Hi all. I’m feeling very down, scared, worried, full of dread, the whole 9 yards. So I thought I would post and see if it helped. I did talk to Phoenix earlier and as usual he’s an amazing help! Holla! Haha
I won’t post test results as I know it’s against rules but the reason I’m feeling scared is because my fiancé’s bilirubin is up to 228 this month compared to 152 last month. Not sure why, he feels great and has more energy than I do most days. That makes it seem a bit scarier I think. His doctor called and left a message today asking if there were any changes and how he felt. He called back and left a message but no word from the doctor yet. His tests do indicate anemia so maybe that’s why and he’s only been off the booze since end of December and I know patience is key but I’m not good with it. I hope you’re all feeling well and if you have any insight at all please feel free to share.
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Mywildlove
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I don't have the answer for you sweetheart. But just want to send a big hug I'm thinking of you both and hope you get the answers you need and it gets sorted.
I expect Katie and Richard can help and yes, isn't Phoenix a tonic? 😎
I won't say try not to worry because, you're bound too.
Thank you so much Laura! I can’t help but worry but I’m trying not to. Yes they are all fantastic and I appreciate them so much! I appreciate all of you! Total strangers being so helpful and kind, it’s not what I expected when I first joined ♥️
Hi Mywildlove,
I wish I had some wisdom to impart. I know that some of my husband's blood work had fluctuations more early on than later.
It sounds like his doctor is on top of things and will be looking into it and doing what needs to be done. It seems to me that your fiance feeling well is a good thing.
Hi Mary, thank you! Do you remember how long things fluctuated for with your husband? I know it’s different for everyone but it helps to hear things like this. Still no word back from his doctor so I’m going to call them today and leave a message. ♥️
It fluctuated for more than a month. His liver doctor said sometimes the liver gets irritated and it might take a while for it to settle, which it did eventually. Most of his other blood work was improving so the doctor was keeping an eye on it and did say if there was the slightest bit of yellow in his eyes or skin to call, but if he felt fine without anything yellowing wait until his next appt.
I was [am LOL] inclined to call his doctor if something is going on and let him know what it is and should we be concerned or what else should we look for and luckily he or his office let us know what to do.
Hoping you hear from his doctor soon and everything gets resolved soonest.
Mine would spike and I was roughly in the same range at one point, I went to 227. The clinicians were not overly concerned but I would discuss this with my Alcohol Counsellor. This was part of the assessment process for transplant and to ensure that the results were not down to consuming alcohol. After a long period it settled down to around 100 and remained there until I was transplanted.
I hope that this helps and hopefully things will continue to improve for your partner, keep following all the advice given to your doctors.
Hi Mark, thank you! I’m worried that they will think he’s drinking again but he’s not. He was scared sober and has no desire to drink, he just wants to live. He has 2 kids, one 14 and one 16, and he wants to bounce his grand babies on his knee one day. It’s all he talks about haha do you remember if you felt good despite your bilirubin being 227? He hasn’t started the transplant assessment and we are hoping that’s a ways off yet. Part of me wishes he could get a new liver, as selfish as that sounds, and the other part hopes he never has to. He’s terrified of the whole thing. It just seems that 6 months after quitting drinking his bilirubin shouldn’t be so high but I guess that’s why the doctor is concerned as well ♥️
They asked the question to rule it out, there are clearly other reasons why it would go up when you have cirrhosis. If I had been drinking, I would have been delisted.
To be honest, I felt terrible during my illness but just took each day at a time, some days were better then others. It’s a question of staying positive and taking all the advice that the doctors give you, along with the medication and dietary guidelines.
I am now 10 months post transplant and I feel much better than I thought possible.
What’s weird is he doesn’t feel terrible at all. He did feel poorly when he flew to DC for work, it took him about a week to feel normal again. His results compared to last month show that his anemia has gotten worse (I’m pretty sure anyway, I’m still learning how to read everything) so maybe that’s the cause. Thank you for your help Mark, I’m glad you’re feeling good these days!
Hi
I don't have the answer but I'm sending lots of healing hugs your way. Love and hugs Lynne xxxx
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