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Comment by Debbie & Eric on February 24, 2009 at 9:31am

Eric has been doing better about how he talks to me, since i have read him some of the blogs that i have wrote. Now he is always asking me if we need to talk about anything, he is more opened up to me since then, and I thank God and all your answers to me because it has really made him stop and think before he starts on me. I have met this one guy on here that we e-mail back and forth that Eric has agreed to talk to but eric has not called him yet but I know in my heart that it will happen, and I thank God everyday for him (Steve) you know how you are, becuse with out you and the other people on here I would not have made it this far. So a BIGGGGGG thank you and God bless you all.

Comment by Julian on February 23, 2009 at 5:44am

Debbie,
I am new at this forum but so glad i found it, i am always grateful to meet others to talk to, i know exactly what you are going thur, i have been there with my husband, my husband rcvd a the gift of life, a liver transplant on 02-20-07, 2 yrs ago this past week, we are so grateful to the donor family and have written them many tiems and hope one day to hear from them.
when my husband became sick back in 2005, he was diagnd wiht liver cirrohhiss, he was haveing stomach swelling, and we were told that his ammonia level was like three time what it should be and that if he didint get a liver tx he woul ddie, he was referred to methodist hospital here in houston, tx, he went thru extensive evaluations, then was placed on the waiting list, 16 months laters, he rcvd a call from the tx team stating that they had a liver for him and it was a perfect match...
i know the times before tx, ws the hardest i think i can say , as like yoiu say , he was on prednisone forever and that was the mood changer for him,and so many time, he would just cuss me out, literally talk so ugly to me, which he never did before and i dont know how many days i would just pray for better days, and he would hurt my feeling so bad but i did attend the classed at the hospital, that educated us on these things to expect, yoiu dont nee pyshco. help, its not a mental probelm, its just we all have to be patient, pls check with your hospital to see if they help with counseling, or some classes, i know that help me alot . i also had to stop and take a breathe sometimes, it was really hard but we made it thru it and yoiu will too, sometiems it seems like you dont knwo what to do , but God will lead yoiu thru it. i promise, he did us..
if you need to talk to anyone, pls email me at:
mssara1962@yahoo.com

have a blessed day

you all are in our prayers.
sara and Julian in Texas

Comment by Debbie & Eric on January 22, 2009 at 5:50am

Thanks Vicky
We are going to go and talk to the phycistist when he goes back in the hospital. He has been doing alot better since I finnally lost it and read him some of what I have put on here., and he has agreed to get help. So far he is not on steroids yet, I do talk to people at church they all tell me that they understand but they don't I know they mean well. But I am haning in there and just taking it one day at a time. So far no more mood swings he sets down and talks to me, something I know is very hard for him to do.

Comment by Joe Persichetti on January 19, 2009 at 6:05pm

Dear Debbie,
My husband Joe had a heart transplant four years ago at Emory Hosp in Atlanta. I can so relate to what your going through and to the comments by Neil. We struggled the four months he was on the list. The depression and the mood swings were horrible along with the fear that he might not get a heart. As Neil said after trans. was no walk in the park either. Unfortunatley, it does get worse before it get's better. The side affects from the steroids are pretty hard to take. I tried to deal with his foul moods and depression by myself. But my kids knew things were bad.There was a point that I was ready to walk out the door but I did my best to hang on and prayed for better days. I know this is not what you want to hear
BUT...... there is a light at the end of the tunnel. As time went on and the dosage went down he was easier to live with. Today he is the sweet loving man I married forty years ago.
Debbie, if there is a mentoring program through your hospital I urge you to ask for a mentor for your husband and for yourself. My husband and I are mentors through GTF, Georgia Transplant Foundation. I wish I had known about the program when I was desperate for help four years ago. Transplant is a difficult journey and we all need help to deal all the stages. Ask for help. Surround yourself with family and friends who can support you. Talk to the doctors and coordinators. Find out if there is a support group at the hospital or at your church.
And keep posting here. This is a great site to find the support and info you need.
Best of luck to you and God Bless you both.
(Big Hug)
Vicky

Comment by Debbie & Eric on January 12, 2009 at 7:12am

Good news, I had a mental break though with my husband. I got to the point were I could not take anymore and I got him to sit down with me in front of the computer and read to him some of the blogs that I have wrote and it really hit home. He grabed ahold of me when i was done reading and he cryed in my arms and said over and over that he was sorry that he did not know that he was being that selfish., and he has agreed to see the phycoligist when we go back to the hospital. He is now helping me around the house some. I just wish I would have done this sooner but i did not think the time was right but he finnally got the point.

