Warning, this post includes frank discussion of personal medical issues, including things that could make some uncomfortable. This was a lot of pain on my part and I don’t mind sharing it, but it IS graphic and I haven’t censored much. I refrain from naming a certain organ, but that’s only because I don’t want to. I’ll put most of this behind a cut tag so that those of you who don’t want to read all of it, don’t have to. But this is the complete story of the last several months for me, and why I’ve been missing for the most part.
Okay, I’ve promised this to multiple people and now I’m finally ready to put the story out there.
As some know, I was in the hospital recently. It was a combination of things, but here’s the story from start to finish.
Back in mid-August, I started having pain in my bladder and urethra. Because it was localized there, I thought I had thrown a kidney stone. I drank a lot of extra liquids, complained about it on Tumblr and waited for it to go away. I didn’t go to the doctor because I knew they would just be “ok, drink fluids, take ibuprofen and rest till it goes away, which it will.” I know enough medical stuff to be dangerous, and I couldn’t see paying the ER copay just to be told what I figured out on my own.
A week later, the pain had gone away, no stone. I was a bit confused because I never developed other symptoms, fever and chills, and then it just vanished. So I was thinking, “Good. Gone without the excruciating pain of passing the stone. Well done.”
Then I got a pain in my right side kidney. How did I know it was my kidney? It was to the right of my spine and up near the ribcage in my back. My father had surgery there once upon a time, and I do things like watch medical shows. So I knew the kidney was there. So now I’m thinking “okay, this is something more serious.” I made an appointment to go to the doctor.
As a walk-in at the clinic at the hospital we use, I wasn’t able to get my regular doctor. But I did see someone. This was my first time to the doctor. I went over all my problems, the pain, the pain in the bladder, stressed that it went away without anything, also seeing blood and discharge in my urine. The internist was pretty concerned, until I told her that I needed refills of my meds. At that point she passed the ENTIRE thing off to my regular doctor and had me make a follow up appointment to see my Endocrinologist in five days. She gave me one prescription out of the ten I needed and told me to go home.
So I come back five days later. I see the medical student working with my Endo. She takes all the information, gets me my prescriptions, listens to the litany of problems and does nothing. I get a urine test. Never hear back.
A week later, Mary has to go to the doctor. By coincidence, we get the same medical student as I had when I went back to the clinic the second time. This is my third trip (at least I count it that way) because the med student gets the results of my urine test on the computer, while doing Mary’s stuff, and tells me that there was blood in the urine.
I have to relate that at this point the pain is really getting bad. Yes, the pain went away from my bladder and kidney, but now it’s come back to the prostate and my urethra again. I’m taking two Tramadol a day to keep the pain bearable so I can get through my work day. It’s not fun as I sit for 11 hours straight at my job. (I do call center work and I’m working 4 10-hour shifts with a one hour lunch from 7 PM to 6 AM.) Still don’t have any other symptoms except the pain and occasional discharge in my urine, of some sort. I’m not sure what it is, but it’s there.
We go home again. I have another follow up appointment with my Endo at the end of the month (this is the beginning of October).
Mary isn’t happy and neither am I. I wind up going back into the doctor because of the pain two days later, to hopefully see my Endo again. Nothing doing. I see a THIRD doctor, get told that yes, there is something wrong. I’m given a prescription for some antibiotics and something to help me go to the bathroom and sent home, again. This time Mary was with me and she wasn’t very happy. Now it’s to the point where I’m having so much pain I’m calling into work and not going in.
(Let me explain a bit. I’m a contractor and if I don’t work, I don’t get paid. I also enjoy the heck out of my work. I love helping people and getting them to the point where they can continue their work, and I love the appreciation they give me when I succeed no matter what. There’s a skit called the “Internet Helpdesk” by Three Dead Trolls in a Baggie. In there he says “There is nothing like the RUSH of correctly configuring someone’s DSL connection even though he’s running Windows 3.11 on a 286 with 4 Megs of RAM baby!” That’s about the size of it.)
At this point I also can’t pee without screaming. I’m taking the leftover hydrocodone that I have from teeth problems, and I’m dipping into the pain meds that were shared with me by concerned relatives. This stuff is the really GOOD stuff and I can’t take it without falling into some sort of trance where I can’t sleep for 10 hours and nothing matters to me. Needless to say I’m only taking this in extremes since I do need to be at work and being blissed out and loopy will get me fired. I can’t sleep unless I’m taking things that make me sleep (like over the counter sleep-aids or Benadryl) since the hydrocodone isn’t helping at all.
