It's been well over a year since I donated a kidney. Life with one kidney is just like life with two kidneys. I never really thought about my kidneys before, and I don't think about my kidney now. There is no change in diet or lifestyle for me, and I can't tell that a little 4 ounce piece of me is missing.
I know that I donated a kidney, but I don't think about that very often. I hope that the person who has my kidney is doing well...but I have no idea how they are. I just tried to help someone, and I have to leave it at that.
Or do I? I obviously can't donate another kidney to someone, but is there a way that I can encourage other people to donate? What I did was very doable. People are dying for a kidney. We have enough kidneys in Canada to prevent anyone from dying who needs a transplant. It's just that the kidneys are inside people. How can I encourage people to think about donating? I've written this blog to tell my story, but it's the very occasional person who stumbles across this (I can tell from my statistics!)
More effective was a short radio blog that aired on CBC about my donation. I taped an audio diary, and Steve Wadhams from the Canadian Broadcasting Company created a program on "Living out Loud". You can listen to it here: http://www.cbc.ca/player/Radio/Living+Out+Loud/ID/2422643111/?sort=MostRecent
I don't know how many people listened to it, but I have gotten some surprised reactions from friends and acquaintances who were driving along listening to the radio, and suddenly heard my voice.
And then just this past week, John Longhurst, an old friend who writes a column in the Winnipeg Free Press, told a bit of my story.
http://www.winnipegfreepress.com/arts-and-life/life/faith/pastor-leads-kidney-donation-drive-247991621.html He was wanting to promote kidney donation because World Kidney Day is coming up.
I don't know what other forums I might find to tell my story. It's a good story because it's nothing unusual, it's just an ordinary story about medical professionals being able to save a life because someone stepped forward. A family not having to visit a graveyard, but instead being able to have their loved one around.
I just hope that my story can plant a seed in someone's mind, so they start to think, "Why not save a life? What an amazing opportunity that would be!"
Here I am, five months post-surgery. Most of the time I don’t even remember that I only have one kidney, and I don’t think very much about the operation anymore. Which is kind of weird because I spent 18 months thinking intensively about it.
What’s funny is that when I meet people who I haven’t seen in six months, I get a very big hello and a very pointed, “How ARE you??” And I wonder why they are acting so strange, and then I remember that they haven’t seen me since my surgery.
How am I? I can’t notice any big differences in my body really. The incisions are all fine and don’t hurt. My back doesn’t hurt anymore. Digestively I sometimes have issues with gurgly gas in my intestines, I never really noticed that before. I feel back to my regular energy, and my regular life, regular amounts of activity.
Six weeks after the operation I went to my family doctor to have my creatinine levels checked (a blood test), and they were fine. I have a blood test once a year, that’s the only follow up there is.
One thing that is a bit of a drag is that since my surgery I have had three bad colds, which is very unusual for me, I might get one cold a winter. So that does show you that my immune system has taken a hit. I am trying to take care of myself.
I still have people coming up to me and telling me kidney stories, about how someone they know had kidney disease and died, or how someone’s life was saved by a transplant. I’ve had people I hardly know come and talk to me about reading my blog and how it made a big impression on their life.
I don’t think very much about the person who has my kidney, it seems a bit unreal. It’s a contrast to how much I was thinking about them before the surgery.
And today is World Kidney Day; on my facebook page I encouraged people to sign their donor card. I was surprised to find that only 25% of people in Ontario have signed their donor card. It's a small gesture, but one that can save a life.
Tomorrow it will be six weeks since I’ve donated. I am back to work with a pretty normal workload at this point. I don’t have any pain at all. The dull ache inside has disappeared, there is less swelling around the main incision, most things have returned to normal. There are two things I do notice, and maybe they are related.
One is that I still have limited energy. For example, I’ll go for a walk for an hour and when I come in and sit down my body feels like I have been hiking for three hours…way more tired than I should be for that amount of exercise. I also find that I feel very weary a lot of the time. That means that most of my free time is spent lying on the couch… I’m a pretty get up and go type of person, and like to do lots of stuff. Well mostly at home nothing is getting done. The second thing I notice is that I am absentminded. I keep forgetting things! Of course everyone is forgetful, but the rate at which I am forgetting things is much higher than usual. Appointments, facts, stuff I’m supposed to be doing. So the lack of energy is in my brain too!
