Caregivers, family members of transplant patients

Comment

Comment by Pat Fuller on July 20, 2010 at 4:25pm

I think all of you did your best to help and support Maxene. She was looking for an excuse to leave and seemed to want members to tell her she should. When she didn't get that, she got mad at the group. Too bad. She could have learned a lot from what others have been through.

Comment by Ramona on July 20, 2010 at 3:31pm

Wow, Maxene - I find it sad you feel that way. All I see here is support, not you being chastized. We are supporting you and trying to help you see that the outcome may not be perfect, that you do love him, that we have all been there - I still am. I do EVERYTHING at my house and work 50 hrs a week. I am at my wits end frequently too. No one here has a holier than thou attitude in my eyes...I wish you well - whatever decisions you make...you do have to take care of yourself first and foremost - or you won't be able to take care of anyone else.

Best wishes for a long and healthy life.

Comment by Jan S on July 20, 2010 at 12:46pm

Maxene - I know what you are going thru, and it is hard. I did EVERYTHING in this household for 5 years - I drove 150 miles daily to see her at the hospital for 6 months and I worked 60 hours per week. It will take every bit of energy you have, but in the end you care about him - that is why you can even do it. But with the outcome of my situation - I can look back and see what a big difference I made in her life (and she did tell me how much she appreciated it). I am proud of what I did for her (and to be honest - if I could go back 10 years, I would do the same all over again). Once she became so ill that she needed me 24/7 - she became my life, and now I am struggeling to find the meaning why she went thru all this "crap", and try to get back to what others consider a normal life (whatever that is).
To me it sounds like he has become what I usually refer to as a professional patient - been there, done that. It is horrible - but my wife snapped out of it eventually, and got back to her optimistic and hard working self.
Could also be that you need to talk to the doctors about the medication and side effects.
My advise - try to find someone that can help you out for a few hours every week, so you can get time to do other things. Things will work out in the end, and please don't let this behaviour get in the way of the love and care... you know the song "If tomorrow never comes".

Comment by Wendy Johnson-Askew on July 20, 2010 at 9:36am

Thanks so much for your warm comments. It is so hard. I do not know this man. He was always so kind and caring and now he is mean and hurtful. I know it is the meds and not him but I need a break. We have only been married 2 years and this is very stressful. It is nice to know I am not alone. I am very thankful for this site.

Comment by Flo Berry on July 19, 2010 at 9:54pm

Wendy- welcome to our group. I hope you find some useful information here and also make some friends - I know I have.
About the Prednisone - I've been fortunate that my husband (liver tp-10/07) hasn't had to take prednisone for more than a few months at a time. I learned that his mood would change drastically - it was very difficult to deal with at times. It would bring me to tears but it seems that it would pass.
We did however, talk to a friend who had her liver tp about 6 months before my husband did. She was sick for years before her tp so she had been on prednisone prior to her tp and is still on them now. She told us that she has adapted and learned how to handle the ups and downs. She's learned to recognize the moodiness but really has to work at holding back the temper and outbursts. It's not something that can always be handled and it is just the meds talking. I know from the caregiver standpoint - you feel like you've already got a full plate - overflowing many times - so how can you deal with this? You feel like you're being treated terribly and feel like they are so ungrateful for everything you've done and are doing. It hurts - yes it does! But please keep in mind - it is a side effect of the meds. Find patience from deep down, enjoy the good times with him and appreciate his life. If you can, talk to him during a good time and explain how you feel when it's happening - maybe he'll be more aware and can help you help him get through it.
Hang in there - take care and keep us posted on how things are going.

Comment by Ramona on July 19, 2010 at 9:25pm

Wendy - what type of a transplant did your husband have?

Maxene - a lot of the mood swings (with liver transplant) even out after the surgery. I'm not sure how it works for heart...try to hang in there - take it one day at a time. I know I spend a lot of time crying and venting to my diary...and here, and to my friends...it helps to have support. It is hard to watch them deteriorate. My husband was in the hospital last week and he looked so weak and frail - not at all how he should look at 40 yrs old. It's difficult to watch, and to cope with. Hang in there...as best you can.

Comment by Maxene on July 19, 2010 at 9:11pm

He's listed for a heart but the wait is intolerable. This is not the same man that I met and married. I'm about to lose it. I've tried to be patient , but with his mood swings, I hate to see what will happen when he's on the anti rejection meds after the xplant. At this moment I feel like running away.

Comment by Ramona on July 19, 2010 at 8:09pm

Wendy - my husband is currently waiting for his second transplant. He also has flares of gout. One of the treatments for the gout is a burst and taper of prednisone. The mood swings are near unbearable for both of us. But we both know what is causing it and try to keep that in mind. As Jan said - love them thru it. It's not the person, but the disease or the meds talking - and that is not easy to take.

Hang in there.

Comment by Jan S on July 19, 2010 at 7:26pm

Penny,
I was a caregiver for almost 10 years, and it is exhausting. You don't get much credit, but keep in mind you do it because you care. My caregiving life ended about a month ago - she was waiting for her 2nd liver transplant. But peritonitis that wouldn't clear up ended her life - and also a BIG part of my life. I loved her dearly - and I did everything I could. That is all you can do - try to stay optimistic. The last week in ICU was horrible - seeing her kidneys shut down, and being on life support. Every day I could tell she only wanted me to say it was ok for her to go - and to take her off life support. I remember the last time the doctors even thought she was getting to a transplant - her MELD score was actually 41 (even though 40 is the highest).
Please stay positive - and make sure you tell your loved one how much you care every day, several times a day. Keep in mind you never know what tomorrow will bring. My only regret was that I didn't hold her, hug her and kiss her more - but I was terrified to make her more sick. I hope your loved one gets a transplant soon.

Comment by Wendy Johnson-Askew on July 19, 2010 at 5:08pm

Is there any end to the prednisone mood swings?

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