HealingWell
Search Close Search
☰

Husband is Officially Listed

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/26/2012 4:34 AM (GMT 0)
Hi Everyone,

It's densgirl I'm still having computer problems thats why I don't post often.
My husband is officially on the TP list. His MELD score is only a 9 until his tumor reaches 2CM he can't get the exception, right now it's 1.7CM Anyway so much has happened. He fell a couple of weeks ago and shattered his wrist. Ended up having surgery this past Monday. He's had more bandings. He currently having tremendous joint pain all over. Is this common? And some acietes, was put on Lasix and Spirolactone
We go on the 21st the a mandatory Transplant Class and we attend a TP support group as often as we can. Life is such a roller coaster, feeling a little overwhelmed tonight and we only just begun.
Posted 5/26/2012 4:52 AM (GMT 0)
Hi densgirl,

Great news that your husband is listed. 

I hope that his joint pain settles down for you both.

Good about the TP classes and support group.  Haven't been through it, but knowledge is power.  The more you know the better prepared you can be...but as you mentioned as have others, roller coaster.

Keeping you and your husband in my prayers tonight.

Emma

Posted 5/26/2012 8:34 AM (GMT 0)
Congrats on your hubby being listed! HCC tends to grow quickly, at least it did in my case. So it shouldn't be long before he gains those extra points.

He should ask his doctor what he can take for the joint pain. I never experienced this--not related to liver disease. I'm sure acetaminophen is okay for him to take, but he may need something stronger. If he's falling, it may be wise to get him a walker.

Here's a link to my blog about my pre-transplant experience, starting with the class:

https://www.healingwell.com/community/default.aspx?f=25&p=5&m=2109357

Bear in mind that Mayo is very, very thorough in their evaluations. Not all centers require everything that Mayo did. It took me about 6 wks. to get through it all. Just as I thought I was done, they would throw another test or consult or requirement my way.

Good luck!

Connie
Posted 5/26/2012 9:51 AM (GMT 0)
Hi densgirl,
I am glad that he is listed. But I do hope the tumor does not grow any more. I was just delisted after 7 years,because nothing has changed and my meld has not gone beyond 10.
I am dealing with encepalopathy ,really scarry at times. I am so fortunate to have my husband. I did have joint pain all over they told me it was fibro. so I was put on another medication. It did work, now I just have arthritis. And my ankles and legs really swell at times . I take spiranolactone. My legs look fat and my veins are showing more every day,and about the falling I have fallen more times than I can count the last one was when we went to clinic. We stayed in motel that had marble floors in the bathroom so what do you think happened. I flew. I really hurt. but thanks to god . No broken bones.even though I was told a couple years ago my bones were so brittle I could break a leg just walking. Maybe Im here for a reason.
Iam just so tired. What can it be.

Good luck, be patient with hubby it hard on this side

lavendar june
Posted 5/26/2012 1:39 PM (GMT 0)
June, unfortunately HCC grows rapidly. It does not just appear and stay at that size. This is what is so dangerous about it. It needs to be diagnosed and treated promptly. It cannot be over 5 cm for a single tumor, if one is seeking transplant. And the larger the tumor, the more chance of it metastasizing. I know you are trying to make Densgirl feel better, but the reality shows that this is serious and can't be dismissed.

Hugs,
Connie
✚ New Topic ✚ Reply