#82. Everyone is different - December 2012

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.

#81. On the mend - November 2012

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…”

#80. Funny song! - November 2012

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

#79. Three weeks - November 2012

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!

#78. How he does it - November 2012

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.

#77. Working fine! - November 2012

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.

#76. Post-op appointment - November 2012

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!

#75. Listening - November 2012

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!

#74. State of the Union - October 2012

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.

#73. A wonderful husband - October 2012

 I had the operation on Wednesday morning, and on Saturday morning  I was able to come home, which I was very ready to do.  I wanted to sleep in my own bed, and be in a quiet environment to recuperate.  They gave me my pain medication just before I left, and so the ride home was not too bad, and I could crawl into bed as soon as I walked in the door.  Literally, since my husband had brought a bed down from upstairs and set it up in the living room, so I would not have to do any stairs.

He has been taking care of me all day.  He is so sympathetic, he knows how much this hurts because he has had a nephrectomy, and he is very encouraging about how well I am doing.  He is bringing me things to drink, and making sure I don’t have to bend over to pick things up, and asking me if I need anything.

We were sitting watching the world series baseball game this evening when he turned and said to me, “I don’t want you to think about donating any other parts of your body.  That’s it!”  And I told him that I had every intention of keeping all the rest of my body, and I said how much I appreciated that he had let me do this.  I really wanted to donate, and he had not stood in my way, and has been very supportive.  That’s the type of guy he is, and I am very thankful for him. He is a wonderful husband!

 Tonight was an evening of thankfulness, just being together, being able to be in a warm house, and eat a tasty meal that some friends had dropped off for us, and to have the operation behind us.  And good pain medication!  When I take the pills they prescribe, I am really in no major discomfort.

#72. More surprises - October 2012

Through this whole time of being in the hospital, I really couldn’t summon any energy at all to think about the person who had my kidney.  I did say to my husband, “someone else has my kidney in them”, but it was like a fact I would read about someone else, it didn’t seem to have anything at all to do with me.  The bodily action of recovering from having my kidney taken out was enough to make that break from my kidney pretty real.

All I could really think about was me and how I was feeling.  Thankfully the bad night turned into a better morning.  Daytime is always easier, since there are more distractions, rather than just thinking about how you are feeling.

The parade of earnest young doctors in training came marching by again, and this time I was not so surprised by them, and I was even ready to pull up my gown and have them look at me.  I was surprised when the doctor instead of just pointing at my scars, pulled the bandages quickly off my incisions without warning me.   I don’t think I yelled out loud but my mouth certainly fell open, and he noticed enough to say, “Sorry, I’m just taking these off.”  He was happy with what he saw and the parade whisked out, labcoats swirling as they scurried away.

I was curious too to see what was under those bandages.  There were five little incisions randomly placed above and to the left of my belly button, ranging between one and two centimetres long, all held together with staples.  Then there was a longer ten or twelve centimeter incision below my belly button, also held together with big staples.  There were also various bruises around the incisions, and the big marker checkmark had run randomly,  and then there was some dried blood and maybe disinfectant.  I was surprised at how much a part of me could resemble Frankenstein.  It was quite a sight.

I didn’t have many visitors this day, but I was a lot more mobile.  The nurse disconnected my IV, and I went for a lot more walks.  A couple of times I was able to go and make myself a cup of tea in the kitchen down the hall.  In the afternoon I had a shower.  I had passed gas and had a bowel movement during the day, so that graduated me into the real food world again, and I found I had an appetite when they brought me supper.  It tasted great!
 
The nursing staff were very nice to me, but as I got progressively better, their attention was focussed more closely on the other sicker patients.  They came if I called, but I was surprised how independent I was allowed to be.  The ward was lovely...clean, good facilities, a great view over the city.  But I started really wishing that I was at home.

#71. Night and day - October 2012

The next day turned out to be much more difficult.  The day started strangely; I was surprised at 6:30 a.m. to see a strange man with a clipboard moving to the head of my bed.  Strange because he was followed by a large parade of young men (there was one woman) who completely encircled the bed.  They were all staring at me earnestly.  I stared back at them.  As the resident introduced himself and the other people, I did remember him as someone I had met before the surgery.  I don’t think he was the man with the marker, but someone I had met at an earlier appointment. 

He asked me a couple of questions about how I was doing and asked to see my stomach.  So I lifted up my gown and everyone stared at my scars.   They were all covered in bandages, with blood covering the scars, but he pointed out some things about the scars to the people gathered round, and said that everything was looking great.  Then the parade moved on to the next group of people. That was a bit strange, I thought to myself.

I was feeling very uncomfortable, my stomach was very sore, and my back was sore.  The nurse told me I didn’t need the pain pump anymore, and that I was being started on oral Tylenol and some type of morphine pill for pain.  They had inserted a catheter while I was anaesthetized, and since they had observed for around a day that my urine output was good, they took the catheter out (although they still measured my urine in the bathroom).  Having the catheter taken out did not hurt at all.  Periodically through the day I was feeling nauseous, but they kept giving me gravol in my IV.

Through the course of the day, I got up to go to the bathroom.  It was quite a rigamarole with an IV pole, and finding my slippers while trying not to bend over and use my abdominal muscles.  I walked a bit down the hallway.  I felt steady enough on my feet.

 I had quite a few visitors, which were a great distraction.  I seemed to surprise everyone.  They would walk in the room looking worried and anxious, like they expected to see me looking horrible and sick, and I was looking pretty normal either dozing or reading a book. At least they were polite enough to say they were surprised at how normal I looked…maybe I really did look frightful.  That’s how nice my friends are!    I got some lovely flowers and some more reading material.

The time came though when all the visitors had left, and my husband went home, and I was in the hospital alone feeling very lousy indeed.  It was not a good night, I had a hard time sleeping, a hard time finding a comfortable position.  My abdomen was always feeling sore, with very sharp  pains when I tried to turn in bed, or sit up, or reach for anything.  I thought it was almost morning, and I asked the nurse what time it was when she came in to take my blood pressure.  And when I found out it was only 3 a.m.,  I felt pretty weepy.  So that was a low point.

