People will look at the title of this blog and scratch their heads. "Who the heck is Roy?" Well, allow me to elucidate. Roy was a guy I knew in high school. He didn't go to my school, but I met him at a basketball game my sophomore year when our schools played each other. Our "relationship" (if that's what you want to call it) started because I was dumb enough to give him my phone number. Now, don't mistake me here. I didn't have boys knocking my door down. I was pretty much OK with encouraging any boy who showed any kind of interest in me. Roy was taller than me (a requirement in my shallow days), nice looking and from a nice family. He should have been a total catch for me. I was not good looking. My family was a good one, but not well off like Roy's was. I was acutely aware that Roy had made an overture to someone who was below his station.
I was so glad that a boy was interested in me that I didn't see the imperfections in the facade he presented at first. I mistook his neediness as attentiveness. He needed to know all the time where I was and what I was doing. He had so little self-confidence that he needed a girl who was totally available to him. If I told him I couldn't go somewhere with him because I was going out with my family that night, he would pout and tell me that, since he was my "boyfriend" I should be the most important thing in my life. What? More important than my family? I didn't take me long to figure out that Roy wasn't the boy for me. I had been dazzled by his nice looks and attention. But...after about two months, I could hardly stand the sight of him. I babysat children who acted more mature than he was acting. It took me six months to extricate myself from this "relationship". When you're 15, six months is a long time. OK, so fast forward to now and why I've exorcised the ghost of a long lost boyfriend to make a simple analogy.
Starting about May, I started to feel a slight pain in my left lower back. It wasn't anything distressing at first. I work in a grocery store and I lift a lot of things. Maybe I strained my back? So I took some Aleve and put a heating pad on it and it seemed to go away. I went on about my life and didn't give it another thought. Two weeks later, right before I started my vacation, the pain came back. This time, I saw a little blood in my urine, too. But drinking extra water seemed to solve that. But the pain didn't go away with heat and Aleve this time. About a week after I got back from vacation, the pain got so bad I had to leave work. At this time, I made my first trip to the ER. I had my friend take me and we ended up waiting four hours just to be seen. When I was finally called, I was taken back to an exam room. There, the nurse started an IV and took blood and urine from me. This was before I ever saw a doctor. I have learned since then that this is SOP for Emergency Rooms. Doctors can learn a lot about us and our state of health by looking at our urine. When a doctor finally came back, he treated me a bit suspiciously. I could tell he thought I was drug seeking. I told him "Look, I haven't been to a doctor in five and a half years. I didn't just think at work 'Maybe I'll go the hospital and get some drugs. I don't feel like working tonight.' I left work because I'm in pain and I don't know what's causing it. I actually listen to my body when it tells me that something isn't right." I'd been in pain (cause unknown) for weeks and now the doctor in the ER was treating me like I was faking. He handed me off to another doctor, an intern who asked me questions about my sexual activity. "I'm 57-years-old," I told him. "I've had STD's before. This isn't an STD, unless they've come up with a new one I didn't know about." Meanwhile, I was describing my pain as "7 or 8 on a scale of 1 to 10" and they at no time offered me anything for pain. He felt around on my stomach, but there was no area I could point to that hurt specifically. I know from past experience that when a woman goes to the doctor with non-specific abdominal pain it's time to start the hand patting and the lectures about stress and getting my weight down.
I was frustrated, to put it mildly. I'd already waited four hours to be seen. Now they were playing a game of musical doctors on me. The last doctor who came in was the attending physician. He asked me questions about my fluid intake. He asked me about being dehydrated. After hearing my answers, he said "Cheryl, I suspect you have a kidney stone. I'm going to order a CT to see if you do have a stone." Finally, a doctor who believed me and wanted to get to the bottom of my symptoms. However, he still didn't offer me anything for pain. I had to drink a large bottle of contrast before they could do the CT. They left me alone for 45 minutes so I could drink the contrast. Of course, after drinking that much fluid, I had to go pee. So they let me pee before taking me to get the CT. I was scared because, as usual, a small part of me was afraid of what they might find. What if I had a tumor? What if it was already spreading? This is normal for me. When I don't have information, my brain plays out the worst case scenario. Even after the scan, while I was waiting to see what they found, I spent the time working myself up to the point where I was convinced I had cancer. An hour later, the doctor (the one who had ordered the CT) came in and told me "Cheryl, you have a kidney stone." I had to ask him which side it was on and he asked me to guess. I said "left side because that's where the pain is." He said "Well, it IS on your left side. But it's not blocking anything so you shouldn't be having pain." I replied "Well, I am. I've been having pain for almost a month. Tonight, I had to leave work because it got so bad." He took out my IV and handed me my discharge papers and said "Follow up with your regular doctor and remember to drink a lot of water." On following up with my doctor (or the PA in her office), I learned that my stone was 7 mm. A stone this size is considered too large to pass on its own. I also got started again on blood pressure medication.
