Improve Kidney Donation Awareness

Ok, this one is a little out of the range of my usual coaching and graphic facilitation / recording theme – so I hope you will forgive the intrusion of a very personal topic.

My local friends and clients have been mentioning how they saw my picture and quotes in a newspaper story that was further picked up by the National Post. The story was on kidney donation and the picture of me and my father, Ken Merkley.

Click Here for Newspaper Story.

 

 

 

 

 

 

 

Dad has had chronic kidney disease since a particularly powerful strep infection lodged itself into his renal system back in his 20s. They knew it would be a long slow degeneration for the next 20 years until he would eventually need a kidney transplant. Right on cue, his situation reached critical in his 40s, and after a few years on dialysis, he received a kidney from a non-related donor (a young man killed in a car accident who’s family allowed, as per his wishes, for his organs to be shared).

Unfortunately the form of kidney disease that my Dad has, remains in his system … the transplanted kidney was slowly effected just like his natural one – so in the late 90s (after thriving 18 years with his first kidney transplant) he needed another one. That is where I come in, I donated to him as a living relative donation in 2000 …

… something a lot of families have to deal with, now that waits for non-related organ donations are SO incredibly long (typical waits in North America are 7 to 8 years!).

I’m taking the rather bold move of writing about this topic on my blog because unfortunately a lot of things don’t get communicated very well by newspaper writers … so I want to do my part to get the word out about kidney donation from a donor’s point of view. To help educate in general and to help other donors out there who are faced with this important decision to make an informed one.

Unfortunately newspaper stories like this one, make a point of ‘saint-izing’ the living donors and miss the points that really need to emphasized — like kidney donation saves lives and our current system is sadly screwed up so families do what they have to do to save the lives of their loved ones (or at least give them decent quality of life for many years).

While I appreciate that this reporter even wrote a story on kidney donation (unfortunately there is very little coverage on this topic despite the huge needs) his angle was a bit off and some of the facts (at least about me) were wrong. I did not miraculously jump up to be a donor without being asked as his story states … I was asked and willingly offered to go through testing (the first step to finding out whether I would be an appropriate donor or not).

After all, I had been a teenager and had witnessed all my Dad had gone through via his dialysis years (we had a machine in our basement and Mom learned how to hook him up to it every three days for about 5 hours at a stretch). He was a good sport about it all and they did there best to normalize the situation .. but the sympathetic memories of course were there. If there was anything I could do to help him avoid a repeat of that, I decided I would do it. So that is how I came to be his second kidney donor.

Dad has, in his retirement, gotten very involved in The Kidney Foundation at both the local and national levels – unceasingly volunteering his time and energy (in between tri-weekly golf games – he has his priorities of course!).

For my part, I’d like to write a few things down here … knowing that my blog gets good traffic and folks searching on kidney donation might find this:

Please Make Your Organ Donation Desires Known to Your Family:

A lot of people assume that the little decals we can opt to put on our drivers license are enough to donate our organs should something unforeseen happen to us. This is sadly not the truth. Even being registered on lists beforehand won’t do much good. Unfortunately most emergency room or hospital staff will not ask about organ donation or consult your driver’s license – the topic has to be raised and requested by your family members almost immediately (sometimes quite strongly in order for hospitals to start instigating procedure). So, if you are ok with donating your organs after your death (if they can indeed be used) please let your family members know your views and reassure them that this is what you do want. Most family members take some sweet solace from knowing that your last physical act (aided by their intervention) was an altruistic and very helpful one that benefits other families.

Educate Yourself About the Living Donor Process and Talk to Donors:

If you are in the situation where someone in your network needs a kidney (like Colin in the article who had no living relatives), consider educating yourself about the living donor donation process. Nowadays, with advances in medications and technology, non-related people such as co-workers, friends and colleagues can be living donors. Also, I would suggest you talk to several donors if you can, so you can get a few perspectives on what the process is like … before, during and after the surgery.

For the Record, Here is What My Experience Was Like:

There are very few online places to get information from a donor’s point of view … so I’m going to write out my experience in detail here (which will hopefully result in more accurate statements from reporters) – please just skip if you aren’t into hearing about all the details.

TESTING:
The testing process that I went through to determine whether I was a good candidate for donation took about six months. I was able to do all of the medical and psychological tests in San Francisco (where I lived at the time) which were paid by the Canadian healthcare system. It seemed like I had every test under the sun … from tons of blood and genetic work, to Cat Scans and MRI and you name it. Believe it or not it was kind of a fun process. I learned a lot about my body and walked away with the assurance that I was indeed very, very healthy (if there was anything wrong with me, they would have found it – was a free head to toe health analysis).

A GOOD MATCH:
The tests determined that I was indeed an excellent match and good candidate for donation — I am definitely my fathers daughter — so much so that the kidney staff teased me about my parents being from a very small inbred town (they aren’t … but the closeness and volume of the genetic markers that I share with my father might lead one to think so — how else to explain the very close match!).

WAITING FOR HOSPITAL SCHEDULING:
Once I passed all the tests … we had to wait a few months for some hospital space to open up (recipients have to wait until they deteriorate enough so they can be juggled with other families going through the same thing – with the most critical cases getting priority and the space in the hospital).

