Saturday, November 6, 2010

The Living Gift: Kidney Donation

bows,gifts,packages,presents,ribbons,special occasionsI received my package in the mail yesterday.  I was actually pretty excited which might seem a little strange-it was like getting the new Ikea catalogue or that book you've been waiting for from  I knew however that opening it front of the boyfriend (we'll call him Charlie) would not have been the best way to start the weekend after the week from hell at work so I was patient.  He eventually went to have a shower so I had time to read everything.
Getting the package did make it seem much more real and frankly a little more scary.  I think at this point its all the logistics that are worrying me like how much notice would I have to give work, when am I going to be able to bring this up to Charlie and also what if I am not healthy enough and get rejected. It is kind of motivating me to start back into exercising more often although truthfully I am not sure where to start with that either.
 I completed the forms-I will fax them back on Monday from work.  I am debating whether or not I bounce the idea of of John, my boss or if I wait.  He's probably in the top 5 people I'd tell and his reaction will likely influence me as has Charlie's.  Earlier this week I let my friend Sarah know what I was thinking and she was surprisingly supportive.  Not that she isn't supportive normally but she has always been that friend we all have who doesn't sugarcoat ANYTHING and therefore if she doesn't agree with one of your ideas or choices, you know it. At fist she didn't get the whole "giving to a stranger thing" but once I suggested that if one of the kids or Rob or I needed a kidney and no one she knew was a match, she'd be wishing for someone like me to donate anonymously or she'd be waiting for someone else to die for it to happen.  That seemed to help her understand better. She told me she was impressed/humbled that I would even be considering it.  That really made me feel like I am doing the right thing by exploring this.
I think Charlie's lack of support on this is the one thing that is holding me back.  Hopefully this weekend there will be a good time to rationally discuss things.

Friday, November 5, 2010

Just the Facts M'am...Surgery 101

Still waiting on the booklet and forms from the Southern Alberta Transplant program but I thought I'd share some online facts that I found (from Living Donors Online).  I am really curious if the standard in Canada is to scope or do whats called an open nephrectomy (see below for the difference).  Hopefully the booklet will discuss that-if not I'll ask.  The recovery times are obviously hugely different

  • Open nephrectomy: This procedure, which is the older form of surgery, involves making an incision of several inches—as long as 10 inches—from the left side (assuming the left kidney is taken) along the bottom of the lower rib to the midriff.
    There is an alternative open nephrectomy procedure that begins the incision further on the back along the side to the front (a flank incision), but a portion of the rib may have to be removed. You may be offered a choice between these alternatives.
    Regardless of the alternative, the incision requires cutting through three layers of muscle. Once access to the kidney is gained, the arteries and ureter are clamped off. The kidney is removed, flushed, and placed in a cold preservative solution. You may receive a blood transfusion during the operation, but such transfusions are rare.

  • Laparoscopic nephrectomy: This procedure uses a laparoscope—a device inserted into the abdomen allowing the surgeon to see and operate. This technique involves making several small (a couple of inches each) incisions in your abdomen, called "ports," to allow insertion of a laparoscope and other instruments. The camera and instruments are used to cut the kidney away from surrounding tissue after clamping off the arteries and ureter. The kidney is removed through an incision below your belly button. Then you're closed up.

    Note that donation of the right kidney is more complicated because the liver is in the way, therefore an incision may be made in a different area of your abdomen.

  • Donor Postoperative Recovery (Average)



    Hospital stay (days)5.52.9
    Able to return to full activity (weeks)6.23.2
    Actual return to work (weeks)6.34.4
    Drive a car (days)22.213.5

    Medical Risks of Living Donation Surgery

    There are risks to the donor during and after the surgery. Unlike most other surgeries, you--the patient--are actually in excellent health when undergoing surgery. Therefore, the risks are attributable primarily to the surgery itself and the removal of a kidney. These risks are small and manageable, but in the interest of full disclosure, here are some of the possible complications and consequences:
    • Pain. This is a certainty, and it is one aspect of donation that donors tend to underestimate. Fortunately, pain is managed through medication after surgery.
    • Complications. About 10% to 30% of donors report some form of complication following surgery. The complications include infection of the incision, minor bleeding, urinary tract infection, and pneumonia.

