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Desperately grasping for straws

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Old 06-25-2012, 01:22 PM   #1
Join Date: May 2012
Location: Florida
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mzack21 HB User
Desperately grasping for straws

To start off, I want to thank everyone for reading this. I will try to make a long story short.

I am a 25 year old female who has a double collecting system on my right kidney (double ureter) and they both implant into the bladder (I have 3 holes in my bladder). The top ureter controls the top half of my kidney while the bottom ureter controls the bottom half of my kidney. I had some stones removed 4 years ago that were stuck. Eight months ago I started getting severe UTI's. The doctors put me on a series of 6 different oral antibiotics within a 3 month period. The infection then became resistant to all oral antibiotics. The only thing they could give me was IV Invanz. Five months ago I got my 1st PICC line and did 18 days of IV antibiotics. My PICC line was pulled and 28 days later I was hospitalized with yet, another infection and PICC line. After 14 days of antibiotics, my PICC was pulled. Three months later I am in the exact same position. I was started on IV antibiotics 3 days ago and today, I had my 3rd PICC line placed in the last 5 months. I've been to several urologists and infectious disease specialists and no one can figure it out. They think I might be having reflux because of my double ureter. I have been very positive about my ordeal but I can't keep getting PICC lines and doing this. I am so desperate for a lead or to hear someone else's story. Thank you for taking the time to read this.

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Old 06-25-2012, 01:50 PM   #2
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Re: Desperately grasping for straws

I'm so sorry you're going through all this. I had a picc for 18 months before getting a port put in. I have other medical issues that required constant IVs and the port has been wonderful. It will be pulled eventually, but in the meantime, there is no risk of infection like with a picc.

My cousin gave me a kidney that also has a double collecting system. I have been lucky in that I haven't had any problems with it. She did though for many years but things eventually settled down. I'm sorry I can't be more help but I hope that they manage to sort this out for you. Best of luck.
Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

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