So, armed with this new knowledge, I did the worst thing possible. I went online to see if I could get any kind of advice on how to deal with this. The doctors had told me that I shouldn't have pain, but here I was, having it. The only positive was that I was now drinking more water and less soda. I went on like this for two more months, until the beginning of August. The pain came back, even worse than before. I left work early three straight days. My bosses were very understanding. I went to the ER again, this time my directionally challenged sister braved the drive and took me. Again, they took blood and urine. My urine had blood in it this time (known medically as gross hematuria) and my pain was worse than last time. Again, the doctor wanted a CT, bu non-contrast this time. This was after the obligatory four-hour wait. After looking at my scan, the doctor I saw pronounced the stone "unchanged" based on a text from the radiologist who read my scan. "What's causing the pain then?" I asked. "It's non-obstructing so I really don't know." At this point, since this doctor admitted that she didn't know what was causing my pain, she would have consulted the urologist on-call or some other doctor. But she didn't. Again, I got nothing for my pain. I began to feel like I was going crazy. Again, I was told to follow up with my doctor. I had to suppress the urge to say "Yeah, thanks for nothing." I had to call in the next day because I was scheduled to be at work at 10:30 and I didn't get home from the hospital until 4:30. I spent most of the day not only in pain, but I was having anxiety too. The anxiety was from the gnawing feeling that perhaps my symptoms were psychosomatic. I went to work the next day, but again had to leave early. I asked my front end supervisor to take me off the schedule until I could figure out what was going on. I spoke honestly to my manager about what was going on, my frustration and fear of not knowing what was wrong. I told him that I wanted to go through proper channels and didn't want to put my job in jeopardy. He told me to do what I had to do and keep them in the loop.
My pain and anxiety worsened overnight, even after talking to my boss and his assurance that my job wasn't at risk (which I thought was where my anxiety was coming from). The next day, my sister took me to the local prompt care, which was located in the same office as my regular doctor. The nurse practitioner that I saw had given me more understanding than any of the doctors I'd seen. She looked at the report on my stone and told me, contrary to what I had been told in the ER, that it was now 1.1 cm. So why did that ER doctor tell me that it was "unchanged" when it was now 4 mm larger? She apologized for how badly I had been treated and got me a prescription for pain meds and also nausea meds, which can also be good for anxiety. She was the first one to tell me that large stones can and do cause pain, even when they're not blocking anything. "Those doctors never once acknowledged that I was in pain," I told her. "They never gave me anything for pain or nausea. They never told me anything I could do in the meantime." She nodded understandingly. "Kidney stones, especially large ones, are unpredictable. Large ones require treatment, whether they're in the ureter or not. ER doctors don't really like to be the ones to get that ball rolling. So they say to follow up with your doctor." So I at last had some pain meds and also something for the nausea that the pain brings with it. I was told to call my urologist. Since I didn't have one, I called the office of the only urologist I knew of--the one who did a cystoscopy on my in 2013. Unfortunately, he was booked solid until late September. It was early August. I couldn't wait that long. So I asked them if there was any place I could get in sooner. The lady on the other end of the phone gave me the name of a doctor who worked in another of their offices. I managed to get an appointment, but I had to wait nine days. I was disappointed to have to wait nine days, but compared to waiting six weeks, this was doable.
