Wednesday, February 24, 2010

Thank you for being a friend (Golden Girls)

The ER trip was pretty uneventful. The doctors checked everything that they could (still can't do much testing on my bladder yet) - bloodwork, urinalysis, xrays, ultrasound - and things looked fine. My antibiotics are working properly, and my white blood cell count is normal.

The lovely Chantel kept me company and snuck ice to me when the nurses told me I couldn't have any in case something showed up on my xrays. She made sure I had warm blankets, and even climbed up onto a chair that was less than sturdy in order to fix the crazy tv.

I'm so very glad that she was here. Love you, and I love everybody that made it possible for her to be here. I know for a fact that I wouldn't have gotten through the first week without any of you:



Emmie (@EmmieJ)
Jodee (@Leprakans)
Andrea (@Sweet_Life)
Meghan (@AMomTwoBoys)
Colleen (@Messpotential)
Maura (@moburns67)
Tricia (@irishsamom)
Angelia (@MommyNeedsMeds)

and last but not least, Nik (@nakeva) for being so supportive and holding down the fort while Chantel (@KnowMeLoveMe) was here taking care of me.




Chan (unfortunately) had to get back to her family and life and went home on Monday. Right before she left, I was feeling guilty for keeping the dogs locked up in their crates, so decided to let them outside for a bit. The plan was for me to open the crate doors, and Chan would man the side house door and watch the dogs.

Stupid me.

I let Stella out and she immediately jumped at me and got caught up in my catheter line and pulled it down down down. All Chantel heard was one loud "Ahhhhhhhhhhhhh!"
She thought that I had fallen, but no, my cath tube was yanked. Hard.

I decided that if it still hurt later, I would go to the hospital to have it checked.
By Monday night, I noticed that 1) my urine was WAY to red to be ok, and 2) the amount of urine going into my bag was not nearly enough.

So, Tuesday morning, I had to go to Urgicare and have them uncath and recath me. That makes it a grand total of 9 times (i think) in one week. That has to be some kind of record. Right?

The only good thing about having to be re-cathed is that I noticed that it was not nearly as excruciating as the last time(s) that I had it done. That makes me happy, because my urethra/bladder are healing. Thank moonpie.

After I was cathed, tho, the nurse told me that the cath was made of latex, and that I would have to go see my urologist immediately to have it changed.

*sigh*

I put off calling the Dr. today. I just wanted one day to rest. One day at home. No more hospitals. No more catheters.

I think that if I have to go see the urologist tomorrow, I am going to ask her to let me try peeing in between caths. If I can? Well, maybe I can just keep the cath out, and learn how to self-cath if/when I need it.

Who EVER would have thought those words would ever come out of my mouth/fingers?

Self-cath.

Right now though? It's looking pretty pretty pretty.....pretty good.

Saturday, February 20, 2010

Update

***** update *****

I woke up this morning in even more pain than usual. Also felt sick and hot, so I took my temp, only to find out that I had a fever of 100.7

This afternoon, my right kidney started to hurt. Now it hurts BADLY and constantly.

I finally called the nurse line to the cleve clinic, and was told the inevitable: go to the ER. And don't wait longer than 4 hours to go. Apparently it is a very bad sign that I have a fever and what feels like a kidney infection while being on antibiotics. 3.5 days of antibiotics.

I so don't want to go. Yesterday was the first day that I got to stay at home. I just want to get a break and relax in my own bed.

At least Chan can go with me to the ER so Keith can stay home with sick baby girl.
Thank goodness she is here. I don't believe in much more than fate or coincidence, but something somewhere worked things out so that she could be here to take care of me, and just in the nick of time.


***** end update *****


Yesterday, I finally got Keith to go down "there" and clean me up and inspect the damage. I have been having an awful amount of pain in my perineum, and I asked him to take a look.
After wiping me with some baby wipes, he took a look. What he found there was shocking, even to me. The area between my vagina and rectum? Is split in half. I have an open wound. It's like an episiotomy that has not been stitched up.

