On Jan 25, 2005, at 7:02 PM, Stacy Harim wrote:
<x-tad-bigger>I personally think you do need another doctor and if you consider doing a surgery like that again to consider maybe getting the urinary diversion
</x-tad-bigger>
A decision like that is not that easy. That is MAJOR surgery and after my ordeal with what is considered minor outpatient surgery, to then consider major surgery where I'm in the hospital for at least 7 days is alot. My hospital stay was horrific. Jonny just can't take the time off from work - she has no family medical leave time, especially since she took several days off after this ordeal.
<x-tad-bigger> I would talk to different doctors no matter what route you do chose and find out how many surgeries they have done superpubic or any route you chose to go.
</x-tad-bigger>
This guy was recommended as one who does these surgeries, probably one of the only ones in Columbus. I would love to find a specialist in neurourology here, they just aren't that easy to find. If I go out of town, that is even more expensive for us, considering hotel accommodations for jonny and etc...
<x-tad-bigger> I could be wrong but I faintly remember a place you can contact to find out a doctors credentials, success rates, etc. with their patients, but I barely remember let alone know where this can be done.</x-tad-bigger>
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</x-tad-bigger>
I've seen the sites, and I've also checked with the medical boards and the Amer. Urology Assoc for recommendations. I'm calling the MS society here in Columbus today and have spoken to a rehab nurse who is a para,and her husband is a physiatrist for a recommendation too.
Most of all I'm praying for an answer and a positive outcome.;-)
Thanks for the support Stacy,
River
<x-tad-bigger> </x-tad-bigger>
<x-tad-bigger>Good luck,</x-tad-bigger>
<x-tad-bigger>Stacy</x-tad-bigger>
<x-tad-smaller>----- Original Message -----</x-tad-smaller>
<x-tad-smaller> </x-tad-smaller><x-tad-smaller>From:</x-tad-smaller><x-tad-smaller> </x-tad-smaller><x-tad-smaller>B. Kimberlin</x-tad-smaller><x-tad-smaller> </x-tad-smaller>
<x-tad-smaller>To:</x-tad-smaller><x-tad-smaller> </x-tad-smaller><x-tad-smaller>River Wolfe</x-tad-smaller><x-tad-smaller> ; </x-tad-smaller><x-tad-smaller>Quad List</x-tad-smaller><x-tad-smaller> </x-tad-smaller>
<x-tad-smaller>Sent:</x-tad-smaller><x-tad-smaller> Monday, January 24, 2005 3:15 PM</x-tad-smaller>
<x-tad-smaller>Subject:</x-tad-smaller><x-tad-smaller> Re: [QUAD-L] my ordeal</x-tad-smaller>
<x-tad-smaller>River,</x-tad-smaller>
<x-tad-smaller>I have had my suprapubic for nine years and ironically enough I just had my first case where the bubble seemed to have leaked resulting in the catheter becoming wedged between my bladder and my bowel wall. I have pretty good sensation in my bladder and knew something was wrong when I could urinate lying back, but was getting dysreflexia in the sitting up position. I called my brother to do an emergency catheter change and it was extraordinarily painful. It took about 48 hours for my bladder to heal.</x-tad-smaller>
<x-tad-smaller>As far as your doctor is concerned, I agree with everyone else that you should avoid this doctor and explore all of your options. If you decide to get a suprapubic again and you run into a situation like this, I would recommend trying to irrigate and if that doesn't work change the catheter. I do have a problem with my suprapubic clogging intermittently, but I wonder if I would have the same problem with any other type of catheter. Good luck and I hope you do not have anything like this again.</x-tad-smaller>
<x-tad-bigger>Billy from Tampa</x-tad-bigger>
<x-tad-bigger>C2-3</x-tad-bigger>
<x-tad-bigger>9 years post</x-tad-bigger>
<x-tad-bigger>River Wolfe <[EMAIL PROTECTED]></x-tad-bigger><x-tad-bigger> wrote:</x-tad-bigger>
<x-tad-bigger> Hi everyone,</x-tad-bigger>
<x-tad-bigger>I thought I would get some feedback on something that has happed to me.</x-tad-bigger>
<x-tad-bigger> As some of you may remember, I planned to get a SupraPubic placed</x-tad-bigger>
<x-tad-bigger> recently. I went in for the surgery on 1-14-05 and everything went</x-tad-bigger>
<x-tad-bigger> well. I was a bit freaked out by the tube and in ALOT of pain so I</x-tad-bigger>
<x-tad-bigger> stayed in bed for two days after the surgery, got up early on the third</x-tad-bigger>
<x-tad-bigger> day to go potty ( I love this list) and as I got up into my chair I had</x-tad-bigger>
<x-tad-bigger> an EXCRUCIATING PAIN in my abdomen. I actually thought it was gas pain</x-tad-bigger>
