Help 66yr mom not recovering well from neobladder

17 years 1 month ago #3706 by trubrum
Thanks for the "heads up" on the B-12 information....every one has been so helpful!

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17 years 1 month ago #3702 by Patricia
Your mom has a great advocate in you.......i must admit noone told me about metabolic acidosis either. I know i was monitored every week with blood tests so i'm sure it would have turned up unless they were not looking for that?...who knows. The one thing i do have is B l2 deficiency...it showed up about 8 months after my surgery. The ilium which they used for my stoma is responsible for metabolising B l2 and now that its gone i have Bl2 shots every week.......just another thing to think about!! And the doctor has to ask for a "specific" B l2 count..that takes a couple of days. The other one is not accurate...just a future reference.
I'm curious....why the incidence of this condition in some patients and not others...anyone know the answer?........Pat

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17 years 1 month ago #3699 by Rosemary
Dear Tru,

[smiley=2vrolijk_08.gif] I'm so very glad that your Mom is doing so much better.

This metabollic acidosis is something I would never have thought of. It is good to know that this is a possiblity after neobladder surgery.

Thanks so very much for giving us the outcome of your tenacious care and concern for your Mother.  She is very fortunate to have you.

Best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 1 month ago #3696 by trubrum
Thanks everyone for your help. After I posted this information we took my Mom back to Cleveland Clinic requesting they evaluate her for Metabolic Acidosis based on my research and sure enough that is exactly what her problem was. She went from almost a coma like state at admission to now eating, walking, and getting around fairly well. They began bicarbonate therapy about 36 hours after admission (so slowwww!) and finally it was like a miracle turn around. So the morale of this story is Providers should let patients know this could be reaction to neobladder surgery, and when symptoms are obvious...test for it. Number two: when provider tells you nothings wrong three hours away via the phone drive up there and demand further testing. So thanks...and good health wishes to all of you reading this!

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17 years 1 month ago #3692 by Patricia
I also had my surgery done at The Cleveland Clinic only my doctor had me on Nexium for 6 weeks along with an antibiotic. Depending on the pain killer you can get extremely lethargic...it happened to me. This is an extremely painful surgery....the bowels are really painful and it takes a long time for food to even taste right due to the drugs. Also i was extremely sleep deprived because of having to cath every 2 l/2 hrs day and night until the bladder stretched out.......so let her sleep. If something tastes good whether it be pizza or hot fudge sundaes...let her have it. The only thing that tasted good to me was Starbucks Mocha and peanut butter crackers! You lose a lot of weight...your metabolism is going crazy and it just takes a long time to come back from this surgery. Its grueling. It does get better. Just make sure she has follow up blood tests to make sure there's no deficiencies. Once i got rid of the pain killer and just got on tylenol i finally took some control of my life......but i did sleep whenever i could. Imagine getting run over by a Mac Truck.....thats what she's been through.

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17 years 1 month ago #3691 by KarenE
I just posted this symptom in the other topic, but feel I should post it here too -

My Dad did great in surgery, ate in the hospital, had a great appetite.  Was told in the hospital he had microscopic cancer in some lymph nodes.  That depressed him!  Oh my gosh... they should have someone you can talk to immediately instead of waiting for your Oncology visit.

But ... the main reason I wanted to post is Metabolic Acidosis.  Here is my post I copied from the other topic:

"Watch out for Metabolic Acidosis.  My Dad had this and no one at the hospital caught it.  He had no appetite, It was a struggle to find things he wanted to eat.  He landed in the ER twice with high potassium - we all thought due to him not drinking enough water and becoming dehydrated.  A long story short,,, after the second visit to the ER with symptoms of a heart attack, I came home and searched the net and found that his symptoms were most likey due to metabolic acidosis.  Once he started the bicarbonate he is fine, more like great!  After each visit to the ER he was hungry, had an appetite.  After getting home his appetite slowly left...  I had him start disolving 1 teaspoon of baking soda at night before bed until he could see the kidney doctor.  Unbelievable his doctor and nurse didn't see the signs when my Mom called on several occasions telling them what was going on.  Very frusterating!  My Dad's situation is a little different - had chemo before - neobladder in 7/06 -  and just finished chemo after.  He is working towards getting the suprapubic catheter out soon.  He can't wait to get rid of it! "

Anyway,
I hope this helps.  After he was diagnosed having metabolic acidosis and started taking the bicarbonate pills he was a new man!  It was amazing!!!  It was such a shame to have him set back a month due to no one diagnosing this.  I heard from another person on this board that her Dad was sent home on the sodium bicarbonate.  I wondered why my Dad wasn't.  My Mom and Dad asked the surgeon and he thought he had mentioned this as a possible side affect.   UGG AND DOUBLE UGG.  With everything you are going thru with having bladder cancer, at least they could put it in writing so you can watch out for it.

I hope your mom feels better soon.  She has a lot of good livin to do!  :)  

Take Care,
Karen E.

I had to add one more thing.... I went to see my Dad shortly after surgery, trying to think how long it was.... and he had lost a ton of weight, was lethargic, tired, weak, all of those things. I cried driving home. within a week he was in ER the first time. I hope you can pin point what's going on. Also... my Dad was sent home on an "eat anything diet". WHY? He should not have been eating acidic food!! With the urine absorbing thru the neobladder into the body, making it more acidic, the last thing he needed was more acid. I'm not a nurse and not a medical professional ..... just a searcher on the web for my Dad.
Take Care,

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