First of all, I’d like to thank you for taking the time out of your day to visit my blog. That you would care enough to keep up with me or check in once in a while is just so thoughtful. I truly appreciate all of your care and concern. 

I am writing this particular blog post because I have been fighting hard in an uphill battle recently. My first inclination was to pity myself, hide out and become depressed, which is understandable, but only makes the situation that much worse. Over time, I latched on to my supportive family and friends and found ways to push through and become more positive. Though there are still days that leave me feeling exasperated, I am learning that no pain lasts forever. The sun always, always dries up the rain eventually. 

I have tried to help people by sharing my story as honestly and openly as possible, and I have had the privilege to unite with countless individuals who are undergoing their own trials and tribulations. Finally though, I am ready to launch into what I’m sure will be a lifelong campaign for me. I’m ready to use my story and my penchant for networking and social media to change lives. 

A TINY BIT OF BACK STORY…

For those of you who don’t know me and are reading my blog for the first time, you may not know that I have been very sick. I have been sick on and off for my entire life, but the issue only began to reveal itself when I was 15 years old. What started out as a couple of kidney stones has, over time, become a life threatening issue. 

To learn about my health issue, please read this previous blog post by clicking here. Before asking me personal questions, I’d appreciate you reading the blog simply because the story itself is a rather exhausting and emotionally tender issue, and I often am not feeling very well in general. 

(Swollen after my major surgery on August 15th, 2012)

(Getting emotional in September 2012 after I was told that my surgery had worked and I would soon be completely fine. Less than a week later, I ended up in emergency again. The doctors told me that they were wrong and my surgery in August was actually unsuccessful.)

(Filming my on-camera segment at work in November 2012. Hiding my nephrostomy bag under my jersey.)

This coming December 14th 2012,  my right kidney will be removed. The doctors are hoping that enough time has passed since my last major surgery in August (I’ve had a couple minor ones since then) for them to perform this surgery laparoscopically, but they may need to do a very large incision. Donated blood will be on stand by for possible transfusions. The surgery will go one of two ways - I’ll either be much better afterward or my remaining kidney won’t be enough to support me due to its lifelong history of infections, stones, etc. Regardless, recovery from this surgery is going to be tough - especially since this will mark the 19th surgery/procedure since May 2011. (I have also had about 8 stents in my ureter and three nephrostomy tubes - one of which I currently have right now.) Many people have nephrectomies, but my situation is incredibly rare. A lot of people, with the best of intentions, tell me, “Everything will be fine.” Anyone who has ever been sick or suffered an accident knows that can be very frustrating to hear. I may still be alive and kicking, but 19 surgeries isn’t exactly what I would call fine! Even if everything goes great, this is still an incredibly difficult physical and emotional journey. The pain afterward will be excruciating - I know from experience.

Even if this surgery is successful and my health is okay for several years afterward, it is extremely likely that in the future I will need a kidney transplant or dialysis due to my particular health issues. Infections and stones, which are common with me, will become highly dangerous. Future surgeries are almost an absolute certainty. Here is where the campaign comes in.

THE CAMPAIGN!

For a long time, I have been wondering how I can turn my struggles into something positive, my heartache into happiness, my lemons into lemonade. Finally, I have found a way.

Today I am launching the So, So Much Hope campaign. From now, November 21st 2012 until December 25th, 2013, it is my goal to get 1000 people to sign up to become organ donors and/or donate blood. Due to my large Twitter following, that number almost seems too small, so if I feel that goal is easily attainable I will raise it to 10,000 people.

Now, I’m not asking you all to undergo surgery and give up a kidney. You can all become organ donors when your time on earth is up, as organ donation does not necessarily come from living people. You can sign up now so that when you pass away some day, doctors can use your organs and even tissue to save others’ lives. One person who is an organ donor can save up to 8 lives! If So, So Much Hope meets its goal, potentially 8000 lives will be saved, and if we raise the stakes, then potentially 80,000 people will be saved. Isn’t that amazing?!

Organ and blood donation can help millions of people suffering from a huge variety of illnesses and issues from cancer to car accidents. 

Donating blood is just as crucial as donating organs. Canada and the United States use over 43,000 units of blood EVERY SINGLE DAY!

HERE IS HOW YOU CAN JOIN THE SO, SO MUCH HOPE CAMPAIGN!

1. Visit my page at beadonor.ca & sign up to be an organ donor!
Canadians click here.
Americans click here.

2. Donate blood at your nearest blood bank!
Canadian click here:
American click here:

3. Email me at missdeyo@live.ca or tweet me @miss_deyo a picture of you signing up to become a donor or donating blood with your full name. Your picture will be posted to my campaign website (that will be launched soon!)