#70. Before and after - October 2012

The anaesthetist was by my head with a mask coming towards my face and the nurse was saying to me, “The operation is over.”  Something must have happened in between the first and last part of that last sentence, but it didn’t seem like any time had passed.

I felt very awake, but then I knew I must be sleeping again, and then I opened my eyes and realized I wasn’t in the operating room anymore and the surgery was over.  I was in the recovery room.  I tried to gather my mind, which took some gathering, and I took stock.  How do I feel?

I felt nothing except a tightness in my abdomen.  No pain or anything.  My mouth felt dry, that was about the extent of the discomfort I had.  I let myself fall back to sleep.

When I was mostly awake they took me to the room where I was going to be recuperating.  I dozed away there till my husband came in, and he sat with me.  I was feeling pretty good.  Still no pain, I felt very clear and mostly just surprised that I had actually done this, I had actually donated a kidney.  The only sensation was tightness.

That day is a bit of a blur to me.  I felt very awake but every time I blinked I seemed to forget to open my eyes and I would sleep for a while.  Apparently my husband tells me I wasn’t making all that much sense that day. 

Later in the evening, I was able to sit up at the edge of the bed, and the nurse was able to walk me into the hallway and back.  I was not comfortable, but I wasn’t in massive pain or anything, I  rated it at 3 out of 10 on the pain scale when she asked me.  The worst was feeling nauseous, which I absolutely hate, but they were able to give me some gravol in my IV.  I remember thinking to myself, “This isn’t that bad.  This isn’t as bad as I thought it would be!”

I had a little button I could press that would give me pain medication as I needed it.   It would light up when it was available to be pressed, and it was always lit when I needed it.   I pressed it a couple of times, but not incessantly.  They gave me a shot to prevent blood clots.

That night I slept really well, even though it was interrupted sleep.  I felt the bed I was in was so cozy and warm, and people were taking care of me, and it was such a relief to have the operation over, I could just relax.  I felt very happy all night.  It was a good night.

#69. Warm people in a cold room - October 2012

The nurse who came to get me and wheel me into the operating room was very friendly and warm. It’s amazing how her tone of voice reassured me.  It didn’t help though that the operating room was freezing.  They had me wiggle over onto the operating table which was so cold on my bare back that I felt like I was lying on the counter in a Marble Slab Creamery Ice cream Shop.  I started shivering uncontrollably and my teeth were chattering.  Jittery as a bodily state, and not simply just a state of mind.  But the nice nurse showed up with heated sheets to help with that, and I lay there waiting as people assembled.

I had a chance then to look around the operating room.  A young friend who has had brain surgery suggested that once I get to the operating room I should only look at my feet, because it is all too scary to look at  the  surgical instruments.  But I am very nearsighted, and they had taken my glasses, so I couldn’t see any detail, so I wasn’t scared to look around.  What I was struck with was how many screens there were.  They were big and they were everywhere, facing in every direction. I knew the surgeon would have a screen because it was laparoscopic surgery, but it appeared everyone would be seeing inside me in a very macroscopic way.

I was very relieved to recognize the familiar face of my surgeon as he came into the room, which was pretty filled with people milling about.  He came right over to me first thing and squeezed my arm in greeting and he announced to the group of people that was assembling for this operation that I was doing this surgery not because I had to but because I wanted to.   That I was doing this to help people I didn’t even know and that he thought it was a great decision.  He leaned in and he told me that they were going to take very good care of me, and that everything was going to be fine. 

#68. Moment of truth - October 2012

Lying on a hospital bed with nothing on but a hospital gown and an IV in your arm is a moment of truth opportunity.  I was wondering if anyone would ask me, “Are you sure you want to do this?” but no one ever asked that.  They just kept asking, “What are you having done?”  When the doctor came in to my cubicle, magic marker in hand, he asked me, “What are you having done?”  When I answered he asked me to lift my gown and he used the marker to put what felt like a big check mark on my left side.

Then the porter was there and it was time to go, and I had to say good-bye to my husband. That was definitely the hardest part, to say good-bye to him.  And  I was sorry to be putting him through this, and I know it was hard for him seeing me being made ready for surgery.  He kissed me, and said, “See you soon”, and then I was being wheeled away down the hallway and into an elevator.

We were soon at the operating room, where the porter told me they were not quite ready to receive me, so he left me alone, parked in the hallway.  So I had a moment to gather my thoughts. I was very very nervous at this point and felt like crying because it was feeling emotionally overwhelming.  But I didn’t want to go into the operating room crying, so I tried to hold it together and think positive thoughts.

While up to this point the whole purpose of doing the donation had been about doing something kind for someone, it was impossible to conjure up this positive image at this point.  I couldn’t do it.  Maybe if I was donating to someone I knew, that would have been concrete enough to hold onto, but for me it was too abstract.  I couldn’t even think about God or pray or anything, I was just holding on trying to get through it.

#67. Transformation - October 2012

I had some serious jitters the night before the surgery, so that made me worry how I would feel when I woke up the next day.  But I was relieved to feel confident and positive.  I didn’t sleep much, and was up very early.  My husband drove me in to the hospital, and once there we went to the Day Surgery Unit, where all surgery intakes are done.  I was taken to a little cubicle, where I was told to take off all my clothes, put on a hospital gown and lie down on the bed.  The transformation into a person about to be operated on.  That makes it real!

I could hear different people on either side of me being processed for surgery, all there for different reasons.  The person in the bed next to me was having bowel surgery, for example.  I was there having surgery, but I wasn’t worried about any sickness, and that made a difference for me as I was lying there.  I wasn’t there because something was wrong, or out of place.  I was there because I chose to be there.

The first question the nurse asked me was “What are you having done today?” I told her that I was donating my left kidney.  She looked at my chart and remarked on my being an undesignated donor, but only in passing; the majority of our chatting over the next half hour as she did various tests revolved around the fact that she grew up in the town I live in now, so we were comparing notes as to whether we knew the same people.  She took my blood pressure, temperature, put an IV hookup in, asked me whether I wore dentures, have a pacemaker, and various other questions. 