      One special complication of laparoscopic nephrectomy reported on LDO is feeling bloated. This happens because the abdomen is inflated with gas during the surgery to give the surgeon more room to manipulate the laparoscope and surgical tools. It takes a while after the surgery for the body to eliminate the gas, so the donor can feel uncomfortable for a while. LDO donors report that walking and being active helps to speed the elimination of the gas.
    • Reoperation.Some complications may be significant enough that you need to go back into surgery. Research shows reoperation occurs in 2% or less of donations. Examples of the kinds of major complications that require reoperatoin include hernia, bleeding, bowel obstruction, and bowel injury.
    • Readmission. You may have problems after you leave the hospital that require you to return to the hospital.  About 2% of donors return to the hospital because of ailments like nausea, vomiting, bleeding, constipation, diarrhea, and infection.
    • Death. It happens. Fortunately, it is exceedingly rare. The generally accepted rate of mortality risk is 0.03% (that's three deaths for every 10,000 procedures.)

    Thursday, November 4, 2010

    Love and Fear

    When I spoke to the Transplant Coordinator yesterday she asked me if I had told anyone, if I had family support.  I told her that I had told my boyfriend (we'll call him Charlie as he likes his anonymity) and that he was somewhat supportive. 

    In reality "somewhat" means he won't break up with me if I do it but he gets angry every time I bring it up and won't talk about it at all.  I know its fear talking-I can see it on his face and hear it in his voice.  I can tell by how fast he shuts down and ends the conversation.  I am not sure how I am going to handle it.  I feel like if I can just make him see all the good it can bring that maybe he'd understand.  This IS a good thing right?  His reluctance to even hear what I have to say is making me feel like he doesn't see any good in the situation or even in my intentions.  I hope I can change that but I am not sure how.  Part of the problem is that he thinks I've just been watching too much Grey's Anatomy.  Maybe I have been watching too much in general (downloading marathons of hit TV shows is a beautiful thing). However I don't think I have every demonstrated that much flakiness to ever make anyone believe I would do something as serious as donate an organ because I liked a prime time TV show.

    He did say once that he could "understand if it was someone I knew".  The thing is though, in all likelihood no one I ever know may need my help and if they do, they may not even be a match.  Then what?  Then that person and their family would be waiting, hoping and praying that a stranger offers to be a living donor or worse that someone else will have to die for them to live.  I can picture families, groups of friends watching their loved one have such a low quality of life and then if a new kidney materializes, watch them slip away.  If I could help someone like that is that such a bad thing?  Do you need to know the person for them to be worthy of your help?

    I am not saying its easy for my boyfriend to understand-I am sure there are as many people in his position as there are in mine-likely more.  I am just hoping that if I can find a way of helping him understand how low the risks to me are, that he could see the good in this even if he still doesn't agree.
    I found this blog today which looks interesting:  On April 19, 2007 FBI Special Agent Tom Simon donated a kidney to a stranger named Brenda Lagrimas. The details surrounding the surgery and the story of what brought Brenda and Tom together are detailed in the early entries of the blog linked above.

    Wednesday, November 3, 2010

    Here We Go...

    I received a call back today from the coordinator at the Living Donor Clinic of the Southern Alberta Transplant Program.  She picked the perfect time to call when no one was really around to hear me have the conversation. 
    She asked why I was considering this choice.  I gave her a short speech on how it is something I've thought of for a long time etc.  I also mentioned an old friend in Ontario who a few years ago donated a portion of her liver to her father (where that thought came from on the call is beyond me).  Its a weird speech to have to make and it reminded me of a job interview when they ask you one of those very obscure "what if" questions about something that will never happen.  At any rate she seemed pleased with the sentiment of my speech and the call continued.
    While some of what she said I already knew from doing a whole lot of Googling, I did learn a thing or two about the program and where it is different from what I read online.  Here are the highlights:
    • It can take 2-6 months to go through the testing, work ups and planning
    • Most of the labs are done in one morning at the Foothills Hospital
    • At the end of this I will probably have the most accurate picture of my current state of health as I've ever had.  Most people don't go through extensive testing like this ever in their lives unless they are sick.  So its kind of a nice opportunity for getting an uber thorough exam
    Another new and cool thing is that they register me through Canadian Blood Services on a new national registry they have created.  That way they can be sure the right person would get my kidney.  Some people have a hard time getting a kidney especially if its their second go round...they have weird antibodies in their blood that make matching harder.  By establishing the registry its easier to help those people if they are sicker than someone locally who might be easier to match. Because of the registry being national though, there is a chance I may have to travel.  I need to be open to that.  However she did say if it was transplant time and they wanted me to fly to the north pole, I can say no to that opportunity-in other words I could be selective about the travel if needed. 
    I must admit the travel part is unexpected but assuming the coordinate a lot of the details it probably wouldn't be so bad right?
    Next step will be to fill out a bunch of forms they are sending me.  Once they have the forms they will call me to set up a morning at Foothills. 

