Totally Awful Day

I just got home for the night at 10:30pm. I will try and give the full description of how today went, and hopefully people in the same situation can learn from it---like I learned from this girl Tammy's blog: www.cystinuriablog.com. I honestly have lost some respect for doctors because it seems at every turn, since the beginning of my flank pain in 2008, I have been doubted and dismissed.

When I was pregnant with Lucas and had this pain, my OBGYN said to go to my primary dr. The primary doctor says "I don't feel comfortable dealing with you since you're pregnant--go to your OBGYN."

Then the pain got so bad further into the pregnancy and nauseating they did an ultrasound to find my right kidney was hydronephrotic most-likely from a stone--that I don't think ever passed.

The pain came and went in my 2nd pregnancy.

Then this month, 4 months after giving birth to Olivia, my flank pain was worse than ever before. At my initial visit with my general doctor,he was going to send me home to 'drink more water'. I pleaded enough for him to run what he obviously thought unnecessary tests, urinalysis and a CT scan. The scan revealed 4 stones, the biggest at that time was 4 mm in my right kidney. The urinalysis showed "occult blood and protein" indicative of what? Kidney problems.

I then went to a urologist who tried to tell me "stones don't cause that kind of pain while still in your kidneys; this has to be your muscles." A week later, I am pissing blood and plead with them to do another CT scan---after which the urologist comes in saying, "Well, you must have a high pain tolerance! you got a 7 mm stone already in your ureter." Now look where I'm at.

Well, I am sorry but I don't have any pictures of the day---yes, it was that bad that I wasn't thinking of the camera lol. This morning John dropped me off at Sentara Hospital, where I was taken to a pre-op triage room and asked health history questions. They had me take off EVERYTHING, down to my wedding rings (good thing I lost some weight--those rings wouldve never come off!...). They tested me for pregnancy--all clear this time. They then pushed me down to get an xray to make sure the stone hadn't moved/passed. When the urologist came in, I told him the xray shows little to no movement of the stone--he says "Oh alright doctor." Yeah, I may irritate him, but how would you feel in my position? I feel like I am the only one I can rely on for answers.

They administered an I.V. with fluids in my hand. As they pushed me in the bed to the operating room, I was shaking with fear. They were all re-assuring of course. I entered the room with the urologist, the anethesiologist, and 2 nurses. They had a CD player going and asked me if the music was okay....at this point I wasn't in too bad of pain so I was honest.."Is it Bruce Springsteen? Yuck..." they asked if Elvis would be better and I said of course.

They transferred me onto the table, tried to warm me with blankets, strapped my hands outward, and then I see the anesthesiologist upside down in my face telling me "you're gonna feel a.." BLACKOUT.

Literally the next thing I know, I wake up in the recovery room. It had been 2 hours and I didn't even remember anything. I had to pee but could barely speak. Apparently the urologist talked to me and told me how it went--i don't remember that part at all. They did break up the boulder and get most of it out, but they put in a "double J stent" curling inside my kidney, down to curl in my bladder. I asked for pyridium (reccommended by the kidney blog girl Tammy-thanks!)

I was in and out of sleep for a few hours. They wheeled me back to my pre-op room. I had to pee urgently so the nurse helped me to the bathroom with my fluid IV and she gave me the phone to ask the urologist final questions. I am trying to talk to him, but the pain of that first burst of blood-filled urine is so bad I had to stop. Once that pain subsides a little, I get an extra surpise---horrid flank pain in my right kidney. I ask him and he of course says it's normal because whenever my bladder is flexed, it will force pee back through the stent in my kidney...They gave me more percocet, and pyridium...which didn't alleviate the kidney pain when I peed AT ALL. I was crying because I was not only burning upon urination, but my nausea was very intense, and then everytime I went, I knew to expect a delayed debilitating kidney-contracting pain.

