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: 3

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!!!

Members

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Clare mcgee replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Andrea, You have certainly had a rough time on top of the usual transplant roller coaster. Unfortunately the drugs we rely on bring its own problems. I am very pleased you have a supportive family to keep you strong. You are young & strong in…"
6 hours ago
Beverly L. Senzee was featured
yesterday
Profile IconBeverly L. Senzee and Keeleigh John joined TransplantCafe.com - The Gift of eLife!
yesterday
Andrea Gaskin replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Clare, I started off taking problably around 9mg 2x a day of prograft and 1000mg of Cellcept 2x a day. It was eventually tapered down to 4mg then in Feb down to 2mg and cellcept to 500mg 2x a day. My dose has fluctuated quite a bit in the last 2…"
Monday
Caring 4 Carrie posted a blog post

Kidney Fact: Diabetics Can Still Enjoy Easter Too! :)

 Easter Can Still Be Sweet For Those With Diabetes. The ultimate goal is to watch your glucose sugar level if you're planning on having chocolates.Here's options for Diabetics on Easter:  1) Sugar free- family fun activities/ exercise 2) Chocolates- major portion control 3) Non food gifts- gift of flowers or plant 4) Sweet Alternatives- Simnel cake or hot cross buSee More
Monday
Caring 4 Carrie posted a status
"This Afeera. She's needing a kidney. Visit her FB page:…"
Monday
Clare mcgee replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Andrea, Unfortunately This is more common than you may think . Not my personal experience granted but have heard & read of this happening. Out of curiosity what were your Prograf levels over the 2 yr period? & doses? As this plays a…"
Sunday
Brian Primack replied to Phil Keyes's discussion Post transplant blues
"Ipad my heart transplant 8 months ago and I also am on 2x 1500mg Cellcept, 12.5 of prednisone and prograf. I don't feel very good either. I keep wondering when I am going to feel better?"
Saturday
Brian Primack liked Donnia's group Prednisone Sucks :)
Saturday
Brian Primack is now a member of TransplantCafe.com - The Gift of eLife!
Saturday
Andrea Gaskin left a comment for Breanna Williams
"Welcome to the Transplant Cafe Family!!!"
Saturday
Andrea Gaskin posted a discussion

Anyone out there had a Liver Transplant and now need a Kidney due to prograft?

I had my liver transplant March 2012 and now last month almost 2 yrs after my liver transplant, I'm in kidnwy failure and on dialysis 3x a week. I am currently being evauated for a kidney transplant at MUSC in Charleston, SC. I hate dialysis! I need my life back!See More
Saturday
Vrinda Nair updated their profile
Apr 18
Sandy Atkinson is now a member of TransplantCafe.com - The Gift of eLife!
Apr 17
Bobbiejo Winfrey commented on Gary Toulouse's blog post Today April 16th
"Congratulations on reaching your fourth year anniversary! I am so glad that you have been blessed with this wonderful gift. May you only have many, many more reasons to celebrate in the future! "
Apr 16
Joy Youster is now a member of TransplantCafe.com - The Gift of eLife!
Apr 16

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…

© 2014   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service