I am not too worried about all this, I see it all as part of the healing process. The nephrologist said a 6 to 8 week recovery, and so I know my body is still recovering. Physically, mentally.
This weekend I chatted with the friend who had a nephrectomy two weeks after me, and his recovery is very different than mine. He didn’t take any pain medication after the surgery. Nothing! And he feels good now. When I look back at my husband’s nephrectomy, I think his pain was more severe than mine; he had a really hard time getting up and walking because it was so painful, and he couldn’t do stairs for a while. That wasn’t my situation at all. But he was back doing physical labour at work within a month; and there is no way I could do anything like that, even now. It’s hard to predict how your body will react, you just have to see what happens.
I am back at work now, it will be five weeks tomorrow since the surgery. I am physically pretty much recovered. Nothing hurts! The thing I notice is that my digestive system is not yet quite back to normal and my energy level is low. I feel good when I start out the day, but if I am up and about I tank after a four or five hours, just very very tired, gotta-walk-slow-and-find-a-place-to-sit-down tired. Which is unlike me because I like to walk fast. The other day I was coming home from the library and a lady in her 80’s passed me on the sidewalk because I was walking so slow! So I am pacing myself, trying to do what I feel I can, and just gradually getting better.
It was my day off today, and instead of doing any projects, I lay on the couch and watched two movies in a row. Recovering isn’t hard work, it is kind of relaxing!
I’ve been thinking about the whole donation process. This would all have been a lot easier if I could met or talked to people who had done this before. I know Hamilton has only had two undesignated donors before, but I know in Toronto they’ve had several dozen.
For some reason I couldn’t find any blogs of people who had done this in Canada, until just the other day. I think it has to do with the fact that there are different terms for what I did. I’ve been called an undesignated donor, but it is also called a nondirected donor, or a non-directed donor, or an altruistic donor. So depending on what you google and how you spell it, you may or may not find anything. The Canadian Blood Service, the program that co-ordinates the matches, the program I was part of, does not have any contact with us, it all goes through the hospitals.
In the meantime, I am back to work, which is great. I am out and about seeing people, and a lot of people are asking how I am. I met someone today who just found out about the donation, and she said, “And you did it for a stranger. I knew Mennonites were nice, but I had no idea…”
Today a friend on facebook was complaining that they found themselves whistling Taylor Swift’s song “We are Never Getting Back Together”. And it reminded me that the morning I was going into surgery, as I was getting ready, I found that exact song going through my head. And I remember thinking, “That is the shallowest song ever…why in the world is that song stuck in my head right now, is that the best my brain can do…this mindless stupid pop song?” It wasn’t till tonight that I thought about the words…me and my kidney never were going to get back together. Ever ever! hhahahha
It’s been three weeks since I donated my kidney, and the recovery continues. I realize that in the back of my mind I had this expectation that I would be really feeling fine by three weeks past surgery. I was taking four weeks off work, and so the last week would be great, I would be getting all sorts of things done around the house. Well, guess again!
I think I had this expectation because my husband was back to work three weeks after his nephrectomy. But he did come home for naps in the middle of the day.
Where I’m at right now: the incisions are entirely healed. The largest incision, below my navel, is rather lumpy and sore. When I walk, it feels jiggly and sore. I still have a feeling of tightness around my chest, although that is gradually subsiding. My back is sore, especially on the left side where my kidney was. And my digestion system still seems to be having a problem with gas. As in the gas seems to get trapped, and when I lie down it seems it helps to gurgle it’s way through my system. And there’s just a generalized sort of ache in my insides. All of this isn’t pain, specifically, but soreness. If I don’t move around, it doesn’t hurt at all. But when I get up and walk around, it gets more sore. I have been really helped these past three weeks by treatments from an osteopath, whose gentle hands helped to balance out my body.