4. Share this blog post and tell friends about the So, So Much Hope Campaign!

5. Pat yourself on the back because you are a hero. You have selflessly saved lives and you have helped me make my dream come true. :)

HAVE YOU OR HAS SOMEONE YOU LOVE RECEIVED A TRANSPLANT OR BLOOD TRANSFUSION?

Submit your story (maximum five paragraphs) and photos of the time you or someone you love received an organ transplant or a blood transfusion. If you are currently waiting for one, share your story as well! Your story will be shared on the campaign website (launching soon) as well as Twitter and Facebook to encourage others and motivate them to become donors! Make sure you have permission to share the story.

Contact Missy Deyo
Email: missdeyo@live.ca
Twitter: @miss_deyo
Facebook: Facebook.com/missdeyo

Thank you to everyone who has encouraged me and helped me in so many ways. Thank you to those who have shared their stories or written me to share your appreciation for my openness about my illness. Thank you to all who have inspired me. Above all, thank you for giving me so, so much hope. 

Today is a pretty heartbreaking day. After an epic 23-month battle with my kidneys, specifically my right, I lost. I had an emergency visit with my urologist this morning after spending Wednesday, Friday and Tuesday in E.R. and found out that my major surgery in August (the 14th procedure/surgery since the beginning) was unsuccessful. It was our last hope to save my right kidney, and now it will have to be removed. I’ll be having a minor emergency surgery today to put a new stent (tube from my kidney to bladder) back in so my kidney can drain while we prepare for it to come out within the next 2-6 months.

Unfortunately, because the surgery I had in August was done laparoscopically (gas pumped into a few small incisions to lift the skin off the organs), I can’t have the same type of surgery to remove my kidney because it would cause way too much inflammation to perform the surgery properly or heal from it properly. It will be a large incision. I joked with my doctor and said that was even better because the laparoscopic surgery was so painful and he said, “Well, I won’t lie, this will probably be worse.”

Before anyone tries to share the common rhetoric of “Well that’s why you have two kidneys! No big deal!” - it doesn’t work that way for me. I’m not a typical person with two healthy kidneys. I’ll continue doing everything in my power to keep my body as healthy and strong as possible, but BOTH of my kidneys are sick. In fact, the left kidney creates the most stones and has had many issues on and off since I was 15 (10 years). With the right kidney removed, I’ll just have to live with a certain amount of pain and exhaustion from the left having to work harder. Bladder infections or kidney stones (which are both frequent for me) will be much more dangerous.

I wont go on a transplant list until the doctors see how I do with just one kidney. That’s just the way it works. Transplants can be amazing but they can also be very dangerous - your body either accepts them or rejects them. There are also combination treatments to help my left kidney function better.

This isn’t the kind of thing where taking out my right kidney will make me “back to normal” or “100% better”. It will be tough and it will be dangerous and it will be risky, but I’ll just have to get used to a new kind of normal and keep up my positive attitude! It’s likely that I’ll end up on a transplant list down the road.

If you don’t know what’s been going on, you’re likely wondering how this all happened. Well, I’ve been making kidney stones for many, many years. We didn’t know that, though, until I was 15 and began having frequent back pain. After a year of misdiagnoses, a CT Scan in E.R. showed kidney stones. I’ve had several isolated attacks on and off for years and had occasional visits to the urologist, but no one could figure out why this was happening. My last visit was in 2008 when I was 20.

When I was 23 (2010) and had just moved to Ottawa for work (I was the sole manager of a large clothing company for a few years, first in Kingston, then Ottawa), I went to emerge for what I thought was a bad kidney infection. An ultrasound showed nearly two dozen sizable stones between both kidneys. The doctors in Ottawa hemmed and hawed over what to do and decided to leave it alone, but for some reason I got very sick, very fast and stayed that way.

I was so sick that by January 2011 I could no longer work. I moved to Oshawa to live with my mom so I could just rest for a while. After several visits to the emergency room in Oshawa, I was referred to a urologist in Ajax, Ontario. By March, he decided I needed to have intrauterine lithotripsy (a procedure where they stick a laser up your peehole and blast your stones from the inside) on the left kidney where most of the pain was. I finally had that day surgery in May 2011. They left a stent in my kidney (a long tube from the kidney to the bladder, inside the ureter to keep it dialated so my kidney could drain) and after a painful week, the tube came out and I was better. The right side didn’t bother me much and I felt fairly healthy, so by June I decided to move back to Kingston and start a new life. I slept on my parents’ couch all summer until I had enough saved for an apartment. Two weeks before I was to move in, I had an attack of stones in the right kidney. I began to feel quite ill so I visited my specialist in Ajax again and he decided to do intrauterine lithotripsy again but on the right kidney.

