#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.