Well, surgery number 10 has come and gone and it went pretty well! I’m writing to you from my bedroom which is a bonus in itself - I never know when I go in for procedures if I’ll be admitted to hospital or not, and it is the biggest relief to go home!
Surgery on Friday was expected to be quite minor. The doctors were going to knock me out and take some pictures with a catheter so they could plan a better route for the BIG surgery coming later. I wasn’t nervous at all Friday morning. I’ve had so many surgeries and procedures now that something that minimal didn’t seem to be a threat at all!
After sitting in the waiting room with my step-mom and before being led to the operating room, I had to wait in yet another room by myself, but Kingston General Hospital provides volunteer staff to keep patients company and calm their nerves. The man who sat with me was 72, though he looked more like he was in his late 50s. He and I got chatting and laughing about little things, like where I’m from, where I went to high school and so on. I could tell he was curious about why I was having surgery so I told him my story, and he said, “Out of the 12 years I’ve volunteered in this hospital, I’ve never seen anyone as calm as you or with such a positive attitude about surgery!” He quite sincerely seemed a little baffled by me. And I’m not trying to talk myself up, but it was nice that he could recognize my effort. Every day I have to make a choice about my attitude towards this sickness and some days I completely fail and let it run my life, so it’s great that he could see that I was trying to stay optimistic!
I laughed and smiled right up until the oxygen mask came on my face and I drifted off to sleep, but my happiness only lasted until I woke up. The surgery took a couple of hours and I, as per usual, woke up crying and in a LOT of pain! They operate on me by going up my peehole (I know that’s probably TMI) so my whole abdomen feels intense pressure every time I wake up from surgery, and the breathing tube is awful! The nurse stood by me and gave me injection after injection of pain medicine until I stopped crying and it was more tolerable. Within a half hour of waking up, I was out of bed and using the washroom, eager to get back home to my own bed!
(A few hours after surgery)
The doctor came in and told me that he did what he intended to do, but because my big surgery isn’t booked until the end of August, he decided to try dilating my ureter (I’m sick because it’s far too narrow and keeps getting blocked, causing permanent damage to my kidney) by using a stent. We’ve tried this method three times before, but he thought we may as well try again while we’re waiting for the big incision surgery! In three weeks we’ll take out the stent (which is a very long, painful tube). He even said that the damaged part of my ureter is significantly improved since January, so it can most likely be repaired easily in the big surgery - which means I get to keep my kidney!
A lot of people have said to me, “Good thing you have two kidneys!” But for me, BOTH of my kidneys are sick, so to lose one would be pretty dangerous for me. I’d likely end up needing a transplant and that could be a couple more years of surgeries and procedures, if not the rest of my life! Learning that I can likely keep my kidney is a HUUUUGE relief! Since I learned that I might lose it (and there’s still a chance that I could), I have felt a dark cloud looming overhead that I was trying hard not to acknowledge. The fact that the damage and scar tissue has unexpectedly improved significantly since January is a HUGE answer to prayer!
I spent Friday night with my mom visiting for a bit and then my best friend Erica came by to keep an eye on me but I slept most of the night! I woke up on Saturday feeling pretty awful but I knew if I stayed in bed all day, all I would think about is the pain, so I threw myself together and drove myself to a family BBQ to celebrate my nephew and nieces’ graduations. Following that, I rested for a few hours, then decided to join my friends in celebrating my best friend Blaire’s fiance’s birthday! I thought hard about declining the invite, but I knew I’d either sit around the house feeling sorry for myself that I was missing out, or sit at the pub and share some laughs with my friends. The choice was pretty easy!
(About 36 hours after surgery, with one of my best friends, Blaire MacPhail.)
One of my friends was texting me and made an observation that I seemed fine because I was posting pictures of myself dressed up and smiling with my friends. Well, that’s kind of what my goal was! Just because I’m laughing and smiling throughout all this doesn’t mean I’m healthy or that I feel okay -it just means that I’m strong. I refuse to be Debbie Downer. We all know I’m sick and in a lot of pain but it doesn’t need to run my life. I spent about 7 out of the last 20 months stuck in bed every day which was quite simply exasperating, so if I can get myself in the shower, throw on some makeup and enjoy social outings, I most certainly will! It’s important for my physical AND emotional health that I don’t succumb to self-pity or depression - that will only make me feel worse.
I’m a little frustrated that I have to wait all summer for the second part of the surgery. I’m not sure what I’m supposed to do other than twiddle my thumbs and keep practicing mind over matter in the meantime, but I’m going to try to break it up into small goals. For example, hang on a few weeks til my stent comes out, then a week after is my 25th birthday, then a few weeks later will be the big surgery! And that’s how I’ll get through, just one day at a time.
The support and encouragement I’ve gotten over the last two years, six months and the last week since I’ve re-launched this blog has been overwhelming in the best way possible. I never know if it’s the right thing to be so open and share what I’m going through, but I’ve received dozens of emails in the last week from people who said they had felt alone in their illnesses until they read my post, or that they needed a reminder about what is most important in life, etc. If somehow me sharing my struggle helps others feel less alone then it is completely worth it.
I am not a hero or an inspiration or especially brave. I’m really, really not. But I do feel that I am able to be strong because I lean on God (Philippians 4:13) and I knew that, although I walked into the O.R. alone, I had so many genuine people rooting for me and praying for my health. Ahh - here we go - just writing that gets me all choked up. I just appreciate you all so much. I wish I could somehow show you all just how much it means to me and what a difference your encouragement really makes to my day.
Please do continue to pray for me as I wasn’t expecting to have this stent in me for three weeks and it is incredibly painful. It pretty much feels like I’m continually passing a kidney stone. I’m hoping that I will soon have some pain relief so I can try working part time and sustain a bit of an income leading up to the big surgery. In the meantime, I’m going to do my best to keep a positive attitude and enjoy every day that I can!
Lots of love,