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Update
Hello all, here is my update:
Last time I posted I had just been discharged from the hospital further to treatment for UTI and fever.
48 hours after I was again admitted to the hospital with fever and abdominal pain, I was in the hospital for 10 days and discharged home yesterday.During my hospital stay I developed sickness and diarrhea for 5 days.
CT scan showed I had a pocket of fluid 12cm x 5cm in left pelvic area. The immediate conclusion made was my neo bladder was leaking.My Surgeon is based at the Shands and I was at my local hospital …….. MD Anderson.
I don’t know if anyone else has experience where your docs are at different hospitals but it certainly seemed to pose problems for MDA
They referred me to a local uro whom they work with, only for me to be informed by this uro that “we do not clean up other surgeon’s mess” I really could not believe what I was hearing as the cause and type of fluid had not even been established!
My husband phoned the surgeon the following day and explained the circumstances and was advised he would make contact.During the hospital stay I had various tests a cystogram proved the neo bladder was not leaking after all
Had a colonoscopy , all clear ……… some good news!
Various CT scansUnfortunately I have come home with another nephrostomy tube and a stent, this is due to a collection of small stones in my left kidney.
I am due to see my surgeon 8/20 to have my tubes and catheter removed ……… can’t wait! But still have to face up to a plan for the spread found during surgery.Anyway hope this makes sense as I am on the strong painkillers and still recovering from my RC, to say it has been a testing time in my life is an understatement!!!!!!
THANK YOU to all who have sent me PM’s, too many to reply to, but I will try as time passes and I feel stronger, it means so much to me to know that I am in your thoughts and prayers during these extremely difficult times.
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6 Replies
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HI Maria – If I remember correctly, the doctors didn’t have specific reasons for the fluid build up in Harry’s case…I think they just said some peoples bodies just make extra fluid in the healing process…or something like that…pretty vague. You will defiintely gain strength slowly. Like Webs said it will be a while before you are feeling somewhat normal…at least that was Harry’s experience. I liked Webs idea of picking one thing to do a day to feel a sense of accomplishment but keep it small so as not to wear yourself out. Your appetite will come along too…keep in mind what your body has been through with the RC and the making of the neo from your bowels. Like someone said to us it was like three surgeries in one, the bladder removal, the bowel cutting for the neo and (for Harry) the prostrate removal…you may have had a hysterectomy(?)…LOTS of healing in there to do! Hugs, love and prayers,
Margot -
Maria,
The fatigue will stay with you for a while. I’m 10 weeks out and still having occasional bouts of fatigue. The secret is to take it easy. I would pick one thing a day to do. Some days that was as little as washing my hair. Your energy will come back just don’t push to fast. It took me a few weeks to get my appetite back, anything sweet tasted awful. Now I eat normally. Hang in there.Webs
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Maria,
Believe me you are tired because of the r/c, and the issues you also have dealt with in this last hospital stay. Strength is very compromised by an r/c, take it easy, rst up, walk when you are up to it and hope to hear some good news from you soon!! Ginger -
Thanks for your replies.
Margot I do not know what caused the excess fluid, we know the neo bladder is not leaking, the hopsital was too focused on this and too quick to blame, whereas in fact they can’t yet tell me the cause of the pocket of fluid.
Like Harry I had a tube placed for drainage, which showed good results within 48 hours.
Its great to be home and on the road to recovery, I still have a poor appetite and feel very tired. I suppose this is normal after RC. -
Hi Maria – I was happy to see your post, but sorry to hear you are again dealing with the doctor/hospital problems. Just wanted you to know that while Harry was in the hospital he also had “excess fluid” which they thought was a possible cause for his bowels not working properly (not passing gas after the surgery). They placed a drainage tube and within a few days it was better. They had tested the fluid to see if it was urine from the neo, but it wasn’t – thankfully! Harry also got a UTI while in the hospital…I hope by now your infection is cleared and you are back on the road to recovery. Concentrate on your healing process from the RC and try not to worry (easier said than done) about the next steps…Matthew 6:25-34. You are in my thoughts and prayers daily. Hugs of support from CA :) Margot
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Wow Maria you sure have had a long list of things to deal with.
Not having your doctor directly affiliated with the hospital you were admitted to can cause problems unfortunately. It’s just too bad you had to hear the “not cleaning up someone elses mess” comments. That is so unprofessional.
Did you get a direct answer as to what/what was the cause of the pocket of fluid was?Take care and I hope you are feeling better soon!
Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto – TURBT 4/26/2013
Kidney pain – CT scan 5/1/2013Sign In to reply.
