Monday, June 9, 2008

My Story




In 2001, in the height of my corporate career I was feeling "strange" - tired, muscle cramps and more tired. I was falling asleep at my desk at work - not good, with a general feeling of being unwell. I thought I was just burning out from all the stress and long hours. One of my colleagues literally ordered me to see a doctor (thank you B). I won't bore you with all the small details but the end result of a visit to my family doctor and subsequently to a specialist began my journey into renal failure. I knew absolutely nothing about kidney disease and was just wondering what medication I would have to take to make things better. I found out rather quickly that there wasn't a quick fix - that I had a life threatening disease and that I would need kidney replacement therapy just to stay alive. I also didn't appreciate just how dramatically this diagnosis would change my life and the many roads I would have to take to understand and cope with what was about to happen to my body, my spirit and my way of life. The therapy was dialysis.

Dialysis is used as an artificial replacement for kidney function Dialysis may be used for very sick patients who have suddenly but temporarily lost their kidney function (acute renal failure) or for quite stable patients who have permanently lost their kidney function (stage 5 chronic kidney disease). When healthy, the kidneys maintain the body's internal equilibrium of water and minerals (sodium, potassium, chloride, calcium, phosphorus, magnesium, sulfate). Dialysis treatments replace some of these functions. However, it is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.

In August, 2001 I began hemodialysis that continued for over 5 years. Some patients do well on dialysis. I was not one of them and was getting progressively worse. I could actually feel myself deteriorating every day. My life was focused around dialysis - 3 times a week, 4 hours at a stretch. My diet became a nightmare - entirely restrictive - restricted fluids, potassium, phosphorus, sodium, no legumes, no whole grains. I could only eat things that generally are considered not very good for you (e.g., white flour). I had to learn to eat all over again and to prepare foods that would keep me healthy.

I thought a lot about the many things in my life I had taken for granted; the strength each day to do the things that I loved, the luxury of an open schedule and the belief that time was on my side to ponder and plan the many options that lay ahead.

I learned that if you don't have a family member with a match for organ donation, your long term life option is a cadaveric (donation from a deceased donor) renal transplant. Unfortunately 45% of all kidney patients on the transplant list die waiting. In Canada alone, the wait for a cadaveric donor can be 10 years. This crisis is not exclusive to North America - it is a worldwide crisis.

I'm not telling you all this to create a pity party. On the contrary - I'm sharing my story because I'm blessed to be one of the very lucky people in this world. I was on two transplant lists, one in Canada and one in Florida.

Here's some key lime pie and a palm tree in honour of the state of Florida:



While talking on the phone with Psychgrad on January 4th, 2007 at 11 p.m. I heard my cell phone ring. Who could be calling on my cell at this time of night? When I answered the phone, what I heard made me entirely numb. The voice on the other end said "we have a kidney for you... do you want it?" In the midst of chaos, excitement, and fear, Psychgrad pulled together flights and arrangements and by 8:00 a.m. the following morning we were on a flight to Ft. Myers, Florida. On January 6th, 2007, I was the recipient of a successful kidney transplant. A second chance at life. After a 3 hour surgery, I awoke in the recovery room feeling 100% better than I had in years - the kidney was functioning normally, the operation a total success. I was/am blessed. Both Psychgrad and Actor Boy were with me to share this miracle of life.

Here are pictures of some of the information kidney recipients are given prior to a transplant. The first is the list of medication you take post-transplant:



The second is self-explanatory:



After 8 days in the hospital, I was released. Psychgrad and Actor Boy had, in the meantime secured a pretty decent place for us to stay. I wouldn't be able to fly for 3 months so Florida became home.



With this wonderful gift also came options once again. My diet is no longer restricted - although I work hard at respecting my new kidney and maintain a healthy diet low in sodium and low in fats. By the way, it's customary to name your new organ (kind of an inside transplant joke). My new organ is named Sidney the Kidney.

As a sidebar, although I was so blessed, I also think about the 20 yr old girl whose life was taken in a car accident and the decision that she and her parents made to donate her organs to save others. As a mother, I can't even imagine what these wonderful people went and go through. But, their decision changed my life.

This link will take you to links to transplant associations around the world. StumbleUpon

32 comments:

Peter M said...

Giz, I'm glad you shared your experiences with your readers. Life is good, enjoy it but also take care of yourselves and please everyone....sign your donor cards.

OhioMom said...

Giz

I am near speechless (anyone who knows me will say this is impossible)... thank God for the generousity of strangers. Thank you for sharing your story.

I registered as a donor way back in the early 70's, I encourage everyone to take this step.

(((Giz)))

kittie said...

Thank you for sharing your story - I'm so glad you have been one of the lucky ones.

I have been a donor card holder for many years - it's such an easy thing to do, and can be so important. An 'opt out' scheme would save so many lives.

Vicarious Foodie said...

Wow, what an amazing story. Just hearing your story makes me think of what I take for granted and how fortunate I am. Thanks for sharing.

April in CT said...

Thank you so much for sharing such a personal story with us all. How very inspiring (of the spirit kind AND the tear kind). I needed this to help put a few things into perspective.

noble pig said...

Wow what a great story...you are so blessed by that family who lost their child. What a miracle for you!

Bellini Valli said...