When all that was said and done she told me my husband could come in and wait with me for one of the doctors to come and check me, and then I would be taken to the operating room.

#66. Good-bye kidney!

Please help someone have a good life!  I'm off to the hospital....

#65. D-Day! - October 2012

Tomorrow is d-day!  In fact in nine hours I’ll be starting surgery.  And because I know that when you get anaesthetic, you lose all sense of time, it will be like one minute later and I’ll be done surgery.  That’s pretty magical!    Of course I will be in pain when I wake up (not so magical).

Today was a busy sort of day, with meetings and trying to get loose ends tied up in order to leave work for four weeks.   And doing some cleaning up and this and that.  In fact it’s almost midnight now, and I need to get up at 5:00.  But, I figure I’ll be asleep for a lot of the next few days, so why not stay up late. 

I just drank my last glass of water, nothing to eat or drink after midnight for me.  So that’s the last liquid I’m sending the way of my left kidney...next time it will be someone else drinking water and giving my kidney something to do.  I guess I will have to stop thinking about it as my kidney. 

I talked to a lot of people today, on the phone, via email, in person.  People are saying such very supportive things to me, I am very thankful.   My kids both called; one from Saskatchewan and one from New York City.  It’s good to know people from all over are thinking about me and praying for me and the other people in this chain. 

It’s been a long process of getting to this point.  All the thinking about it over the years, then the appointments and tests, and then telling people and hearing a lot of reactions, then all the months of waiting to get matched and scheduled.  And it will all boil down to this time in the operating room where it actually happens. 

Well, there’s some adrenalin pumping here…I guess the nerves have finally kicked in.  I am nervous about the operation, I hope it will go well.  I am nervous about how it will feel (painful is a vague term until you are actually in it).  I wonder what it will be like to be a patient in the hospital; to have a breathing tube and catheter (although the breathing tube will all happen when I’m under anaesthetic), to have  my abdomen inflated and deflated.   And I wonder what it will be like to have one kidney….  Lots of unknowns.

In spite of the jitteriness about the unknowns, there is a sense of peace about the knowns.  That this is what I want to do. That this has been and is a good decision for me, and other people.  I have great confidence that God is with me, helping me to be a giving person.  And I have great confidence in my surgeon.  By this time tomorrow I will be on the road to recovery!

#64. Contagious! October 2012

I think what I have is contagious!  I have been getting phone calls and emails all day and a couple people have dropped by, wishing me well for my surgery.  I can sense that people are very excited that I am doing this, I think that the excitement I am feeling about this is catching.  It’s like it’s not just me doing the donation, but a whole bunch of people who are behind me, rooting for me too. 

A story where people get better…this is the kind of story that people love to hear.  Of course they won’t exactly hear the story of my kidney and how it is making a specific person better, but enough people have heard about how receiving a kidney can change your life if you have kidney disease.  People can use their imagination and they know it’s a good news story.

I am giving a kidney, but I've been thinking about the other people in this chain who are donating.  While they know one of the people who will be benefiting from the surgery, their donations in some ways  are more difficult.  First, it's more difficult for them because some of them probably have to travel to the place where the recipient is.  So maybe the loved one of the person who is getting my kidney in Toronto has to fly to Calgary or Vancouver to donate.  That would be so hard, to fly across the country and be far away from your support system while you have surgery.  And second, it's more difficult because they have to leave town while their loved one is having surgery.  Of course it's good surgery that will make them healthier, but I am sure they want nothing more than to be there and watch the person get better.  But they can't, because they are out of town recovering; and facing an airline trip home when they are still recovering.

It's easier for me because I am an undesignated donor, I didn't even have to go to Toronto if I didn't want to. I get the hospital and the doctor I choose for my donation, and they transport my kidney.  

I got a phone call from the hospital today.  I was so worried when I heard the transplant co-ordinators voice…was she telling me that the surgery has been postponed…that someone is sick?!  But no, it was that when I was at the hospital the other day for my pre-operative appointment, I forgot to go and get a chest x-ray.  I talked to so many different people and visited so many offices, I thought I must be finished.  So tomorrow morning I will go for the x-ray first thing.  A dress rehearsal for my trip there the day after that for surgery.

#63. Packing - October 2012

I’ve started packing my bad for the hospital.  What do you pack to take for a three day stay where you will mostly be feeling poorly? New pajamas of course!  And a robe and slippers.  But will I want to listen to music?  A friend made me a beautiful funky pillowcase, so I’m taking that with my pillow.  Will I want to read?  What books?  I decided on The Hobbit by J.R.R. Tolkein.  I haven’t read it for a long time, and it is a very absorbing book.

I have seen a lot of people lately and a lot of people are asking me if I am nervous.  Well, I may not have been nervous the other day but after twenty-five people ask you if you are nervous, you can start to feel nervous!  I also say that I am looking forward to this actually happening. 

I keep thinking about the person who is sick with kidney disease…they are packing and getting ready for surgery, and they are excited and hopeful that their life is going to change for the better.  With that in mind, I’m nervous but also excited too, that I get to be part of this.

I’m also running around being super busy trying to get myself organized to leave work and to have the house in some semblance of order.  There are tasks I want to do before winter comes (take in some plants, plant some bulbs, store the lawn furniture), and I know that after my surgery I won’t be picking up heavy things for some time, so I’m trying to check things off the physical to-do list. 

And I am worried about catching a cold!  If I am sick they may postpone the surgery, and that would be terribly disappointing for everyone!  So I am drinking lots of fruit juice and avoiding anyone who looks like they might be sniffly!

#62. Final appointments - October 2012

I had my pre-operative appointment at St. Josephs on Friday.  I went and answered a couple more questionnaires about my health, had another half dozen vials of blood taken, another heart test,  they weighed me and took my height (vital statistics for someone donating a kidney…will it affect her height?) 

