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Are there any other pre-liver transplant caregivers out there?
Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!
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@rosemarya by brain fog I mean he is forgetful and has trouble with figuring things out that were normally easy for him. He is much slower cognitively. Thankfully he doesn't have the loss of balance or slurred speech. He does tire much more easily and gets cold faster.
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1 Reaction@jodeej, I was told that everybody can experience different symptoms with livr disease. I think we have all demonstrated that here on this discussion group.
I think being tired and feeling cold are pretty common, though.
Rosemary
@rosemarya it’s interesting how we all experienced our liver problems differently. I never really got jaundiced and didn’t have ascites until the end. I did get nauseated but I attributed that to the lactulose, I don’t think nausea was a problem for me when I was just on xifaxan. The HE was awful though. It almost brings tears to my eyes when I remember my confusion and irrationality. I was fortunate though that I was usually very cognizant and lucid and that my HE was episodic and could usually be predicted.
JK
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1 Reaction@jodeej I too tired easily and I was always freezing. I would have pajamas on and a fleece jacket and of course multiple blankets.
JK
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1 ReactionI was severely jaundiced and I suffer from nausea daily. I take domperidone and ondansetron I still get sick all the time. I sometimes forget day to day things and get slightly confused. I am ice cold all the time. I wear t-shirts under my sweats or full fuzzy warm pjs plus warm woolly socks and slippers. I have been on the wait list for 8 mos but was diagnosed after a near death situation Nov 2016.Some days I am anxiety ridden wait I g for the call. Other days I feel guilty knowing someone's death will benefit me. So tired all the time...
@gaylea1 I know how you are feeling. Nine years ago, I was experiencing those same symptoms. Unfortunately, those symptoms are all associated with ESLD. As one of my doctors told me, "You just need a new liver".
It sounds like you had a very critical situation to deal with that led to your diagnosis. That experience is sure to add to your stress and anxiety. Were you sick before that? or was it unexpected?
gaylea, Have you considered keeping a journal? I did and it helped me to get thru my fears and frustrations. It also helped fill the hours when I had no energy to get up off the couch. In order to remain positive, I tried to make notes of something/anything that was a blessing to me. (a phone call, meds stayed down, a ray of sunshine on a co;d cloudy day.....) Now, when I review it, I can appreciate how far I have come. What are some of the ways that work for you to pass the time while waiting?
I hope that your phone rings, soon.
Rosemary
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1 Reaction@gaylea1, I understand the "guilt" that you have mentioned. I also struggled with the same issue. I also shared my thoughts and questions with my pastor. Here is what I learned along the way: There are many individuals who have made the decision to register as organ donors. They have graciously chosen to make their healthy organs available to someone, like you, who needs them after they (deceased donor) has no more need for them. It is a gift - the ultimate gift - the last loving act that a human can do for another.
Hugs and Hope are what I send to you.
Rosemary
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2 ReactionsThank you for such wonderful support. Your words are tremendously reassuring.
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1 ReactionMy illness came as a complete surprise. I fell and then I went into a toxic coma for 10 days. I was incoherent for weeks after that and had complete confusion. I have little to no memory of that time. My young daughter took me home and nursed me back to health.
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1 Reaction@gayleaf It is a difficult condition to live with, for sure. I was fortunate in not being jaundiced and that I only had nausea after taking lactulose. I was always really cold though.
If you were diagnosed in November 2016 why did it take so long to get on the list? Was your MELD too low at that point? If it's about MELD, then 8 months is less than usual before you get a transplant, it takes a while for the MELD to get up to where you become a serious candidate. I was put on the list with MELD 11 I believe and transplanted about 15 months later at MELD 28.
I hope that you do get the call in less time than it took for me, especially since it sounds like you are feeling much worse than I was through most of my wait. Please keep us informed on how things are going.
JK