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!

Views: 6

Comment

You need to be a member of TransplantCafe.com - The Gift of eLife! to add comments!

Join TransplantCafe.com - The Gift of eLife!

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!!!

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Kathy Nickell-Nuss posted a discussion

Itching!

I have had two liver transplants, one in 2012 and one in 2013.  I have been in chronic rejection for 2 years.  My liver enzymes are trending downward which is great, bur I live with horrible itching daily.  Has anyone experienced this and if so, how or what can I use to stop the itch?  The itching is mostly in my feet and hands, but sometimes all over my body.  It's not really the skin that itches, It's under the skin!  It kind of feels like the itching is in my veins....running through the blood.  Cold water is all that seems to temporarily take it away.  Heat triggers it!  Please respond if anyone knows more than I do.Thank you,KathySee More
Saturday
Michael Doseck is now a member of TransplantCafe.com - The Gift of eLife!
Friday
Dora Papamichael is now a member of TransplantCafe.com - The Gift of eLife!
Wednesday
Dennis E. Chavis replied to Sarah's discussion Alpha 1 - Antitrypsin Deficiency (AAT) in Liver Transplant cases? in the group Liver Transplants
"alpha 1 was what I was told? transplant on Oct. 4 2003. they tell me that it can not affect my new liver? but I,m having some issue now, the rest of the family where tested and looks like I drew  lucky the straw! I very happy with things! …"
Jul 13
Dennis E. Chavis joined Gabrielle's group
Thumbnail

Liver Transplants

This is a group for all people who have had liver transplants. Feel free to say how long you have been a recipient and what medication you are on. Some doctors hope to have their patients off all medications, any thoughts?
Jul 13
Nancy posted a blog post

Grandson Now Needs a Heart Too

Wow! I can't believe all that has happened since I last signed into this site. After already having been through heart transplants with my girls (now adults), my ten year old grandson needs one. He was diagnosed with advanced heart failure and airlifted to University Hospitals on April 16th. It was just heartbreaking to do this yet again. There are no words. As horrible as it was to watch him go through all of this, I am so grateful he is still with us today. He now has an LVAD and is able to wait at home. This is such a big improvement over how things were when my kids were waiting. My grandson's mother was on an LVAD in 2001 for almost three months. Back then they were external and connected to a huge machine. Today they fit in a small bag. Wow! That's big progress in less than fourteen years. So now we wait........... Again.See More
Jul 13
Joseph Varano posted a status
Jul 13
Joseph Varano updated their profile
Jul 13
Teresa Meyers left a comment for Helen Colucci
"Welcome Helen, hope this finds you doing well"
Jul 12
Teresa Meyers posted a blog post

Weight question

I feel so blessed to have received a liver transplant 12-1-2012 my question is has anyone had weight gain post transplant? Not taking any prednisone, but have had weight gain of 25-30 pounds. Never heavy in my past, small frame, and not a big eater. Thanks in advance.Feeling very luckySee More
Jul 12
Helen Colucci is now a member of TransplantCafe.com - The Gift of eLife!
Jul 11
kevin janzen joined Holly Werlein (Holdol)'s group
Thumbnail

Chat Time!

To get the chat room rocking with conversation come here to schedule a time to chat with your fellow transplant friends. Meet new people, discuss different topics/issues and relate to others who understand what your going through.
Jul 8
kevin janzen updated their profile
Jul 8
kevin janzen joined Becky Waller's group
Thumbnail

Living Organ Donors

Been there, done that? Thinking about doing it? Join us for discussion and comeraderie around the living kidney donor and living liver donor experience.See More
Jul 8
kevin janzen posted a photo

My new battle scar

Incision from June 1 2015
Jul 8
kevin janzen is now a member of TransplantCafe.com - The Gift of eLife!
Jul 8

quick links!

 follow transplant cafe:

Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

Meet Members by Transplant Type

Heart Kidney
Liver Single Lung
Double Lung Pancreas
Intestinal Bone Marrow
Tissue Kidney / Pancreas
Other Transplant

Badge

Loading…

© 2015   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service