If we can save even one life by donation we know we will have done our job. I am still awestruck by friends of mine who donated 7 different organs when their 15 year old child was hit by a car. It takes courage to donate and courage for you to live with the disease and look to the future. I know you loved each and every day with passion. Thank you for your thought provoking story.CFheers to good health and happiness!!

Grace said...

i shouldn't have read this post at work--it's a bit difficult to hide tears streaming down your face. thank God for cubicles, and thank God for giving you a second chance at life! and thank you for sharing this with us and inspiring us to do our part! three cheers for sidney! :)

Krysta said...

what a powerful post. i'm glad that you are well and that the other family made that choice.

nicisme said...

Oh my gosh, what a story!
Thank you for sharing, and for bringing this subject to the table, so to speak.

Ricki said...

That's an incredible story--thank you for sharing it with us! I can't imagine what life must have been like before and am so glad you were able to acquire Sidney. It also sounds like you life has taken quite a turn since then--and we get to benefit from you blog! :)

myfrenchkitchen said...

Thank you for sharing this touching experience with us. I'm happy for you. This is a wonderful lesson in appreciation of life.
Ronell

RecipeGirl said...

Thanks for sharing your story. My father went through that... dialysis for many years and had so much trouble finding veins that worked, etc. The call finally came and he got a kidney from a young gal. He lived many happy years after that.

I wish you good health and happiness, as well as continued success with Sidney the Kidney!

Elly said...

Giz, thank you so much for sharing your story. I am so glad you were able to get a transplant. Like many others, I too have been a donor card holder for years and stories like this make me know I am doing the right thing.

Ann said...

Thank you for this post... and your event is a wonderful thing.

Dana McCauley said...

I've long been a donor card carrier. In fact, I'd give my whole body to science but my family seems upset by the idea.

Elle said...

Giz, it's wonderful of you to share that personal experience. It's so important to be reminded of the amazing gift and sacrifice that some families make.

I'm so glad you and Sidney are here to tell the tale!

Elle said...

We often take life for granted until something happens that reminds us of how fragile it actually is. What a blessing that you were a successful kidney recipient...and are willing to share your story. Almost 9 years ago I was (probably) in the place that the parents of the 20 year old was...I lost my 16 year old son in an auto accident. He had put the dot on his drivers' license to be a donor, with our blessing,(I've been ready to do the same for years) but due to mis-communitcation, the authorities were not able to contact us until it was too late to use his organs and since he was only 16, they had to have our OK, too. They were able to harvest, after our permission, corneas and ligaments, etc. I can tell you that it is a joy to know that part of him was able to be of use to another person who was still alive. I suspect that the parents of your donor feel much the same. I love it that you named the kidney Sidney. May you have a long and happy relationship :)

Lori Lynn said...

Oh Giz, I started to write something earlier, and it did not sound very meaningful. I cannot be clever or even articulate. I just want to wish you continued good health.

melissa said...

That's an amazing story Giz. Thank you so much for opening yourself up to all of us in that way.

It's funny, Ft. Myers, of all places. My dad lived in Naples the last 5 years of his life (until 2003). Loved it there.

And he was an organ donor too. As are all my family. :) You made me feel like that's the right choice. Thanks again for sharing.

shambo said...

Giz, what an amazing experience. Thank you for sharing your story. May you enjoy continued good health.

Anne said...

What an awesome story! I've been an organ donor for many years and urge everyone I know to do the same. I also am big on donating blood, especially after hubby received so much during his ordeal.

God Bless you, dear!

glamah16 said...

You are very lucky. My dad was on dialysis for many years until he passed away.

The Passionate Palate said...

Giz, thank you so very much for sharing your story. Wow. You are obviously a very grateful person with a wonderful perspective on life. Your story made me even more grateful for the health I have. We can't take it for granted, can we? Here's to your continued good health!!!

Katie's blog said...

I remember friends of mine at summer camp who went through dialysis. Our summer camp brought in a trailer properly equipped so these kids could go to camp. Thank you for sharing your story. We all take so much for granted. Life is truly a gift.

Neen said...

This story puts your *cooking* blog in a whole new light. Wow. I'm still processing. The change from completely healthy to totally restricted to completely healthy. The crazy late night flight (good thing your cell phone wasn't off!). The support that your kids were able to give you. And Sidney the Kidney. (giggle). Thank You for sharing.

Neen said...

You're the best, Mama Giz. Hugs. Just wanted to remind you.

familiabencomo said...

Holy-moly! You are very blessed! I have been a donor since I got my drivers license over 20 years ago....It's amazing how intertwined our lives are in this world - her choice to sign that card forever changed your life. Wow.

xoxox Amy

Ruth Elkin said...

Wow. Thank you for sharing this story. I'm so glad that my organs are on a donor list should something happen to me, it's good to know how much of a difference it makes to others

Mary said...

What a very scary experience for you! I'm so glad the 20yr old girl had registered as an organ donor. I received a cadaver ACL, which I subsequently named Wilma, but mine is a far less dramatic or inspiring story.

Proud Italian Cook said...

Continued good health to you, and thanks for sharing your story with us, I'm so glad you had that 2nd chance!

Nidhi said...

I am going to sign that card about which I was not very sure till today. Never really paid attention. Thank you Giz and cheers to your continued good health.

Share/Bookmark