I talked to the anaesthetist about how they put me to sleep, to a pharmacist about what medications I am on, and then to the transplant co-ordinator.  She was the one who walked me through what happens from the moment I come into the hospital on Wednesday morning…where to go, what to expect, where my husband will wait, how long it will take, and what the recovery process will be like.

It was helpful for her to explain that anaesthetic basically puts my bowels to sleep, and they will take a while to wake up.  Because they are not working very well, I won’t have much of an appetite, and they will be listening to my abdomen to see whether gas is moving around. 

She also explained more about the actual surgery.  I knew that after they make the laparoscopic incisions, they inflate my abdomen with air, so that they can move their instruments around more easily.  My husband had quite a bit of pain after the surgery…apparently from some sort of air bubbles that move to the top of your shoulders.  She explained that they insert a certain amount of gas into your abdomen, and they take exactly the same amount of air out, but that somehow, there is some residual gas that may cause this problem.  The answer is to move around and walk. That’s the answer for the bowels too…walking helps get the body back to normal.  

#61. Canadian news article - October 2012

Here is an article about the Living Donor Paired Exchange Registry.  It’s the program I am a part of, except I'm not part of a pair...

http://www.montrealgazette.com/news/Rewind+2012+people+three+kidneys+forever+linked/7734537/story.html

#60. Riding in a police car - October 2012

After my visit with the doctor, I saw the registered nurse who is the transplant co-ordinator.  I was able to ask a bunch of questions about this process. My first question was how they were going to get my kidney from point A to point B, namely, from Hamilton to Toronto. 

I was surprised to find that the Ontario Provincial Police provide this service. He said local police officers might take the kidney to the highway, or pick it up from the highway and take it into the city, as the OPP don’t have jurisdiction in the cities.   He said that if the traffic is particularly heavy, or there are big accidents on the highway, they might even take it via police boat to Toronto, and avoid the traffic entirely.

Well I’ve never ridden in a police car before so this will be a first.  At least part of me gets to ride in a police car!  I will have to tell my husband to look out the window towards the end of my surgery and see if he can see an OPP car having a box loaded into it!

This Paired Donor Exchange program is a national program, run by Canadian Blood Services. I asked whether all the rest of the people in the chain are at the Toronto General.  The co-ordinator didn’t give me much information, but he did say that they are not all happening in Toronto.  They could be happening anywhere across the country.  He said that they like to have the donor and the recipient in the same hospital, and the same doctor moves from one patient to the other, first taking the kidney out and then putting it in.  The recipient usually has priority, and the donation is done at their local location, so donors travel.  (Except in my case where my kidney is being transported to the recipient.) 

He also told me that the person who receives my kidney will not know that it is from an undesignated donor, although all the people in this chain know that it is being made possible by an undesignated donor.  They call it a domino donation, started by the undesignated donor.

Oh, and did I mention that I had to fill out another nine page questionnaire about my health!  I definitely could recite this in my sleep! 

#59. The link - October 2012

Well October 24^th is the day for the donation, so I am in the final stages of preparation.  Today I spent the morning at Toronto General Hospital; that’s where my kidney is headed to be transplanted.  I had to go there for the final work-up for the donation. First I went to the blood lab to have my final blood tests, to make sure I am healthy and to double check that I am a match with the recipient.  

I was a bit surprised as the nurse kept taking more and more tubes off the shelf as she got ready to take my blood.  I saw 12 vials, which was a lot of vials I thought, and then she grabbed five more just for good measure I guess.  Seventeen vials, that’s the most blood I’ve ever had taken.  But she was good at her job and it was over in a few minutes and it didn’t hurt a bit.

Next I went up to the doctor who will be taking my kidney out of a box and putting it in someone else’s body.  I am so filled with curiosity about the person who will get my kidney; I know I won’t ever meet them.  But this man links us.  He will see both me and them.  In a very personal way!

The doctor told me that Health Canada requires that the person putting an organ in someone else’s body has to meet the donor and sign off that they are healthy and are in good condition to donate.  So they can’t rely on the word of another doctor to do that.  He said that the regulations were done in a time when organs weren’t capable of being flown across the country, and that gradually these regulations may change.

It was a cordial visit.  I asked him about the other people in the chain of donations, but he said he didn’t know anything about that, he was asked to do this part of the chain and he does it, he is not the mastermind behind the whole process.

Once again, I was asked a series of questions about my health, my sexual partners and my family history. I can recite this in my sleep by now!  I am glad I got to meet the person who is such an important part of the team making this donation happen.

#58. A tentative date! - September 2012

I’ve checked in with the transplant clinic a couple of times this summer, but they have never had any news.  The main testing for compatibility has been happening in Toronto, and the people in Hamilton have been waiting to hear from them.

It has been frustrating waiting and waiting, and hard to know how to make plans.   Would the surgery be in August or September or later in the fall?  And how do I make plans at work and in my personal life not knowing when this major surgery is?  But every time I start to get frustrated, I just think about the person who is waiting for the transplant.  They are sick…for me it’s just an inconvenience!

It’s been over a year since I started this process of donating, I have been good and ready for quite some to donate.  And then today I got a call saying that all the people in the chain match!  I am so excited!  And they have tentatively set a date for surgery…October 24^th. I told someone that I found out the date, and they asked, “Are you nervous?”  And I said “No!”  It had not even crossed my mind to be nervous yet, I am just too happy to hear that this is finally happening.

#57. Qualms - September 2012

I was sick the other day with strong stomach cramps.  As I sat there in the bathroom holding my stomach, I had to think, “You think this is bad, you’re going to have your kidney taken out.  That’s going to hurt a lot more than this!” Another friend who had a hip replacement told me that two months later he is still not back to normal, still recovering.  Major surgery is major.

When I think about the actual operation, of course I have qualms.  I liken it to the feeling of walking out on a high diving board.  Quite intimidating for those among us who are non-divers, or who have not had many opportunities to fall under anaesthetic. 

