I've got so much to say, but what I really want to know is.... Post transplant, has anyone (post dialysis) regained their libido, but have had a million bladder infections that now both partners are …

I've got so much to say, but what I really want to know is....
Post transplant, has anyone (post dialysis) regained their libido, but have had a million bladder infections that now both partners are afraid to be intimate? For fear of another infection?

Here's the story:
My live-in boyfriend and I (together 9 years) had "lovins", then I got a UTI, then THAT turned into CMV in my lungs. I almost died, and now, nothing is happening in bed.

Cely and Dr Stock at UCSF say that taking me off Valcyte 6 months after tx was the cause of the CMV. One of their collegues in TX said they had the same problem with some of their k/p tx patients too. SO NOW, they're thinking of making patients take Valcyte for a longer term, like 9 months, so CMV doesn't rear it's life altering head.

Does anyone know what the terms "ICU Psychosis" or "Brain Fog" are? I do! My dreams during the 2 wks in ICU w/the CMV/Pneumonia where HORRENDOUS.

This blog entry has sat in my 'puter for 2 days waiting for me to finish it. My left eye hemoraged, but it's going to be fine, so I've been a little preoccupied. For any tx patient new to this website PLEASE know I'm so happy now that I'm here that one of my co-workers hatefully finds me annoying (she's too miserable for words).

I WOULD do this again and again, but it IS a journey!

Happy Thursday to all of you, and you're all in my thoughts (really) and in my prayers too!

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Comment by Sarah Copeland on March 18, 2010 at 6:54am
wow . i was in icu for two weeks. with psychadellic dreams. and dreams of me eating ice cream in my ex fiances kitchen half asleep. sleepwalking i guess. the ice cream had colored smily faces and i was naked with a colorful beenie hat. i tried to run away when someone turned on a light but was so dizzy and sleepy ,...i couldn't mmove and they tackled me to the ground. everytime i would fall i'd hit my head and hear buzzzing noises. i think it was the dialysis machine going off cuz i kept moving. lol. I take Valcyte too. I don't quite get it. Is it herpes or something or contagious?? I'm worrired. Me and my b/f have never done anything....even though he's quite older than me. But we love each other to death............he lives in Texas. I wouldnn't want to make him sick or worried about being intimate.

~Sarah~
Comment by Cathy Kane on March 1, 2009 at 9:35pm
Ramona,
You are an angle! I know about cranberry and UTIs...thanks for the reminder! When I had CMV/pneumonia over a year ago, I was catheterized for so long (in ICU for 2wks) that my bladder got lazy, and now fully emptying is difficult.
One of my Drs gave me a tip, but it takes the spontenaity away...which is KIND OF bummer, but..... :)
I would love to chat w/you more. My boyfriend has been my angel for 9yrs. I know he's gone thru alot, too, so I 'd love to know your story, and about how your bond grew after tx... Dante does so much, but can still be a stinker :D How do you keep your peace?
Happiness to you, too!
Comment by Ramona on February 23, 2009 at 9:21am
My hubby had a liver tx almost 21 years ago. He's been re-listed for 2 years now (for liver & kidney this time), but is currently doing so well, they are skipping over him. Yay! He's been having some libido issues too (he asked his coordinator why he's not a "hunka hunka burnin love" anymore"). Most of that is medication related. I understand that you're saying you & your boyfriend are afraid of infections, have you tried drinking cranberry juice or taking a cranberry supplement? That is supposed to help with UTIs. Not to be too personal - but if he's not using a condom, maybe try it with him using one - just to be sure that nothing is passed from him to you that could effect you. Not suggesting that he might have anything major, just that with you being "lowered immunity" - any little thing can cause an irritation.

I totally understand the 'brain fog' - any time he's given drugs for procedures (conscious sedation) - he's very foggy for at least one day following. He has strange dreams, strange conversations, etc. He'll tell me about them when it happens, but rarely remembers them after it's worn off.

I'm glad that your happiness can cause your coworkers aggravation! :0) Stay happy - keep healing - and hang in there. The intimacy will return. Enjoy life!!!

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