I wasn't too sure about driving to another city to see this urologist. I don't drive and so I'm always dependent on someone else for a ride. My friend (the same one who had taken me to the ER the first time) took me. The office was located in that city's local hospital, which had a park across the street. My friend took her granddaughter to the park to play while I saw the doctor. His waiting room was freezing. I had to wait a half hour after my appointed time because of some kind of thing that had come up. Well, I totally understood that. I know that surgeons sometimes have emergency cases. When I finally met the doctor, I liked him. He asked me questions about my symptoms and listened while I answered them. "Your stone is a very large stone, so it can't just sit there in your kidney. It could cause major problems down the road if it's not taken care of. It's only gonna get bigger if we ignore it." He told me about ESWL, extracorporeal shock wave lithotripsy. They would use shock waves to break the stone into much smaller fragments that can be passed easily, most times without too much discomfort. There was one requirement for me to have this done. My stone had to be viewable on an X-ray. This is because they use X-rays to help triangulate where the shock waves should hit the stone. So he had me get a KUB X-ray before I left. KUB stands for kidney, ureters and bladder. The film shows these structures clearly and, since most stones are calcium stones, they show up as well. I was told that, as soon as the doctor had seen my X-ray, I would be called. I had seen videos on Youtube where people had talked about their experiences with lithotripsy and a few had said it had failed on them because there was too much body fat between the stone and the shock waves. I assumed that if I was too fat to have the procedure, someone would have told me. Well, long story short, I had to call them nearly every day to see if the doctor had seen my X-ray. I had my appointment with the doctor on a Wednesday and it was the following Monday before I was given the word. My stone showed up on the KUB film so lithotripsy was scheduled for September 5. By that time, I had been in pain for three months.
On the day my surgery was scheduled, I showed up to the hospital at 7:30 am. My cousin, my sweet, awesome cousin, took me. She knew that I would be having general anesthesia and would not be able to take myself home, even if I could drive. The nigh before, I had had to get myself ready. I wasn't allowed to have solid food past six o'clock. I could only have broth or clear liquid foods and nothing after midnight. I had to use a Dulcolax suppository that evening. In the old days, hospitals gave enemas before abdominal surgery. These days, I think that pre-surgery enemas have fallen out of favor. I do remember having one before my hysterectomy in 1993. I understand the need to not have a bunch of fecal matter sitting between the shock waves and my stone. I also had to take two Gas-X tablets at bedtime. I had to take a shower in antibacterial soap. So I bought some Dial soap for that. Of course, they also said no make up, no jewelry, no valuables bought with me, etc. I was nervous, as I always am before scheduled surgery. My last operation, getting my appendix out, had been an emergency so I hadn't had any time to be scared. The ER nurses and the anestheologist came to talk to me. I also saw my surgeon briefly. He gave me thumbs up and we were ready to roll. I'd heard that lithotripsy routinely takes about 45 minutes. When I finally woke up in the recovery room, I looked at the clock. It was about an hour and a half since I went into surgery. The nurse noted I was awake and looking around. "Hi, Cheryl. Honey, how are you feeling? How's your pain?" I managed to tell her I was in some pain and she had something (probably Fentanyl or Delaudid) pushed into my IV. I can remember times when, if you had general anesthesia, you would be staying overnight in the hospital. Now, because of advances, people can be sent home the same day. I woke up quickly. They gave me some juice and a packet of Teddy Grahams as a snack once they were sure I was awake enough. My cousin helped me get dressed. I was surprised that I had no nausea. I didn't even have any bruising at the site where the lithotripsy was done. I went home in minimal pain.
That was NOT the case when I woke up from a nap that evening. The pain was the worst I could ever remember having. I'd had an internal bleed after my stent was placed that put me in the ICU that I didn't remember being that intense. I didn't remember my actual heart attack hurting this bad. I called my cousin and told her I had better go back to the hospital because I was going to die if I didn't. I made the decision to go to the hospital where I'd had my surgery rather than the one I had gone to the other times (the ones had been no help). It took her some time to get there and by the time she arrived, I was crying. Anyone who's familiar with me from the scene knows that I have an extremely high pain tolerance. But this was more than I could stand. By the time we pulled up to the Emergency entrance, I could hardly walk and my cousin had to get a wheelchair for me. As soon as they realized that I had had lithotripsy that morning, they seemed to know exactly what to do. The nurse started an IV and got pain medication into me quickly. I also got nausea meds. The doctor probably suspected what my problem was from the start. He ordered another CT scan, which showed two fragments stuck in my ureter. The doctor explained to me that this happens a lot with lithotripsy. There's really no way to predict when or why it will happen. So I asked him what do we do next? He said "Well, we're going to admit you at least overnight for observation. In the morning, we'll call your doctor and see what he wants to do."