But I am immensely cheered by people I know who have had this operation, my husband, for one.   I saw him getting better day by day. And he had the added challenge of battling cancer.  And a woman I met who had donated her kidney to her daughter.  She observed, “Yes, it hurt, but not for very long. And my daughter was getting better every day, it was totally worth it. And life has gone on for normal for me, I don’t even think about having one kidney.” 

I know it will hurt, and I know I will have to rest and not try to jump into activities too quickly.  But that’s a price I think that I can afford, considering the good that this surgery will bring about.

#56. Part of a chain - August 2012

My kidney donation is the first in a series of donations that are happening in a chain.  As I’ve tried to explain this to people, they have a hard time grasping it.  I did too, when I first heard about it.  But it’s a great idea.

When someone gets sick with kidney disease, often a loved one wants to give them their kidney.  But often the loved one is not compatible with the person they love.  So they enter a registry, as a pair. In that registry, they can get paired up with another pair…they donate to each other’s loved one.   (I give my kidney to your husband, you give your kidney to my husband).  But even that is statistically unlikely, because it’s hard to be compatible. 

When someone donates in an undesignated way, then the person who receives the donation, can let their loved one donate to someone else who they are compatible with. The chain becomes a straight line, rather than having to be a closed circle.  Statistically that means it’s easier to make the matches.

In my chain they are hoping that there will be eight people involved, four donors, four recipients.

The best and most informative article about a chain of donations that I’ve found is this article from the New York Times:    

http://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html?pagewanted=all

#55. Funny looks - July 2012

One thing that is uncomfortable about donating a kidney is that when people find out that you are doing this, and when they find out that you are doing this for a stranger, you sometimes get funny looks. There are some people who are just roundly enthusiastic and affirming, but some people aren't.

I have gotten questions that don’t always seem kind.  Questions that either blatantly, or in a veiled way,  question my motives.  People peering at me, it seems, to see whether I am doing this for attention, or to try to be morally superior, or something.  I get extremely uncomfortable with these questions.  I know in my heart why I am doing this, and whatever else people may think about me, they can think.  I just have to do what I think is right for me to do. 

It’s because of these funny looks that it is very tempting to just do this donation privately, and not tell anyone except the very few people who need to know. 

But part of this journey for me has been and still is the desire to let people know that there are people dying in our country because they need a kidney.  I didn’t know I could donate until I chanced upon some article in a book.  Even though at times it’s uncomfortable sharing my story, I feel it’s important to share it, in the hopes that it will cause something to click in someone else’s mind.  Somewhere out there in Canada, someone will be listening to my story and the little tumblers will fall, and they’ll say, “Hey, I could do that too.”  And then some other family will be embracing their loved one rather than attending their funeral.

And so my small little act, can be a tiny snowball of hope for one or two or three other people.

#54. It's a match! - July 2012

Well our blood was compatible!  I got the news yesterday!  When I told my husband he smiled and said, “Just think, someone out there has just gotten the best news they’ve been longing to hear.” 

I had hoped that I might hear when the surgery will be scheduled, but apparently they are working on the rest of the matches now.  Maybe they don’t schedule the blood tests for everyone at once; what a let down it would be if the first person in the chain of donations doesn’t match, and all those people went to the hospital for blood tests, all hoping to get the best news, only to receive bad news.

The transplant co-ordinator also mentioned that the doctor in Toronto who will be transplanting my kidney into someone else wants to meet me to do some tests.  She says I will only have to go to Toronto once.  We are all in the same health system, but I guess the doctor wants first-hand knowledge, not something passed on from someone else. 

I don’t mind.  I actually like the idea that the person who is going to be handling my kidney wants to meet me.  It makes it more personal.  Attaching a face to a kidney!  And vice versa, I can attach a face to the hands that will be handling my kidney, when it is so far away from home!

#53. Digesting the news - June 2012

Tracey, the transplant co-ordinator, also told me I might be part of a chain of transplants involving eight people…I’m at the beginning of the chain. 

Several months ago I agreed that I would put my name in a Canadian kidney registry. It’s set up to help people who need a kidney who are hard to match, broadening their pool of possible donors. This group meets four times a year to try to find matches. 

The advantage of this type of donation is that I would be more likely to be part of a chain of donations.  Because I am an anonymous donor and don’t need to receive a kidney for a family member, the chain does not need to close, and so they are able to create the chain more easily. My donation can help to trigger a number of other transplants. 

I really debated whether I would go to Toronto to donate. If you’ve read my blog, you know that some of the reasons why I was willing to donate was because that I knew the surgeon and the hospital in Hamilton from my husband’s time of illness. 

I decided that personally I could face going to Toronto and donating there. But my decision is also about how this will affect my family. It’s a lot less stressful for my husband to have me being operated on by a surgeon he has trusted with his life. The hospital and the routine in Hamilton are familiar to him and to us there. And it’s closer, just 45 km instead of 100 km away from our home.

So I decided that I want to donate in Hamilton. It just means that they will transport my kidney to the recipient. I wondered whether that meant there was a higher risk of rejection, or whether the kidney would not last as long.  But the research that I did showed that transporting kidneys doesn’t reduce the positive outcomes in kidney surgeries.

What happens next is that I have to go in for a blood test next week, where they will do a physical match-up with my blood and the person who needs my kidney. We match on paper, but will we match in reality?   They put our blood together and analyze what happens. This is an essential part of testing our compatability.

It feels sort of like eharmony or Lavalife, or one of those big on-line dating services, but with a more scientific approach, and a lot more at stake. 

This news has got me wondering all over again who this person is. Right now they are on dialysis, and they are hoping for a new lease on life with this transplant. They are going to get a blood test the same day as me, and we will meet in a test tube somewhere! And if that works out, we will meet in a much more intimate way.  Intimate and yet surprisingly distant! 

#52. Stress! - June 2012

It's been a bit complicated around home lately because my husband found out he is losing his job.  He's been working for the same company for twenty years, and they are closing down this branch of the business.  He will likely be out of work within the next six to eight months.  It’s very upsetting news for us, both because he has given so much to the company and he loves his job, and because suddenly he will be out on the job market in the middle of a recession here in Ontario.  We talk and talk every night, there are so many unknown factors, so many different directions to go.

