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Heather
Forum Leader
Username: Heather

Post Number: 3283
Registered: 05-2003
Posted on Wednesday, June 29, 2011 - 08:48 pm:   Edit Post Delete Post Print Post

My cousin asked me if paranoia or that kind of behavior can be a side effect of a med taken after transplant. I know high doses of steroids can cause problems. She said ever since her neighbor had her transplant she has been acting all crazy accusing people of all kinds of things..not at all herself...just curious if anyone has any info on this.
thanks
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

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BreathinSteven
Forum Leader
Username: Breathinsteven

Post Number: 2316
Registered: 11-2004
Posted on Thursday, June 30, 2011 - 06:21 am:   Edit Post Delete Post Print Post

Hi Heather!!!

Yes -- I've heard of paranoia as a side effect of prednisone... There can be a number of psych side effects and we can all have widely different ones... I've also heard about anxiety, agitation, anger -- paranoia fits well into that group... I believe that a number of the other drugs can cause similar issues...

With the prednisone -- I experienced being quite a bit more emotional... It very well could have been, or could have been strongly influenced by the entire situation (getting new lungs...) But I would find myself crying for little or no reason -- and usually I was not upset -- rather, I was very happy -- and the tears were flowing...

I experience paranoia now -- but mine is generally related to low blood sugar... When I dip, I experience mild paranoia (like someone is following me, watching me - if I'm driving I get a sudden wave of feeling that I'm about to get into an accident...) That's sometimes my signal that my blood sugar is going below normal... My diabetes is likely caused by my prednisone and aggravated by my Prograf...

It would be good if someone was able to tell the neighbor's family -- and that her behavior was relayed to her transplant center... One of the problems is, when we're at our center our behavior can be very different and suddently we're quite normal -- our doctors and nurses are delighted, and our family cannot figure out how we suddenly became "normal" and they don't say anything -- then we go home with them and revert back to a raving lunatic...

Hope you're well!!! Hope you've been enjoying this weather we've been having!!! We went to the Taste yesterday -- it was pretty nice... Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

www.youtube.com/SteveFerkau
mrmajestyk
Member
Username: Mrmajestyk

Post Number: 37
Registered: 11-2010
Posted on Thursday, June 30, 2011 - 09:51 pm:   Edit Post Delete Post Print Post

I had a Liver Transplant on May 16th and I can say without a doubt, I was very paranoid for about 3 weeks. I did things totally unlike me, I hid a knife from my tray because I thought someone was trying to kill me, I thought every night when my wife went back to the hotel that she was never coming back.
The Doctors said it was either the Predisone or I was on Morphine and Dilaudid for pain. I stayed up all night and refused to eat because I thought I was being poisoned.
I finally started talking to a nurse on a slow night and I told her I needed to talk, she answered each and every question and she made me feel much better. I feel like she saved me a lot of grief, because after we talked I started doing better in Therapy and I was released much earlier than expected.
I really feel bad for her, and I agree that someone needs to say something.
God Bless
Hope is the feeling you have that the feeling you have isn’t permanent. -Jean Kerr
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16293
Registered: 05-2003
Posted on Saturday, July 02, 2011 - 11:04 am:   Edit Post Delete Post Print Post

Hi Heather,

YUP! I remember being extremely paranoid in the ICU while I was on the ventilator. I came too and realized that my thoughts were just from the drugs. Whenever i had a clear thought I made a mental note to myself not to ask for any pain meds.

Steve- i am glad that you shared your story about driving in a car and feeling like you can get into an accident.

I have felt this feeling every now and then while driving. WOW!!

love when we share!!
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

Dr. David Bernstein-Advanced Wellness Center


My Photos on Transplant Friends

Heather
Forum Leader
Username: Heather

Post Number: 3286
Registered: 05-2003
Posted on Sunday, July 03, 2011 - 09:40 pm:   Edit Post Delete Post Print Post

Rise..I remember now you telling that story. Must be pretty scary to feel like this. I will have to get back to my cousin and let her know..maybe she could talk to the lady and have her tell her doctor..I am assuming they are not close.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 2029
Registered: 10-2007
Posted on Monday, July 04, 2011 - 07:57 am:   Edit Post Delete Post Print Post