I am up and active for several hours every day, doing a few errands, going for a walk, meeting a friend for tea…but I am always happy to get home and lie down. I have a catnap or two during the day for a few minutes, I am not having the mega-naps of last week.
Something great happened today! I came across the blog of someone else who was an undesignated donor here in Canada! I hadn’t been able to find any of those, for some reason, and it was wonderful to read her experience of donating. So many similarities in the feelings she had as she told people about her decision to donate. Her experience was very different than mine, because the recipient was in the same hospital, and there were some negative aspects to her hospital stay because of that. Here is her blog: http://tomakeachoice.blogspot.ca/
I visited an acquaintance of mine yesterday. He is in the hospital, having a kidney removed because he has kidney cancer. So we had the same surgery. I saw him one day after surgery. He was up and feeling great, and had not had any pain medication that day!!! Wow! Just goes to show you how different every one’s experience is!
In a strange twist, before he came to see me, my surgeon was in the examining room next door to me, meeting with a family. When he first went in to talk to them, he must not have completely closed the door to that room. I could hear everything he was saying, although the other people’s voices were muffled. He was explaining to the person that there was a tumour on their kidney, that it was likely cancer, and he explained the options that they had for treatment.
It was such a déjà vu moment for me. This surgeon is the one who had had “the talk” with us when my husband was first diagnosed with cancer over four years ago. What a long journey it has been for us since he spoke those first words. The long months of waiting, the chemotherapy, the nephrectomy, the recovery, the long agonizing wait as we wondered whether cancer would reappear. And gradually hope dawning. And then further down the road, my own thinking about being a kidney donor, which led me back to the surgeon, back to the hospital, for surgery and recovery, and here I was hearing my surgeon beginning that story again with a whole new family. My heart went out to those faceless people in the room next to me. I could imagine all the emotions that were swirling inside them.
And the surgeon’s voice was exactly the same; calm, sympathetic, competent, clear. Answering questions patiently. At some point a few minutes into the interview, someone closed the door, so then I could only hear muffled voices. I thought about what a hard job this surgeon had, going through this over and over and with many cancer patients each week.
Around 20 minutes later he came into the room to see me. And I was a smiling patient, not a worried one. And I could thank him for doing such a good job on my surgery. He told me that it was a remarkable gift that I had given to someone. And I told him that the reason I was able to do that was because he was such a good doctor. What happened to my husband and I was hard, but our experience with him and the other staff at the hospital was as positive as it could be. And a direct result of that positive experience was that I would consider coming back willingly and going through that surgery myself. He saves lives in a lot of ways, not just by what he does, but how he does it, the attitude he brings to his work.
I'm glad I met this doctor, and that I was able to work with him to do something important together.
I talked to one of my surgeon’s residents first. I remember meeting him both before and after surgery. He asked me how I was feeling, had a look at my incisions and said they were looking good. He noted the swelling, particularly around the biggest incision, and said that would gradually go away over the next six months or so. He asked me whether I was peeing OK, and whether there was any blood in my urine. Everything is fine in that department.
He asked me if I had any questions. I asked him whether he knew anything about how the transplant had gone with my kidney. He said he knew that the transplant went well, and my kidney was working just fine in the new person, “So you can know you’ve really made a big difference in someone’s life.”
The only follow-up for me, he explained, is that in three months I need to go to my family doctor to have my creatinine levels checked, and then once yearly after that. He encouraged me to take care of my health, and try to avoid developing high blood pressure, which is affected by salt intake. It was a short little visit. He said I could go, or I could wait and see the surgeon if I had questions for him.
I did decide to wait. I had not seen the surgeon since our brief conversation in the operating room, and I wanted to thank him personally.
Today I returned to the hospital for my post-operative appointment with the surgeon…I was walking into the hospital exactly two weeks after my surgery.
Yesterday when I woke up I had no pain at all, even though my medication had worn off in the night. I wasn’t comfortable, but I wasn’t in pain. So that was a milestone. Other days I’ve woken up with the first thought being, I need to get my pills!