Yesterday my husband’s boss came out from Manitoba to talk to us in person about different severance options.  It was a very stressful meeting with him all morning.  That very afternoon the phone rang.  I don’t know why I knew, but I knew it was the transplant clinic.  I just knew in my heart it was them calling.  And it was!  Of all days!  Tracey the transplant co-ordinator told me that they had found a potential match for my kidney!

Tracey asked me whether I would consider doing my donation in Toronto, because that is where the transplant is going to happen.  She said I should think about it for a few days.  I had so much in my head that day, I couldn’t really even absorb the news, let alone make a decision.

#51. Antigens and a national registry - April 2012

Yesterday I went in to see the transplant co-ordinator and signed papers to be in a national donor registry with the Canadian Blood Service.   This means that I might be set up to be part of a chain of donations that happens, sort of a domino effect.  The next meeting for that exchange is in June and they will talk about how they can best use my kidney.

The nurse also explained to me about antigens.  She showed me the printout about my blood and the type of antigens I have; they would need to try to give my kidney to someone who would not have a reaction to my antigens.

She also said that someone who has had a kidney transplant once, and rejected their transplant and is on the list again waiting for a transplant, would have a very long list of antigens, and so it is much harder to find someone who is compatible.

Even when on paper everything looks like the match will work, they will do a physical blood sample from the potential donor and the potential recipient to see what happens when the blood is mixed.

So right now I am waiting to hear how I can best donate my kidney to help the most people.

#50. Meeting a family - April 2012

I haven’t written very much lately because there is not too much to report.  I am still waiting to hear from the transplant office about a date for surgery.  I hope that it will be this summer.

In the meantime, today I had an interesting experience.  At a conference, someone who knew I was donating a kidney introduced me to someone else who she knew had donated a kidney.  I had lunch together with her and her husband.

This woman had donated her kidney to her adopted daughter around 5 years ago in an American hospital.  Her daughter had a kidney transplant as a young woman, and it had lasted for around ten years.  But then it failed and she went on dialysis.  Unfortunately, it took a really long time to find a donor for her, because she had a lot of antibodies.  She was on dialysis for twelve years.  “But her health suffered from being on dialysis, she still has health effects from being on dialysis that long,” her mother told me.

The mother was willing to donate, it’s just that she was not a match for her adopted daughter.  In this situation, an anonymous donor came forward, who happened to be a match for her daughter.  It started a chain with five pairs of donors/recipients, with all the operations happening in one hospital in one day.

The woman told me that within a few weeks she could almost forget that she had donated a kidney, her life has been entirely normal.  And of course she was able to help save her daughter’s life.

This couple was so excited that I was donating a kidney.  “I just think it’s a wonderful thing what you’re doing,” the husband said to me as he squeezed my hand as we parted. 

It was neat seeing how an anonymous donor can possibly impact a whole family.

#49. The designated recipient - March 2012

Lately I’ve been thinking a lot about the person who will receive my kidney.  What are their thoughts and feelings as they live with kidney disease?  They will get the call that they are going to receive a transplant, from a live donor. How will that affect them?

They will  know that the person donating the kidney is an undesignated donor.  They will know that somewhere in this community there is someone who will have an operation and give a piece of themselves to save an unknown person’s life.  That is the type of community they are living in, a community where we save each other’s lives. 

Maybe the person with kidney disease has parents, or children or a partner who are not a match, who would try to save their loved one’s life, but they can’t.  What will it mean to them that someone they don’t know is willing to make a gift like this?

Maybe this person will think that.  Or maybe they won’t .  Maybe they are mad at the world because they’ve been given such a hard road to travel, a rough road with kidney disease.   Maybe they will just feel relieved.  Maybe they won’t think very much about the person who gave them a kidney.  There are angry, ungrateful people in the world.  I’ve been an angry, ungrateful person sometimes.

#48. So much joy - March 2012

I can’t think of many things in my life that have brought me as much satisfaction as this journey to be a kidney donor. 

I remember when I was pregnant, I would sit and put my hand on my belly and just feel the new life inside in me. I could sit that way for ages, just feeling the baby.

I kind of feel that way now, as I think about donating my kidney.  I know that I am giving health to someone, or at least a good chance at health.  I am going to change their life in a major way, improve their quality of life.  My mind wanders to it during the day and I pause and think about it, and it is a joyful feeling, that I can help someone.

And in the meantime, as I start to tell people this, they keep talking to me about what a good thing this is, and what a sacrifice it is, and what  a nice person I am.  On the whole, I am getting so much positive feedback it is frankly a bit embarrassing. 

The sacrifice part is coming yet; I haven’t had the operation, or lived with the risk, or started living with one kidney.  It’s sort of like being pregnant…I loved feeling the baby inside me, but the baby did have to come out at some point, and that was painful.  I haven’t faced the labour part of the kidney donation.

But then the comparison between giving birth and kidney donation breaks down because labour was such an unknown thing, and I was worried as to whether I would do a good job. Giving birth is very much of an effort, a time of concentrated hard and painful work. Kidney donation is so much more passive; I just lay there and they wheel me in, put me to sleep, and they do all the work.  The labour comes in having to deal with the pain and the scars and the healing time.   

But then the analogy works again.  Having a beautiful baby in the world makes the bleeding and the pain bearable, it’s all worthwhile.  In the same way, knowing that somewhere in the hospital somebody’s body is starting to be healthy again, someone is starting to be able to pee again probably after years of not peeing, and they are starting to be able to feel better and have freedom…what is a few days of pain in comparison to that?

#47. Are you my kidney recipient? March 2012

There was a story I used to read my kids about a little robin that is looking for its mother.  He goes from animal to animal in his neighbourhood saying, “Are you my mother? are you my mother?” 

I’ve been thinking lately about the person who is going to receive my kidney.  I won’t know who it is, but someone, likely someone in this area, will be walking around with my kidney in them.

