Worst Day Ever

[Racer]

I just need to vent,

I was feeling so good, but then I had to go get the catheter out today that was being used to prevent my urinary retention. Thinking the urologist would have some way to help me... "nope, sorry live with it", was basically the response. After having the catheter out for a couple hours it got to the point that I was having SEVERE kidney pain, until my body decided it was time to involuntarily void. Called back to the urologist, who said to go to the ER and get them to check me out.

I had the worst ER visit ever, I had to wait for over two hours in the waiting room, in this severe pain, involuntary void cycle. I finally got back to a room, and desperately needed to clean myself up. But no, the best they would do was to give me a bed pad to lay on, while I was still fully clothed, no sheet, no hospital gown, nothing. Then they said they needed the room, and must place me in the hall. I had no other option then to lay in the busy hall, on a bed pad, and pray I didn't pee myself! Then they want to talk about all my problems, in this hall, in front of everyone! I spent most of the time down the hall in the bathroom, out of fear. All the ups and downs, forced walking around, I blacked out twice, hit the floor, and no one even noticed!

So after all that time, the best they could do was to prescribe me pain meds and tell me to follow up with my doctor. It was the most humiliating thing I ever experienced. I so badly just wanted to get up and leave, but the pain was bad enough that I stayed

[Guest Hanice]

Omg that is so horrible.. I felt emotional reading this. I can't believe you passed out TWICE and no one even saw it. I feel awful for you, I would write that hospital THE WORST REVIEW EVER! So what's the story? You have to live with a cath now? Forever? Is there a GOOD hospital near you? Like Mayo or Cleveland? I'm so sorry about your experience and about your pain! A big hug to you♥ and I hope you're better now.

[SarahA33]

Racer,

I'm truly sorry you had such a $&@:! Experience at the ER. With the issues you had going on you mean to tell me they couldn't keep u in your own room? I'm assuming privacy would have been more than appreciated, and a shower. I do hope that the meds were worth the wait and can provide you with some relief. I have two suggestions that could be of some help in the future..

first...Instead of the ER, do you have immediate care/urgent cares you could choose instead? If you Need management of your symptoms Only, (today sounded def like an er visit) minor things like iv fluids, etc. it tends to work well for most people...although a us potsies aren't like most people ......And the second suggestion is to talk w/ ur doc about having a script for having a pain med to control your symptoms at home in case emergencies.

Sarah

[MomtoGiuliana]

I'm so sorry for this terrible experience. I hope you can find a urologist who can help you, if your current one is not able to.

[Racer]

Hanice, thank you. I don't know what the story is, they didn't offer any treatment options other then the cath. Now the cath is gone and they are saying to just use pain meds. This is the only hospital near me that my insurance will cover. Cleveland is not that far away from me, but my insurance wont cover. I have a fairly shabby insurance plan.

Sarah, people were herded in like cattle, haha. No immediate care in my area... and I usually always refuse pain meds, because of addiction in my family. Thanks

[SarahA33]

Hey there racer

I understand you refusing medication for that reason.

[SarahA33]

My apologies AGAIN to everyone for duplicate texts and clearly that first one didn't make much sense cause I didn't plan on sending it. mods could u please erase that one?

[Katybug]

Racer,

I'm sorry this is happening again. I know you had your spirits up since you started to make progress on this issue only to be let down by this whole experience. Hang in there. You will find a doctor that will help you if you keep at it.

[Racer]

I am feeling a bit better, luckily I am very sensitive to pain meds, making a small dose very effective . I dont have another uro appointment, he said that since it is a neuro problem, I should see my neurologist for treatment. My neuro just shrugged his shoulders, and is only ever worried about my bp, something my cardiologist already takes care of (with way more expertise). I need to find a new neurologist

[Racer]

Racer,

I'm sorry this is happening again. I know you had your spirits up since you started to make progress on this issue only to be let down by this whole experience. Hang in there. You will find a doctor that will help you if you keep at it.

Thanks

[corina]

I'm so sorry this happened to you Racer, I truly hope you will get better care next time you need to get into the ER. Hang in there!

[Tachy Phlegming]

Have you looked up Bethanechol (specifically for urinary retention) or meds for "neurogenic bladder"?

You'd have to look at risks etc. and be careful about trying anything I imagine but if you've needed a catheter and don't have one, doesn't any doctor want to trial a med aside from a pain med in order to help you?

[Guest Alex]

Racer,

I'm so sorry this has happened to you. I've had my share of bad ER visits so I understand where you're coming from.

Looking for some new doctors that are more caring and more experienced sounds like a plan to me, just don't give up.

Hang in there and keep on keeping on.

Alex

[Faintinggoat]

Hi Racer,

I have a pretty bad ER near me as well, so I can understand to some extent getting bad care. But what they did to you is just uncalled for. I live a few hours from Cleveland, and my insurance refused to pay for it at first. However, apparently there are some appeal things in place at least at my insurance to appeal to them to pay for care out of network, at places like Cleveland. So when I was referred there my doctors had to submit my charts as well as some other things to the insurance company to state that it was Medical Necessary for me to go elsewhere. I don't know if your insurance does anything like this, but it might be worth giving them a call if you haven't already.

Hope this helped, feel better!

Fainting Goat

[Guest Hanice]

Maybe Cleveland can be owed, or paid little by little. You have to find out what's going on with you. I would start by finding a new doc asap.

[sue1234]

Sounds like you need a new neuro. Having retention and involuntary urination could very well be due to something with the brain and/or spinal cord. And that should be investigated.