ARRANGING FOR TIME OFF:
When a date was finally reached, I had a couple of weeks to make necessary arrangements. My employer at the time, The Grove Consultants International was absolutely fantastic about it all – letting me use all my banked vacation and sick time and throwing in some extra days to make up the difference, for the approximately 12 weeks it would be until I could resume my full duties (at that time I was traveling like crazy as a very successful and requested Graphic Recorder).

Unfortunately a lot of donors are not able to take work off for three months – so the financials sadly dictate whether they are able to donate or not. Advances have recently been made, at least in Canada, to compensate donors for their lost wages, should their benefits or employers not be able to.

THE SURGERY: Marco and Trusty
I made the trip up to Canada to join my family, then we traveled over to Vancouver to the hospital where the surgery would be performed. I believe my operation was a few hours (I was zonked out so have no recollection!) … Dad’s was a little longer … as the kidney had to be meticulously connected. We all say it was the worst for my mother and brother … they had two family members they had to worry about while the two of us were knocked out and oblivious!

Prior to donation, I had nicknamed my kidneys … (I know, weird but true). The one slated for donation I named Marco (as in Marco Polo … as he would be traveling to a new country). The other one, the one that I would keep, I named “Trusty” … as she would have to do the work of two now so I needed her to be reliable (FYI: a person can function on just a quarter of function in even one kidney … so I really wasn’t taking a big risk in giving one away).

A 7-inch incision was made on my lower right back … a rib being shaved a bit in the process to get to ‘Marco’. Nowadays surgeries are even less invasive (they used to be 12 inches) with larposcopic techniques being employed that only leave an inch or two open – quite amazing (this being seven years ago, the Canadians weren’t doing that method then … but they are now!).

Recovery happened in stages. I spent five days in the hospital – back on my feet within a day then regaining strength and stamina as ‘Trusty’ took over the full load. After that, I stayed in local accommodation with my mother, who was back and forth to the hospital … recipients need to stay in the hospital longer for testing and rejection monitoring. Dad was out in about ten days or so, doing exceptionally well (very exciting to see him responding so well and the color and character returning to his face so quickly … quite a remarkable difference from his pre-surgery look). Very gratifying!

After the first three weeks it was just a matter of overcoming fatigue and regaining my usual energy –which came back gradually. My incision healed well and while understandably painful to begin with (like any surgical incision) but it really honestly wasn’t that bad – I actually thought it would be a lot worst. Fatigue was the biggest issue – as a healthy and fit 32 year old, I had never really experienced that before. So I slept like a baby, a lot! I could drive and get around within 3-4 weeks … so the remaining 8 weeks were just building back up so I didn’t have to take naps in the middle of the day – especially as my usual work required a lot of concentration, standing on my feet all day, hauling materials and racing around airports and client sites.

In twelve weeks I was back at it. Able to perform my regular duties as a Graphic Recorder. Yes, I have a scar, but its on my back so I don’t see it! And, when I do get asked about it, it comes with a good story.

Its been seven years since the donation and both Dad and I are going strong. No adverse effects on my end and his quality of life was almost instantly improved and remains steady. Its wonderful!

Grateful And Glad – But The System Still Needs To Change
My family and I are very grateful for the Canadian medical system that allowed me to donate my kidney to my father. It literally enabled me to save his life. I would totally do it again (however I’ll need to keep ‘Trusty’ for myself, so that won’t be possible).

However, despite saying that, I think that the current kidney donation system is very screwed up in requiring living people to donate their organs because the handling of organs from dead people is so mismanaged (sorry, there is no prettier way of saying that). We need to get over taboos and start talking honestly about this issue.

While it is wonderful that living donors can donate … and if you are in that position, I invite you to seriously consider it, as you have heard I’m glad that I did it and it was an honor —- however neither I nor you should have to. In the modern and civilized world that we live in, we should have a better way of dealing with this huge need in our society.

But until then, I and other people will come forward to help people who need kidneys. I hope that in the next 15 years or so, that this archaic system of kidney donation resolves itself, because my father will again need another kidney (if he lives that long). And I won’t be able to donate another one to him. So he’ll be in a situation like Colin in the story, forced to rely on the altruism of another living donor, probably not a relative – if we can find one. In the meantime, we live our lives. And appreciate the time we do have together, with him in good health.

Happy To Talk With Donors:
I am happy to talk directly with people who are considering donating their kidney to someone in their family or who they know (or perhaps even as an anonymous donor, as some regions are considering opening up this option). Just email me via the contact section of this site and we’ll set up a time to talk.

Thanks for reading. And thanks for those who have expressed their thoughts upon seeing the article in the paper. Hopefully this post more adequately sums up this challenging issue – its more than me and other donors being held up as nice people. Its about life for folks who need it and who still have a lot more left in them to live.

Christina Merkley

[tags] kidney donation, donors perspective, living donor, kidney disease, kidney shortage, renal failure, donating a kidney [/tags]

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One comment on “Improve Kidney Donation Awareness

  1. Deborah Bifulco on

    Christine-

    Thank you for taking time to shed light on this topic. If by reading this, even one more person becomes an organ donor, you will have done another wonderful thing in your life.

    Good luck and blessings to you and your father!

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