About Emily

Tuesday, July 12, 2016

Becoming Lady of Liberpee

Image Description: A birth certificate for Peetee P. Wolinsky the SPC made by Emily's friend, Ali Kittylegs Ramos.  

Before I go on a very long rant about my Supra Pubic Catheter (SPC) placement with all the gory details (plus photos!), I’d like to reveal the copy-changed song that I’ve written to the tune of “My Country, Tis of Thee":

"My Peetee, 'Tis of Thee"

My Peetee, 'tis of thee,
Sweet void of liberty,
Of thee I sing;
Land where pee math died,
Land of urologists’ pride,
From ev'ry toilet's side
Let peedom ring!

My native Peetee, thee,
Land with the yellow sea,
Thy name I love;
I love thy beers and swills,
Thy wine and soda chills;
My heart with caffeine thrills,
Like that above.

Let urine swell the breeze,
And fall from all the trees
Sweet peedom's song;
Let ureters awake;
Let all that piss partake;
Let zippers’ silence break,
The drip, drip, drip prolong.

Our joyful hearts today,
Their grateful tribute pay,
Happy and free,
After our toils and fears,
After our blood and tears,
Strong with our hundred years,
O Peetee, to Thee.

Nesting Pre-Peetee

In the days before my surgery, I spent many hours talking to friends with neuromuscular disabilities (NMDs) who had SPCs and got the lowdown on what supplies to buy to have on hand for when Peetee came home. Let's just say that I went a little nuts.

Someone would suggest that I buy 2x2 gauze pads with paper tape; someone else would say 4x4 gauze pads with a different tape. I bought both. Someone would suggest that I use a leg bag that was 900 CCs, but then someone else would say that I should get a 2000cc bag (that holds like 68 ounces of water). I bought both. Someone would tell me to get a portable urinal so I could pee on-the-go once I was off the bag, so I spent hours looking on Amazon for the right male urinal. All in all, after sincerely taking in all of these suggestions, I ended up spending enough to probably open my own Walgreens. Funny enough, yesterday, after a follow-up call with a nurse, I learned that I barely need any of this. I can clean my stoma with soap and water and it is “up to me” whether I want to cover it with a simple piece of gauze. So yeah. Jokes on me. BUT, dear readers, if you ever get seriously wounded or just need to store urine somewhere, please just stop by my house and I’ll triage you.

This is the sexy "camping" male urinal that I bought from Amazon. If you want one for yourself, make sure to make it an Amazon Smile donation to NMD United. Image descriptions: 1) Emily holding a small container that fits in the palm of her hand with a lid. 2) Emily showing how the bag that will hold the urine pulls out of the bottom of the container. 3) Emily pretending to drink from the urinal. 

Not only did I buy enough supplies to outfit a small hospital for a year, I also embraced my morbidity. In the days before my surgery, I got my last wishes in order just in case I didn't make it out of the 15-minute procedure alive. I wrote my advanced directives, designated my power of attorney, filled out my registration to have my body donated to science, and wrote my last will and testament. I know, I know, but dammit, I was prepared - for anything….

I couldn't eat or drink after midnight the night before the surgery and Peetee's delivery wasn't scheduled until around noon (which ended up being 1:30 PM) the next day, the night before the big day, Dan and I went out to my favorite restaurant in Austin and I ate like it was the last meal of my life. I actually fell into a peaceful sleep that night. Again, I was prepared - for anything...

Peetee is born!

Aside: The more I try to not sound like a new parent, the more I sound like a new parent. Apologies to all of the *real* parents out there who are probably scoffing at my trivial comparison, but it’s really creepy how much I fawn over this tube coming out my lower abdomen. I gotta say, Peetee is really adorable and cute. He’s even a bit bigger than average - a size 20 french, which is basically the size of a McDonald's milkshake straw. 

It was a fairly temperate and breezy day when I left with Dan to go to the hospital to get my placement. I was told to arrive there a little before 10:00 AM, so we showed up at 9:30 AM and I was quickly placed into my room as I awaited surgery. Nemo, my Personal Care Attendant (PCA)/Sister From Another Mister (SFAM) for the last 16 years, showed up about an hour later to help me get changed for surgery.

Top picture description: Dan eats a peanut butter and jelly sandwich. Bottom picture description: Nemo, my PCA of 16 years, arrives to help me get ready for surgery. Emily is lying in bed with a blanket over her and a hair cap on. Nemo stands next to the bed looking back protectively towards Emily.

I haven’t had surgery since 1988 when I my spine was fused together to stop scoliosis from progressing and turning me into a human pretzel. I felt a ton of anxiety about going under anesthesia. Anesthesia presents as a very dangerous thing for most people with neuromuscular disabilities (NMD). So often I hear stories about people with my disease going in for simple procedures, like Peetee, and not coming out alive. Why is this? Folks with NMDs  experience compromised lung function and mechanical breathing due to weakened voluntary muscles, so things can go downhill fast with the wrong team. This knowledge prompted my end-of-life preparations mentioned above and you can probably imagine that I was a nervous wreck.

The first big step before the anesthesia is getting the I.V. line, and that is no easy task for someone with veins that have been depleted of water for 39 years. My veins are like burnt and shriveled string beans. I tried to plump them up a bit with some water the day before, but it was a complex feat requiring extra pee math calculations. Thankfully, my support group on Facebook came to the rescue again and gave me a ton of great suggestions (like the water and putting a heat pack on my arm). These tips led to my very first needle stick which actually worked.

Image Description: Emily's hand showing off her I.V..