[Racer]

As usual, thanks everyone for your replies. I think I might figure out how to file a complaint against the hospital. Not sure if it is a waste of time, but I think I will at least feel better knowing I did something about it.

Tachy, I cant take any of the meds for this problems, because they also lower blood pressure and heart rate. I am on florinef and midodrine and was told I should never take a alpha blocker

[Guest Hanice]

How you doing buddy?

[KareBear]

Racer, i hope you are hanging in there and today your pain is better. About filing a complaint with the hospital, it's not a bad idea. I had a bad experience in the ER once and contacted the director of the ER about it afterwards. He not only took action against the nurse who treated me so horribly but also gave me his private cell phone number in case I was ever in the ER again and had any problems I could contact him directly immediately. So it doesn't hurt to try. Plus like you said it would make you feel a little better.

[badhbt]

So sorry you had such a bad experience, no one deserves to be treated like that.

Are you on Midodrine? I know one of the symptoms can be urinary retention. I am surprised they would put in a catheter and take it out and not know the cause of the urinary retention??

[Rachel Cox]

Hi Racer,

I hear you! I also have problems with retention and involuntary voiding. I have a really great urologist who has been very helpful, so I agree with Hanice, first, find yourself a new urologist. I hope you don't mind me sharing how I tackle these problems, so you have some context for the way it is treated in our part of the world (sorry, not sure where you are from, but I am in New Zealand). My urologist had a home care nurse come and teach me self-catheterisation. When I am retaining, the pain can build to such incredibly intense levels. I know, now, when it is starting to happen. It took a while to train myself to be mindful of the signs. For me, mild headache, flank pain and irritability are the key factors. I have catheters delivered to home and a pretty good system, I made up a catherisation kit which lives in the cupboard next to the loo. Most people wouldn't know if they were visiting that me "going to the bathroom" was a bit more of a manual experience. I have got the 'knack' now and it is fast and a huge relief. I catheterise in the morning and at night and in between when I feel any of the warning signs. It has stopped me going to hospital on numerous occasions and I am incredibly grateful for having the power of management returned to me over this issue. After a while, you get used to your typical bladder volume and you can judge whether you have fully emptied or might need a return to do it again in short order. It's not nearly as awful as it seems. Having a catheter in for a fixed period of time is much riskier. I had a supra pubic catheter for a time and the issues it caused were far more destructive than it was worth. I am a huge fan of independence.
When my autonomic nervous system 'swings' me the other way, into incontinence, I take a pill called 'Vesicare'. It doesn't stop the voiding altogether, but it reduces the amount of times I go in a day and that helps me to manage things. I also use continence products, there are some pretty good ones coming on the market.
All in all, I feel like I have control over the management of my bladder, if not over the bladder itself. That is a beautiful thing, to feel in control, to have a system. Once you have found yourself a new urologist, ask them about the possibilities of these approaches and if they will work for you. There is hope and I know you feel really awful right now. Hope you find the answers you need real soon.

[Rachel Cox]

Oh and just as an aside, I came off the midodrine because of urinary retention. Midodrine was one of the more effective drugs for my other problems and I was devastated. I am now back on it, after my body proved that in my case, the urinary retention and incontinence cycle are a symptom of my dysautonomia, not a side effect of the midodrine. Just thought I would share as it isn't always wise to throw out the baby with the bathwater... better to take a methodical approach. Just my thoughts...

[Racer]

Hanice, not as much kidney pains, so I am not feeling as bad.

Kara, I typed out a message to send the hospital threw the hospitals website complaint system. Unfortunately like many things with this hospital, it was not working, wouldn't accept my message. I am waiting to see if they fix it.

badhbt, Rachel,

I do take midodrine, but I was taken off of it on a couple occasions, and the problems persisted.

This is getting confusing (even for me) so I will try to sum it up,

I had a cath (twice now), because of a UTI. I was not able to go at all, so I really didn't have much choice. They said as long as I can go at least once per 8 hours, I would be fine. I had urinary incontinence problems for months prior, that were just shrugged off as a neurological problem they couldn't do anything about. I was only referred to a urologist after I got the UTI and cath. The urologist said all the urinary problems I have been experiencing, including the UTI, are caused by urinary retention with overflow incontinence. He said this was a neurological problem, a "neurogenic bladder", and that I would need to talk to my neurologist about it. The neurologist just shrugged his shoulders, nothing he could do. The only tests I have had is a urinalysis and a post void scan that showed I had 400ml left in my bladder post void. My PCP said that the only thing I could do was to keep managing it with absorbent products and wait to see if it goes away. That is what I have been doing for three months now, except for the one week I had the cath. The cath was a major relief, physically and mentally.

Since the cath was taken out Friday, I have yet to really have a controllable void. Since it was taken out, I feel like urine is filling to the point that it backing up to my kidneys. When I feel it in my kidneys, I am doubled over in very bad pain until my body decides it wants to go into "purge" mode. It is like with a flip of a switch I uncontrollably void my bladder, bowels, and vomit all at the same time. The only thing the hospital would do was give me pain meds. Thankfully my body decided to calm down a bit and I am not experiencing such bad "purges" and kidney pains.

[Racer]

Sorry for the way to much TMI of my last reply

[Guest Hanice]

Hey.. have you been to an immunologist? Since you have these usual bout of uti? I would think your pots is immune in nature? Hmn. I'm just thinking typing out loud.

Good to know your not in so much pain anymore!