Maybe I will stand next to them in line at the grocery store.  Maybe they will be driving the car that cuts me off on the highway.  Maybe they are the person walking down the street ahead of me.  Or maybe they will be sitting next to me in the movie theatre.  They will be there, somewhere, a piece of me in them.  I won’t know where I am. 

Theoretically, we should treat everyone with kindness and respect.  But I think I would inherently be a bit more kind or more respectful to someone who was carrying one of my organs.  I would certainly be more interested in their welfare. 

How will being a donor change how I look at strangers?

#46. The blood doctor - March 2012

I had my appointment with the hematologist, the last appointment on the list!  It was a pretty short appointment, around 15 minutes long.  It was mostly a list of questions asking about everyone I’m related to, and whether or not they have had problems with blood clots.

The reason I was having this appointment was because my mother died of a blood clot, a pulmonary embolism that went to her lung.  She was recovering in the hospital after having her appendix out, and then just suddenly died.  This was in 1965.

The doctor said that what they are looking for is whether there is a family pattern of blood clots, because that is the best predictor of whether or not I am at risk for getting a blood clot.  Given that I have enough relatives who have never had any of these problems, he said that he is confident I am not a high risk to have a blood clot.  “The fact that your mother had a blood clot is tragic, but frankly, it’s not unexpected.  In the 1960’s they used to keep people lying in bed after surgeries, which was the way blood clots got started.  And they didn’t have the medication we have now to help prevent them.  Dying of blood clots after surgery was a lot more common then.”

So he gave me the green light for being a kidney donor. As I was leaving, he also commented on the fact that I am an undesignated donor, “On behalf of the medical system, I just want to say thank you for what you are doing, it’s a big thing for you to do, and it’s really cool.”

#45. The Surgeon - March 2012

It was good seeing the surgeon again, I hadn’t seen him for almost four years, since the night he came to talk to me in the waiting room after removing my husband’s kidney.  Even though we went through such a difficult period with the cancer, seeing the doctor was always a reassuring experience, and I have always felt good about him.

He remembered me, and inquired about my husband’s health, which is great, which makes everyone happy!  He talked to me about my kidney donation, “Why do you want to do this?”  I told him about wanting to help someone, and how the experience of almost losing a loved one makes me feel for the people who are waiting for transplants.  And that I hope I could save a life.  He was very definite in his response, “You definitely are saving a life.  I am so proud of you for making this decision!” 

I told him that when I tell people about donating, they are so scared for me doing this, but that for me, donation just isn’t that scary a process.  This is not an illness, I am healthy, I’ll donate, and I’ll recover.  He nodded…I know he understands. He’s had enough scared-to- pieces people in his office facing cancer diagnoses.  This is very different. 

He talked a bit about the surgery, looked at my CT scan, my abdomen, asked a few questions. “Do you know,” he said, “studies have shown that people who donate kidneys live five years longer than average. Life insurance companies did the studies, they wanted to see if there were risks, whether people should pay more for premiums.  But they found that kidney donors live longer than other people!”  

I laughed at that surprising statistic, “They should lower our insurance rates then!” and we both laughed because we know that would never happen!

I had to sign some papers, and then we were finished.  “It’s a great thing you are doing. We will take such good care of you.”  We both left smiling!

I’m writing all about the way people affirm this donation I’m doing not to try to get you the reader to feel a certain way about me, or because I want people to hear all the nice things people say about me.  I’m including this in case you are thinking about donating a kidney yourself.  Hearing an honest account of how people reacted to me, may prepare you or encourage you to do the same.

#44. The Resident - March 2012

Finally the day came where I was going to meet my surgeon.  I had to wait for half an hour before I was called in to see him; I was prepared to wait quite a bit longer, as I know how busy they are.   They happened to put me in the same room I had been in when my husband and I were waiting to have a consult about Temsirolimus treatment for my husband’s kidney cancer.   It was an interesting thing being in that room, remembering that.  Sobering.  It brought back a lot of that uncertainty and fear, just being there.  A sober place to reflect and be thankful that I am just remembering those hard times, we aren’t in that place anymore.

The resident doctor came in first.  He sat down, opening my chart, obviously scanning it quickly to figure out what I was there for.  “You want to donate a kidney,”  he observed, as he started reading.  “To someone you don’t know!” he added with surprise in his voice.  “If you don’t mind me asking,” he said, looking up, “why are you doing that?” I explained, and he said “Great. That’s great.” 

He answered a lot of my questions. How long is the operation?  Three hours.  How long will I be in the hospital?  Three to four days.  How do they tie off or sew shut the blood vessels when they remove the kidney?  Staples.  Which kidney will they take?  Usually the left one, because it has a longer blood vessel which can be used for the transplant.  Where will my incision be?  Right below the belly button, with a few tiny ones on the side to let in the camera and instruments.  How long should I stay off work?  Three to four weeks. 

He had a few health questions, looked briefly at my abdomen, and then he was done. I asked if I could see my CT scan.  “Sure, no problem!”  He pulled it up on the computer and showed me my kidneys.  That was interesting, I’ve never had such a clear view of my inner life before!  I was surprised how big my liver was.  I guess I don’t give much thought to my liver.  Always thinking about kidneys lately I guess!

I asked him if he would be helping with the surgery, and he said, “Probably not,”  explaining that there are a variety of residents at different levels, and one of the more senior residents would probably assist with that.  My surgeon has a whole team of people working with him.  The part with the resident took about 15 minutes.

#43. Life on dialysis -- February 2012

I ran into an old college friend this past week.  It’s always nice to see him, but I was particularly interested to talk to him because I know that a few years ago he received a kidney transplant.  I asked him what his life had been like on dialysis. 