So, I googled the rectocele procedure that the doctors did, and holy hell...I had no idea. Go ahead. Take a look. No wonder I have been too swollen to pee. No wonder I hurt like hell down there. I cannot believe my surgeons never explained what they were going to be doing to me. I was totally unprepared for this.

But still....it doesn't explain the split in my perineum. I'm not quite sure who to ask about this. My surgeons aren't returning my phone calls. Nobody will answer my questions. I don't know if this is something to ask my new urologist about.

I'm just confused.

For now, I will keep the wound clean and put neosporin on it.
My hysterectomy seems to be healing up pretty well. I just have an ungodly amount of pain in my perineum and bladder. I woke up this morning unable to move from the pain.
I hope this goes away before I run out of pain meds.

Getting depressed by this stuff. I'm so glad Keith has been home with me and Chloe is here to give me a million hugs.

Chantel is coming out today to stay with us for a few days. We really need some help around the house, since I'm totally useless right now. Keith also needs help caring for Chloe and I bc she is sick, too. =(

Poor girl. I'm hoping things look up soon. Very soon.

Thursday, February 18, 2010

Round 2

Thanks to all of you who have been leaving me comments, sending me your good vibes, wishes, and prayers. It means so much to me to know that I am in all of your thoughts.

So, here is my update for the day.

Today I went to the follow-up appointment with the surgeons who performed the hysterectomy. I was checked in by a nurse, and then put into an exam room. About 15 minutes later, the same nurse came back in and said that she was going to take my catheter out. Neither surgeon came in to see me. They had no idea that I had spent the previous day in the ER of a different hospital. They had no idea that I was suffering from a bladder infection and even more pain. They didn't even bother to ask how I was doing.
I told the nurse that I wanted to speak with the doctor before we did anything. She moved me to a different room, and after some time, the reconstructive surgeon came in to see me. I explained my trip to the ER, my pain, and my concerns about being able to go to the bathroom after the catheter came out. The doctor responded that he wished I hadn't gone to the ER, b/c the ER doctors are not specialists, and they have no idea when it comes to catheters, raised white blood cell counts in urine, and the resulting bladder spasms. I declined to point out that I first called his office to let them know what was going on BEFORE the trip to the ER, but nobody called me back. He said that I did not in fact have an infection. That the pos result was only pos because I had a catheter in me, and that causes infection-like results. To put it mildly, I did not believe him, nor did I like how he was speaking to me. I went to the ER because I was in horrible pain. What else was I supposed to do? The dr said that he was going to check into all the problems and errors made at the hospital, and that he was sorry I had to go through that. My OB was in the room the entire time, and had very little to say. He looked sheepish and uncomfortable. I think he felt bad, but didn't know quite what to say. The other dr. was more of the PR guy, and seemed mostly interested in covering the hospital's ass.
I asked what would happen if the cath was removed and I couldn't pee, and he said that they would reverse cath me first, and make sure I could expel the fluid before they sent me home. I was told that the chance of me not being able to go after that was slim to none, but if it happened, I was to go to the ER again to be cathed. (Like I haven't been cathed enough already).
Fluid was put into my bladder, cath was removed, and I was able to urinate. Success!
I was sent on my merry way with instructions to follow up in 6 weeks.

Keith and I headed directly to the Cleve Clinic for my urology appointment that I was instructed to make during my ER visit on Wednesday.
By the time we got there, checked in, and sat down in the waiting room, I was in terrible pain. Again. And I had to pee. I got up from my wheelchair and walked to the bathroom, where I sat for 10 minutes, trying to pee. And I couldn't. Simply taking the cath out had made me swell up again, and I was unable to pass any urine.

I tried once more in the waiting room, and 3 times after I went back to the exam room. After filling the urologist in on everything that had happened since Monday, we decided the best thing to do would be to teach me how to self-cath so that I wouldn't have to go to the ER every time I couldn't void, and I would be able to keep the cath out of me constantly so my bladder and urethra could heal. By the time the teaching nurse made it to our room to instruct me on self-cathing, I REALLY had to pee. I had to pee so badly, I felt sick from the pain. My earlier pain was magnified by 10, at least.