They kept the pain meds coming while I waited to be admitted. My cousin, who had prayed with me and stayed by my side, decided to go home once they had made the decision to admit me. She knew I was in good hands. I had been in so much pain. Pain serves a purpose, to let you know that something isn't right. Once you discover what's causing it, it's no longer necessary to remain in pain. It was about 3:30 in the morning when I finally got up to a room. They continued to monitor my fluids because I couldn't have anything by mouth, not even ice chips, because the odds were good that I was looking at another surgery. It was in this atmosphere--after months of trying to get rid of this stone--that I decided to name it Roy, after the boyfriend I had spent months trying to get rid of. Don't ask me why, after all these years, Roy came to my mind. I was definitely drugged up on pain meds and probably not in my right mind. But I remembered what a pain he had been and how much effort it had taken to get him to leave me alone. Even after we'd "broken up", he continued to call me. There was no social media back then. Calling someone or going to their house was about the only way to talk to someone. This stubborn stone, that I had been dealing with for months, reminded me of that needy boyfriend who wouldn't go away.
At about 7:30, my case manager came into my room to let me know I was going to have surgery at about noon. She smiled nicely and assured me that my surgeon was well aware of what had happened. A little while later, my surgeon came to see me. He told me he had been really pleased with how my lithotripsy had gone. He was really happy with how the stone had broken apart. But doctors really have no way of knowing if there are any large fragments that could be hanging around waiting to cause trouble later. I've heard that doctors often do a scan after lithotripsy to see if the patient is stone free (fragments, no matter how large, aren't considered stones). I was unsure if this had happened to me. But I began to doubt it. The stone fragments that had moved into my ureter and blocked it must have moved really fast. So he explained the procedure he was going to do that would remove the stone fragments and make me stone free. He warned me that a scope would be going up my ureter to get the fragments. "This is an invasive procedure and there are potential risks." So he outlined the risks without really telling me what he was actually going to do. So, for the second straight day, I was put under general anesthesia and the surgeon used a scope to grab the fragments. I also had to have a stent placed in my ureter. I was more afraid of this than the surgery because I had seen people on their Youtube videos tell about how uncomfortable they were. I woke up in the recovery room, again looking at the clock to see what time it was. "Cheryl, honey, come on. Wake up." It was the same nurse who's voice I'd heard the previous day. "Are you having any pain or nausea?" I nodded "yes" to both. She mercifully pushed pain and nausea meds through my IV. I'm always happy when the pain goes away. But I was starting to dislike the feeling of being drugged up. The drowsy, tired and foggy feeling was almost as bad as the pain. They got me back to my room and back into bed. They wanted me to get up and walk almost as soon as the anesthesia wore off. I was happy for the activity, but walking caused the stent to irritate my bladder. So then it was back to the pain meds. I hate hospitals. Let me clarify that. I don't hate that hospitals exist. I'm glad there's a place where people can get the care they need. What I hate about hospitals is when I actually have to be in one. They aren't good places to get rest. Someone is always coming into your room, whether you're trying to sleep or not. They need to draw blood or they need to get your vitals or they need to empty the garbage.
Throughout that day, I began to feel a little bit better. I was hoping I would be able to go home later, but it became apparent that I was going to have to stay another night. That depressed me a bit. I began to wonder if I was ever going to be back to normal again. Was there ever going to be a time where I acted like I used to? Had the pain meds completely made that impossible? Was my brain chemistry permanently altered? Once I got home, this feeling got worse. I was on so many drugs--tamsulosin (Flomax), hydrocodone, phenazopyridine (an orange dye that, when it enters the bladder in he urine, calms the muscles and makes that icky urgency go away), cipro, and my usual meds like Atenolol, which I take for my blood pressure. I started to feel so tired. I read the patient information on the Flomax and one of the side effects is drowsiness. I could hardly stay awake. I realize that I was healing up from surgery and that causes tiredness. So I guess what I was feeling was the normal side effects of the drugs and healing from surgery.
I see my new surgeon tomorrow. The doctor who did my two other procedures is moving (or already has moved) to Texas so all of his patients were handed off to other doctors. I hope I can have this stent out and get off these pain killers so I can start to have a clear head. I've increased my water, trying to flush the medication out. Hopefully, this will help. So the Saga of Roy isn't over yet. When I was calling to get an appointment with this new doctor, a nurse in the office told me I was going to have to have another procedure done in "four to six weeks". She didn't say what that procedure was. I just know I want to get back to work and put Roy behind me.