First he said it was like being chained.  You had to spend hours and hours in the dialysis unit each week having your blood cleaned.  You couldn’t get away from it, it was a huge chunk of his life every week.  Second, he said you never felt very well.  Dialysis is not health, it’s survival. As your body gradually builds up toxins in the blood, you start to feel unwell.  You need the dialysis to clean your blood.  You also have to be extremely careful about what you eat or drink, fluids are very restricted because basically you don’t pee anymore.  Anything you drink has to be filtered out of your body by dialysis.  He talked about how frustrating that is on a hot summer day, not to be able to drink a big glass of water.  But more difficult is just not feeling good.

The biggest thing he talked about was the uncertainty that most dialysis patients face.  How long will my health last with this?  Will I get a transplant?  Will I stay healthy enough to be able to receive a transplant? 

He was so glad that his brother was able to donate a kidney.  When I told him I was working towards being a kidney donor, he was very affirming saying, “You will make a big difference in someone’s life.” 

#42. The Psychiatrist Appointment - February 2012

The same day I had the CT scan, I also saw a psychiatrist.  They want to make sure that I am of sound mind as I make this decision to donate. The appointment was pretty short, just over half an hour.  The psychiatrist was very pleasant, asking me some questions about myself that I have already answered a half a dozen times before about my health and family situation.  It appeared he had read previous charts because he knew some things about me already.  

Mostly the questions centred around my mental health, and whether I have had problems in the past with mental illness, depression, anxiety, intrusive thoughts, or had problems with alcohol or other drugs.  And then some questions about why I want to donate.  He asked me how I would feel if my kidney was rejected by the recipient; I said of course it would be disappointing to find that out, but that in my situation I likely never would find that out.  I explained how some psychological challenges are avoided by being an undesignated donor.  He commented, “It looks like you have thought about this a lot.” 

It was a pleasant conversation, everything was pretty easy to answer, and at the end of our time together he said he didn’t see any reasons why I should not be a donor.  So one more appointment down. 

I still need to see a haematologist (because my mother had some blood clotting problems), and the urologist who will do the surgery.  After all the appointments are complete, I will meet with the nephrologist again and he will outline the ways I can donate my kidney; the different options as to who would receive it, either a direct one to one donation, or a domino sort of donation through the national registry.

#41. The Inside Story - February 2012

Yesterday I went for a CT scan.  It was an interesting experience, as I have known people who have had them, but never had one myself.  I couldn’t drink anything for a few hours before.  I got there and they explained everything that would happen and how it would work.  They need to take internal pictures of me so that they can see a number for things.  First, to see if I do have two kidneys.  Sometimes people who want to donate find out they only have one kidney, they were just born that way.  Second, the CT scan allows them to see which kidney they should take and which they should leave, and it helps them determine how it will be transplanted.

After explaining everything they gave me two big glasses of water to drink, which I had to finish in ten minutes.  They also put a little portal in my arm, to give me something intravenously later.  Then they brought me into a room with the big donut shaped machine, and I lay on a table.   The table slid me (at least the torso part of me), into the machine, and it took some measurements.  Then the nurse or technician, or whatever her title was, injected an iodine based dye into my arm.  She told me I might feel a warm sensation, or a feeling like I was peeing, or a metallic taste in my mouth; these are all normal feelings as the dye goes through my body.  Then they immediately slid me into the machine again.  Within a few heartbeats of the injection, I felt a warm sensation, a metallic taste in my mouth and a feeling like I was peeing!  So three for three. Then I was told to hold by breath, I heard the machine whirring and it was taking a picture. Then they had me hold my breath again and they took another picture.  And that was it.  They had me wait around for five minutes, to make sure I did not have an allergic reaction to the dye, and then I was free to go, after they took the little portal out of my arm.

When I see my surgeon I can ask to see the catscan. I want to do that, I would like to see what I look like on the inside!

#40. Fear - February 2012

The other day I had a brief flashback to what it felt like when my husband was going through his cancer treatments.  These days, I don’t think about cancer all the time; it’s something that only pops up every couple of days.  The thought of cancer used to grip me by the throat and shake me.  It’s hard to live that way, but when someone you love is facing suffering and death, you can’t avoid it.  I’m so glad we’ve walked through those times to a different space.

But those times are a part of us now. We have survived, but we can’t forget. When I think about donating a kidney, what motivates me is thinking that someone somewhere has this kind of fear in their life, whether it’s for themselves or their loved one, their beloved son or daughter, their mother or father.  Will dialysis be effective?  Will it be death by kidney failure?

I can’t think of anything I would rather do in life than help alleviate that type of fear, by offering someone a new hope, a new chance at health. 

Do I have fear about the surgery?  Yes, here and there I have twinges, but honestly it’s nothing compared to the type of fear I’ve felt before with the unknown factors of a life-threatening disease.  Donating a kidney is not a disease, it’s something you do because you are very healthy, and then you recover from the operation.  It’s just not that scary.

#39. A big gift - January 2012

Whenever you go to a big hospital there are things named after people.  This wing is the “So and So memorial wing” or that tower is the “So and so Family Tower”.  There are generous people who have donated lots of money. 

When my husband had to go to the Juravinski Centre, a local cancer treatment centre, to have our first meeting with the oncologist, I was amazed by the building.   The beauty of the architecture really did help in a difficult time.  I think the beauty of the building, the attention to details, gave us  the feeling of being cared for, the feeling that someone had cared enough to try and make this terrible experience you were going through just a little bit more pleasant. 

If I had millions of dollars, I would definitely donate money to hospitals.  But, having reached the age of 50 and having not broken into the millionaire range yet, I think statistically it is not likely that any hospital will be the beneficiary of my millions. 

But what can I give?  I read in a Globe and Mail article that dialysis for one person for one year costs the medical system $60,000.  So if someone is on dialysis for 20 years, that might cost $1,200,000.  If I donate a kidney, they don’t have to be on dialysis.  So maybe I can donate a million dollars.  A million dollar kidney sounds good to me! 

Of course, it could be my kidney would be rejected in a few weeks or months. There are no guarantees in life.  Here is the article where I read that statistic about what dialysis costs:

http://www.theglobeandmail.com/life/health/transplant-waiting-lists-and-dialysis-costs-grow-as-kidney-supply-lags-behind/article1878019/