The nurse decided she would cath me to give me relief, and then teach me how to do it myself. She couldn't even pass the cath into me b/c I was so raw, tender, and swollen. And when she tried, I SCREAMED. I'm NOT a sissy or wimp when it comes to pain, but my reaction was involuntary from the sheer pain that I was feeling. It felt like somebody was stabbing me repeatedly and ripping a knife through my vagina. I lost it. The nurse felt awful and ran to get the doctor to cath me herself. She kept apologizing, saying "you poor thing. They really did some major trauma to you with catheters, didn't they?"
When I stopped hyperventilating, the doctor gave the cath a go, and was able to get it in, although I still sobbed and screamed the whole time. It felt like I was being ripped in half. The nurse and doctor were definitely rattled.
The doctor decided that because of all the damage done to me, I would have to keep the cath in for 2 weeks while I gave my body a chance to heal. Only then would she be able to do the tests necessary to determine the level of damage done to me by the metro nurses.

So, That is where I'm at now. More pain meds. An uncomfortable catheter in me that I have to keep for a few more weeks, minimum. After I heal enough, I have to get a cytoscopy done (camera in bladder) and a bunch of other tests to check the function and repairs necessary to get my urinary system back on track.

Till then, I have to rest, keep the catheter clean, and let my body do its job.

There's a hole in the bucket, dear Liza


As you may or may not know, I went in Monday for a hysterectomy and pelvic floor repair, among other things. I was very excited to finally have my year's worth of problems and pain solved. It did not go at all as I had hoped.

This is what happened, give or take a few catheter insertions:

On the way to surgery (i.e. rolling down the hall towards the OR), I was quite chatty with the nurse. She commented in the OR that I must be on some good drugs for being so open and talkative. I stated that I had not yet received anything, and that I was just a talker. The nurses looked to the anesthesiologist in surprise and confusion, as I should have gotten some sedation before being wheeled to the OR. He was embarassed and quickly sputtered "well now she has it" and pushed some painful meds into my iv super fast, which caused my arm to burn.
Shortly after, I got the general anesthesia and was out.

When I woke up 3 hrs later, I had excruciating pain in my bladder. At this point, I was still in the OR, waiting for a room to open in recovery. I felt like I had to pee, but times a million. My bladder was so distended, I was screaming from the pain, begging somebody to help me pee. The new anesthesiologist pushed fentanyl and said that I was cathed, and that my bladder was emptying just fine. I pleaded repeatedly for him or the nurse to help me, but they either ignored me or pushed more fentanyl (which didn't help my bladder) until the fentanyl ran out. After I continued to cry, sob, and beg for relief, the dr got tired of my antics and pushed atavan to "calm me down." My blood pressure dropped to (approx) 70/40 from the shock of the pain I was experiencing.

One hour later, a room in recovery opened up and I was transported.
In recovery, I continued to sob, pleading for help with my bladder. The wonderful nurse there took pity on me, and decided she would check the catheter, thinking maybe the balloon holding it in was in a bad place, hurting me. When she got down to inspect, I heard her exclaim "oh my god!" I asked her what was wrong, and she responded that I didn't want to know. I asked again, and this time she said that she shouldn't even tell me. I told her that I wanted to know, and she informed me that my catheter was in the wrong hole. She later got the story, and told me that the supposed 175 ml of urine I expelled into the bag actually came out of me on the table, and that somebody in OB shoved a cath in me after. Nobody checked to see that it was in the right place, or that I was draining.
My bladder had been filling up the whole time (from iv fluids) and had no way to get out. The nurse re-cathed me and I immediately felt relief from the pressure, but was still in horrible pain from my bladder distention.
This amazing nurse, LeeAnn B., advocated for me, and helped me get pain meds that I needed, such as dilauded and morphine. She also kept an eye on that cath.

