Will I Need Another Catheter
Most people take peeing for granted. You drink liquids, and then after the liquids have been processed through your kidneys you pee out the waste products. They don’t have any need to go to the urologist’s office and have them stick a catheter into their urethra and suck huge volumes of urine out of their bladder.
Well, in my case, my body didn’t want to let the pee go. For a couple of months, I’d been having issues where I always felt like I needed to pee, and then when I went into the bathroom only a little bit of urine would come out, as soon as I left the bathroom though, I would instantly feel the urge to pee again.
Dr. Kaye, my adolescent medicine doctor, had set me up with a urology appointment but an emergency had cropped up a day before the scheduled appointment where I couldn’t pee at all. It got to the point where I was so uncomfortable I thought I was going to scream or cry out in agony. There was no other way to get the urine out without a catheter.
Yes, I Do Need Another Catheter
It had turned out that I was retaining 1300 ml of pee. That is over three times the amount of urine that a bladder is supposed to hold. Dr. Metta, the urologist, had put a straight catheter in me. He drained out all 1,300 ml of pee, and then removed the catheter. He explained that I should keep my appointment for the following day, because I may need him to put another straight catheter in me again.
“If you go to long without peeing and the urgency gets really intense, it probably means that you have a really high volume of urine in your bladder. When that happens you shouldn’t wait to come see me to get a catheter put in, you should go to the ER. Having that much urine in your bladder can do permanent damage to your kidneys.” Dr. Metta explained to me.
The night before my next appointment with Dr. Metta was torture. All night I was in and out of bed feeling like I needed to pee. Once again I couldn’t get a single drop to come out. At several points, I almost broke down and woke my mom up to take me to the ER to get another catheter put in. The thing was, I hated the hospital so much that I just talked myself out of it. In retrospect, going to the ER would probably have been healthier.
Retaining Another Soda Bottle of Pee
By the time my appointment rolled around the following day, I waddled into the urology office looking pregnant, with a red and sweaty face.
“Again?” Neilsa asked.
“I haven’t peed once since you guys straight cathed me yesterday afternoon,” I explained.
“Next time you need to go to the ER, it’s not safe to hold urine in that long,” Dr. Metta gently chastised me as Neilsa brought the bladder scanner in. They measured me at retaining 1250 ml this time.
“We’re going to have to put another catheter in again,” Dr. Metta informed me. “There’s no other way of getting the urine out.”
“I figured,” I sighed.
Once again I felt Dr. Metta wipe me down three times with Betadine and then insert the catheter. This time I didn’t chatter or shiver during the procedure. It was something that was a little scary right before but then felt like pressure and relief, not pain.
That Dysautonomia Diagnosis
After I finished draining out all 1250 ml of urine, Dr. Metta had me get dressed again and then came in to talk to me about the patterns of my symptoms, the medications I was on, and the other diagnoses I carried.
“Have they ever mentioned dysautonomia to you?” He asked me after I finished telling him how my stomach was paralyzed and that I had low or fluctuating blood pressures. I had described how frequently I passed out, and how I had chronic dehydration.
Then I had gone on to explain my chronically low electrolyte levels, along with arrhythmias, that only responded to IV fluids not oral or NJ supplements. He had listened as I had told him about my blood pressure that dropped when I went from sitting to standing, and my fast heart rate that took off when I stood up.
“Yeah, Mass General hospital told me I definitely have dysautonomia, and my neurologist and cardiologist agree, they just don’t know the specific type I have. They want to look into it more.” I answered.
Learning How to Put the Catheters in Myself
“It’s a lot to struggle with for someone who is just barely 22 years old.” Dr. Metta said. “I think your dysautonomia is affecting your bladder, causing something called a neurogenic bladder. I’ll know for sure once I get back the results of the urodynamic testing we’re doing in a few weeks. In the meantime keep coming in if you go more than six hours without voiding and we may end up teaching you how to put the straight catheters in yourself at home.
After three more days of coming in without ever once peeing on my own, Dr. Metta and Neilsa informed me that Neilsa was going to teach me how to put a catheter into my own body, myself.
“This way you won’t be so uncomfortable, and you won’t have to feel that extreme sense of urgency anymore.” Dr. Metta explained. “I’m going to have you start off by having you insert the catheter five times a day. Because you have diabetes insipidus and produce so much more urine, the frequency with which you catheterize may need to be increased.”
Is This a Forever Thing?
“I don’t know if I can do that!” I exclaimed horrified at the idea of inserting the catheter myself.
“Sure you can. It will decrease the risk of urinary tract infections, you’ll be more comfortable, and you won’t have to feel like you’re living in my office,” he assured me.
“Okay,” I agreed in such a shaky tone that my voice broke in half part way through saying the word. “Is this a permanent procedure that I’ll have to do for the rest of my life or will my body switch back to being able to pee on my own?”
“I honestly can’t tell you. I’ll know more after we get the results of the urodynamics study that we’re doing three weeks from now. It’s not life-threatening, you can live a full life expectancy with a non-functioning bladder and intermittent straight catheterizing won’t limit any activities in your life. It’s just a different way of emptying your bladder.” Dr. Metta told me.