I go two weeks like this and I’m not getting better. I was in contact with my Endo again, and it was because of a mix up with the medication I got when I went in there the second time. I also get told that there’s nothing to worry about. I schedule another appointment and go back in about two days after the appointment where I’m given the antibiotics. I get test results, give more urine, have my temp and pressure checked, and sent home. This was a follow up from the Second appointment.
Two weeks pass from this point. I’m told that the pain will start to get better. I’m faithfully taking the antibiotics every day, along with the Flomax, to help me urinate. It doesn’t get better, in fact it gets worse. Finally I give in and go to the Emergency Room one weekend. Mary was with me and damned near frantic, but she had to go to work too.
(During this time she was also down with her seasonal bronchitis and so I was working hard not to get sick and to take care of her. She was out of her work for two weeks, and I was sole income during that time.)
I waited four hours in the exam room. Nothing happened. I had to go to the bathroom, stumped along to the hallway, urinated in the bathroom, went back to my room. About 10 minutes later, a nurse came in and we talked. She gave me a pain pill. About a half hour later, a doctor FINALLY came in. I rattle off what had happened, he cut me off. He asked what was wrong NOW, I told him “pain in the area of my prostate and I feel like I have to poop all the time. Plus, when I do go, my body clenches like it’s trying to force something out of my body, and that cuts off the urine, which makes it all hurt MORE. Just lying here hurts.” He pulls gloves on, checks up my anus. “Oh, you have an inflamed prostate.”
I wait for him to continue. He looks at me. I look at him. Finally, after about 30 seconds, I look him in the eye and say “DUH.” at which point he gets brusque and prescribes ANOTHER antibiotic and ANOTHER urination aid, refers me to the Urologist (who is only at the hospital once a month) and sends me home.
Finally got a prostate exam, which I begged for from the third trip to the clinic, when they didn’t do it. I get the scripts, go home and start taking THOSE meds.
I have a follow up with my Endo. I go to it, turn in my old antibiotics and the urination aid from the second trip. I am assured that I’m going to be fine, blood is taken and I’m given a flu shot. The whole saga is gone over again, I complain about pain, given a prescription for some more hydrocodone (I was up to 10 Tramadol in one 24 hour period without the pain lessening at all, and the hydrocodone was nearly gone, I think I had one pill left). Give more pain meds and sent back home to keep the appointment with my Urologist.
Seven days later, I can’t take it anymore. I had gone into work on Sunday, and at 1 AM Monday Morning, I call Mary. “Come get me now.” is all I say to her. She had picked me up 15 minutes later, which considering we live 20 minutes away by the speed limit is near-teleportation. I’m pacing and hurting and in worlds of pain I never knew existed. I had a discharge sitting up from my bed at one point (because I rolled over the area of the prostate in the process of getting up) and there’s now blood in the stuff that comes out during sex. I’m not doing well. I tell her we are going to the ER, and she doesn’t argue.
While waiting to see the doctor I throw a 103.6 degree fever. I was shaking so badly that I couldn’t keep my teeth from chattering, and the gurney was shaking. I’m covered with three hospital blankets and both coats that we had with us, and I’m still shaking.
Four AM comes and the doctor finally sees us. He won’t do an exam since it’s possible that his poking around will dislodge something and he’s scared of that. They admit me. Six AM I’m finally taken to my room. From there, the sequence of events are a bit messed up, but here’s what I remember (in no particular order):
- Getting an MRI
- Getting an ultrasound of my bladder/prostate, after drinking a lot
- Going to the bathroom before the ultrasound
- Having the tech say “the bladder is still full” and not being able to find my prostate.
- Five sets of doctors coming in and out, hearing what I have to say.
- The urologist showing up and talking to me.
- Getting catheterized (never again)
- Emergency surgery and being wheeled into the OR
- Waking up in the ICU
- Being told that I’m going to have the catheter in for two weeks
- Mary sleeping in a chair in the ICU
- Drug-induced haze
- Urine backing up into my bladder from the cath bag
- LOTS of IV fluids, along with antibiotics (the never ending IV bag)
The time frame for this? The week of Halloween. I think it was Oct 29 to Nov 2 or so.
I’m told that during this time, Mary was a champ. She talked to the nurses, I threw up three times, I had an enema for the MRI and wound up soiling myself several times (couldn’t get to the toilet) and them having to change sheets. I was a mess.
Apparently they went in through the catheter and cut out part of my prostate. I’m under the impression that it was about half of it gone, Mary says less. I’ll find out when I have my follow up coming up in a couple days.
