#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...


#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 24th 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 24th. 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.