The Catheter Learning Curve
Neilsa grabbed a handful of 12 French straight catheters, betadine wipes, a handheld mirror, and a tube of lubricant and led me into the large, handicapped-accessible bathroom, and began walking me through how to put the catheter in myself.
“The first vital step in self-catheterizing is to wash your hands well with soap and water,” she told me as soon as we got into the bathroom.
I washed my hands (vigorously, as I know how bad urinary tract infections felt and how easily I got sick). Then I sat down on the toilet and pulled down my blue and green floral patterned capris and pink and purple unicorn underwear. Neilsa handed me the betadine first.
“Do it just like Dr. Metta did. Wipe one side of your vagina, ditch the wipe, wipe the other side then ditch the wipe, and then with the last betadine wipe, wipe right down the center.”
Hands-Free Sterile Catheterizing
I followed her instructions easily if only the whole process could be this simple. Then she handed me the sterile wrapped package that was a catheter and then the lubricant.
“Open the package without touching the tip of the catheter just hold this blue cap on the end that stays outside your body. Then squirt some lubricant onto the tube without ever letting any part of your hands or the container the lubricant comes in, touch the catheter.” Neilsa instructed.
This part was harder but I managed ok. It was just tricky not letting anything touch the sterile catheter.
Aiming for the Little Hole
‘Now you’re going to spread your legs apart as far apart as you can so that you’re kind of straddling the toilet and use the mirror in one hand and the catheter in your dominant hand to try and insert the catheter into the little hole above the hole for your vagina.” Neilsa explained to me.
I looked at the toilet and the catheter package as Neilsa continued talking.
“That little hole is your urethra. The catheter needs to go into your urethra through to your bladder, once it’s in your bladder correctly you’ll know because the urine will start to drain out.”
“Is that all I have to do?” I asked.
“Well, then you advance the catheter a little more and keep the catheter in place until your stream of urine turns into just a few drops here and there. That’s when you know that your bladder is empty. Once your bladder is empty you can withdraw the catheter with slow gentle hands and then you can toss it in the trash.”
A Catheter Juggling Act
It was all nice and simple the way Neilsa described it, but looking for the tiny hole and then threading a tube through it without touching anything was near impossible at first.
No matter how hard I tried, I couldn’t see the right hole. Plus holding the mirror was awkward and it was tricky to coordinate holding the mirror with one hand and the catheter, that needed to stay sterile, in the other.
Finally, Neilsa put gloves on and put her finger on the hole where the urethra is, to show me what I was aiming for. The problem was that every time I looked away for a second I lost the hole again. When I finally found the hole, I tried to manipulate the mirror in my left hand so that I could see the hole and insert the catheter into it, but I couldn’t manage to hold both and almost dropped the mirror in the toilet.
Eventually, I thought I had the right hole and inserted the catheter, but no urine came out the other end, and anyways I could tell that I was in the wrong hole because it didn’t feel the same pressure I felt when Dr. Metta put the catheters in me.
“You’re in your vagina, not the urethra, that’s why there’s no urine coming out,” Neilsa explained to me.
I was about to pull it out and try again with a new catheter, but Neilsa stopped me.
“Leave that catheter in place so you can see what hole to put the new one in. It’s impossible to put the new catheter in the wrong hole if the wrong hole is already occupied,”
Discouraged and Ready to Give Up
Somehow though, I couldn’t manage to hold the mirror with my left hand and get the catheter into my urethra with the other. The catheter would bend, my mirror would slip out of my grip, or I would brush the catheter against the toilet and contaminate it. After about twenty minutes of awkward juggling, Neilsa suggested that I put the mirror down and try to guide the catheter in by feeling my urethra with the hand that wasn’t holding the catheter.
When I hadn’t had success after another fifteen minutes, I felt about ready to give up.
“You’re so close,” Neilsa encouraged me. “Just try one more time. Put gloves on, feel for your urethra, hold your finger right on the hole and then focus on getting the catheter right under your fingertip.
Finally, a Hole in One!
The whole situation made me feel pretty defeated and hopeless , but Neilsa was being so nice to me. She had given me 35 minutes of her time already. In my head I made a quick decision and figured I owed it to her to give it one more shot. I was shocked when I felt that familiar tight pressure feeling and I heard urine pouring out of the end of the catheter into the toilet.
“I knew you could do it!” Neilsa was beaming.
“Yeah? I wasn’t sure,” I admitted.
Once I finished draining the urine, I pulled the catheter out triumphantly before throwing it in the trash.
Neilsa gave me a bunch of different catheters to sample at home.
“Try all of these in the next couple days, and then when you know which type of catheter you like best, call us, and let us know which ones you want to order from the supply company. Dr. Metta will then write you a prescription, and you’ll get a month’s supply at a time.”
Neilsa also reminded me again that I had a urodynamics study at the office in a couple of weeks, and then I paraded out with the catheters, that I now knew how to insert myself, in my purse. Ahh, the sweet taste of victory.