AnonymousJuly 27, 2007 at 11:25 pm
We saw a Urologist today to see if anything can be done to help Nate be able to feel when his bladder is full and not wait so long between emptying it. It has caused him to have kidney infections and pass blood clots.
Our Uro doc says Nate has a Neurogenic Bladder.
I looked it up and it is when the bladder isn’t getting signals from the nerves to tell the muscles its time to empty so it waits way too long to do that.
You can read about it here… [url]www.healthsystem.virginia.edu/uvahealth/adult_urology/neurblad.cfm[/url]
I wonder how many GBS patients have that problem?
The doc said it was very common in GBS.
Do any of you have that too?
AnonymousJuly 28, 2007 at 12:06 am
trudy, im 47and post gbs 29 months. my gyn did a test called a uro on me in jan. this year and said i held 500 cc before telling her i need to go and most woman hold 250 cc. she said this told her i had alot of nerve damage in my bladder. i also have 2 kinds of incontinence[which meds help], cysticel[fallen or herniated bladder] fallen uretha, and rectacel[herniated rectem] some of this can be corrected with surgery[when i can get financial aid]and or meds. but they are a direct result of gbs. not fun stuff. always, barbara
AnonymousJuly 28, 2007 at 12:40 am
Nate has been known to fill a male urinal all the way to the top. When I told his new doc that, he said WOW. He is worried that Nate’s bladder has gotten very large, me too.
He is having me bring Nate back in a couple of weeks for them to teach him how to self-catheter. The doc says his bladder needs to be emptied about 5 times a day. Right now he only empties 3 times in 24 hrs average.
The doc says emptying it more will allow it to get smaller.
They are also going to CT scan nate’s whole urinary system to see if he has stones, the reason for the clots.
We have them on both sides, my mom, my sister, my daughter and nate’s dad.
Just that is scary enough but with him not emptying often, the chances go way up.
It still amazes me how many weird things GBS can leave you with.
AnonymousJuly 28, 2007 at 11:04 pm
Yes Trudy. I do have stones also. While in the hospital I had to have the bladder scans after I went (every 3 hours all day everyday-can you say No Sleep!) Now I just go when I feel a certain pain in my kidney area or at least 5 times a day-on good days. I have heard the feeling comes back after awhile, but it hasn’t for me yet. I was also told to cut the sodium, milk, calcium down, because of my stones. I’m praying for Nate.
did you enjoy your week away? how did Nate do?
AnonymousJuly 29, 2007 at 4:58 am
We leave monday. I’ve been driving myself nuts making lists and getting everything done like ordering nate’s meds, buying food for him and his bro, trying to think of everything and still finish packing tomorrow for me and my husband.
Nate’s bro talked to me today and he’s really looking forward to spending the week with nate. He has plans to take nate to his place to run errands, go to a few movies, Dave and Busters, and who knows what else.
He’s really good at watching out for Nate so I think he will do a good job of that while we’re gone.
I’m still going to worry about them though but I think they will have fun.
I’ll give you the results of it all when we get back.
July 29, 2007 at 5:04 am
I have this same about my bladder I dont feel it until it is more then full, and even then I dont have to go, I try to sceadule my have to go, and try not to let more then 4 hours go betwenn going on toilet, but some day I forget it and then it hurts to pee speacaly in the rest of it. and it is very very dark pee that comes. I dont know if I got infection once again, I was geting it over and over again in the rehab becouse if this not going to the toilet so they took me every 4 hours to the toilet, even though I did not feel it that I had to go.
Hope you have good time on your trip, I know Nate will 🙂
AnonymousJuly 29, 2007 at 2:17 pm
Nate had a really bad kidney infection a year ago when he was still in the hospital too. He had Strep infection.
I have been worried about how dark his is also. Its very concentrated and has a very strong odor.
One of the things that worries me too is that if he has a bladder or kidney infection, I think he might not be able to tell if he has loss of sensation.
I guess I will find out more when we go back to the doc in 2 weeks.
Just one more thing to have to address but not one to ignore.
July 29, 2007 at 6:09 pm
Try not to worry and have a good time away tommorrow.
Dawn Kevies mom 😮
AnonymousJuly 29, 2007 at 9:20 pm
Trudy, Go And Enjoy Yourselves! Nate and His Bro will be fine.
I have had kidney stones a couple of times with only a little bit of Kidney pain to tell me there was a problem, along with the dark urine. I have to drink alot of filtered water and white cranberry/peach juice to keep things flushed. Hope you can relax while you are away, I’m sure Nate is in capable hands and You need to care for No 1 while you can.:)
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