John came to pick me up but there was still a lot to go through and sign before discharge. This stent is horrible and I can' wait to get it out. He says MAYBE wednesday it will come out because it still has to flush out the stone fragments in my kidney. But I continued to take my medication, ate a little, drank water, and since the stent is in my urethra, I always have the urge to pee. I peed about every 45 minutes, though I dreaded it. The pain in my kidney was so bad I called the urologist after hours service. The dr on call (a different one) called me back. I explained the pain, and he said "well, I guess you're one of the few who have bad kidney reflux---where the urine is pushed back into the kidney. It was to the point where I had to pee in spurts just to endure the pain, which kept building. He said to go to the ER and have them put in a "foley catheter" and he prescribed me drugs for 'bladder spasms.' The Foley catheter is basically just a tube with a balloon they stick in my peehole, with a thick tube to drain my pee continually (without pushing) into a bag. I was angry that MY urologist didn't tell me about this, and again expected me to just walk it off.

I had to wait for John to come home because we unfortunately had an appt for the dogs today to get cleared for take off next week when they fly to CA. I was so afraid of that pain I held in my pee.

We got to the ER and they give me a gown and said they need a urine sample...I said "i am holding it until you get the catheter and bag. The pain is going to be way too intense since I held it so long.

I paced the small room (which helped the urge not to be so strong) for a good ten minutes. They put an IV in my right arm, which was dried up of blood. They found a better vein in my left arm and administered fluids and nausea meds. Another nurse came in to put the cath bag in...now, I already have a stent in, and this tube was as the nurse said, "sonic straw size" i.e. big. With a balloon filled with saline to hold it in. The burning was so intense and never-ending! My bloody urine quickly filled up to 32 ounces. I cried really bad. John tried to comfort me, but I was just so worn out and had realized that all I have been doing is trading one horrid pain for another one. I told them if this is what it's going to be like for the next 5 days, I would rather have the intense, but temporary kidney pain. I couldn't move.

The doctor at the ER had never seen anyone with this 'kidney reflux' before. She gave me dilaudid in my IV---thats the hospital grade stuff I needed. John talked to me while I was going to sleep constantly. Pain significantly reduced. I realized I wasn't going to be discharged any time soon so I told John go ahead and go home to allow mom to go home from babysitting (thank you mom & Susan). John left and gave lucas a bath and put him to bed.

The actual dr finally came in again and I told her it's not worth it. She said we would try it out for 24 hours, and see if it gets better or is at least controllable with painkillers, whereas the kidney pain wasn't. I agreed to it and they changed the huge over night pee bag, to a small one strapped to my thigh. I do have to pay attention to keeping the bag lower than my bladder or the urine will go back in me...you'd think they'd make them so there is only one way for fluid to go...

John came to get me and brought Olivia (left the monitor with Susan since Lucas was going to sleep). He helped me get dressed sorta over this bag and tube. On the way to pick me up he went to go pick up those 'bladder spasm' meds the urologist called in to the CVS earlier. Well, the pharmacy was closed. I buzzed my nurse to see if she could possibly get a dr to call it in to one of the 24 hr ones, but the dr said I should be able to make it through the night with one dilaudid pill, and pick up the Rx tomorrow morning. I realized we don't have any 24 hr pharmacies in Williamsburg anyway so I am home now. Eating a little so i can take my antibiotic, and percocet, and pyridium. Now I gotta dump my pee, and replace the bag with the overnight one, which has to be lower than my bladder, but not on the floor...Olivia is having a whiney night tonight, but thank God John is home to take care of me.

On one hand, I am glad that I didn't have to wait for the 7 mm stone to get stuck in the fibrous and narrow pathway to the bladder, but today's pain was unexpectedly horrible. I hope I can get through the night but I know the hospital grade stuff is wearing off now. What a great memorial day weekend. thank you to all of you who kept me in your prayers. I hope this ordeal is ended with the stent removal Wednesday. But then again, we already know I have at least a few more stones in each kidney. Hopefully the urologist will have received my 24 hr urine collection results, or were able to directly test the stone they got. I would like to know what's causing them and adjusting my diet accordingly. I wouldn't wish this on anyone.