I also had some times when I experienced paranoia while I was in the ICU after my transplant. One time, I think I thought one of the nurses was going to try and steal me away from everyone else and take me somewhere such that the other nurses had to take precautions (such as guard against secret doors...) I also thought I might have been violated which bothered me for quite awhile when I was the ICU. Fortunately, once I got out of the ICU and became more mobile, the paranoia went away and I became much more clearheaded. I think it was a combination of the medications and lack of mobility in the ICU. I hope that the neighbor can get the help she needs. I will say a prayer for her. Many hugs and best of wishes to you.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16302
Registered: 05-2003
Posted on Monday, July 04, 2011 - 09:33 am:   Edit Post Delete Post Print Post

I believe the transplant team will test you if they think you are acting out with paranoia like behaviour. With me, a nurse put this chip behind my neck and I just kept pulling it off LOL I thought they were trying to record me LOL if that is possible.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

BreathinSteven
Forum Leader
Username: Breathinsteven

Post Number: 2318
Registered: 11-2004
Posted on Monday, July 04, 2011 - 11:34 am:   Edit Post Delete Post Print Post

Hi BobbieJo!!!

I think what you're describing is a rather common problem -- I believe it's called "ICU Psychosis"... Some patients, after a prolonged stay in the ICU, kinda go nutz...

When you're in the ICU for a prolonged period -- you're usually in a situation with no windows and the lighting is often constant... There seems to be no day or night... You may have no track of what time it is, or what day it is... You're dealing with constant noise that can cause sleep deprivation... There's a whole myriad of things going on that would, over time, really mess with your mind -- and some of us more quickly than others!

Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

www.youtube.com/SteveFerkau
Rita
Forum Leader
Username: Rita

Post Number: 714
Registered: 06-2003
Posted on Tuesday, July 05, 2011 - 03:53 pm:   Edit Post Delete Post Print Post

I just have to say I think this site is so wonderful, no place else do I know you could share your scary experiences as well as the joys as here! I just want to thank you all for having such open hearts and willing to share!
Rita
Kidney Transplant 9/95
New York Hospital, NY
Dr. Wang

Rita's Page on Transplant Friends- see her photos

Lessons of Hope, Love and Kindness blog
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16312
Registered: 05-2003
Posted on Tuesday, July 05, 2011 - 04:57 pm:   Edit Post Delete Post Print Post

Hi Rita

:-) Thank you for reminding us all that we can feel comfortable opening up our hearts here. Sometimes I hold back because I am afraid to scare others because what may be difficult for one person to hear may not be for another.

When we can talk about our experiences we realize how far we have overcome and then feel empowered that we survived and can actually talk about it.

Transplant centers will tell you about side effects but they cannot explain what it feels like to actually go through the process.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

Mon
Member
Username: Mcorley

Post Number: 1
Registered: 08-2014
Posted on Monday, August 25, 2014 - 09:56 pm:   Edit Post Delete Post Print Post

Hi Everyone,

I currently have a very close friend in ICU who has just had a double lung transplant. He was sedated for 7 days due to complication and is now awake for the first time.

He is extremely paranoid and believes the nurses are trying to kill him. He also is not sleeping and appears to be incredibly distressed. His heart rate reach 220 last night and he believes there is some "con" going on.

What I would like to know if anyone can help me is what can I do ? His mother and I are with him everyday and he has said he trusts us but we do not seem to help.

Will anything help him or do we just need to ride this out?
Hostess Risé
Board Administrator
Username: Rise

Post Number: 18073
Registered: 05-2003


Posted on Tuesday, August 26, 2014 - 02:05 pm:   Edit Post Delete Post Print Post

Hi Mon
I remember when i was paranoid in the ICU. Everyone reacts differently to medications. Since your friend trusts you, I would be very honest with him/her and explain what ICU psychosis is. Perhaps the doctor can explain it too.

What happened to me was, I thought the nurses were trying to kill me and when I told my doctor she told the nurses not to do that. Sometimes if you agree with the patient they might come to terms and realize that it is the drugs that is affecting them and that in and of itself is scary so I really do not know how your friend will react. For me what my doctor said, provided a glimpse of reality and then realized that I was on the drugs that were affecting me negatively.. Since I was a retransplant, I quickly learned to accept what was going on around me. Not an easy task but continue to provide your friend with love and hope.

When a person does not see any daylight, they can start to hallucinate or become paranoid.

Hopefully, this will not last too long but know that it can happen.
take care
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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