4 1/2 weeks in Hell

13 years 10 months ago #31792 by maz
Replied by maz on topic 4 1/2 weeks in Hell
I've been looking for Rick's update & thinking & hoping the best, only today found this thread! I really hope you have experienced the worst & things will gradually get better day by day for you Rick. We are all sending our most positive thoughts & remembering you are 'a force of nature' x

Dx-11/12/09 pTa G2
Mitomycin C x6

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13 years 10 months ago #31706 by Melodie
Replied by Melodie on topic 4 1/2 weeks in Hell
Rick,

Please return to us with some information - I'm praying you know we do care about you and want you to be successful in your recovery following your RC. You have to believe you will be...it just takes time. I didn't get your diversion but the Indy Pouch and it took a good four months before I felt like I was making the progress I wanted to see. Try to stay strong. You can make it thru this storm...we will help you to push aside the clouds and in time, the sun will shine again for you. You are in my thoughts & prayers.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 10 months ago #31678 by GKLINE
Replied by GKLINE on topic 4 1/2 weeks in Hell
Rick.
How are you doing? Please give us an update. I am worried about you and just want to know if things have improved.
I know about things going wrong, but I need to know you are fighting the good fight.
Keep us in the loop, please.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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13 years 10 months ago #31671 by Melodie
Replied by Melodie on topic 4 1/2 weeks in Hell
Rick,

So sorry to hear your story; I know it doesn't help make you feel any better but I've read of worst situations following an RC; things can go wrong for all kinds of reasons no matter which diversion one chooses. Since things did go wrong for you, I hope it wasn't that you had a less than competent surgeon; if so, it's probably tough to find another doctor who is willing to take you as a patient, but it certainly is worth the effort of trying to find one. You obviously need the best help available in your part of the country.

Don't beat yourself up for choosing a neo; you made what you felt was the best decision for yourself based on what facts you had. And as bad as things seem right now, recognize this is only a temporary situation. Things will get better. You just need to find the right medical help and look for whatever positives you can find to keep you going until the tide turns; don't give up, as long as we have life, there is hope. I have added you to my daily morning and evening prayers. Hugs across the map. God bless.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 10 months ago #31645 by mmc
Replied by mmc on topic 4 1/2 weeks in Hell
Rick,

So sorry to hear that you had/have such a nightmare. Hope things turn around soon and you get on the mend. Hang in there.

You may want to consider a new doctor given the experience you have had with this one. What you have described is just terrible.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 10 months ago #31635 by Jeff F
Replied by Jeff F on topic 4 1/2 weeks in Hell
I had my RC in April, 2008. I decided on the ileo conduit because I didn't want to go out of town and my Uro didn't do them. Also, I read about problems with a neo and didn't want to face anything more. Anyway, I was 13 days in the hospital, principally because the damn wound wouldn't heal. I am diabetic and I guess that had something to do with it. I had a terrible time in the hospital with stuff gushing out of my wounds when I got up, et cet.

After I went home I went through 5 months of home and office treatments to close the wound. The wound had tunnelled and it was getting dangerous. Finally, they went in and 'trenched' my abdomen, cutting out all the bad old tunnels. That did it, I healed in 30 days. Got a nasty looking scar for it.

My point is I had a bad time for a long time after the operation. Eventually it all cleared up. All that time I had to get up and go work. Luckily I am self-employed and my hours are light, but it was still a challenge.

So, I think it will eventually be ok for you as well. This is a disability, it's no walk in the park. Life is worth living especially for your loved ones. But it is a different life. I now wish I had a uro bladder, but I can't go back and I live with what I have.

Buck up and best of luck.

Jeff

;)

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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