notice it when toweling off after showering, etc. Otherwise it’s not prominent enough to affect me.
Driving has gotten markedly better; I no longer pull the lap-belt away from me while I drive, so that’s a plus.
During the past week I have been taking & sending pictures back to the team at NMH of my upper incision. It was fairly wide open at one point – enough that I could almost fit the head of a Q-tip in it entirely – but through their guidance of keeping it clean & dry and covering it during the day with Neosporin and a bandage, it seems to be finally healing on its own. At one point about 1cm of suture was actually dangling out. They had me clip that off myself. I’m thankful it’s healing on its own because I didn’t want to have to deal with going to a doctor, having him stitch it up, and then figure out how all that billing was going to happen (they would have had to bill NMH since it would have been related to the transplant, etc). The other laparoscopic incision (middle one) looks great. Healed perfectly, very smooth. I’m sure I’ll have a scar, but that doesn’t bother me.
I’ve been keeping water at the top of my to-do list every day, and drinking ~2L each day. I feel pretty good about doing this and, as I said before, it also forces me to get up and walk around during the day ;) I do still have to do a bit of “warming up” when I go from sitting for a long time to standing up/walking – takes a while to straighten back out. Other than this I’ve not changed anything about my diet – I still eat “ok”. Not much of a health nut.
To really illustrate how my ab muscles have recovered thus far: I have caught myself taking steps two at a time without even thinking about it (I did this routinely prior to the donation). I get up out of bed almost as quickly as before, but have been trained to use my arms more than I used to. I still don’t/can’t lay down in to bed without arm support, though. I still am not lifting really heavy things around the house like the garbage, car seat with baby, laundry baskets full of clothing, things like that. Feeding the baby at night (he weighs ~18lb) I can tell there is noticeable strain on the muscles when I go to lean forward to get back out of the bed I’m reclining in (against headboard, feet on bed) while feeding him. So I’m probably pushing a good limit there and don’t want to go any further until I notice that’s gone.
Sleeping is almost back to normal as well, I still feel weird if I sleep on my stomach and can’t comfortably lay completely flat yet. Being on either side, though, is tolerable. I do still feel different when doing it, though. Perhaps these new feelings never go away and just become my “new normal” – as long as everything’s alright inside I’m cool with that.
[Final Update: 6wk post-op]
Well the 6 weeks is up. I can say I feel ~99%. I am doing chores normally around the house, not being bothered at all by driving or my clothing, and the hypersensitivity around my lower incision has ceased. I’m back to a normal life. I had my BP checked yesterday and it was a cool 124/70, so everything appears to be normal internally as well. Great news. The only things that still plague me in the slightest are sleeping completely on my stomach – if you analyze this position you’ll see that you do indeed bend backward a bit, something that’s not quite comfortable for me to do too much just yet. I also do still notice a tad bit of strain when I use my ab muscles to lean forward while holding my almost-7-month-old. He probably weighs between ~19lb by now. Otherwise I have no problems carrying him around even in his car seat, something for which I’m sure my wife is thankful.
This morning I took a picture of the incisions for you to see how much they progress over the course of the “3-6 weeks” the hospital quotes for healing time. You can see them below in the “pictures” section. Brian is doing great by all accounts, I’ll be talking with him again tonight but the last time we spoke everything was right in line – more great news!
Thanks again to everybody who supported me throughout this journey, and for you for reading this post. I hope that you also will share it with your circle of friends so that, if at some point in their life they are faced with a similar decision, they can go in to being a living donor feeling just a little more informed.
WARNING – Pictures follow
Curious what it looks like? Here are a couple of ‘after’ shots that I posted to my social media feed in the hours and days after surgery.
A picture of the incisions hours after surgery. Brian found out the \’AC\’ is the prep surgeon\’s initials – they drew it on me in pre-op when they marked the left side as the side they were taking. The picture is taken with me laying down, but based on the illustration above and this, you can hopefully discern where everything is in real life.
And here’s me 3 days later at the hotel. At this time I was feeling quite bloated. There was just a lot of pressure internally. I always felt full, and didn’t really have an appetite. Which stunk because I was in CHICAGO of all places! Deep dish pizza, Italian beef, Polish sausage, and I could only eat about 5 bites of any of it at a time.
It wasn’t until our trip back home – a full week after the surgery – that I finally ate, what I called at the time, an American-sized meal. :)