    So far I am still feeling positive about looking into this further and it still feels right.  Time will tell though.

    Tuesday, November 2, 2010

    Step One: Make the call

    The fact that I used the phone voluntarily says something to my commitment to this idea. Last night on my way home from work I attempted to contact the coordinator at the Living Donor Clinic of the Southern Alberta Transplant Program. I ended up having to leave a message (no surprise-it was 5:30pm) but that's a start. It was enough of a start to get my heart racing a bit and make me go through the whole thought process again-something I am sure I will do over an over until a decision is made. It's an exciting but scary prospect after all-I could help save someone, or at least make their life considerable better. At the same time there are risks, albeit slim risks, of death (less than 0.03%), illness etc. Most of the risks actually fall in the "what if" category and there is not much good that can ever come from what-iffing.
    I've decided that when these people call me back I am going to get all the facts from them and then worry about telling people or making a decision. For example, I don't know if they do the surgery laproscopically here as they do in many US states or if it will be a full incision (recovery time varies greatly between the two techniques. I've seen a mixed bag of opinions as to time off work required. And I guess I do want to understand what the risks are, here in Alberta based on their own experiences.

    Interesting fact-the Kidney Foundation representative mentioned in an email to me that she has heard of one other anonymous donor in the history of the program in Southern Alberta. Wonder if I'll be #2.

    Sunday, October 31, 2010

    The Beginning

    We all make choices. That's what life is all about; every day we make choices. Some, well most, are relatively simple. Starbucks or Tim Horton's? Elevator or stairs? Which earrings go with this sweater?
    Every once in awhile we are presented with choices that seem bigger than ourselves. They take a lot of time to figure out and even when we do, we may not always be able to explain why we made them.
    When I was little I used to sit and read the Toronto Star from cover to cover on Saturdays whenever I could. I'd read the columns, the sports, the current events and the editorial page. Its likely a large reason why I know so many random things now as an adult. Anyway I remember one Saturday when I was around 10, I read the story of a little boy from Hamilton Ontario. The details now are fuzzy but he had been riding in the backseat of his parents car. When they turned a corner somehow the door opened and because he did not have a seatbelt on, he fell out and sustained serious head injuries. Unfortunately he could not be saved and he was declared brain dead. His parents, in the midst of what I can only imagine was horrific guilt and despair, made a choice. They opted to donate his organs. In doing so they helped save several other children and adults.
    I don't know why his story stuck with me so many years. Maybe it was because I was a child myself. Maybe it was the science that intrigued me. Whatever it was, I have thought of that boy off and on whenever I hear of someone in need of a transplant. There was something about his story that made me want to help people the way his parents had. I made everyone I knew aware that if ever in the same position, I would want to give my organs.

    Fast forward 25 years. Science has moved ahead. We can now donate some organs without having to be brain dead. Living Donors are becoming common for liver and kidney transplants. What is even more amazing is that not only are people starting to give to help loved ones in need, but some people are making the choice to give to total strangers. Just because they can.

    And this is where I am. I have been seriously considering donating a kidney to a total stranger. It's one of those big life choices, bigger than me. I haven't told anyone yet. I started to once but stopped at the first sign of the "Are you nuts!?!?!" face that I inevitably will see more of, if I move ahead with this choice. All I know is that I feel like I am at the start of a journey to somewhere and whatever choice I end up making, I'll be the better for even having considered the options.