<x-tad-bigger> BUT I NEVER HAVE THAT, so I was a bit concerned but went ahead to the</x-tad-bigger>
<x-tad-bigger> bathroom. I noticed that my urine was tinged with blood after that and</x-tad-bigger>
<x-tad-bigger> also that the catheter seemed to move more than usual. During the</x-tad-bigger>
<x-tad-bigger> entire previous two days I had NO BLOOD in my urine, a bit surprising</x-tad-bigger>
<x-tad-bigger> to me but GREAT. So the blood was unusual but I though perha! ps</x-tad-bigger>
<x-tad-bigger> expected since I had gotten up and moved around. The catheter moving</x-tad-bigger>
<x-tad-bigger> more than before did concern me. About an hour later I got off the</x-tad-bigger>
<x-tad-bigger> toilet and during this entire time my urine was more bloody and about</x-tad-bigger>
<x-tad-bigger> 40cc at most. Got into the shower and became alarmed that I didn't</x-tad-bigger>
<x-tad-bigger> appear to be making more urine during this whole time. I drink coffee</x-tad-bigger>
<x-tad-bigger> and usually pee alot in the AM. Rushed out of the shower to call the</x-tad-bigger>
<x-tad-bigger> Dr. knowing his office wouldn't be open yet. As it happens I called</x-tad-bigger>
<x-tad-bigger> right as they opened up. Talked with the nurse and told her the entire</x-tad-bigger>
<x-tad-bigger> story. She said she would call me back after speaking to the Dr. She,</x-tad-bigger>
<x-tad-bigger> not Dr. called me back and said Dr. was busy with surgery until 1pm.</x-tad-bigger>
<x-tad-bigger> That there was probably nothing to be concerned about and to come in</x-tad-bigger>
<x-tad-bigger> between 1&4 just to "put my mind at ease".</x-tad-bigger>
<x-tad-bigger>After drinking a quart of water (which I do every morning) and no</x-tad-bigger>
<x-tad-bigger> peeing for TWO HRS and a strong sensation that I had to p! ee, I called</x-tad-bigger>
<x-tad-bigger> back to tell them I was going to the ER and to call ahead because</x-tad-bigger>
<x-tad-bigger> something was definitely wrong. The nurse put me on hold to get the DR</x-tad-bigger>
<x-tad-bigger> and came back on the phone and said to come in NOW. Luckily, I had</x-tad-bigger>
<x-tad-bigger> called Jonny earlier and told her to come home as I needed to go to the</x-tad-bigger>
<x-tad-bigger> Dr. that afternoon. She got there just as I hung up with the nurse the</x-tad-bigger>
<x-tad-bigger> second time and we rushed to the Dr. All this time I'm in bad pain</x-tad-bigger>
<x-tad-bigger> because I NEED TO PEE and not to mention worried as all getout. Did I</x-tad-bigger>
<x-tad-bigger> mention that there was urine coming out of my cath site? I told that</x-tad-bigger>
<x-tad-bigger> to the nurse as well.</x-tad-bigger>
<x-tad-bigger>GOT THE PICTURE?</x-tad-bigger>
<x-tad-bigger>So, we get to the Dr. office and I'm left in the waiting room for AT</x-tad-bigger>
<x-tad-bigger> LEAST 20 min. Jonny was fit to be tied and I was in tears.</x-tad-bigger>
<x-tad-bigger> UNBELIEVABLE. Finally I was taken back and the Dr. looked at the cath</x-tad-bigger>
<x-tad-bigger> site and told the nurse to irrigate, because it was probably clogged.</x-tad-bigger>
<x-tad-bigger> Dr. then left the room. Nurse irrigated and got nothing! , did this</x-tad-bigger>
<x-tad-bigger> several times. Then she went to get the Dr. who came in to scope my</x-tad-bigger>
<x-tad-bigger> bladder, he found that the catheter balloon had burst and the catheter</x-tad-bigger>
<x-tad-bigger> was in the abdomen wall "no wonder you're in pain" he says. He cathed</x-tad-bigger>
<x-tad-bigger> me and then the PAIN got real bad, I'm moaning and doing my best not to</x-tad-bigger>
<x-tad-bigger> scream. He says I need to go to the hospital and be admitted for</x-tad-bigger>
<x-tad-bigger> several days of antibiotics and pain meds. They called the squad and</x-tad-bigger>
<x-tad-bigger> off I went.</x-tad-bigger>
<x-tad-bigger>I was there for 3 days and have been home since Thursday. I have</x-tad-bigger>
<x-tad-bigger> Peritonitis, meaning urine and whatever got into the peritoneal cavity</x-tad-bigger>
<x-tad-bigger> and caused pain and infection. I've read the pain could last for a</x-tad-bigger>
<x-tad-bigger> long time.</x-tad-bigger>
<x-tad-bigger>What an ordeal. The hospital stay was just ducky (heavy sarcasm). I</x-tad-bigger>
<x-tad-bigger> never want to go back.</x-tad-bigger>
<x-tad-bigger>Would you go back to this Dr?</x-tad-bigger>
<x-tad-bigger>Thanks for listening,</x-tad-bigger>
<x-tad-bigger>River</x-tad-bigger>
<x-tad-bigger> Do you Yahoo!?</x-tad-bigger>
<x-tad-bigger>Yahoo! Search presents - </x-tad-bigger><x-tad-bigger>Jib Jab's 'Second Term'</x-tad-bigger>
