Back at Mayo....not looking too good

I came back with my brother yesterday due to concerns on his lab numbers and the fact the he feels lousy and is jaundiced, eyes very yellow in fact.


ALT 403
AST 494

Bili 16.3

Im hoping there's no blockage, having tests done this week including biopsy Friday.

Hope all is fairly normal with you folks, been very busy with family stuff and havent been on as much as Id like.

Mae, I'm sorry to hear that. But you know how many complications I've had since transplant (including currently) It could just be the hep C. It came on with a vengeance post-transplant, loving my new liver.

Give me a call if you like. I'm not up to company right now. I'll be at Mayo a week from tomorrow for 3 appts.

Hugs,
Connie

Mae, those are some pretty high lab numbers. I'm worried for both of you. And glad you could pick up and come on down here quickly. I've seen a bunch of articles that after transplant, some with Hep C have a huge spike in labs Viral Load and then it levels off again.

When you have minute, please keep us up to speed. As always, we are here.

Hugs,
Carol

Any results yet, Mae? While Richard is able to have blood drawn locally (as does David), the center that does the transplant wants to be the one to follow up if there are unusual findings or symptoms.

Hugs,
Connie

Hi again, been rather busy, thanks for all your support :)

His biopsy has been moved up to early morning, Fri.  Then the long weekend and the meeting with Doctor on Tuesday for the plan of action.  He feels poorly but is trying to be upbeat, bless his little heart.

Yes David, Connie, I wish he could have had someone pick him up at MGH but I think Richard has some sense of loyalty to Mayo, not sure I could make that commitment (very expensive) but he was lucky that myself and other brother are available as YOU said Carol :).  I have to fly out Monday and will be passing my other brother in the wild blue yonder as he heads here to take my place while I go home for daughter/niece's graduations from college.  Also have to help my younger brother move yet again.

Then depending on the plan, shall see if I need to come back again.

Not much more to report as they are gathering test results and will probably have a powwow by Tues.

Carol, Connie, David, Miz, Sandia as always you guys are right there with the rest of the veteran forum activists and for that I thank you with all my heart, you folks rock!

Many hugs,

 

I just got caught up on the forums. Been busy at work, my boss quit a few weeks ago so more on everyone else.

Anyways, I will be thinking of your brother and I hope the best. Hopefully its either the hep c or something that they can fix.

As everyone said, keep us updated. And remember to think of yourself and keep healthy to.

You are some kind of cool Sis', girlfriend! I hope those men appreciate what they were blessed with in having a Sis' like you.
Be rested, big hugs to Richard and you. themiz

Hi, the biopsy results are in...there is no blockage and the stent seems to be okay

Syxx, why do you say that "hopefully it's the hep C, or something they can fix?"

I would think that if Hep C was the culprit, that would be worse.

As it turns out, it looks like it IS the Hep C and I was praying that it WASN'T. Maybe I'm missing something here. Stinks that this being holiday weekend, he won't see the doctor until Tuesday.

His blood work came back and if he was awaiting a new liver, his MELD is 20 today.
Bilirubin 22.8 INR 1.0 and Creatinine 1.2

ALT 382
AST 469

Also, his cyclosporine is 49 today and is supposed to be between 100-400. It was 29 earlier in the week and they all thought it was a mistake. I figured it wasn't, judging by the way he looks and feels. So when I saw today's results posted, I told him to call the coordinator. He said no so I called myself. Secretary put me on hold and 2 minutes later the person came to phone and told me "oh, I was just going to call you" Hmm....how convenient, I'm beginning to wonder about Mayo after all. Seems like I have to scrutinize everything in order to get them to act. So she told him to up his cyclosporine from 150 twice daily, to 250 twice daily. And she ordered lab work for Monday. Glad I called and not waited til Tuesday.