I was so upset and in pain at this point, I wanted badly to see my bf, who was waiting for me just a few rooms away. The drs and nurses wouldn't let him come back to see me, since they were trying to figure out this clusterf*ck that had happened to me. Since I was STILL in pain, one resident decided that they must have left packing in me, and proceeded to stick her hand up my vagina (horribly sore from surgery) and root around looking for gauze. She thought she found some, but I'm not certain whether any came out or not. Her answer to my pain was to remove the newly placed urinary catheter, and just let me "go" on my own.
The kind nurse finally got Keith on the phone to talk to me, since I was getting MORE than upset again about not being able to see my family. We spoke for a minute, then they made me hang up.

After about another hour, I was transferred to a room. I once again had horrible pressure and pain in my bladder, and tried to pee on my own. I tried for over 30 minutes, but to no avail. I asked the nurse to straight cath me, and she refused. By now I was desperate for help, since my bladder was overfilled again, and already super sore from the previous distention. I asked for more pain meds, and was refused again. They only gave me at first 1 percocet every two hours, and one "high dose" motrin every alternating hour. This, following major surgery. Amazing. I again asked to be cathed, and was again denied. I was told they didn't want to risk introducing infection. I asked for more pain control, and was again denied. They said that they couldn't give me higher pain meds without keeping me on a monitor, and that the room/floor i was in wasn't equipped for that. I asked to be moved to a new room to be monitored, and was denied.
I complained again about the bladder pain, and was again searched for packing. Finally an angry nurse straight cathed me and drained about 350 ml from my bladder. FTR, my post-prolapse bladder only holds 250-300 ml fluid. I know this from pre-surgical urodynamics testing.

For the next few hours, we did the dance of me asking for more meds, them repeatedly denying me. I was given atavan once again to "calm me down" when I got upset due to my shoddy care.

I hadn't slept all night, and I was in terrible pain. The nurse then came in to let me know I was being discharged. I was surprised (to say the least) because I was still unable to pee on my own. I asked to see my doctor again, and was again denied. I got mad and said that either they were going to page him, or I was going to walk myself up to the OB wing and find him myself to let him know what was going on. They paged him.
In the meantime, I still had to pee and was about to pass out from the pain, so I took it upon myself to go out into the halls to find a dr on rounds, and beg him, crying, to find somebody to help me pee. He looked at me like I was crazy, but he sent somebody. If he hadn't, Keith and I were going to walk out and find another hospital's ER to help me.
When my Dr. came down, he looked very very uncomfortable even talking to me. I think because he finally got wind of everything that had happened up to this point. Previous to this moment, we had an excellent relationship, and I trusted him completely.
He suggested that since I still couldn't pee, that I should be foley cathed, and sent home to let my bladder heal up a bit. Then he left. The nurse joked that she had already cathed me 3 times that morning (ha ha) and inserted the new cath into my bladder. When it was inserted, she blew up the balloon to hold the cath in place, and accidentally overfilled the balloon, popping it in my bladder. It sounded like a gunshot, but coming from inside my body. It was awful. When she tried again, I was in so much pain, Keith had to leave the room because he couldn't handle seeing me like that. It was too upsetting.

And so I was sent home. With a catheter in me, vague instructions on how to empty and change the bag, and some percocet. Keith asked if I needed antibiotics, the nurse replied "well, it isn't written, so I guess not."
We left.


notice the size of the catheter they repeatedly inserted. ouch.




leg bag. no instructions on proper hygiene or care




big overnight collection bag that i have to change myself



Wednesday morning I woke with pain so awful, I didn't want to be awake/alive to deal with it. The pain was all coming from my lower abdomen/bladder/vagina. We immediately went to the cleveland clinic er, where I was treated with amazing care, and was given the news that I had an infection in my bladder. I was given heavy pain meds and a script for Cipro, and told to follow up with my dr on thursday, but also urged to make an appt with cleve clinic urology asap.
It turns out that with all this trauma to my bladder, from the distention to the repeated catheterizations, the inside of my bladder is completely raw, so every time a drop of urine enters the bladder, i am in complete and utter pain.

And I get to stay like this until somebody figures out how to fix it.