With that victory in hand, I then got ready to meet with the doctors. I can’t say enough about the entire medical staff who took care of me at Round Rock Hospital. Sarah did my I.V. and she was a rockstar. I met with the Anesthesiologist, Dr. Patel, and he did his homework by speaking with my pulmonologist and neurologist. He assured me that he would take the lightest sedation route possible and chose a drug that wouldn’t compromise my respiratory system. Patel said that I would take a nap for about two hours on the same drugs that Michael Jackson used (he he, sha mon!) and wake up (not die) with Peetee by my side. The surgical nurse, Sue, promised me that she wouldn’t move my body in weird ways (I heard a horror story of a woman getting her legs broken when being positioned for surgery) and that she’d take good care of me. And finally, my urologist, Dr. Grady Bruce, a specialist of female urology, came in and met with me before the surgery. He was optimistic, patient, and I got the feeling that he could do the procedure with his hands tied behind his back.

Wheeling into the operating room and looking around a bit was the last thing I remember before Peetee's delivery. There was a lot of bright white equipment and lights and….

I woke up.

My body and kidneys must have waited for Peetee forever and the minute he showed up, they welcomed him with open ureters. My urinary tract has been dancing a jig of joy since 1:30 PM on Friday, July 8th. By 4:00 PM, I arrived home and started drinking bottle after bottle after bottle of water. My friend, Stephen, one of the sweetest guy's I know brought me a bouquet of bottled water instead of flowers after the surgery. I finished those suckers within the first two days.

Image Description: A line up of seven different varieties of bottled water. This is the water bouquet that Emily's friend Stephen brought her.

The bag of pee that I am currently pissing in sits inside a purse that hides it. Since Peetee arrived, I’m constantly looking in the bag and monitoring how much urine I’m sending out. I feel like a kid checking his Halloween candy as he goes from house to house. I actually get giddy seeing the bag fill up and I can’t even express the joy I have emptying the bag into the toilet BY MY DAMN SELF. Never in my life have I looked forward to going to the bathroom on my own. On. my. own. Cue Les Mis.


Since Peetee is still getting used to his new environment, I'm being gentle with him, and not putting a lot of stress on my bladder. I hook up to a bag for 22 hours of the day and only take it off when I'm showering or getting changed. When I'm bagged, I don't feel the urge to pee at all because Peetee catches the urine heading to my bladder before my bladder gets it and diverts it to the bag. At night, I have a bigger bag that I use and it hangs off the side of my bed. It's not exactly sexy, but it's out of the way. Eventually, once I heal some, I'll no longer be bagged and I'll just use a flip-flow valve, which will be attached to the end of the tube. When I need to pee, I'll flip the valve and pee into a bottle or water the garden or write my name in the snow/sand. Changing to the different bags or taking them off is a bit tricky. I'm proud to say that I've only peed on myself a few times and peed on poor Nemo once. She handled it like a champ though, despite all the screaming.

Image Description: Emily emptying her bag in her backyard. She's leaning to the side of her wheelchair, holding the bag, and pointing the spout downwards toward the grass. Side note: Dan told her to do it. 

Thankfully, because Dr. Bruce did such a great job with the placement, I've had to deal with very little discomfort and/or pain. Occassionally, I feel a twitch here and there, but Peetee is a good boy when he's not messed with too much. I'm wearing loose pants and skirts and I've finally got the bandage thing down (less is more). Initially, I was going a bit overboard with the protection. I'd compare this to putting sixteen layers of clothing on a baby when it's only 50 degrees out. Peetee prefers a bit of air and is not a huge fan of tape.

Again, my friends who have been down this road helped so much with advice on how to care for Peetee. I want to take this opportunity to apologize to all of those same friends on the internet who had to endure a bunch of top-of-the-crotch pictures sent to them in my quest to set-up the right bandage situation. Peetee is right over my pubic bone and about three inches down the "happy trail" from my navel. It's almost impossible to take a picture of Peetee and not get a some of the goods, which would be great if I were some kind of porn star, but Peetee and I will never be ready for that kind of publicity.

Image Description: A yellow tube come out of skin. This tube is set about an inch from Emily's pubic bone. The tube is about the size of a McDonald's milkshake drinking straw and going off to the side of her body.

4 Days Later

It's been just four days since Peetee arrived and I'm already noticing a physical difference. My goal is to drink approximately 80 ounces of beverage per day and I've met or gotten very close to that goal since I've started. I'm avoiding pretty much all kinds of beverages for now except for water. My body deserves water. It's 10:40 AM and I've already drank about 30 fluid ounces of water. My skin feels softer and looks clearer, my energy levels are improving, and I'm not as hungry. There's an inexplicable feeling of satisfaction that I carry around with me along with my bag of urine.

Image Description: A full body shot of Emily sitting in her power wheelchair at the end of her workday. A black leather bag is attached to the front part of her arm rest and discretely hides the bag of pee inside of it. Emily is wearing a long skirt, a white t-shirt, and a light sweater. Her dog, Yoli, is pictured in the background. 

Just like Dr. Bruce said, I was back to work on Monday morning. And yesterday morning, I noticed my bag was getting full, so without having to call for help or really having to say anything to anyone, I quietly left my office, went down the hallway, hit the automatic door to the bathroom, went into the stall, took my pee bag out of it's purse, flipped the valve at the bottom of it, voided my urine into the toilet bowl, got some toilet paper and cleaned the valve as I closed it, reached over, flushed the toilet, put the bag in the purse, cleaned my hands and went back to the office. It took only took five minutes to experience one of the most liberating moments that I've ever experienced. Well, not exactly five minutes - more like 39 years, 2 months, 8 days, 13 hours, and 30 minutes.