So because I was feeling so good, I got up and did some stuff that I haven’t done in a while, like laundry. I tried not to pick up anything too heavy, but I guess I overdid it, because today I woke up in a lot of pain again. You reap what you sow! The doctor was clear, don’t pick up anything bigger than a phone book for four weeks. Rest, rest, rest, that has to be my new mantra! So hard to remember, especially now that I am starting to feel better.
I was thankful to a friend who offered to drive me to the hospital today; I could have gone myself, but I wouldn’t have been able to take my Tylenol #3s if I was driving. And so I was not in any pain after the drive and the walk to the hospital.
Anyway, today I was walking into the hospital and I was just grinning. Last time I had walked in that hallway it had been very early in the morning and I was heading to the surgery to get admitted. Now it was all behind me, and I am well on the way to recovery. Such a fabulous feeling!
Ten days post surgery. I feel much better today. No sharp pains when I’m moving, which is a big improvement. More just a general ache in my insides, and when I take my pain medication I don’t even feel that. I went for a short walk outside. There was a bazaar happening at a local church down the road, so I drove over and thought I’d just go and stroll through it. But two minutes of strolling left me with a strong feeling that I was not well, and that I needed to be in bed. Listen to your body, right? So straight back home and into my pajamas for a long nap and then a quiet day on the couch.
Today my mind was opening up a bit to thinking about the four people who have new kidneys. For most of the past ten days I just haven’t had room in my head to think about anyone else very much because I’m just dealing with my body. I wonder what their recovery is like. They’ve got the same sort of incisions, I imagine. The inner operation would not be so invasive, I would think, since they’re not cutting anything out. As far as I know, even if they have a kidney that’s failed, they don’t remove it, they just add another one.
The difference for them is that they hopefully now have a kidney that is working, and they are peeing for the first time in a while. And their blood is being cleaned more efficiently and effectively, so they are going to start feeling better. And they can eat and drink more freely because their/my kidney is doing its job. They’re listening to their body and hearing something healthy. Cool!
A week ago today I was in surgery! The last days I have spent in my pajamas just sleeping and reading. I had three naps yesterday! Good friends have been dropping off meals, although I don`t have much of an appetite, and there are lovely flowers everywhere I look! My sisters sent me a big pile of books to read, and others have dropped off magazines and movies. People are being so nice to me!
I ventured out of the house for the first time today for an excursion to the doctor’s office to have the staples from my incisions removed. He didn`t want to remove all the staples, just half of them. The incisions are looking good though. My abdomen is still quite tender and bloated feeling, with some colourful bruises.
I came home and was still feeling good so I did the dishes and tidied up a bit. I wandered once around the backyard…in one week the whole backyard has been transformed, all the leaves have fallen, it’s beautiful…green and yellow. It was so nice to be outside.
For the last two days I have been on a maximum dosage of extra-strength Tylenols, as well as Aleve, which mostly covers the pain. I could be on Tylenol 3’s but the codeine in them is very hard on my digestive system, which is also uncomfortable. So I decided to just go without the heavier pain medication. Walking is fine, it’s just carrying anything, bending, turning over…anything that involves abdominal muscles means I get some short sharp shooting pains. Nothing excruciating, just enough to say OW!
I probably did too much today all at once, so by supper time I was pretty sore. I was feeling bad enough to need the Tylenol 3’s. Since I had the operation I have felt a tightness around my chest and I’ve had a sore back…I’ve been told this is probably from the air that they pump into the abdomen during the laparoscopic surgery. It’s very hard on the diaphragm, which I guess gets stretched in an unusual way. And so maybe that explains the sore back. But probably the extra exercise today was a bit much. The Tylenol 3s had me feeling just fine in around an hour. Thank the Lord for good pain medication!
Today is Hallowe’en and I’ve developed some lovely long green bruises on my wrists from where the IVs were. Feels fine but it looks rather gruesome! Boo! At supper my husband was making me laugh, which was not good because I was so sore, but later in the evening, I could laugh without worrying about it. It`s time for some more pills now before I go to bed.