Everything went as it should have, and I had a stent in again following surgery to allow for the kidney to drain, but I ended up in the emergency room deathly ill within four days. Somehow, my stent had become blocked causing my kidneys to back up and try to fail. I felt better for a week or so once it was pulled, but again became deathly ill and ended up in emergency. When I say deathly ill, by the way, I mean it completely literally. I was horrifically sick. Apparently my ureter had become restricted (blocked) all on its own. I had emergency surgery to put another stent back in to allow the kidney to drain. Throughout this time I was assigned a new urologist here in Kingston who is one of Canada’s very best. In fact, the entire urology team at KGH knows me and alll work together to come up with the best possible solutions.

Within six weeks, I ended up with a very deadly infection that went up my stent and into my kidney. I was hospitalized for a few days on the strongest antibiotics they could give me. The new stent was pulled out sometime near the end of December 2011. I had been so sick and drugged and missed so much time from work that I ended up leaving my waitressing job so I could have a fresh start somewhere else.

For the first few weeks of January, I thought I was okay, but I started having terrible pain in my back. Thinking it was an infection, I went to the emergency room and found out I had severe hydronephrosis (fluid backing up into kidneys causing them to swell, because the kidney can’t drain), so again my kidney was blocked. I ended up having a surgery within a couple of weeks where the doctor went up and tried to laser off scar tissue from the ureter and dialate it, hoping to clear the passageway so my kidney could drain. Again he left a stent in, hoping the ureter would heal around it within six weeks time.

Over and over we tried these methods. Without a stent in, my right kidney would back up, unable to drain. When that happens, permanent damage is caused to the kidney, which also causes lots of pain on the left as it has to work twice as hard, plus it causes severe exhaustion. Every time my kidney backed up, my urologist would try a reparative surgery and leave the stents in my ureter for it to heal around them. Every time a stent was put in, I’d contract a severe infection because when a foreign body like a stent is in, it catches infections and pulls them up into the kidney. Two times I’ve had nephrostomy bags in, which are tubes that corkscrew into your kidney and hang out the back, collecting waste into drainbags. I literally walked around holding my pee.

My urologist exhausted every single option over and over in painful but minor surgeries, hoping to avoid a serious surgery because serious surgeries are risky and can cause loss of organs or death. Finally we were out of options and had to do a major surgery. On August 16th, the urologist opened me up laparoscopically and cut out the damaged part of my ureter and reattached it, hoping to create a brand new ureter, albeit a little shorter. Again, he left a stent in hoping the new ureter would heal around it.

The first night was the worst night of my life. I can’t explain that level of pain. The surgical gas doesn’t go into your intestines like normal, it floats around pockets in your body and gets up in your shoulders or in your chest and makes you feel like you’re having a heart attack. All I did that first night was scream. It didn’t help that I had three incisons, a horrible JP drain, a nephrostomy tube in my back, a stent inside, an I.V. and a catheter! I even had to get up and walk around the hospital like that, but I finally began to feel better after a couple of weeks.

I started working again for the first time since December and was actually doing well, until last Tuesday when I got very sick to my stomach. I had been fighting a standard bacterial infection but it seemed to be resistant to most antibiotics, and ended up contracting a yeast infection inside my kidney as well. I went to the E.R. on Wednesday morning and the doctors gave me extremely strong antibiotics. I went home and instead of feeling better, began feeling worse. Friday morning the E.R. doctor called and said I needed to come down and get my stent removed because I couldn’t beat these infections with it in, so I went down. It was extremely painful…I’m pretty sure everyone in the hospital heard me scream. I should have been doing better but yesterday (Tuesday) my pain was only getting much, much worse. I went down to E.R. and had an ultrasound, and sure enough, my kidneys were already backing up again. Clearly the major surgery didn’t work either.

So here I am. It’s been two years and today’s day surgery to put a stent in will be the 16th procedure/surgery since May 2011. Most of my belongings are in storage as there’s no room here at my parent’s house. My cats are a few hours away at my mom’s, and I need a major, life-altering surgery. If I don’t have it, I won’t make it, and if I do have it, it’s a tough road ahead, but I don’t have a choice.

Through everything, I’ve tried to make every penny stretch, every good of feeling well count, and every bad day better with a smile. I may have lost the battle with my kidney and the remaining one may not be that great but I’m never going to give up.

Your prayers and kind words have helped more than you’ll ever know. Thank you.

Lots of love,

Missy