David, I am going to get with my other brother and together we will tag team Richard and convince him to stick with MGH. He shouldn't feel he needs to stay with Mayo "as promised" for the year. That was something he told them when he was sick, they shouldn't hold him to it. He would have SO much more support up in Mass, not to mention the cost of flying here all the time. After airfare, rental car, meals, etc....he just can't keep doing this and neither can I.

Connie, I'm sorry to say I don't have as much faith in Mayo as I once did. I just want the best for him and it seems he has kinda "removed himself" from the situation, who can blame him. So I will have to be his torch-bearer for as long as it takes.

Thanks for hearing me vent :)

Hugs,

Post Edited (Mae be here) : 5/25/2013 2:39:47 PM (GMT-6)

Syxx, no worries hon, I just wondered if I'm misunderstanding this whole nightmare, is all.

I know you want to best for EVERYONE, that's why we love you :)

Hugs, Mae

"Before kissing off Mayo, be sure to check and make sure that MGH would take on your brother. Then, it's up to him/you."

Well said, Connie!

If you explain how difficult this travel is for your brother, Maybe Mayo will relent about the one year commitment. If you get MGH to take him on. I think it's a toss up as to which transplant clinic is better. I checked in to Mayo, but was too sick to move to FL by myself.

That's a good question Connie, this morning the blood was done at Mayo bldg (Cannaday closed weekends). I don't see that they added the new lab appt to his itinerary and now wonder if she meant to have it done Tuesday at Cannaday per usual. Hmmm.

Yes, definitely will check with MGH first before "kissing off" lol. No disrespect meant to Mayo btw, they were able to find him a liver and for that we are eternally grateful. I guess I'm just feeling his mortality a lot more now....especially after being around him so much, I sense he feels it too. I probably had preconceived and unrealistic expectations for his future. So you just look for a new direction to go, but will take it slow and see where that best road is.

Oh Connie, the dreaded wound vac machine??? How did that go, are you still doing it?

David, therein lies the problem, the proverbial "tossup" LOL, heads or tails?

"Oh Connie, the dreaded wound vac machine??? How did that go, are you still doing it?"

I'm still on it. ): It will come off on Wed. That's all I agreed to--2 wks. max. The wound is about half the size it was, or more. It just has to be small enough for a skin graft. I hate the darned thing...hurts my back lugging it around...but it really was necessary and prevents infection.

I'm sure that they didn't make a mistake with Richard's blood work. But you should check and see if the Tues. blood work should be canceled. I have blood work scheduled for Thurs. and June 5th. I normally only need it once a month, but I have 2 doctor visits on Thurs., after labs. So I need to see if whatever is ordered for the 5th can be put on the 30th. I'll be calling Tues.

How far out from TP is Richard now?

I had the same illusion...that I would be so much better after TP, even with the hep C. Well, you know how that turned out. And the hep C was back with a vengeance after a month. But 18 mos. later, I'm still here.
I've come to the conclusion that Mayo is keeping me alive. I should have died in '06. So I've had 7 yrs. I wouldn't have had otherwise, though not quite the quality I was hoping for.

We have an owl in the back in the surrounding woods. Sometimes he perches on the flagpole in the courtyard out back...big ole owl. This morning, that's what greeted me when I woke up---whoo, whooo. Very loud. I opened the windows to see if I could spot him. I couldn't, but the weather is so nice that I still have the windows open. Another hour and I'll have to close them and turn on the AC. But I love the greenery and wildlife...that's where I see God. And that's worth living another day to experience again.

Just as soon as it is safe, push for treatment of his hep C. Don't let them keep putting it off, like they've done with me. Or maybe, wait until you go to MGH, if they accept him there.

Hugs,
Connie

Mae I read your post, my total bili was like 36 before they unclogged my bile duct. I felt fine, was just tired and brown.

I have read of some people having levels in the 40s. It took 4 months to fully clear up in my eyes.

Post Edited (SyXx) : 5/28/2013 3:36:40 PM (GMT-6)