Comment by Debbie & Eric on January 9, 2009 at 6:59am

Thanks everyone that posted to my blog, but I have tried more of that except the group thng, I know that he will not do that because we (me and the social worker) at the hospital has tried to get him to talk to people that has been though the same thing. I just sat there and cried because I really wanted us to talk to someone but he is just so closed minded, that he thinks that he don't need anyone. I just don't know , this is the only place I can talk and people does really understand me. I want to thank everyone that has responded to me it really has helped me alot. If it was not for you guys I don't know what i would do., I don't know you but I love you all for just being there for me and listening, maybe one day I can do something for you and help someone else that is going though the same thing.
Thanks again and God Bless you all.
Debbie

Comment by sandy l spanier on January 6, 2009 at 11:27am

Hey Deb,
My husband went though the same thing. I donated the kidney and he was the most ungreatful person ever. After 11 days his kidney stopped working- He was back in the hospital-they stopped his meds and put him on different stuff and it started working again 1 1/2 months later. He was awful to me and the kids. It was like it was only happening to him. We left and told we wouldn't be back until he could be nice and not selfish. It worked , but sometimes he goes back to the part in his life and has to be reminded that it happens to the whole family not just him. This has been 2 1/2 years now! Tell him what you want, cause he doesn't know.
Sandy

Comment by Neil Willens on January 5, 2009 at 6:21pm

Hi Deb,
Keep in mind that we, as transplant recipients going through our ups and downs really do lash out at those closest to us. Don't mean to be cruel suggesting that we only hurt the ones we love. For the first 8 days post op, I was on such a high steroid dose, I have complete amnesia of that time, but my wife and other family members and friends who visited thought I was definitely off my rocker. I must have been watching all war movies the day after my transplant, which was D day. In my mind, I was a POW with Nazi docs doing medical experiments on me. After I pulled out 2 lines, I was restrained, but remained highly agitated. At 5 AM, my nurse phoned my wife, who happens to be an OR supervisor, to see if the sound of her voice might calm me down. When the phone was put to my ear, I said "Don't say anything; they're listening. Bring Nikki (my large and every faithful and protective Alaskan malamute. He'll help break me out. Nobody will argue with 85 lbs of fangs and muscle." My wif'e simply cried.
While getting adjusted to living on steroids and all that medication in the weeks post op, I made my wife furious and each time, in the next hour, no matter how furious I'd been, I apologized for my behavior. I remember at one point, she walked up to me with tears in her eyes, grabbed me by the collar. We were practically nose to nose and she said: "If you don't stop this behavior, you're going to need more surgery and when that happens, I'll stand on your O2 line." She went on to tell me to pick a word, any word, because when she said that word as a signal, the only think I could do was to just shut up and go to our bedroom and wait there until I apologized. That word was "Damn!" It worked and then sometime down the road when I complained about her using our signal word, she said: From now on, when I say something and you disagree, the only appropriate response is "yes, dear." You know, to this day, where we do not have such issues any more, when I want to be funny and she is asking me something, I still say "yes, dear."
This is an issue you should bring up with the psychiatrists or psychologists who are a part of your transplant center's team treating transplant patients. You need not go through this alone. They are professionals and should be able to figure out what is erratic behavior caused by medications and which matters may require some therapy that will temper his emotions. What you bring to the equation is patience and the kind of strength that will enable you to tell him to "knock it off" until he is ready to act more like the person you married. There is also likely to be a transplant mentoring group affiliated with your transplant center. When he is well enough, you can go to these periodic meetings together. There is a group peer dynamic that will help him and by modifying his behavior, this will help you.
Good luck. Take deep breaths, be understanding up to a point and then tell him to knock it off.
Neil

Comment by Michael Strane on January 5, 2009 at 12:16pm

Debbie,
Take it from me, unfortunately, the mood swings are par for the course. Between the meds screwin with your system, and the stressful traumatic situation you (meaning your husband) are in, you really feel powerless. As for the depression meds, I had some luck with Lexxapro for my night terrors, unfortunately these meds are not sn exact science and it could take a while for the doctors to get the dosage right and for the med to build up in your husbands system to make a difference. I had the same problem, my mood and emotions were all over the place before and after my transplant. Honestly, they still are.

Take care Debbie, I'm sorry I couldn't be more positive or give better advice. I one thing I can say is this, I know it help the loved ones that were taking care of me - take care of yourself, take time for yourself, because if you don't take care of yourself, you won't be able to be there for your husband. Deep down he appreciates it, I know I did.