Hey everybody caught out there in the interweb! I hope you’re all having a splendid - wait, what day is it?
I haven’t written an update for a few weeks because I’ve ether been off gallavanting all over Ontario or snuggled up on the couch not feeling well, so here I am to inform you. However, instead of giving you dating advice, I shall tell you about my health! Sidenote: pretty sure the woman in the bed next to me just crapped her pants. That may sound odd, but I’m writing to you from my semi-private room in Kingston General Hospital!
Most of you know that I’ve been quite seriously ill with kidney illness. If you’re unfamiliar with what’s been going on, click here to read the story. You may feel inclined to ask me about it and I appreciate your interest, but it’s really exhausting to repeat the way the last two years have gone!
Basically, my ureter on the right side (the tube from my kidney to my bladder) is severely damaged and narrow because of passing too many stones and a botched procedure to blast stones last October. It doesn’t allow my right kidney to drain, causing it to get backed up full of toxic waste and swell, which causes severe pain. Because of that continually happening, my right kidney now only works about 30-40% out of 100%. It will never go back to normal. My body has to rely heavily on my left kidney which is actually the kidney that makes the most stones, (I’ve had stones since I was 16 and no, it’s not hereditary or dietary.) With my kidneys being so backed up, I am always in pain and always exhausted.
Anyway, on May 25th 2012 I met up with my urologist because despite the latest in a string o procedures, I was having a lot of pain and my kidney still wasn’t draining. We discussed the options and after having tried SO many small procedures, we decided to go ahead with a major surgery. This major surgery would entail cutting me open across my tummy and cutting out the damaged section of the ureter in a hope to reattach it, then leave a stent in for the ureter to heal around it, stitch me up and begin a 2-3 month recovery best case scenario. I was called in for the first part of that surgery on June 15th. The doctor said he’d put me under and take some pictures in a cystoscopy to plan for the big surgery, but when I woke up he said he put a stent up there again (a 14inch long tube from kidney to bladder) to allow my kidney to drain in the meantime.
Four weeks went by. Each day I felt extreme pain but I tried to enjoy my summer on a $0 budget. I even had a fabulous birthday in Toronto thanks to my wonderful friends who hooked me up and treated me all weekend, even though I did get sick to my stomach right after our fancy group dinner and before the big party at Lou Dawgs.
On Wednesday, July 18th I went back to the hospital for a scheduled stent removal. It’s very simple: I just lay on the table, put my feet in the stirrups and the doctors put a hook up my peehole to fish the tube out, without any drugs, mind you. It’s over fairly quickly but it’s quite uncomfortable. The plan was to see how I do without the stent in and if I was still having symptoms and an ultrasound within a couple of weeks showed swelling, we’d for sure be doing the major surgery.
I went home that afternoon to rest on the couch but not before going for a walk around the mall and grabbing a sandwich. Within a couple of hours, I was in EXTREME pain. I just laid there crying, doped up on Percocets and praying to Jesus! The pain improved a tiny bit by morning but continued quite badly for four days.
By Saturday morning, I knew this was more than irritation from the stent removal, so I went to emergency. An ultrasound in early afternoon showed the most severe hydronephrosis I’ve ever had, which means fluid retained in a very swollen kidney. Essentially, my right kidney was not draining at ALL. That is extremely serious and life-threatening if nothing is done to fix it.
I was admitted to hospital as soon as the doctor saw the results of that test and we knew we would be going ahead with the major surgery. I was originally told that it would be happening last night, but then my doctor said the O.R. couldn’t be booked for that surgery til mid-August at the earliest. I was furious and I let him have it. Why didn’t he book the surgery two damn months ago when we originally discussed it?! I called my parents to meet me in emerge after 10 hours there alone and I cried my heart out. I knew my summer was over effective immediately and three weeks seems like an eternity to wait when I feel like I’ll just burst out of my back!
The doctors decided to put a nephrostomy bag in my back, which is essentially a tube that corkscrews into my kidney and has a bag on the other end for my pee to drain into. I will be getting surgery for that sometime within the next few days and that will relieve a lot of pressure and pain. However, I’ll have to tape this peebag to my body, hide it in my clothes or carry it in my purse - so no more swimming or tubing or major activity! It will stay with me for a few weeks until I can go into my major surgery.
It does seem like this major surgery should have been done all along, however it is quite risky. For one thing, with so many incisions, it can cause life-threatening infections. For another thing, the ureter may not be salvageable, so my kidney could quite likely be removed. If my kidney is removed, it wont be good because my left kidney is quite sick too. I’ll likely need a transplant and have to stay in the hospital a lot longer…it would be very risky for me and could drastically change my life.
At this point though, I’m game for anything. It’s been 21 months that I’ve been sick, and I’ve now had 11 surgeries/procedures. I haven’t been able to work since December and have spent well over 70 days in the hospital with a few admissions here over the last couple of years. This has totally derailed my life and has been quite hard on me at times, so whatever needs to be done to make this better: GAME ON!
People keep asking me where they can send Get Well cards or penpal letters, so if that’s something you’d like to do, that would totally keep me entertained! My mailing address is:
PO Box 35056
Stn Kingston Centre
Kingston, ON, Canada
My email is: firstname.lastname@example.org as well.
Thanks a million to Kyle Bailey for setting up that mailbox for me so people could send cards! :)
I also really appreciate emails, texts & DMs, but please understand that a huge side effect of struggling kidneys is exhaustion. I am so, so tired! I try to keep everyone updated via my blog, Facebook & Twitter, so even though you mean well, please limit the text messages asking me what every step of the way will entail! It is best for me to focus on happy things and stay entertained, rather than answer the same questions repeatedly. Also, my condition is not likely to improve in the near future, so just know that I’ll keep everyone posted!
It’s 11:45pm now in my quiet hospital room. I’m due for another painkiller shot and it’s time for my sleeping pill. My feet and hands are also plump and swollen from all the fluid backup, so I best be off! Your prayers are appreciated beyond words. It’s my cell phone, iPad and social media that keep me feeling surrounded by love once visiting hours are over, so thank you.
Talk to you soon!
Lots of love,