After an additional pain-med filled day in the ICU, apparently I’m fine enough to go to a regular room. This is the longest three days of my life. The food is all liquids, I’m given insulin for my diabetes. I’m awakened by the IV pole at least once every hour, I have a BP cuff that inflates at random times, Mary is trying to sleep the sleep of the exhausted in another chair, I’m trying to just sleep. I have tubes coming out of my groin, out of my arm, and I have this burning sensation every time they try to do an IV Potassium drip, it’s burning me internally. They move the IV, it still burns me and to top it all off, they go through scar tissue to get it in, and THAT fucking hurts. They are taking blood samples, they are taking blood cultures, they are taking urine volume, temp, blood sugar sticks, just about every indignity I can think of. I am not having anything solid come out of me due to the enema and the liquids in my diet, and I can barely move. I can’t bend my arm or the IV gets cut off and an alarm goes off.
I have to stress that the PEOPLE were wonderful. They put up with my complaining and whining well, and I tried hard not to make any demands on them since they had more than just me to take care of.
Finally, 5 days after being admitted I’m discharged. They pulled the catheter out. I thought it hurt when the damned thing went in with a load of Demerol in me, but no, the coming out, with a load of Morphine in me was nearly as bad. I came off the bed twice, once in and once out. I literally screamed. I also couldn’t control myself, I had to go to the bathroom and left a trail from the bed to the toilet. I wanted to die of embarrassment.
There were med students (first days in with actual patients) on Thursday and Friday. Talk about cute as hell. It was funny and I would have laughed, but I remember when I was a noob at something, and how embarrassed I’d have been if it were me. They were good though. Even though I had five days growth of beard, and everyone called me by my birth name first (since it was what was on the medical records due to the insurance company insisting on my driver’s license showing Joy on it before they modify their records, and I owe a fine of $149 to get it reinstated) they did a good job of calling me “her, she” and “Joy” when corrected by Mary or myself. There were inevitable slips (especially since I couldn’t wear my wig or do my makeup) but all in all, the people factor was as good as it could get under the circumstances. Rounds of the General Med doctor had about a dozen students with him, and the really baby students would be assigned one or two patients to look after (do things like fetch and carry, hand things to, bed-baths and so on).
FINALLY got out of there. Took me two weeks and another round of antibiotic pills to start getting my bladder function back, and then I went back for another test and a checkup. I was told that it was to be an MRI of my bladder/prostate again. What it turned out to be was ANOTHER catheter to check the urinary tract, ANOTHER enema, and ANOTHER MRI with contrast dye that I should have taken some barium for the previous night. Didn’t get those instructions till the NEXT DAY. Damned mail.
I tell you I was ready to run from the hospital. The nurse and Mary were both set to tackle me when I did. I finally got to a point where it was “GET IT THE FUCK OVER WITH” and I had it done. They used a smaller catheter this time, and she went in slowly, not all at once. Still fucking hurt going in and out. The damned enema wasn’t as much as before, and once I got to a toilet I got everything out, which was a relief.
Apparently I’m allergic to the numbing gel they use for the catheter, because the entire urethra was inflamed, hurting, itchy and just generally miserable for about two weeks. Both times.
Now, things are back to normal. I’m off the pain meds, and I am trying not to take them at all, but it’s one of those cases of “if I need them, damned straight I’m taking it”. I have most of my function back, but I can’t wait to get to the bathroom anymore, if I don’t go when my brain FIRST realizes it, I’m going to be embarrassed. The pain is gone, which is good. I’m going to be back at the doctor in two days for a follow up. Then I get a lot of answers.
Apparently I had a staph infection in my prostate. That’s what caused all this. The urologist and the Intern who was with the urologist were TERRIFIED that it would go septic, since it went so long. They were shocked that no one did anything and that it got that bad. I think they were scared that if they didn’t cure me RIGHT THEN that I would die, and then there’s a neglect malpractice lawsuit coming. Which it would have been. Heck, we were kicking around the idea of suing anyhow just because they kept sending me home. If I had gotten any worse, there would have been a lawsuit.
I’m better now, it’s just hard since both Mary and I were effectively out of work for two weeks. One week in the hospital, one week at home with her taking care of me. That’s put our precarious financial situation into the toilet, and we are clawing our way out of it. But that’s how things stand right now.
I’m sending this to my family and posting it to Daven’s Journal, which will repost to Tumblr and Dreamwith/Livejournal so that my friends can keep abreast of what is happening in my life. I’ll put suitable warnings on it for frank medical discussion and so on.
So that’s it. Hope you all have a good time.